Think Like A Doctor - Fibromyalgia and Other Chronic Pain Syndromes

		• The Wastebasket Disease • Pain without a reason • Importance of mental health	Have you cured fibromyalgia or chronic pain? Think Like A Doctor readers need your help! Click here to contribute!
					What's this?! Play the Diagnosis Game and test your clinical skill.
		• The Breast Implant • Routes to a permanent cure • All this and more below ...	TIPS: Believing in yourself, the components of a holistic approach, what to show your doctor, helping others.

The Line Between Pain and the Perception of Pain ____________ Why Your Body Likes You to Feel Good About Yourself	Not too long ago, I was in the family medicine clinic with a boatload of patients to examine and present to the attending physician. Usually, before the doctor enter the patient's room, she grabs the patient chart from a chart holder affixed to the wall just outside the room. It was time to see the next patient, and I had a ton of patients to get through that afternoon, and as I walked up to the next exam room, I noticed that the chart barely fit into the holder. By that I mean the thing was huge, bulging at the seams, with literally thousands of notes, lab tests, and forms. Now, given a chart of such bulk, I was inclined to expect the patient to be very old, like 95. I walked into the room, lugging the patient's chart in tow. Truth be known, the patient was in her late 20's. I checked to see if I had the right chart, and must have looked like I had walked into a brick wall. The first thing that came out her mouth was, "I am a bad patient." Of course, I told her that she wasn't a bad patient. Wouldn't you? After a long history, it turns out that she had been diagnosed with every chronic, ill-defined disease there ever was: fibromyalgia, chronic back pain, chronic fatigue syndrome, and several other conditions I hadn't even heard of then and can't remember now. Doctors sometimes call these maladies wastebasket disorders. Why? Well, for one, the diseases have non-specific symptoms (e.g., a severe pain there, a nagging ache here, a constant headache, overwhelming malaise, tiredness, etc.) and are not easily characterized as some other disease. Wastebasket disorders are unusual. Physicians are almost always able to group most patients into certain disease categories, such as infection vs. vascular disease, based on signs (from the exam) and symptoms (from the history). Patients whose signs and symptoms don't fall into any disease category are classified as having the same disease - the wastebasket disease - no matter how different the signs and symptoms from one patient to another. Fibromyalgia is an interesting case example. Fibromyalgia patients are typically treated by medical specialists called rheumatologists. The rheumatologist that taught me about fibromyalgia wrote the description of the disease for the World Book Encyclopedia. It's one paragraph. Maybe you could read it for fun one day. But the disease is complicated and not fun to have or treat. One common them with fibromyalgia is that symptoms are not consistent with physical signs. Consider a patient whose hand was just cut off in an industrial accident and who is complaining of severe pain to the point of passing out. Here, the physical signs - an arm from which a hand has been severed - are consistent with the symptoms - severe pain to the point of passing out. Next, consider a patient who complains of pain so severe that he feels he is going to pass out but who has no abnormal physical or lab finding at all. The latter case is sometimes characteristic of patients with fibromyalgia. When the typical physician sees no abnormal physical signs, no changes on X-ray, or no weird lab results in combination with chronic complaints of severe pain, they're inclined to think that the patient is lying (so called, malingering). Thus, many such patients win referrals to psychiatrists. Another reason for the referrals to psychiatrists is that mental illness (e.g., major depression or debilitating stress) is more often than not co-morbid with fibromyalgia. You might be tempted to argue that fibromyalgia causes mental illness, but I would argue that, in most cases, it's the other way around. The relationship of psychological imbalance to fibromyalgia is illustrated by an attractive young woman that I examined in the rheumatology clinic one day. The setting happened to be the Veterans Administration Hospital, where veterans more or less receive free healthcare for life. Our patient had been diagnosed with fibromyalgia. I always like to ask patients what they think the root of their medical problems are, so I asked her: "Why do you have fibromyalgia?" Her answer was immediate - jumping out of airplanes when she was in the Army. Now there was no evidence that jumping out of airplanes had caused any physical damage; there were no reports of broken bones or dislocations or sprains or anything else. But after many jumps, her systemic (generalized) pain was constant, and she was discharged from the Army. Since retiring, if you will, her pain only worsened. Far more important than any physical trauma that arose from jumping out of planes was the fact that she hated doing it. She really hated doing it. To make matters worse, her father was an Army sergeant who hated her because she hated jumping out of airplanes. The bottom line here is that her experience in and with the Army was highly stressful. The stress manifested itself via a syndrome of pain not proportionate to her physical condition. I would argue that she wouldn't have fibromyalgia if her experience with her profession and family had been different. Chronic stress can lead to chronic physical disease, or at least the patient's perception of chronic physical disease. Even self-esteem is an important psychological predictor of chronic pain and fatigue syndromes. For instance, I have seen several patients with breast implants that also have fibromyalgia. Assuming that most women get breast implants because they would feel better about themselves if their breasts weren't small, I guess there are several phenomena, none of which I know to be true, that could explain such an association: 1. coincidence 2. fibromyalgia causes small breasts 3. breast implants cause fibromyalgia 4. something else causes both small breasts and fibromyalgia 5. some women who elect to receive breast implants have lower self-esteem and are more prone to stress and complain of pain I don't know the answer. May I wildly speculate? Number five. Don't write me hate mail, though. All I would suggest is that there are certain personality types more prone to stress and the desire for bigger breasts - perhaps the reason is self-esteem - but I'll leave further speculation to you. My point here is that how you feel about yourself affects how your body feels. So, what's the solution to all this? Well, certainly improvement on the mental side of the equation can only help. A clinician told me a story once about a patient of hers that had debilitating fibromyalgia. Over time, the patient began to focus on living a healthy life. Eating well, exercising, stretching, meditating, and relaxing all became her hobbies, and she dedicated herself to them. She found a more satisfying job and bolstered her friendship network. Eventually, there was fibromyalgia no more. I'm sure that all cases don't turn out like this one, for many patients dramatically improve the quality of their lives but with little success in diminishing chronic pain. I'll bet, though, that such changes can only be good, and even sufficient sometimes, in combating fibromyalgia and other ill-defined, chronic pain and fatigue syndromes. Becoming happier and healthier isn't everything, though, and takes a while. In the interim, a variety of professional interventions may help, including physical therapy, strength and cardiovascular training, alternative medicine (especially acupuncture, yoga, chiropractic techniques), and, last but not least, medication. As far as medication goes, most people think of pain medicine. That's OK, because medicating for pain is not all bad. Narcotics, such as Fentanyl, Percodan, Percocet, Oxycontin, and other morphine-containing or morphine-analog drugs, are beginning to be prescribed for more and more chronic pain patients. The idea is that narcotic dosings in settings of chronic pain can be controlled such that patients do not develop tolerance, a condition that occurs when the same dose of drug doesn't help anymore. But in many situations - dare I say most situations - drugs are not the whole answer and may not be needed at all. Too many times fibromyalgia and chronic patients are drug seekers, moving from doctor to doctor to fill a larger prescription. Taking control of your life and combining real lifestyle changes with occasional drug therapy will not only improve your health, but will also improve your relationship with your doctor.

		WHAT WE KNOW AND WHAT WE DON'T Look at the two middle fingers above from the same person. What do you notice that is different? The finger on the bottom is fully extended, but was damaged by trauma, and is a source of chronic pain. Misalignment of bone, scar tissue, and perhaps nerve damage contribute to dysfunction and pain. Fibromyalgia patients, however, often have no physical explanations for their perception of pain - there are often no spine abnormalities or nerve function study deficiencies that modern science can detect. The pain, or at least the perception of pain, is still real, though. Physical reasons for fibromyalgia syndromes will one day be found, but until then, neither patients nor doctors should dismiss the disease as something that's not real.


THE SPINE AND PAIN The spine protects the spinal cord, which is the primary extension of the brain, allowing sensation and movement to be conducted throughout the body. Spinal misalignment or damage can lead to chronic pain. Procedures such as laminectomies are designed to alter the bony spine to reduce pressure on the spinal cord and the nerves that emanate from it. The person above suffers from scoliosis (curvature of the spine) and manifests both lateral curvature and rotation of the spine, causing what is known as a rib hump. Eventually, many such patients suffer from chronic pain due to collapse of vertebrae or nerve compression. Stretching, strength and cardiovascular-based exercise, and proper posture often help to prevent pain.

Fibromyalgia is characterized by subjective reports of pain that are not proportional to physical signs. Patients with fibromyalgia and other chronic pain syndromes are often distrusted by doctors and may end up switching physicians frequently. These diseases often have an psychological component. Thus, they are often best treated with healthy lifestyle changes, especially those that lead to decreased stress and increased self-esteem. Drugs may help, but are generally only a small part of the cure.

What You Say	What Your Doctor is Thinking
I need drugs for my pain!	How many doctors has he seen? Is he a narcotics seeker? Is he leaning too heavily on drugs as a way to get better?
I hurt all over.	What could be the cause of the pain? How do I fit this into a disease category?
I've tried everything - nothing seems to work.	What self-improvement steps has he made? Is there a source of past or present stress that can be relieved?
I am a bad patient.	Wow. Self-esteem issues are apparent. How can I help him?

1. Fibromyalgia and other chronic pain and fatigue syndromes and real diseases. The pain and fatigue you feel is real. Believe in yourself no matter what doctors or others may say.

2. Take a holistic approach with your doctor in treating your diseases. Join support groups. Be open with your friends about your condition. Take steps to remove stress from your life and improve your self-esteem.

3. Demonstrate to your doctor that you are making efforts to relieve pain other than taking drugs.

4. Aside from helping yourself, become passionate about identifying with and helping others.

_______________________

How have you fought fibromyalgia or chronic pain? What do your doctors do well or poorly?

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Excellent report. Would like to know more if possible. On this syndrome.

Grant Powell

-- Grant Powell, July 12, 2002

my boyfriend pass out alot when its really hot out or the ozone is bad could u tell me why that is he said theyve taken test on him and has found nothing to cause it can u help me

-- mary, July 25, 2002

I am in constant pain. I don't even sleep at night because the pain is so bad. My doctor gives me Darvcet N and they're only glorfied aspirn. He hardly ever give me those.One doctor in my hometown gave me Vibrprofen and ti did wonderful.I could do just about anything. This is a very real disability. I have Scoliosis also. This pain is no joke. Just sitting herenow typing and feeling like I'm tearing apart. Whatever advice you can give me please let me no.

Sincerely,

Betty

-- Bettye, October 9, 2002

I have been having severe headaches for over 5 months and they continue to get worse, to the point of debilitating, and I have them all day, every day. I have been given a variety of pain medication, none of which is working for me (i.e. imitrex, amerge, ibuprofen, midrin, lortab, fiorinal). I've gone to the primary physician several times, had all the tests performed, and saw a neurologist. The neurologist was the last doctor I saw and I got the feeling she didn't believe I am in as much pain as I say. THe pain was so bad my primary had me go on disability from my job. THe neurologist has sent me bact to work and my symptoms haven't changed. It takes all I have to get through the day. I need help!

-- Melanie, November 20, 2002

when i was younger i had got into a car accident. years later i had horrible pains in my spine. i would move a certain way and lock up, i was an active teenager. then finally around 18 years of age i couldnt stand th pain anymore, my knee strted swelling up to, i guess from standing all day long at work. i went to a orthopedic and he told me the curveture in my back was what giving me problems. i went to a chiropractor. he would put these electric pulsating pads on my back, near my sholderblade. well, my spine did feel a little better after the therapy. i started getting bad pain in my back, left shoulder. it was a very nagging pain. well as time went on the pain got worse. i started getting spasms once a day. my sholder would stick in the air(as im writing it is starting to spasm, im getting very used to it, its become a part of my life).well i went to doctor after doctor. they gave me a perscription called soma,what a reliefe. it took it right away, for about 2 months i had soma. i never became addicted. my doctor didnt want to give me the prescription anymore, he told me he wanted to give me a shot in my back. i stopped going to him. well this continued, i wanted it to be fixed. the docors told me they are triggor points or fibromyalgia. they said its a nusence thing. one qestion i would like you to answer is, why do i have these knots in my back?does this disease cause this? when i get my mother to massage it she is horrified by these knots . she has to put all of her weight onto her elbow to try to get them out. well i just recently went to my family doctor and she told me to stop the muscle relaxers and she started me on zoloft, will you write back and tell me what you think? thank you. kristn

-- kristin jordan, November 23, 2002

I read your article, and feel you have some very good points. I had a very bad experience this last week, that has made me feel very alone, and have a great disliking, and very little respect for Dr.'s I have had extreme lower back pain, along with some other distinct sources of pain. I could mainly only concentrate on the back pain, because that was the worse source of pain. I had been to two Dr.'s in town who told me I needed an MRI, and xrays. Talking about feeling powerless, like I had that kind of money in my account to just go write a check for all this testing. Then they get angry, that you have no insurance, and cant provide them with the tests. I ended up in the er room, and was diagnosed with Fibromyalgia, and Chronic MYofacial pain syndrome. The Dr. at the er warned me about what was to come, and it di without disappointment. I had a Dr, put me on zoloft, and tell me it was all due to depression. I asked for something for the pain, and he got extrememly hateful with me, and told me there was no place for opiates in the treatment for FM. I don't care if it's an opiate or whatever, I want out of pain. I have always been a very upbeat professional, with a very optimistic attitude. Needless to say I informed him, I disagreed, which angered the God even more. He stated er doc's give you pain meds to get you out of there, and then you become someone elses problem. My intent isn't to become someones problem, I just want a little relief, and please don't be one of those Dr.'s that thinks you can read minds, or that everyone is drug seeking. Some of us have real pain, and don't deserve it. Thanks for letting me vent Sweedee62@yahoo.com

-- Dee, December 10, 2002

I do not like your hollier then thou approach to pain. Let me tell you about getting hit with two bullets, having a failed lumber fusion, finally getting my pain controlled after 13 years, only to hear some VA doctor tell me about some new VISN which switched me to mscontin 30mg x3 at a 75% strength from oxycontin 40mg x 3, which, you as a health care pro, should know is effectively like taking 200% less pain medication then was required. Yes, I was doing so well on the oxycontin,that I was finally taking control of my life, like shopping for myself, my wife, being a better man and citizen, and; I started caring about others, doing charity work,went back to my hobbies,and, being a nice person, etc.Now, I am housebound again. So, I will need aid and attendance at a cost of another $2500 plus a month to this country.Lady, I still have a nonunion with deformity from an AK round, which shattered the lower right fibula. I got hit with a 12.7 round through the thigh and hip in the same leg, which just does not feel great enough to dance. yet, I am happy, as I am alive. I have a grade IV loss of motion segment of the lumbar spine with very severe pain. I do not feel sorry for myself, as I feel very fortunate to have lived through MACVSOG. I am blessed with a lovely wife, who I do not deserve, when pain makes me so angry and short, I say mean and terrible things to her. I feel terrible about the things I have said to my wife. On oxycontin, I was almost human, had a wife, who could count on me to cook, do many things around this house to make her life easier for her. Now, I am back to ground zero. I may loose my wife, but; I will never stop thanking God for letting me live. Yes, pain will put me in bed again, but; you nor anyone can beat me.

-- Jon C. Potter, December 27, 2002

I agree wholeheartedly with this report. I am a psychiatric nurse with fibromyalgia. I was dx 4 years ago at the onset of menopause--an additional stressor, both physically and mentally. It was the last straw in a life filled with stress--from family, abusive husband, and often abusive profession of nursing. I thought I was super woman and could overcome anything. When menopause hit, it floored me. I have tried very hard to de stress to deal with the fibromyalgia. I now work only part-time, I got rid of abusive husband, and I have tried to hook up with a therapist. It has been tremendously difficult to find any type of therapist that will help to boost self-esteem, many are very passive and some get downright aggressive beating me (emotionally) when I am down, in a quiet ,tacit way. I gave up the idea of ever finding a strong advocate for me. I have to be my own advocate. Massage therapy, exercising, and being with kind people all help a great deal. Taking tinest amount of Xanxa no more than 3 times per week helps me to sleep if I wake up in middle of night. I do think that along with the emotional component there is a definite physical component to fibro. I mean a real deficiency in the spinal area, most probably a kind of compression that causes the pain in neck and lower back. I never had lower back pain in my life and when I sat down one day and it pained me, I knew something was terribly wrong. It was shortly after that that I was dx with fibro. There is a guru rheumatologist in Newton, MA that makes big money from fibro pts. Writes books and tries to sell them in the office. He sees them once, orders meds and that's about it. Tremendous scam operation. He dx me and told me to take anti-depressant. Fibro has absolutely nothing to do with rheumatology. More neuro surgerical interventions would be more appropriate and maybe helpful. An MD in N. Carolina was successful in treating pts by drilling hole in brain stem. He is now under investigation. I wonder if it is because he was threatening to the hold these other specialists have in the fibro money pit. I truly wish that there would be an advocate for fibro to come forward from the celebrity ranks. Perhaps then there may be some direction, some hope for treatment.

-- Lidia, January 8, 2003

I have severe lower back pain. My curve in my lower back is very deep.I can put my fist in the hole of my back.I have trouble sleeping in the wee hours of morning when pain is worse.I told my Dr pain is now getting worse. I have diabetes and hb pressure.My pain is from middle to lower back.Should I go to back Dr?

-- Anonymous, January 18, 2003

I have been having severe back pain for 7 months, due to a compression fracture back- L1 and L3. Did not take pain meds before that except for very few times for cluster/ migraines, most times handled with injection not meds.I take oxycoton AM only and percocet PRN. My pain, mamagement doctor wants me to always take oxycotin because of being TR, and keeping it my systom. I didn't take it a couple of times,to see how I could cope, did not do well. informed him ,that is when he told me he wanted me to take it always until he felt cpmfortable to ease me off of oxycoton because my pain threashold can gets so high, I have to be hospitlised.Ending up with several hours of pain meds injections to get back to pain free.I have had a vertebrplasty, 3 epidurals,4 MRI's bone density, bone scan,DVT test,neumorous X-rays, CT's of back, also affects my legs, both, but especially left one. Knee x-ray, so much blood taken, I am surprised I have any left.I have complete faith in my pain doctor, he has been great through this horrible ordeal I have been through. Probably other test, I just can not recall at this time.Needless to say, I am ending up in depression and now I am finding myself passing out, when driving I can feel it coming on and pull off the road. At home, my husband says I just stop talking for a short time. I feel like if I were two electric wires needing to touch to make a good connection, the two wires are not meeting, like not completeing circuit. I have been to my doctor so much and I am no embaressed to go as well as money is getting to be a problen. I have missed so much work, I go to work when I know I should not.Sometimes I just can't or have been in hospital. I have been with my company 23years, and my job is not physical, but I am 5 years from retireing and I do not want to mess that up. But now this new thing of passing out or whatever it is, it makes me think of petit mal sezures. I was wondering if taking meds for a long period of time could cause petit mal sezures. I have been told I have fibromyalgia. My bones, especially in tops of both legs, my spine between shoulder blades, and my arms have been very sore and throbbing. I am almost at my wits end. I don't know what to do or where to turn. As I mentioned before , my pain doctor is awesome, I follow all his directions, taking meds the way he prescribes.He said I may be on meds the rest of my life and may have to have epidurals on a yearly basis, several a year. Dont like the sound of that.But again ,my trust in him is complete. All this pain is causing my blood pressure to be very high. Bottom # up to 130. They just can't not find out what is causing the pain and I am tired of going through test.I just do not know what to do and now this new thing of passing out. If you could shedd any new informatin, I would be soooo greatful. Is fibromyalgia a way of labeling something they don't know the cause ? I am so tired of hurting and so tired of waking up every morning having to take pain meds to be able to move. Sorry for my life, of pain history, maybe this has been wasted time of yours and mine but nothing hurts to try.If I have wasted your time , I am truly sorry. Just going down every road.

Any input would be appreciated.

-- Patty B.Feb. 2003, February 15, 2003

I am in my second bout with fibromyalgia with a remission of 8 years in between. The first followed the loss of my dream job and the second followed a horseback riding accident that nearly killed me by breaking my shoulder blade, 8 ribs, punctured my lung and cracked two vertabrae in my back. I am in pain-hell and cannot get a doctor to give me enough of anything to help me. I have been doctor shopping which I know is wrong but I am desperate. When you hurt as bad as I do you would eat shit if you thought it would help. I have been to the orthopedic doctor, who diagnosed degenerative disk disease and moderately severe arthritis in my hip and neck. He referred me to a rheumatologist who told me it is was my family doctor's responsibility to treat my pain. Talk about being a coward! I have had all the scans and tests and have jumped through all the hoops to show that I am sincere.

Apparently, there has been some sort of DEA crackdown in my city. The fact that each doc I see refers me to someone else actually forces me to doctor shop. They just want to put the onus on someone else. I am at my wit's end. I cannot work and I am losing my farm.

Vicoprofen is the only pain pill that helps me and at the most I might need 4 a day. However, I am made to feel like a criminal by asking for them. I don't use them recreationally, I just need them for pain.

What can I do? I have contemplated all sorts of things, both legal and illegal, and each day I wonder what I will be driven to next. Help!

k.

-- Karen, February 18, 2003

i got diagnosed with fms last november.now for about 1 month i have headaches so bad that i take tramadol (ultra) and ib uprofen at the same time and it still don`t help.at times it get so bad my whole face looks like its swolled upand i can hardly see out of my eyes.please can u tell me what to do ty

-- inge, February 27, 2003

The biggest danger to someone with chronic pain is there are so many diseases that may be overlooked. Having the FMS diagnosis, brings us to a screeching halt, when it comes to diagnostic measures. I have a message board and over the course of three years, we have had diagnoses of Lupus, MS, degenerative spine disease, cancer, mycoplasma bone infections, chronic Epstein Barr mono, severe viral damage to the heart and organs,and Lyme. As you can see, to tell someone to just go do stretches and think positive could dangerously impair proper care. Some do heavy drugs. Then the syndrome of mixed symptoms begin. We never know if its the drug interactions or the disease.

I just wanted to point out that if this serious ilness could be "thought" away, WE WOULDN'T HAVE IT!

I do agree though that some have less severe symptoms, so that could be the reason some do get better. I have had remissions lasting up to 5 years. I also have alot of spine damage for no reason. Our message board is full of people who finally find a doctor to address the spine problems. Again, you have to find the right doctor who understands that there is more to this than most doctors realize. None of them have much training at all.

-- been there..., March 21, 2003

I have fibromyalgia and recently I noticed that tanning completely relaxes me and helps with the depression. The heat feels wonderful for my muscles. Even if you are worried about skin cancer, you can slap on some sunscreen and see if it helps you too.

-- Heather Fritz, April 7, 2003

Fibromyalgia is not a fictional disease and it is not in our heads. I'm 27 years old and was lucky enough to be sent to a psychiatrist at the age of 16 who knew about and believed in fibromyalgia.

-- Anonymous, April 15, 2003

YES! I live for the warm summer sun to ease my fibromyalgia pain. There is nothing that feels better! I am basically confined to the house. Last month my husband purchased a wheelchair for me so that I can go places if I want. Walking has become impossible for me. I am 33 years old. Feel free to contact me, as I get pretty bored here at home all the time.

And remember to:

Keep smiling!

Ya gotta keep your sense of humor with fibromyalgia, or you will go...

INSANE WITH THE PAIN!

-- MissHedda, May 26, 2003

I was diagnosed 1 and a half years ago with fibromyalgia after working as a boilermaker for about ten years I suffered a RSI in my right arm. I went on light duties but after 6months soon realised that the pain had spread all over my body. I could no longer fulfill my duties and resigned. I then began my quest for answers and had just about every test you can think of from MRI's to nucleur imaging and heaps of blood

tests, thought at some stages that i

was going crazy until a doctor finally gave me the diagnosis. Now I realise that pain atleast is real and not just in my head.

-- John Taifo, May 28, 2003

I have had 3 epidual for two pregnacy in the last 2 years i have constant pain in my lower back i went to the doctor looking for some releif all i get is weel if you exercise every morning it will go away has anybody found any releif why are doctors so stubborn

the people who fake pain to get pills are causing pain for the people who are really in pain

-- Cry, June 10, 2003

I am a suffer of FM as well for about 7 years.I really get so tired of it sometimes, it seems just when I feel better bang there it is again.I have a lot of back pain even burning between my sholders, I cannot walk very far at all because of the pain. It is a terrible thing FM. but like a lot of others, my frinds think that there is nothing wrong with me.So frustrating. Thanks Daphne

-- Daphne, June 11, 2003

took my sweet mom, age 70 , to ER this morning with fibromyalgia pain so severe she can barely walk....she has appt with pain control clinic next week but needs help NOW!..asshole doctor said "i dont have a magic wand, i cant FIX your pain"...did he think we thought he did???..... and "i could give you stronger pain meds which would make you quit breathing, you want that??"....how do you get doctors to listen to people in severe pain? they will treat a cancer patients pain aggressively, as they well should!...but if the pain is not life threatening, well, tough luck....my mom can barely move....milder pain meds (Darvocet)dont touch this pain....

-- katie, June 20, 2003

Just been diagnosed w/fibro and chronic fatigue syndrome after 2 years of suffering with all the symptoms, not knowing anything about these conditions. Dr. finally started tests when it got real bad. Now not only do I have these conditions, but I also have something going on w/my 'hip girdle' muscles and tendons, and my right shoulder. MRI next week. Dr. said has nothing to do w/fibro. I now have a new 'cocktail' of meds. *Does anyone have a 'miracle' pain reliever that works wonders for them (medication or not)? My mother in law who has fibro swears by yoga, but I can't even stretch my body in most of the positions, so I guess that's out for me!* Feel free to email with suggestions, advice, or questions..... Thanks!

-- Jodi, July 18, 2003

chronic back pain for 4 years now and i truly feel for anyone who suffers with this.had mri that showed spinal stenosis at L4 L5 and was told that surgery was not an option. went through weeks of physical therapy and have had steroid blocks that did not help at alland any of the mild pain medications that i have been given give me no more relief than over the counter aspirin which is nil.i cannot work but am not considered disabled by social security . my primary care dr only seems to focus on my other problems which are under control and just looks at me like i,m crazy when i try to talk to him about my pain.sure wish i could find help because I WANT MY OLD LIFE BACK

-- Cathy, August 2, 2003

I know that their are many Doctors out there that could be called many names I won't mentions. There are many who do not listen. There are many who do not care. If you have a doctor like this of course you will look for a different doctor You should! I have fibromylgia along with CFS & MFS. There are many of us who can not excersize like they would like us too. Not because we are not will but because we are not able. We can with special help but not to many Dr. will except that. We are not lazy we are not able to do the thing that we once did. If you have a good day you may have many people think you are overdoing but what they do not understand is you don't know If you will ever be able to do this again. We truely would like to have a life free from pain. Our lives have changed! No one can seem to be able to tell us why, so it is easier for them to say it is all in our minds, or were lazy, or no one can be in that much pain. All I can say for them is GOD FORGIVE THEM THEY DON'T KNOW WHAT THEY ARE DOING! This is what I will say to you I understand and I hope someday SOON they find out why or what is causing this pain for us. Please hang in there because I know there will be times you may be tempted to end the pain yourself PLEASE DON'T. We have people who care. I care! It has been 20years with 3year remission I pay for more remission for me. And remission for you and a cure. You are important!!!

-- Wahneita Shirely, August 6, 2003

I dont know if I have chronic Fatigue sydrome or not.For about a year or so I feel that I could sleep standing up.I feel if I dont lay down I just cant funtion it is so bothersome that my husband doesnt believe that I really need to lay down.It feels so good to lay down and sleep.I know that this isnt normal but I cant help it. I feel so helpless sometimes.I really cant help feeling so tired. If I dont lay down and take a nap I just dont feel like I could go on.I am irritable alot becouse my neck hurts all the time.I feel that if I dont find out what the problem is and how to get over it then my marriage will be over.

-- Tammy, September 10, 2003

Does anyone know of a referral site for doctors who believe in Fibromyalgia and treat the pain? I am a nurse with FM. One doctor told me to take up golfing! Surely, someone understands the pain.

-- Searching, September 28, 2003

I laaaughed when I read all these messages... 'so good to read about people experiencing the same total disbelief and lack of support from doctors, family, friends, everyone... my answer was to go to a female doctor - who actually knew what fibromyalgia is and was up-to-date on the latest meds etc. I cried with relief the day I was diagnosed with a syndrome that I knew I'd had for years.

-- Veronica, October 13, 2003

Very interesting reading all the comments. I have never been diagnosed with FM, but I was born with scoliosis. It never bothered me until as a nurse, I herniated L4-L5 disc. I had surgery and was ok for 5 years when I herniated L5-S1. Again I had surgery, and that is when all the trouble started. I never got well, continued spasms. New pain developed in upper back and doctors thought I was a 50 year old nurotic nurse. Finally after ignoring me as best they could for 5 months they found a nice growth of psuedimonas in my T-spine that had completely crushed the T8 vertebrae and started an absess. The stigma on women with back pain is so terrible. I could have gotten septic and died. I finally got on Gentamyicin, and was healing of course until I became toxic to that med and developed a vestibular disturbance that has left me always off balance. My ability to be active and do the things I used to is gone! Without my mobility I have gained 30 pounds. This added weight puts more pressure to my spine and lack of mobility causes more joint problems. The neglect of the MD's in failure of diagnosing the spine infection is still difficult for me to swallow. I finally found a female doctor that listens to the fact that I have chronic spasms now around the middle of my trunk. She has started me on low dose of methadone. I take 10mg 3 x's a day. It works wonderfully and in 2 years I have not had to increase the dose, in fact I cut down when the pain is less. I realize that it is very addictive, but with chronic pain that may demand pain meds the rest of one's life it is logical to use small doses of the strong ones that will not have to be increased and that you will not have to play the "I need more pain medicine game, because it is not working anymore." I can work now and go shopping at the mall. I am getting a life back. I think that if a person is diagnosed with a chronic illness that will always be with them, methadone is a great alternative. It is not for people looking to get high, as that euphoria is not found with the drug, but pain relief is. Hope everyone can find their answers. Patty

-- Patty, October 24, 2003

I really need help ,I have serve weaknessand chronuc fatigue. I had to stop work and do very little. Iam very depressed.My whole life has changed.

-- Anonymous, October 27, 2003

I THINK YOU ARE JUST FULL OF YOURSELF. I AM A CHRONIC PAIN SUFFER, I HAVE BEEN ONE FOR THE LAST SEVEN YEARS. THIS HAS NOT BEEN THE LIFE I CHOOSE FOR MYSELF AND MY FAMILY. I DO HAVE HOBBIES, MEDITATE, AND YES I DO GET DEPRESSED SOMETIMES WHEN I SEE OTHER'S DOING THE SAME THINGS THAT I USE TO BE ABLE TO DO. I TRIED FOR A LONG TIME TO PRETEND THAT WHAT WAS HAPPENING WITH MY BODY WAS ALL IN MY HEAD AND MAYBE THAT IS WHY I AM IN SUCH BAD SHAPE TODAY. HOW DARE YOU SAY THAT MOST PEOPLE THAT ARE ON NARCOTICS FOR CHRONIC PAIN ARE ONLY DOCTOR SHOPPER'S/ DRUG ADDICTS LOOKING FOR A NEW SCRIPT. YOU ARE THE VERY KIND OF PEOPLE THAT ARE CAUSING CHRONIC PAIN SUFFERS EVERYDAY TO TAKE THEIR OWN LIVES CAUSE THEY CAN NOT GET ADEQUATE MEDICAL CARE AND THE VERY MEDICINES THAT KEEP YOU PAIN FREE AND ABLE TO HAVE SOME OF OUR FORMER LIVES BACK. I JUST HAVE ONE QUESTION FOR YOU? DOES IT FEEL GOOD TO BE A MURDERER. CAUSE IT IS PEOPLE THAT MAKE UNJUST AND UNFOUNDED STATEMENTS LIKE YOU HAVE THAT MAKE SOME CHRONIC PAIN SUFFERERS GIVE UP. I HOPE YOU ONE DAY HAVE TO SUFFER THE WAY THAT 50 MILLION PLUS CHRONIC PAIN PATIENTS HAVE TO, CAUSE I FEEL LIKE UNLESS YOU WALK IN MY SHOES, YOU HAVE NO RIGHT TO JUDGE. SINCERELY, PRAYING FOR A BETTER TOMARROW, LOUISE

-- LOUISE, January 3, 2004

i have just discovered this site and i am so moved by the experiences so many have had and what they endure daily.my doctor thinks i have ME, since Sept 03 and possibly since March 03. I am waiting to be seen by a specialist. Most days i think I have ME too, but although I am not living a normal life anymore, I am not suffering in the way that so many of you are. That makes me wonder if I really have ME, and makes me feel guilty for saying I have it. I feel really lost for I have the symptoms and yet nobody takes me or ME seriously. They think if I just put my mind too it I can overcome it. I'm very confused and distressed by it. I'm still working but thats a struggle but I feel that because people don't understand I have to carry on or be labelled unfairly. I'm worried that to keep on going is going to have a worse long term effect.

it has comforted me to learn I am not alone, and I will keep in touch with this site.

Sorry if I have rambled, there is so much to say, and not many listen so I have to make the most of the opportunity! Thanks

-- Anne, January 5, 2004

I have had this disease for many, many years. My doctor tell me he can tell that something is wrong. I will get big knots as I call them all over my body. There was not much known about it when I came down with it. I was a guinea pig. I am one not to take medicine unless it is need. I did try many.

What I did found at though many years is that when it hits me, It hit me fast. My glands would swell also. My tips to anyone experience it. Is to keep your spirits up. Look at what you did today not what you couldn't do. Mortrin seems to help the best. Streching everday is helpful also. When the pain comes relax ,take deep breaths and really push down hard on the spot that is bothering you. Increasing you salt also helps. Most of us have very low blood pressure I am told and this helps alot. Eating Balance diet never hurts.I would tell my doctor I had a wonderful week and he would laugh. Your muscle are worst and I would say it's your additude learning to live with it. It doesn't go away.

-- Anonymous, February 1, 2004

i suffer also with fibro sometimes the pain is so bad i cant stand always tired no one understands think im lazy just dont want to do things i have 6 kids and 12 grandbabies cant see them all like id like to sometimes you wonder if this will ever end if it wasnt for JESUS and my faith in him i would have givven up a long time ago still hanging in there drs need to understand this pain and not think your just drug seeking the people who abuse drugs make it hard for my its not fair but we cant give hugs hugs hugs to all that suffer but not to hard HA HA pat

-- pat, February 4, 2004

For anyone suffering these conditions , please note that tb was once a disease caused by a mental illness ,ulcer caused by stress and they cured people of strepp throat by bleeding the patient to death. If the medical people wanted to, change there way of thinking , they may come up with answers for these conditions ,maybe they already have, but it wouldnt pay to say.

-- Anonymous, February 18, 2004

I THINK DOCS ARE JUST MISINFORMED AND THE OLDER THEY ARE THE MORE THIER THINKING IS NARROW. IVE BEEN TO DIFFRENT DOCS BECAUSE OF RELOCATION. IVE BEEN DIAGNOSED WITH ALL TYPES OF ARTHRITIS ,FIBROMYALGIA , CLUSTER MIGRANES ECT.. THE ONE THING I FIND COMMON AMONG DOCS IS THIER ABILITY TO LISTEN. THEY WANT YOU TO HAVE WHATEVER THEY WANT YOU TO HAVE. IF YOU ARE RESONABLY YOUNG AND INDEPENDENT AND IN PAIN THE FIRST THING THEY WANT TO HAND YOU IS ANTIDEPRESSANTS . WHEN YOU TELL THEM THE ONLY TIME IM SAD IS WHEN I HURT AND CAN NOT ACCOMPLISH MY NORMAL TASK . THEY SAY YOUR DEPRESSED YOU JUST DONT REALIZE IT. THIS IS WHAT CAUSES YOU PAIN. WELL OK THEN YOUR THE DOC! WHEN YOU STILL HAVE PAIN YOUR NOT DOING WHAT THEY TOLD YOU. IF YOUR YOUNG OR OLDER AND MARRIED YOU GET THE SAME THING "YOUR DEPRESSED'.JUST THE OTHER DAY I BEGAN SEEING THE PARTNER OF MY DOC WHO WAS BIENG SHIPPED TO IRAQ. HE SAID IF I QUIT ALL THE MEDS MY DOC ALONG WITH REFFERED SPECIALIST THAT I WOULD NOT HAVE MIGRANES , LUMPS ALL OVER MY BACK , FIBRO,AND ASTHMA. NEEDLESS TO SAY HE DOES NOT BELIEVE IN FIBRO OR HE WOULD KNOW THAT THE REASON FOR MEDS ,PHYSICAL THERAPY. TRIGGER INJECTIONS IS NOT BECAUSE I ENJOY SPENDING ALL MY FREE TIME AND MONEY GOING TO DOCS THAT ONLY MAKE ONE FEEL MORE LESS THAN HUMAN.THEY ALL HAVE A HANGUP HIS HAPPENS TO BE MEDICATION. I HEARD HIM IN THE NEXT ROOM WITH A LADY PAITENT AND HER HUSBAND ,HE SAID" YOU KNOW IF WE CUT OUT ALOT OF THESE MEDS YOU PROBOBLY WONT HAVE HIGH BLOOD PRESSURE. I THOUGHT TO MYSELF "HOW IN THE HELL DO YOU KNOW SOMETHING MORE THAN A DOC THAT HAS SEEN HER FOR OVER A YEAR WITHOUT EVEN TALKING WITH HER.HUH?THE ONLY DOC THAT IS EQUIPTED TO HANDLE A FMS/CFS PAITIENT IS ONE THAT KNOWS OR UNDERSTANDS THE PROBLEM.THIER NEEDS TO BE WAY MORE UNDERSTANDING AND COMPASSION IN THIS WORLD. THERE IS NOTHING LIKE BEING IN PAIN AND THEN GOING TO SEE A DOC THAT DOES NOT CARE. THEY ARE THE MAJORITY OF DOCS. MONEY IS A BIG MOTIVATOR AND HMOS ARE REWARDING PHYCICANS TO NOT LOOK UNDER THE RUG FOR FEAR THEY MAY HAVE TO SPEND MONEY WHICH IN TURN ENCOURAGES THE DOC TO SAY HERES SOME PROZAC IT WILL CURE EVERYTHING. YOUR TO YOUNG TO RUN TEST ON INS WONT PAY ,DO YOU HAVE AN EXTRA 1000 TO SPEND. I DONT BLAMB THE DOCS WHO REALLY CARE FOR THIER PAITENTS TO QUIT THIS PROSTITUTION RING. THEY CANNOT AFFORD TO LISTEN FOR 55 DOLLERS AVISIT REGUARDLESS OF THE TIME SPENT.THATS WHAT THE HMOS PAY THEM.I DONT KNOW WHY BUT OUR WORLD IS BECOMING MORE AND MORE SELF CENTERED.I NORMALLY CALL MY MOTHER WHEN I NEED TO TALK ABOUT MY SYMPTOMS,I DONT DARE TELL THE DOC BECAUSE IM TIRED OF HEARING "YOU WOULD NOT NEED THAT ZELNORM IF YOU WOULD QUIT TAKING EFFEXOR. THANKS FOR LISTENING IM GOING TO PHYSICAL THERAPY. GOD BLESS YOU ALL.

-- eleanor, March 5, 2004

Im a 54yr old woman who after 13 months of going to see a doctors, I finally was diagnosed with fibromyagia. Iwent through the test, is it M.S, PARKINSON. Then it was Conversion Disorder.After 2 doctors in Indiapolis, the result was FM.Along with balance problems and tremors.I walk with a cane most of the time, even in the house.Its affected my eyes, they can hurt beyound words.I was a women who worked 57 hrs. every wk, just to lose everything. Cant get insurane, but cant get disability . GO FIGURE........

-- Anonymous, April 1, 2004

I was toldthatIhave fibro,but I am really not sure anymore.My upper legs{thighs} get extreamly cold,that I can,t stand it. The mustles in my thighs hurt so bad just to the touch.It feels like someone is inside of my thighs with a ruberband and keeps pulling on it.It also feels like a numbing pain.I was told to go to a rhumatologist.I have an appointment next. I guess we will see what happens.

-- Bonnie, April 21, 2004

DEAR FIBROMYALGIA SUFFERER'S,

I HAVE BEEB SUFFERING WITH THIS CONDITION FOR OVER FOUR YEARS NOW. I HAVE SEEN MANY DIFFERNT DOCTOR'S WHO SAY THEY'RE NOTHING ELSE THEY CAN DO FOR ME. DO NOT GIVE UP!... IT'S NOT IN YOUR HEAD. I HAVE RECENTLY BEEN REFERRED TO A PAIN CLINIC FOR THE FIRST TIME. AFTER SEEING A RHEUMATOLOGIST AND A PSYCHOLOGIST. MY SISTER HAS RECENTLY BEEN DIAGNOSED TOO WITH THIS DISEASE. IT IS GENETIC AND IT IS LIFE ALTERING NOT ONLY FOR YOU BUT YOUR FAMILY AS WELL. I AM HOPING SOMEDAY THEY WILL COME UP WITH A TREATMENT FOR THIS DISEASE AND END OUR NEVER ENDING SUFFERING...I AM CURRENTLY IN BED 20 HOURS OUT OF THE DAY, AND IF I USE MY MUSCLE'S MORE THAT DAY. I SUFFER THE NEXT TWO TO THREE DAYS AFTER THAT.

-- Anonymous, May 2, 2004

I have chronic pain. It all started after a car accident in august of 03 and then another one in April 04. But before that I was in pain also. I have a history of polycystic ovary syndrome (where you get chronic ovarian cysts that have to be operated on) I've had 2 surgeries to remove them they even took my right ovary and tube. Well about a month ago they found a complex ovarian cyst on my remaining left ovary. My OB preformed surgery last Tuesday and said that nothing was found, not even the cyst. But the pain was still there it never changed. I have pain in my back, neck, and usually in my pelvic area but since this last surgery it's all over from my belly button down. What's weird is that at 17 I had a simular procedure and I recovered just fine. (they were both diagnosic laporascopys)The pain is getting worse and I am in the process of getting on disability because I have some mental illnesses along with the pain. Every one seems to think this pain I'm having is made up for some reason. The doctor gave me darvocet (that's like drinking a glass of water for me) then gave me vicodin and said he didn't care how much pain I am in he wasn't going to prescribe any more pain meds. Could I have fibromyagia?

-- Katie, May 25, 2004

I have been reading all the letters that were on this sight and I know what you are all going through as I to have had this FM, for over 28 years and was always told that it was in my head. after many years, I had a doctor that cared and sent me to a pain clinic, in seattle,Wa. I had a great pain DR. I have to take medicine the rest of my life but I do not care as long as I am not in pain. I was put on methadone and it gave me back my life. I also take other meds with it but that is ok . I can do a few little things that I could not do with out this medication.I just moved to AZ, and I am having a time finding a DR, here. if anyone knows of one, that is good and understands this FM stuff please write or send it in. I hope I can find this web sight again. It is very good. God bless all of you that have this problem and pain. This is real pain and not in your head. God forbid the people out there, that do not believe in this pain, as what goes around comes around.

-- Anonymous, July 22, 2004

My daughter suffered from fibromylgia for 9 years. She passed away at the age of 35 on July 15/04. I never really knew why she was so sick and do not fnow why she died. The atopsy reports do not show any signifient physical problems, but I am waiting for toxolagy reports to come in before I can get any more answers. I do beleive that over medication contributed to her death if now caused it. She was onMaxalt, rivatril, baclofen, viox, hydroxyzine, tylonal 4, ane last but not least-oxycoton!! On top of all this she frequently went to the hospital, where they gave her morpnine for her migrane headaches. She was constantly sick and in pain and was misunderstood. She could not even get disability assistance because they would not beleive her that she was too sick to work. Now everyone beleives she abused drugs which she did not. She took her meds exactly as directed by her Dr. and all her meds were accounted for at her bedside when she died. I also have fibro but have opted to suffer out the pain without meds--and I feel much better than I did when I was on meds. F.M patients retain toxins in their bodies--the meds just add to them.I know some times we need a little help, but be very careful with long term use of these meds.I hope I can honour my daughters life and death by trying to help outhers that suffer as she did. Thankyou and may God keep you in his care!

-- Wilma Chevrefils, August 6, 2004

I HAVE CHRONIC PAIN NOW FOR 15 YEARS. IN THE BEGINNING THE GOING WAS VERY ROUGH, I MEAN WITH DOCTORS THEY JUST DID NOT WANT TO TREAT THE CHRONIC PAIN PROPERLY. DO YOU KNOW A DOCTOR GETS 2 HOURS OF PAIN CONTROL TRAINING IN MEDICAL SCHOOL IT'S NO JOKE. ITS A DISCRACE TO PEOPLE LIKE US WHO SUFFER FROM SERVERE CHRONIC INTRACTABLE PAIN & ARE GETTING SOME HELP OR NO HELP AT ALL. MY ALIMENTS ARE I HAVE OSTEOPEROSIS,DEGENERATIVE BONE DISEASE,SERVERE PAIN DUE TO COMPRESSED VERTABRA AT L4-L6 THEY ARE NOT HEALED PROPERLY AFTER 4 YRS.I HAVE NERVE DAMAGE AT T-12-L-1.I HAVE THREE SLIPPED DISKS TWO ARE BAD, ONE NOT SO BAD. AT THE VERY BOTTOM OF MY SPINE I HAVE A VERTABRA OVER RIDDING THE LAST VERTABRA LIKE ITS VERY MUCH OUT OF PLACE. I ALWAYS HAVE SERVERE BACK, NECK, CHEST, SHOULDER, ARMPIT, FLANK, ARM WEAKNESS,ALSO MY HAND IS NUMB ONCE IN AWHILE THIS IS ALL ON MY LEFT SIDE. I HAVE PROLONGED QT WAVE SYNDROM. I HAVE AN INPLANTED ICD OR INPLANTED CADIOVERTER DIFIBILLATOR.WHICH MEANS I USED TO GO INTO FAINTING SPELLS WHERE MY HEART RACED (SVT) SUPER VENTRICULAR TACHACARDIA. THIS MEANS MY HEART RACES VERY FAST I"LL RECIEVE A SHOCK WHEN I FAINT AND MY HEART BEATS AT OVER 200 BEATS A MINUTE FOR A SUSTIANED PERIOD OF TIME. THANK GOD I HAVE MY MEDS SQUARED AWAY BECAUSE THAT'S WHAT HAD CAUSED THIS. I GOT PROLONED QT WAVE SYNDROM FROM REMERON A NEW ANTI-DEPRESSANT I WAS TAKING AT THE TIME. NOW I CAN'T TAKE ANY ANTI-DEPRESSANTS, OR NSAIDS,CERTAIN ANTI-BIOCTICS THERE'S A WHOLE LIST OF MEDS I CAN'T TAKE THIS OF COARSE IS HINDERING MY RECOVERY IN A BAD WAY THE ICD HAD SAVED MY LIFE THREE TIMES. I WAS THE FIRST CASE OF PROLONED QT WAVE SYNDROM TO BE CAUSED BY THE ANTI-DEPRESSANT REMERON, THAT WAS PRINTED IN THE NEW ENGLAND JOURNAL OF MEDICINE AS A FIRST. I'M ALSO IN THE NEW ENGLAND JOURNAL OF MEDICINE FOR BEING ON METAHDONE (DOLOPHINE) AT A HIGH DOSE 1200 MGS A DAY YES THATS NOT 120 MGS THATS 1200 MGS A DAY. THEY FOUND OUT THAT ANOTHER 52 YEAR OLD LADY WHO WAS PREGNANT AND ON 600 MGS OF METHADONE A DAY, AND HAD AN ICD INPLANT WAS FAINTING, CAUSING OUR ICD'S TO BE SET OFF. THEY PUT TWO & TWO TOGETHER AND WHAM ANOTHER FIRST FOR THE MEDICAL COMMUNITY PRINTED IN THE NEW ENGLAND JOURNAL OF MEDICINE. NOW SINCE I HAVE ALL MY DUCKS IN LINE SO TO SPEAK, I'M ON SOME OPIATES AT HIGH LEVELS TO CONTROL MY PAIN TO A CERTAIN POINT. I TAKE KADIAN 100 MGS CAPS. I TAKE 7 CAPS. THREE TIMES A DAY THATS A TOTAL OF 2100 MGS,I ALSO TAKE KOLNOPINE 1MGS TABS. I TAKE 5 TABS THREE TIMES A DAY, TOTAL 15 MGS.I TAKE CATAPRESS PATCH TTS 1 EVERY 7 DAYS OF (CLONIDINE) 0.1 MGS. ITS A CLASS ONE ANTAGONIST. EVERY 21 DAYS I TAKE A SHOT OF DEPO-ENTHANTHE TESTOSTERONE.200MGS. IM INJECTION FOR OSTEOPERSIS & DEGENRATIVE BONE DIESEASE.AND FOR BREAK THROUGH PAIN THE FIRST LINE OF DEFENSE FOR ME IS 1600 MCGS. OF ACTIQ I'M ALLOWED 2 POPS PER EPISODE OF BREAKTHROUGH PAIN AND NO MORE THAN 4 LOLIPOPS PER DAY. MY SECOND LINE OF DEFENSE IS DILUDID-HP INJECTION 30 MGS IM EVERY 4 HRS AS NEEDED FOR EMERGENCY PAIN THIS IS WHERE I'M ON THE GROUND CRYING IN TEARS BECAUSE I CAN'T GET UP BECUASE OF THE PAIN BEING SO INTENSE NOW YOU CAN SEE WHY I TAKE ALL THIS MEDICINE FOR PAIN I'VE BEEN ON OPIATES FOR 11 YRS ALMOST 12 I'M JUST LUCKY ENOUGH TO HAVE A DOC TO PRECRIBE IT ALL. AND BY THE WAY FOR ALL YOU DOCTORS AND PEOPLE OUT THERE WORRIED ABOUT THE DEA AND THE DOC LOSING HIS LISENSE IS A MITH MY DOC HAD TO SEE THE DEA FOR DISPENSING ALL THESE OPIATES. THEY SAID AS LONG AS EVERTHING WAS DOCUMENTED ON PAPER AND YOUR PATIENT HAS REAL PAIN AND THERE'S SEVERAL PEOPLR TO CONTEST TO THAT.ITS FINE HE STILL HAS TO WATCH OUT FOR THE ADDICT WHO WILL WALK IN HIS DOOR EVERY SO OFTEN NOW THIS IS WHERE HE CAN GET IN TROUBLE IF THIS PERSON IS NOT EVALUATED PROPERLY THROUGH EXPERINCE, HE CAN SPOT AN ADDICT A MILE AWAY THATS WHY MY DOC STILL HAS HIS LICENSE.BECAUSE HE SCREENS SCREENS & SCREENS PEOPLE LOOKING FOR OPIATES. AND THE DOCTOR THAT DOES NOT DESERVES TO HAVE HIS OR HER LICENSE TAKEN AWAY FOR AN INPROPER EVALUATION.THATS WHERE THEY SCREW UP AT.IF I TAKE ANY BREAKTHROUGH MEDICINE I HAVE TO CALL HIS OFFICE SO THEY CAN DOCUMENT WHAT DRUG I TOOK AND HOW MUCH AND WHAT TIME. PLUS THE DAY. YOU PEOPLE LOOKING FOR CONTROL OF YOUR PAIN HAVE TO ESTABLISH A WORKING REALATIONSHIP WITH YOU DOCTOR AND IF YOU DON'T FORGET IT. YOU HAVE RIGHTS TO PAIN CONTROL DON'T FORGET IT NEVER IN YOU GOD FORSAKIN LIFE. REMEMBER YOUR THE ONE WITH THE PAIN NOT ANYONE ELSE. IF YOUR WORRIED ABOUT BECOMING AN ADDICT THERES A 0.2% CHANCE THAT THAT WILL HAPPEN VERY RARE OCCURANCE. GOD BLESS ALL

-- Anonymous, August 12, 2004

I am a registered nurse, most recently working in an ER. Very frequently, pt's come in for pain meds and say they have fibromyalgia. The doctors almost always roll their eyes and tell the nurses to give thema shot ot toradol and send them packing. I am a pt. advocate. It is not my job to judge someone else's pain. Normally I fight for the pt to get their pain under control and give them a referal to pain management docs. Recently , My own pcp has begun toying with the idea that I too have fibromyalgia. (after 2 years of suffering without a diagnosis for pain, fatigue, headaches, and dysmenorrhea) I am glad that I was always the nurse I was. Not judging, and looking out for pt's best interests. I hope that in the years to come I will be treated with the same respect. And to those of you suffering, hang in there. It doesn't get easier, but you will get through it. Find someone who believes in you, and focus on the good things in life. Remember, things could always be worse!

-- shannon, September 11, 2004

Actually, I don't have a comment or Experience of my personal own but I have a question about fibromyalgia. My question is can this cause a person to faint?

-- Anonymous, September 13, 2004

I HAVE PAIN BETWEEN SHOLDER BLADES. IT COMES & GOES. OVER COUNTER PAIN PILLS NO HELP.I AM 72 YRS OLD MALE.HAVE HIGH B.P. HIGH COLOSTRAL,STOMACK PROBLEMS.HEARING LOSS. DON'T SMOKE,DRINK,VERY ACTIVE WHEN I FEEL GOOD.CAN YOU GIVE ME A CLUE.MY BACK HURTS...ROBERT WILKERSON 60 MILES WEST OF SAVANNAH GA.

-- ROBERT, September 22, 2004

Hi! my name is Lorraine I am 42yrs old (feel about 82) I was diagnosed with chronic fatigue syndrome /fibromyalgia about 14 years ago. Since such time my condition has deteriated and I have been under a speacialist, whom I see every four weeks I have been seeing him for nearly two years and his approach to patients getting better is a cocktail of drugs which include antidepressents and sleeping tablets.

Nothing has helped me, I cant sleep at night, I have continuous pain, aching and burning in every part of my body. I suffer severe fatigue feelings of having had no sleep whether it be 2 hours or 22 hours. I get sick of people tellimg me I look so well, as you are all to aware the problem is within your body.

I have tried massage, accupuncture, osteopaths, alternative medicines and payed out a fortune.

Fibromyalgia has taken away my life, I know this may sound harch but my mobility is nil, my pain is there 24 hours every day, I have no concerntration or interest in anything because everything aggravates my condition.

I would love to hear from anyone who can relate to me, and especially if you have had a cure.

Thanks for listening!

-- Lorraine, October 11, 2004

I was diagnosed with fibromyalgia four years ago, after suffering @ five years before that. I have constant pain, rarely sleep more than two hours at a time, have trouble staying focused, suffer frequent debilitating migraines, and basically feel like crap all the time. I have [finally] found a doctor who not only believes that fibromyalgia is a real illness but who stays up with new medications and treatments. I see my GP every three months, and each time he suggests that I try something new - another supplement, a diet change, a medication change, etc. I still have a great deal of pain, especially during weather changes, but I am able to call my doctor for additional help when flare ups occur. I think the biggest keys in treating your fibro are finding the right doctor for you, staying in close contact with your doctor, and keeping a positive attitude no matter what. It may be bad today, but there WILL be better days ahead.

-- Linda, October 21, 2004

I have suffered for 14 years with chronic fatigue syndrome and fibromyalgia. I am fortunate as I am under a Doctor who speacialises in these conditions and is very understanding and has cured many of his patients. I have been on medication including Prozac and sleeping tablets but my fight still goes on, I am in chronic pain every hour of every day, totally fatigued and drained from the minute I get out of the bed. I have chronic pain in every part of my body to the degree that if someone touches me I hurt, I have complete memory loss which is frustrating and obviosly severe depression (who wouldnt)! I do sometimes feel like giving up on life as my mobility is non existant and I cant do the things I would like to do.

On a brighter note I do have a very supportive husband who goes through hell and back with me and I count myself fortunate that not everyone has this support which I feel is so important for us sufferers. My fingers are now hurting and burning, my back and neck feel broken so I must finish here. All us sufferes keep your chin up, there are people out there who know your and understand your pain.

Lorraine Wiggins

-- Lorraine, October 25, 2004

I've been married for three years and my wife and I are going through a bad divorce.

She recently lost her job and claims it was due to fibromyalgia that I had caused. She now wants a lot of maintenance support (alimony) in the divorce proceedings.

I don't know if she has fibromyalgia or not or if she is exaggerating symptoms for sake of the divorce.

Any advice?

Thanks

John

-- John , October 29, 2004

I have had this pain on the inner side of my scapular bone that has been driving me crazy for years. My neck will hurt and burn and tingle along with my back. My periods are agonizing, I feel like I am in labor when I have them. My fingers, the soles of my feet and my knees hurt especially if I stay up late at night. I usually feel sick ALL the time. Almost anything I eat makes me feel nauseas afterwards. This "sickness" has been going on since I was about 13 years old (around the time my mother cheated on and left my father taking us with her to a new house/life/etc.). I can remember waking up in the middle of the night so sick feeling that I could hardly move, I felt absolutely horrible. The sick feeling is not as intense all the time but it is pretty constant along with the pain. I have been dx w/depression, bipolar disorder, chronic fatigue syndrome, hypertension, etc., but I believe if I do have those, they are the symptoms of fibromyalgia. I just dont want to feel sick anymore. Some days my skin hurts and I cant even handle my clothing touching it. I cannot drink alcohol, even the tiniest bit makes me extremely ill. My bp will go up and stay around 150/120 if I drink just one beer and I will hurt even worse all over. So I dont drink but I still feel so sick. I am only 27 years old and I am so tired/sick/miserable most of the time. I can barely work and I leave early all the time. I miss class alot and I rarely ever go anywhere because the thought of being out(even to the grocery store) makes me sick. I dont know what to do and no one believes me. Everyone thinks I am a hypochondriac but I really do feel sick almost EVERY day.

-- Michelle Noble, November 2, 2004

I have been suffering from this dreaded syndrome for 18 years now. I have pain everywhere. The thought of falling or turning a ankle send chills up and down my spine I'll be in pain for months even as much as a year before the pain will quite down but touch it and I still feel the pain. My doctor works with me and he recently took me off lipitor just to see what would happen with all the spasms that I have in my back.I must tell you the spasms feel much better.You named it I tried it. There are time I feel so bad I want to die I'm exhausted from the pain that is within my body 24/7, people look at me and say when I go for therapy why are you here, you don't look sick. If anyone out there has and answer for a just a little bit of relief please write. Please try to remember this little saying when we can't get out of bed in the morning "a champion is one who gets up even when he can't"

Thank you.

Connie November 15, 2004

-- Connie, November 15, 2004

I've found this page and reading other folks stories re Fms, i've expeireinced FMS for over 10 years, problems getting disability, got good doctors who understand FMS, and the one thing that bugs me is that you try to explaining to people, that it's not psycosomatic, it's real draining physical pain! hah! I just found out that Fms has co-conspiriters like syndrome X, so watch your weight, adapt your diet to cut out or reduce sugars, carbs and fats, but do consult with a dietician, because obesity is a problem with Fms,and ensure that thyroid levels are ok. I do have to exercise to produce the endorphins to kill the pain. Do have hobbies, learn new skills, I found that Tai chi helps. I'm scottish, and weather does affect me a great deal, and I hate very hot days as well as cold. good to find a site where people can share their tips and ideas. Don't give up.

-- Anonymous, November 18, 2004

I too have suffered the many dreadful symptoms of fybromyalgia for about 31 years now I will be 45 in January a birthday I didn,t think I would reach but now I am more optomistic about my future. Ceasing to ingest fluoride has stopped the cripling effects of fibromyalgia for me. Fluoride is found in some mains water supplies and bottled waters, toothpaste, mouthwashes, floss, processed food and soft drinks. Naturally occurring in tea. I can expect the reversible symptoms to do so in about 9 years. Fluoride is a free radical neurotoxin that affects the thyroid consequently affecting every other part of the body too. Fluoride binds itself to heavy metals whilst depleting the body of calcium and other vital nutrients. The condition known about since the 1930s is called skeletal fluorosis. Unfortunately parties with a vested keep telling us it is safe just like they used to with smoking.

I hope this helps my fellow sufferers and remeber there are other toxins out there or should I say in our food and drink also in toiletries cosmetics perfumes. Artificial sweetners (chemicals) particulary play havoc with health these can be found in toothpastes, sugar free gum, diet food and drinks.

Wishing you all better health

-- Noreen, November 27, 2004

I hurt all over also. My neck, shoulder, under my arm, back in the kidney section of my back, upper leg, inside the leg, and outside, and my feet. I have had fibrous tumors does this have anything to do with this condition? I need help badly!!!

-- Peggy Loyd, November 27, 2004

Im 17 years old and i have fibromyalgia.Ive had it for a couple of years almost my whole life.Ive been seeing the same doctor my whole life.When i told him about my pain he just told me to take motrin.Well it helped at first but after a while it didnt do a thing.So he took blood tests and it came up that i had RI..Not true i went to see his specialist and he said i FM.So it seems like my family doctor doesnt believe the kind of pain i am.When i cant get out of bed becuase im so stiff,or my necks cocked to the side and hurts and i go see him it seems like he doesnt believe me.Oh and not to mention the spams ohhhhhh....Those are the worst.I hate going to sleep and waking up almost every half an hour becuase i cant sleep with all the pain.None of my friend understand how tired i am.They dont understand that i cant just run out the house.I dont really go out at all.Winters are really bad for me.Ive tried everything,nothing works for me.I just wish there was something to take it all aways!

-- Anonymous, December 3, 2004

Sir/Madam

I am a 48 yr old lady. I had my last period on 16th October, 2004. Therafter I have not mensturated. What is the reason. I have done a preganacy test. the result was negative.

Now I feel severe pain on my elbow. I am very moody now. Moreover I have pain on mmy brests. What can I do?. please tell me How can I feel better.

Thanking U in anticipation.

juli

-- Juli, December 17, 2004

Daily I am attacked by Fibro pain in my shoulders, upper arms, between elbows and wrists and frequently in the legs.My dilema is that I also have osteoarthritis, and suffered a fractured spine several years ago so that it is sometimes difficult to pinpoint which problem is expressing itself at the time. But I have found that a combination of one Ibuprofen 600mg and one Fiorinal 1/2gr together seem to calm the Fibro knife-like pains that attack. As I am pulling pallet trucks with skids of boxes up to 6ft plus high and unloading/reloading these as well as taking out the merchandise and folding it, there are days when I would love to just stay in bed, but I have found that since starting this job, despite the fact that it exhausts me (I start at 4:30am)I have remained flexible and seem to have the Fibro attacks less often. I know exercise is important for most conditions but I didn't think this type would help, only hinder. I have also discovered that sugar increases the attacks! Learned by trial and error. Hope this helps someone else down the road - the more we can learn about this 'hard to diagnose' disease the better it will be for everyone.

-- Carolyn, December 17, 2004

My husband has always been a hard worker. He has spent most of his life as a carpenter. At the age of 16 he fell off a roof and injured his back. Then at the age of 24 he again injured his back. Over the years he has recieved several injuries and continued to work. Now he has been diagnosed with fibromyalgia, lower lumbar disc disease, and throw into this mix, chronic anxiety disorder and severe depression. And the doctor wants to take him off all his pain meds. His doctor states very clearly that fibromyalgia is NOT treated with pain medicine. Yeah Right!!! A physical therapist stated that if my husband quit taking ALL of his medications immediately (including his high blood pressure meds and his anti-depressants), this physical therapist could cure my husband of all his maladies within 3 weeks. But, he will not work with my husband at all until he quits taking meds. My huband is 37 years old. He has paid in taxes, paid in medicare, and social security. Now that he cannot work, the goverment will not give him anything!! They will not even help to pay for any medications. He has applied for his social security and has been denied. Several times. Every time we appeal, he is denied. This makes his depression worse, because he has to depend on me for financial support. I don't mind, but he feels like he is not dong his part for the family. We have four children, so he also feels that he his less of a dad. I can tell him until I am blue in the face, That I do not think he is less of a man, less of a husband, or less of a dad, because he can not work and bring money into the home. And niether do our children. But, like most men, (no offense intended, the truth is the truth) he is stubborn and proud. But I love him. And I will always be there for him. But this is very frustrating, not having a doctor that understands and is willing to help. And not having a goverment that acknowledges your disability. I guess it's a good thing I am a sane person, otherwise I might be inclined to show some of these fist rate ass-holes a nice deep dark hole. Permanently.

Thanks for listening and letting me let loose some pent up frustrations.

Love to all you FM sufferers out there.

Emryld

-- Emryld, December 20, 2004

Ive had severe lower back pain and leg pain for two years now. I am unable to work I barely can sit ,lay or stand my life is at a standstill. Im suffering from depression because i can't work,play with my kids

-- larry, January 2, 2005

I too have fibromyalgia, I would just like to comment that the reason we go from doctor to doctor is attempting to find one that is caring or at least knows what the heck he's talking about. I have been given narcotics, they are still in my medicine cabinet months later as they provide no relief. I am definitely not "drug seeking" just looking for a little compassion and knowledge (which is proving VERY difficult to find). God bless everyone with this awful "syndrome".

-- Donna, January 7, 2005

I have fms and have had it for 13 yrs. Somedays are good and some are not. But I have noticed that the tanning bed helps and horseback riding. Belive it or not but I can get on my horse even when I hurt so bad I can barely get on him by myself, and ride for a little while and feel each and every muscle loosen up with each step he takes. I have had to go through a total hip replacement surgery in 2003 and just 2 wks ago I had to have surgery in my neck for a ruptured disk. I just turned 39 on the 25 of this month. Now the surgerys were due to injuries but it seems my body can not handle falls and such as well as it should due to the fms. There is no proof of this that I know of. I get awful lumps and knots in the muscles in my back and even nerve pain and I feel it comes from the fms. I do know that staying active does help but there are times it's so bad I can't do anything. I can't find a doctor who can help me, because like this one they feel like it's not real, or in our heads. It's not. I have a wonderful life and have my dream career in Law Enforcement. So what's my psycholigical problem ? I have the best family life in the world. So may be the DR's should have to suffer intense pain for so long it could drive them crazy!!!!!!!!

-- paula cromer, January 27, 2005

I am a 29 year old female who has been a victim of the medical system in the United States since birth. As an teenager, i complained of pain in my arms & legs, told my doctor that it felt like a cold ache to the bone. Her response was loose weight and you won't be in pain any longer. When I turned 18 & was finally out of pedicatrics, I found another doctor, an internal med. Who essentially told me the same thing. So I stopped seeing doctors, until I was so sick I had no choice. I ended up seeing 8 doctors in 2 years. Sadly, I got the same response, no help and more pain. Loose weight and you won't hurt anymore. Finally in my desperation, i started smoking marijuana. And that helped alot. I took up yoga--2hrs a day. That helped alot, helped alot of my pain. So I lost almost 100lbs, went from 340 to about 240 in little over a years time.

When I moved from Arizona to Oregon last winter (2003), I was exposed to a level of pain I had never had before. Every inch of my body hurt like prednisone withdrawls, all the time. I stayed in bed all winter. By the time I got a doctor to listen, I was in so much pain and had abused my body with NSAIDS and alcohol for so long to numb my body long enough just to deal with life. Then it hit, a stroke. Somehow they always listen if they think they are going to loose your insurance premiums. After the stroke, She gave me elival, it helps. That, the marijuana & the darvacet. I've almost to a point where I can stop taking the darvacet, which I am excited about. I'm tired of being numb. Of course the moral of the story is maybe if someone would of listened all those years ago when the pain wasnt so bad maybe i could of had more of a life. It is still sad ive got to take pills to be normal, but then again for so long i was told it was in my head...so who knows who's really normal...me for feeling the pain or them for ignoring it.

--Kat

-- Kat, January 27, 2005

I was diagnosed with fibromyalgia in the late 90s' due to an auto accident. Since then I have noticed several changes in my body. Three years ago, my body began shaking involuntary. It may begin with my head or arms and eventually go through whole body. Any suggestions that it may be related to fibromyalgia. I was recently discharged from a hospital's EMU unit. They thought it could have been seizures and said no that it was psychological. I know in my heart it isn't and that something from my distant past is reopening. What are your opinions on this matter?

-- Ellen Hoover, January 30, 2005

I have suffered with many of these symptoms for about 8-9 years.

I am a 32 yr old female 5'9" 128 lbs, active (as much as I can be with the pain and lack of energy).

I have had migraines since I was 14 yr old and the chronic pain began about 8-9 years ago. I do not know if it has anything to do with fact that I was in a car wreck in 12/98 and had long-term whiplash from it, but that happened.

Over the years I have been told that it is in my head, that it is CFS, FIBRO, Epstien-Barr and now I am being tested for Lyme disease and Brucella Virus. Of course none of this is certain...

All of these conditions have similar symptoms. Mine are: chronic daily headaches which sometimes turn into severe migraines, chronic and severe "flu-like" body aches especially in knees and shins, severe muscle spasms in the neck and shoulder as well as top 2 ribs, severe fatigue, general "sick" feeling, swollen glands, mild fever, burning sharp pain in elbow and wrist, etc, etc, etc....

I have been tested for many things, all inconclusive, of course.

Over the last 8 years I have been prescibed many meds for the symptoms; vicodin, ultram, amerge, antidepressants, topomax, neurontin, amytriptaline, etc. The only one that really helped was Neurontin, an anti-seazure med, but the negative side-effects were horrible- I ran into walls, could not type, my speech was slurred, it was really weird.

My Primary Care doc also acted like he did not beleive me, the only thing he wanted to do was put me on anti-depressants. I finally just told him, after 7 years, "just please refer me to a pain clinic for the chronic pain and a neurologist for my migraines", and he did.

Unfortunately, the only thing they have done for me is prescribe meds, I feel like a test dummy for med combos.

The meds help on the surface but I am concerned about the long-term effects on my body like potential liver damage and damage to my intestinal system from chronic pain med use.

Also, I want a definite cause for this pain, not just to mask the symptoms.

I have begun to see an MD who also practices alternative thereapies and he is the one who is testing me for Lyme disease and Brucella, which could really be the cause for all of this and can be trated and possibly cured with antibiotic therapy.

I do not know what is going to happen but I hope somthing good happens and soon.

-- b, February 7, 2005

Some years ago my sister & I were discussing the state of our health and we both commented, "I never get sick normal, I always get sick weird!" I noticed that I expierenced a prodromal (or warning) at the beginning of the onset of each new set of symptoms. I caught a varient strain of Chickempox along with an Africanized strain of Epstein-Barr virus from a military African student at the Army hospital where I worked as a nurse. This should have lasted 2 weeks tops, but one complication after another kept me bedbound for over 4 months. At first pain was not a big concern, but rather extreame, gut wrenching fatigue caused me to have to literally crawl up and down the stairs and to the bathroom. I finally was well enough to return to work part-time. Then as we were working with pregnant women they checked our measles titers for immunity, I DIDN'T HAVE ANY! This even though I had had all 3 kinds as a child!

My employeer gave me the MMR injection (weakened live virus, mind you) and gave ne the measles and of course I had ALL the complications, respiritory, muscle and joint pain. light sensetivity and the low crawl up and down the stairs & to the john. I also developed multiple fatty invaded lymph nodes throughout my body with some especially extra tender ones at ALL the f Fibro- tender points. That is when the un-relenting, bone gnawing pain began. We tried All the NSAIDS, I'm allergic, tricyclic antidepressants, side effects unbearable. Totodol, Stadol, Nubain. Nurontin, Keptra, Ultraset. as effective as a sugar pill. DEPAKOTE, Yeah, low dose completely stoped migraines! Oxicontin, Morphine, lortabs, vicodin. First good relief of pain but sonombulence, falling, orthostatic hypotention, loss of memory the neuropathy to legs became so severe I ended up in braces & crutches, a walker and a cane. I forgot a whole year. then thankfully I developed an allergy to that catagory of meds so I can't take them any more.

I am essentially stable at present on Methadone 5 mg to 10 mg twice a day. Darvocet100 for break-through pain. Guifenicin 1200 mg twice a day. I've developed diabetes (mild, well controled with meds and diet) but the side effects have progressed pretty rappidly with total lose of feeling to feet up to ankles & moderate neuropathy up to knees. All of this with neuropathy to lower arms & hands and pain on a 6 to 8 scale. Besides the pain is the all encompacing fatigue. I sleep from 16 to 20 hrs a day. One world famous pain specialist said I was just a frustrated hysterical housewife that needed a psychiatrist before he would see me again. I saw the shrink who pronounced me well adjusted with out any underlying psychosis of any kind.

Now all I need to do is find a new Physician because we are moving from Texas to upstate New York in the next few months. So if anyone knows an acceptable doctor in the Albany, Troy, Schenectady or Saratoga Springs, Glens Falls areas I would love to know about them ahead of my move. Deanna

-- Deanna, February 9, 2005

One more important thing --- Very important!!

Forget the alternative medicines:

I have literally spent thousands and thousands of dollars trying to get relief if not a complete cure.

Hypnosis - great for stress but doesn't cure the underlying disease progess

Colonic - enemas - kelation great danger of introducing an alien microbe into an already compromised immune system

massage - how good it feels - but the is a very real risk of torn muscles and ligaments and even fractures due to your body's deconditioned state.

Chiropractic - gentle manipulation and body allignment probably will do no harm but forget all the herbal concoctions and vitamin formula's they want to sell you at exorbident costs. The vitamin food suppliments are not regulated by the FDA and concoctions often contain exotic things that have no business in the healing trades. Some ingredients have exoctic names for items that have already been banned by the FDA as being toxic or harmful. A famous example is Efedra.

Remember you have to be your own strongest advocate.

Always ask what ingredients are in any pill or liquid or additive a nurse or doctor tries to administer to you! You could be saving your own life!!

PEACE & ALL GOOD!!! DEANNA

-- Deanna, February 9, 2005

I'm 36 years old and I was told that I have fibromyalgia after my youngest child was born 9 yrs. ago. I can tell you it has been a roller coaster ride!! I have tried to learn as much as I can about it. It just amazes me the amount of people that I run into that has it or knows someone who has it! The pain can be horrible that its hard to describe. Right now i have severe pain in my chest and ribs. The fatigue is misable. I have to rest during the day or I will get horrible headaches. I have tried taking different meds. but the side effects always stopped me from contiuning. I enjoyed this website, I helped me understand that i'm not alone.

Leslie

-- Anonymous, February 15, 2005

Im in the military and the job that I preform is very stressful. Nothing physical but tons of paperwork. While I was eating lunch, I took a drink of soda and bent over really fast to tie my shoes. I felt a wierd pain in the mid to lower left of my chest. I of course thought I was having a heart attack. Went to the emergency room and was told that I was ok and I left. Over time the pain has spread over my rib cage to my sternum and is constantly hurting everyday. Some days are good and other days are bad. My health records went from being very samll to novel size perportions. I've seen about 6 doctors now in the last 2 years. Some telling me to get on with with my life while others say take this med and you will feel better. I just turned 33 two weeks ago but at times I feel like Im 53. I can touch my sternum and to the left of it (my ribcage) and it is tender to touch. My physical therapist tells me that it cant be fibromyalgia because it's to spread out. My reumatologist says that it's myofacial pain and to better my lifestyle and to workout more. Sometimes the pain get to me so much that I have anxiety attacks thinking that I might have a heart attack at any moment. Any suggestions I would gladly accept them.

-- Brad, February 18, 2005

I had a lot of these symptoms for a while and was taking perscription anti-inflammatories twice per day and all of that, too. Back aches, muscle aches, migraines, neck and shoulder radiating pain, terrible plantar fascitis, fatigue, arthritis, ya-da, ya-da. I had been on Atkins, and trying to lose weight to alleviate the pain and fatigue. Well, then I went on this grapefruit kick and over the next few months, I noticed that my symptoms were all but gone! I have since read that my symptoms plus the sign of little curled hairs that don't quite grow out right, are those of a lack of vitamin C. I think that is what was wrong with me, now. Haven't had problems with this in several years since. Did I have scurvy? Who knows, but it was so simply solved and now I'm better.

Maybe this will help even one person!

-- M, February 27, 2005

I suffered with Fibromyalgia for it seems like the day I was born. At age 40 had what I thought was a nervous breakdown and with no help form family members who thought i was crazy and docs with meds. I detox my self with prune juice, got rid of my stressfull jobs which means cut in income, peace of mind and the way to healing naturally. I under no circumstance will allow stress in my life if I have anything to say about it. No unpleansant situation and if it means seperating my self from those who cause me discomfort then so be it. Put your self first above all others and you too can beat Fibromyalgia. Knowing that I have controll made a big difference.. Some may say, sound like you got a chip on your shoulder, well so be it , this is my life.

Hope this helps.

-- Valrie Williams, March 2, 2005

Sounds like something in your diet, have you cut out soda for awhile? Fibromyalgia can spread out but it seems unusual that this particular pain started when you took a drink of soda. I had an incident where I drank soda in the morning instead of usual coffee. My first drink and I rolled over in pain I thought i was dying. My pain was in my left side. I later found I had diverticulitis which is and ulcer like pouch in the intestines. I have never been so scared and hurt so badly. Your pain sounds to high up for that. But could it be ulcers or esphogeal problem. Hope you find answers. I was told to increase fiber and I have not had a recurrence. God Bless You and I pray this will be resolved and be a good year for you.

-- suz, March 4, 2005

I an not sorry to say some

Drs stick people with chronic diseases like Fibromyalgia because they give up to soon. It is time consuming and gets into their pocketbook if they start looking to hard for what is causing a person pain. I know they get frustrated but what about the patient. No wander so many people get addidcted to drugs ie; pain relievers. And get put on expensive anti-depressants. When you are told you have FMS or some other chronic unknown you get caught in a world that will look at you as the syndrome. I was told to embrace my fibromyalgia. How many people embrace disease. Are Drs so burnt out that embracing is the only thing they have left to offer. I'M ticked and say embrace wellness, we will keep looking for answers cures, do research. Be your best advocate. and who knows how many people you will help

-- suz, March 4, 2005

THANK YOU

I'VE BEEN FIGHTING THIS BATTLE FOR 15 MONTHS OF EXTREME PAIN, FOR THE LAST 5 YEARS THIS CONDITION IS NOW EVIDENT TO ME! MY DOCTOR NEVER HELPED ME.

I BELIEVE A POSITIVE ATTITUDE IS YOUR ONLY DEFEND, AND YES WE MUST TAKE CARE OF OURSELVES FIRST. WHICH IS A VERY DIFFICULT POSITION TO DO WITHOUT FEELING GUILTY. MOTHER OF FOUR CHILDREN, BEAUTIFUL HOME AND YARD WHICH WAS A LABOUR OF LOVE, TWO SUCCESSFUL BUSINESSES. WORK WAS SOMETHING THAT NEVER BOTHERED ME...NOW I HAVE A PROBLEM WITH FEELING LAZY, INSANE, ....THANK YOU FOR ALL YOUR COMMENTS....I'M NOT ALONE!!!!

GREAT ADVICE, HOPING TO TRY SOME REMEDIES FOR LESSENING THE PAIN, I TAKE 3 HYDROMORPHINE CAPLETS AND FEEL LIKE I HURTING MYSELF DOWN THE ROAD, I'M ONLY 39.

-- JUDY, March 10, 2005

Approximately 5 years ago I had an crick

in my neck on the right side that would

not go away. I don't think I had any treatment for it. About a month later the neck pain went into the top of the right sholder and down the right arm. This went on for over a year and I had X-rays and MRI's. Only thing that showed up were buldging disks. I had a steriod shot next to the spine in the neck area and the problem subsided for about a year. It came back with a vengance and I had Chiropractic care and massage 2 times a week plushave the injection in pain medication. I limited that as I did not want to be hooked on pain pills. I was getting ready to have a steroid injection again but the pain moved to the other side in the neck, shoulder and down the left arm. Sometimes it is in both sides of my neck, shoulders and arms. I am sure that the Doctors think I am crazy but the pain keeps me from getting any rest and I only sleep a couple of hours at a time at night. I've had almost every test and am scheduled in a month to see a surgeon. The only thing that gives me relief is a topical spray by life time. it has Glucosamine-MSM-Boswella. I spray it topically all over my neck, shoulder and arms and it gives me about 30 minutes relief and this relief helps me go back to sleep. If any of you have had a similar problem please let me know what you have done. Thanks. Dave

-- Dave, March 10, 2005

I am 25 and I had my 4th child 16mos. ago since then I have had pain in my lower back and hips, sometimes it is so bad that I can't stand but sitting is no better, now I have been getting a burnining feeling with it, I have been to see doctors but they tell me nothing is wrong and told me it would go away, but it only seems to be getting worse if anyone knows what is causeing this please let me know, I could really use the help.

-- carrie, March 20, 2005

I am 28 and a mother of two and currently working part time,..I have suffered with FM for about 3 years now and am in EXTREME pain much of the time,..I have done everything from acupuncture,..to diet change,..to chiropractor and massage therepy,...As well as pain killers on a regular basis...I am struggling with where to go for help with this illness,...and its hard to NOT let it get me down,...but i keep going,...because i must. Its nice to know i am not alone. I guess we must all just hang in there and pray for a miracle.

-- jenifer, March 31, 2005

I have severe sciatica from a bulging disk in my back and also have chronic arthitis in my foot from an injury at work.I am in the construction business.There are times that I can't even get out of bed.I have to work.I have no insuranse and was hoping that you could send me a strong pain pill,so when I am really hurting I can get some relief.I could fax over some doctor reports from my injuries,if you give me a fax #.All iI ask is for a strong pain medicine so when my body pains act up ,I can still function and continue to work to pay bills. Thanks for your help Rich

-- Rich Zeligmen, April 6, 2005

Hi Everyone!

I have really enjoyed reading your postings and I find that I am facing many of the same challenges that you are. I am sorry for your suffering yet at the same time, I am grateful for your honesty as most of the fibro people I meet either aren't as bad as I or don't want to talk about it.

I have a burning question but first, some background...

I am 45, Mom of four (ages 4-12) and have been disabled but no fibromyalgia diagnosis unil last month. And no SSI (of course, you cannot get that with no diagnosis).

Here goes, something has always been wrong with me. Since I can remember (at least age 5) I have been sickly or as they used to say, "delicate". Every cold, every virus, every disease of childhood that my siblings got lasted twice as long for me. I could and still can hand on to the same cold or get it again for several months.

I also was depressed as a child, had sensitivity to hot and cold weather and had little stamina. I was well fed calorically if not nutritionally and had not had any surgeries or hospitalizations. I had chronic sore throats for years, swolen glands and fatigue but nothing beyond the childhood diseases of the 60's. Many of these are Chronic Fatigue symptoms. While they did wax and wane, they never went away. Instead as I reached teen years, I added urinary tract and yeast infections to the list.

Beyond this the only other consistent problems I experienced was weak ankle and knee joints that caused frequent falls and sprains. (Graceful little doe that I am, I even managed to fall of the crutches the doctor gave me for a sprained ankle and ended up in a cast!) I guess the Lord decided that I needed to learn some humility. This stage of my health failure was limiting enough however and I simply could not hold down a job.

I continued like this until I had my first child. THree weeks before I gave birth, I had a strep infection of a skin tag on my upper theigh. I was hospitalized for 3 days and very sick with high fever and intense pain, esp in the site of the absess. But the pain left in a week. Then the nerves in my hip were damaged during childbirth and that same pain returned. Of course the Dr said it would go away and that there was nothing wrong in there but here I am 11 years later with extreme fatigue and tons of FMS/CFIDS symptoms such as;

Hip, knee, Upper & lower back, shoulder, neck, wrist, buttocks, thiegh, chest wall pain, Numbness and tingly feeling shooting down one leg to my foot, TMJ, inside of elbows pain, shin pain, (need I go on?) I can just see you nodding your head as you read on! :o)

Have had a spastic colon as long as I can remember, Depresion and anxiety(which could be controled by limiting junk foods for a long time but needs meds now), a hiatal hernia (ditto), dismenhorrea (since 13).

More recently, I have been diagnosed and treated for degenerative disc disease. I have also been misdignosed through the years with 'Mild'(didn't show up on their nasty little test), carpal tunnel. (I guess you know its really fibro.), Lyme disease (ever have medication hives over most of your body?), Osteo-Arthritis, Bursitis, Tendonitis, Hypocondria, Manic-Depressive disease (hee, hee) etc.

Until I went to a new rheumatologist in town, I didn't think I'd ever get a proper diagnosis. But I've known what I had for years! (Gee, what do they keep stringing us along for? My Mom is 30 years older than me, has had the same symptoms all her life and reads like a textbook case book of FM/CFIDS and she still doesn't have a diagnosis.

I recently was given my first ever pain medication for Fibro (Naproxin). Of course it didn't work but at least he's trying. I can be patient another few months...if I have to.

Meanwhile, my burning question:

IS THERE ANYONE OUT THERE THAT SHARES A SIMILAR HEALTH HISTORY WITH ME?

(Poor health since childhood, etc.) Please write and share your story.

Thanks,

SUsan

-- Susan, April 18, 2005

It has been six years and I am getting so I have difficulty while walking.I feel that my nerves and muscles in my hips and legs to my toes are being stabbed inside of me.I have been told to do p.t. and take pills to relieve pain.I have done this.Many many times.And it is getting to effect my walking just to the mail box.Does any one else have this?I wish I could find a doctor that doesnt think I am crazy.

-- Anonymous, May 8, 2005

I am a mental health nurse attempting to assist a client with fibromyalgia. Any advice or tips to do the best possible job, would be most great.

-- Anonymous, May 13, 2005

I have reak all the letters sent in on this web site. I have all the same symptoms and all the Doctors from pain management to Psy. and still am having a lot of pain! What is the answer? I am tired of being in the house and in bed. I start to feel better then the next day I am back in bed again. What is the deal? Is there no one Dr. out there to help people like us?

Please write me and give me some answers to this Fibromyaliga problem.

Mary

-- mary, May 26, 2005

hi, i have fibrom, chronic fatique, now the m.r.i says i have a bulging lower lumbar disk and i have to have spinal injection. i have had back trouble for yrs. i knew yrs ago that i had spondolitheis. i can't take pain or muscle meds. i'm about allergic to every thing. so, what do my dr's tell me about fibro? that i have to live with it the rest of my life! but these are same dr's that dignoised me a diabetic in 1999 , but didn't inform me until 2004. blessings!

-- loraina, May 28, 2005

I was diagnosed with FMS in 1989. I was such a sceptic that I saw many doctors over the next 10 years. I have been tested and sometimes diagnosed with almost every disease or condition out there. Always to end up with FMS. 3 yrs ago an MRI proved tears in both my knees. I was almost excited to actually have something other than FMS. Something REAL. I've had 4 knee surgeries. Yea, it sucks. FMS plays a large part in pain control and God only knows what they do to your body when you are in surgery, but if feels like you've been hit by a car afterward. The last meniscus repair I had I let them do both knees at the same time to save myself from having surgery twice. Remember, if you have FMS, it doesn't mean that something else couldn't be wrong. Have it checked and be persistent. 7 yrs I complained about my knees until I changed insurance and a new doc ordered an MRI. I didn't tell him about FMS. Pray for a cure. FMS is a drag. Drugs are never enough, we all know that story. If anyone cares, write to me, don't forget to ask me on my theories about Vicodin vs Morphine.

-- Vickie, May 28, 2005

i am 27, a mother of two, and i know my mom has lupus, no diagnosis has been made. My husband saw a news report about fm and said i was the poster child. He agrees i live as healthy as possible, and the pain is real!! I am not obsessed w/what is wrong, i just want to feel better and be productive, and be a wonderful mommy and wife. I started to give up, ask for help, don't give up, and don't allow yourself to be labeled as "drug-seeking" tell your doctor EVERYTHING!!!

and if you think he or she is insensitive tell them in a diplomatic manner. No person should have debilitating pain, especially when they are trying to better their life.

-- Anonymous, June 1, 2005

I was just reading through this great forum had had to respond to the post from Lidia eventhough it was from way back in January 8, 2003, a nurse, who I am almost positive was referring to Dr. Goldenberg at Newton-Wellesly Hospital, a pioneer in the fibromyalgia field, and one of the 1st doctor's to take this syndrome seriously. First of all he does not actively peddle his books from his office, he has a copy on the counter that I always leaf through while I'm in the waiting room. It's funny for someone that wants to make so much money, but actually 1/2 the people that see him (he makes a bunch of appts and for those that are diagnosed as positive come back for a lecture etc...) are told they DON'T have fibromyalgia. You follow up with him every 1.5 years, but you are also supposed to see you own doctor in the mean time - obviously he isn't going to prescribe medication to anyone he only see every 1.5 years. Also, he STRONGLY reccommends alternative therapy such as acupuncture, and the not so alternative meditation, but most importantly exercise and stress reduction. Dr. Goldenberg has also been involved in research researching the origin and behavior of pain - because even if it begins as psychological pain, pain pathways are made and tons of trials at his hospital and other trials in conjunction w/ Boston hospitals. Lidia, I thought that most of what you wrote was right on but to slander a Dr. - if it is Dr. Goldenberg (and who else is in Newton, MA that is a world expert?) takes away the positive things you have to say and makes you seem bitter and ignorant. Medication has helped me enormously so that I could get through the pain to start exercising and make the necessary changes I had to. Provigil and lamictal were the most life altering positive ones. Meditation has been a godsend. I have had thyroid cancer since my diagnosis of fibro in 1999 and still find that the combo of meds and exercise, etc... is what's best for me. Also having a definitive 3rd opinion from an expert (who saw his wife being treated so badly by the medical community that he decided to specialize in fibromyalgia and write a book for those who were also suffering) who didn't make me feel stupid or like a hypochondriac was the best medicine of all. Thank you all for listening.

-- Judith , June 4, 2005

Hi Everyone,

I have never been on this site before and have read everyones story.I feel for all of you and know the great pain that you are in.

I was dianosed with Fibromyalgia over two years ago when I got injured at work.I had physical therapy for over a year,{no help at all}.Massage,shoulder and back injections of cortisone.Many medications of every kind.I have been lucky that I have found a few doctors who understand the pain that I am in.my pain-management doctor said that his fibromyalgia patients were impoving on a drug called. "Cymbalta" He gave me samples the other day,which I have not tried yet.

I also have high blood pressure,thyroid disease,two lower ruptured disc,arthritis,and on occasion get panic attacks.Everything is under control except for the Fibromyalgia,and the band anxiety.I take hydrocodone,and ambien in order to sleep at night.I guess everyone is different as far as their symtoms are.I have pain in my upper back,shoulders,leg,and a lot feet pain.And like what was said,you hurt everywhere.It feels like you have the flu at times.I have swealling of the ankles so when the tops of my feet hurt,I can barely walk.I am trying to do some streaching,light excersise,and try not to take too much pain medication. Pleas look up on the internet "fibromyalgia" you will get a lot of helpful information. Also try " MedicineNet.com" They tell a lot about it. So what we do know about it is that fibromyalgia is a chronic condition causing pain,stiffness,and tenderness of the muscles,tendons,and joints. No wonder we hurt!!! Fran

-- Fran, June 12, 2005

I suffered for months with fibromyalgia after coming off Prednisolone.

I started walking for exercise, taking a liquid calcium supplement and cod liver oil. Very happy to say that the pains and stiffness have gone!

-- Anonymous, June 13, 2005

I was diagnosed with fibromyalgia on April 27, 2005. I have been suffering with pain for more than ten years. I was injured in the military, basic training in 1994, since that injury I have been getting worse with every passing year. I will be filing a disability claim with the Veterans administration as I feel the injury I sustained in basic training contributed to me developing fibromyalgia. I already have a disability claim with the VA and receive disability benefits, but the pain I have now I feel is caused from the trauma of other injuries received in military training. There are days when I am pretty good pain wise, then there are days when I can not walk because of severe pain in my right leg and hip (injury in training was to sacral joint). My husband and I were at a fair and by the time we had reached the gate to get in I was barely able to walk. I had to stop every few minutes to recover from pain so severe I was in tears, but I would not let that stop me from some enjoyment that day. The next day I was ok with minimal pain in my low back and leg. It is days like that that make me doubt my sanity. My VA doctor won't treat my pain with medication, for that I had to go to the outside and get Ultram 100mg 3x aday for pain, I don't always take that much. Sometimes only 50mg 2x aday and 100mg at night with muscle relaxers to sleep. I still wake up in severe pain but at least I get some sleep. I keep hoping for a doctor who understands and can treat me with the respect and care I diserve ( we all deserve this). I wish every one with this disease ( and it is a disease) the best of luck in treatment.

-- Anonymous, June 15, 2005

I am a first grade teacher who has rheumatoid arthritis, Celiac Sprue Disease, and Systemic Lupus. I am no longer able to enjoy teaching because I am in so much pain on a daily basis. I am using narcotics for pain and I am still unable to function due to severe muscle aches, swelling of the joints weakness/fatigue, headaches, and chest pains. I do not want to give up my so loved career, but I am not able to perform to the standards i had originally set for myself. I will not be able to continue working much longer. I will need disability to be able to care for my self. What are the steps I need to take to start disability preceedings?

-- Janet, June 18, 2005

I read the above intro article and a number of the

posts. Does anyone else see a contradiction in

some of the info or did I misread this?

Below are 2 quotes from above:

"Physical reasons for fibromyalgia syndromes will

one day be found, but until then, neither patients

nor doctors should dismiss the disease as

something that's not real."

"Too many times fibromyalgia and chronic patients

are drug seekers, moving from doctor to doctor to

fill a larger prescription."

Personally, I have heard of and talked to thousands

of mistreated patients who BECAME distressed

AFTER suffering enormous pain for years. I am one

of these. I had my dream life and was positive,

active, happy, successful, loved life, and looked

forward to every day until pain and mistreatment by

the medical profession became a way of life. For

years after the onset of the illness I maintained a

positive outlook and dismissed rude, insensitive

doctors as having the mental problem ... not ME. I

laughed when doctors tried attaching the "mental

case" tag to me and realized they had no clue what

they were doing and didn't take the time to even

look at me ... it was obvious, tho I was concerned

about the pain and was disturbed at having to give

up my beloved career and many enjoyable

activities, I was a well-rounded, happy, educated,

positive, likeable person.

But, YES, after 7 years of increasing pain, being bed

ridden almost the entire time, being shuffled from

dr to dr and surgery to surgery, having my

character questioned over and over, being accused

of being an addict and a psycho case has taken it's

toll on me. I dare anyone who accuses so many of

being mental cases addicted to pain meds to try

living this life. Give up your career, all your

activities, lay in bed in enormous amounts of pain

24/7, be too exhausted to spend time with your

spouse and children, give up all your hobbies ...

and do this for years on end ... THEN tell me you

aren't down. And YES, many of us do seek pain

medication ... not because of any addiction (since

when the pain decreases I have often been able to

drastically reduced or eliminate all meds) but

because of PAIN. Go figure. Refuse a diabetic his

insulin and lets see if they don't "seek medication".

Of course there are incidents of addiction but of

those I have known on pain medication, amazingly

few even WANT to take it and will do almost

anything to decrease or eliminate it. Major stars

make big headlines admitting their addiction but

they are usually the ones who have an easy time

getting all the pain meds they want, whenever they

want, just because they ARE stars. For the regular

population it is extremely difficult to get help with

true pain in this country. I do everything I can to

take as little medication as possible and often, to

my own detriment, take too little because of the

fear of addiction. It took a doctor several years to

convince me to take enough to be able to take care

of myself. When I took some and found that, not

only could I get to the bathroom without help, I

could walk out the door of my house into the fresh

air and sometimes even take a short walk. That did

more good mentally than laying in bed moaning in

agony.

If needing to get even a small portion of life back

and wanting some quality of life means you are an

addict and drug seeker then everyone with any

illness that needs medication would have to be

classified as an addict and drug seeker. Oh, and I'll

even admit to hording medication. Actually, I keep

any extra locked in a safe. I know there will be

times I feel good and take little, if any. During

those times I put it away ... for those times I am in

agony and cannot get help. Call me anything you

want but I know that the true me is a fun-loving,

happy person who happens to have a medical

condition that causes pain.

-- Anonymous, June 24, 2005

I was on my way to work at 6:24am,1989, 24 years old. Doing roughly 70 MPH, exiting the freeway, when I pushed on the brakes, nothing happened, my Master Cylinder went out and I have no stopping capability. After waking up from unconciousness,down a 30 ft. cliff, recently striking a curb and an industrial fire hydrant, with water gushing 100ft. into the air and flooding the company parking lot nearby, I try to get up, I CAN'T. I hear fire and rescue squads approaching. I tell the witnesses standing over my limp body," I could not stop", in a frantic way,crying and hysterical. They rush me to the nearby hospital in the Ambulance. They do CT scans, MRI's etc.... They have concluded I have heart trauma, in which I needed to be hooked up to a monitor in I.C.U., I have a blow out fracture on my face, I need stitches on my right knee where the motor caved in and encased my leg, and I have fractured my L-1 lumbar spine.

O.K. so there it is, we have it. A young, healthy, active young lady is recovering in the hospital and will be seen by an orthopaedic specialist upon release. A couple of months and WALA!! "You are released in full recovery status". I return to work with full limitations, and do well, for a time.

Well years went by and I did not have any problems. Until one wrong move disabled my back for a few days. A few years later, BAM!, another bout of back problems. This happened two more times, each incident, disabling me more and more, until the bouts made me basically incapable of temporarily walking at all. Laying down was extremely painful, and this has been within the last 6 years, 17 years after the accident. . Went through Motrin 800, Flexeril,Vioxx, Soma, Vicoden etc...Had X-Rays done and they keep saying there is nothing wrong with my spine. I asked for an MRI, they said my insurance will laugh in my face, "we need to go through the proper channels of relief", which is physical therapy, which helped until the next back problem.

Well every now and then, my back goes out, missing work for one to two weeks, because of lifting or simply moving the wrong way at home. Well now I hurt all over. Simple tasks are over excursion. I am grumpy and cannot perform the tasks for long periods of time that a normal person coould do. I ache in my shoulders, legs, hips and of course my normal 'back ailment'. I do not sleep good, because tossing is very painful to my entire body. I am exhausted upon waking up for work. I recently went to my PC, and he asked if I was depressed. OF COURSE I AM!!! After telling him I am tired of being in pain, sometimes just to move my arms was a task, crying to him, he suggested I go to a Nuerologist. I DID, and she said there was no evidence of nuero problems or FM, that excercising would be a terrific alternative. She also ordered X-Rays, which I did that day. She sent me results in the mail stating that it was apparant that I had a deformity of the L-1 spine. HELLO!!!! They did not belive me when I cried to the initiating PC, he thought I was depressed and I was crying wolf about my pain. So what now??? Is the pain in my body, in my head? There is no DX for my pain, and they MENTION FM, but am not diagnosed with it. I would like to say that I pay over two hundred dollars a month for medical premiums for a doctor to tell me that there is no logical or medical explanation of the pain I describe to him. I told him I wish you could live in my body for one week to see what I mean. My friends do not understand either. I don't think they understand what I really feel. They say you are only 39, why do you act like you're 70? Can't fake what I feel, right? Anyways, done with my complaining. Thanks for the listening and understanding. Not asking for a cure, just appreciate the ear. Good Luck.

-- RR, July 22, 2005

hi i have had severe chest pain now on and off for years my doctors says its where my sternum has gone into spasm and he prescribed nsaids i just wish i knew what this pain was when i get it ,it makes me very angry frightened scared that its my heart i just dont know there is never a day where some part of my body does'nt hurt but according to all hospital tests theres nothing wrong with me sometimes i feel like i'm going nuts like i just invented the pain for something to do well let me tell you i'd do anything to make it all stop.

-- maggie, August 12, 2005

I hae been taking rh eumatoid mecine for some time and just read in Family Circle that some medcations can cause skin tumors (Page 44) have had several cancer operations on my face mole, eyes, Since readind this,I have always felt that there was a link between pills or REMICAde which I take also. Can you tell me the truth about any of this? Jane Erk

-- Jne E. Erk, August 14, 2005

I have suffered all my life from depression,so I know the pain I feel is real physically,although I have trouble seeking the help I need "i.e", can't keep apps. beacause seriously have problems around people;I do with family,but, it wears me out cause I put on a fasod so they won't worry or get more aggitated (all 3 of my children do not understand & they're pretty much sick of me. (don't blame them a bit, pretty darn sick of it myself!

Constant exscrutiating pain.

The latest pain is armpit pain that continues thru my breast bone,in fact, I'm going to e.r @ soon @ the cab shows up, I have severe shooting pains sporatically thru my body,my arms & legs jerk & twitch when I'm almost asleep,I didn't do anything to my foot (left also) day before yesterday,index toe when I woke @ 3am feels like it is broke in 2,can't put any pressure down. Toes have curled up on me for as long as I can remember,feels like they're breaking then also. I think my dr. excuses alot beacause, 1, busy & 2, brushes it to dep.

-- Kathy F. Wilder, August 16, 2005

I AM A 59 YEAR OLD RETIRED NURSE....I HAVE LUPUS, FIBROMYALGI,HYPERTENSION,ACUTE INTERMITTEN PORPHYRIA,I HAVE THYROID CANCER, RHUMATOID ARTHRITIS SEVER ASTHMA,CHRONIC HEADACHES,AS WELL AS MIGRAINS,IHAVE FAINTING SPELL WHEN MY HEART RATE GOES UP,AND WHEN MY B/P GOES UP I GET SEVERE NOSE BLEEDS, I HAVE 3 HERNIATED DISCS IN MY NECK AND 4 IN MY LOWER BACK I HAVE CHRONIC INSOMNIA,AND I CAN NOT GET OUT OF BED....BETWEEN SEVERE PAIN THROUGHOUT MY ENTIRE BODY AND A FATIGUE BEYOND ANYTHING I COULD EVER DECRIBE....FOR PAIN I TAKE 2 ASPRIN AND 2 TYLENOL....AND SOMETIMES A SLEEPING PILL I CAN TELL YOU I AM EXTREMELY DEPRESSED...I HAVE NO LIFE MY DOCTOR JUST STARTED ME ON ANTIDPRESSANTS...I PRAY IT WILL HELP.... I HAVE A HUSBAND WITH 5 CANCERS...ALL DIFFERENT TYPES IT'S CALLED A CANCER CLUSTER....HE WAS JUST TOLD 2 DAYS AGO HE HAS THE 6TH...STOMACHE CANCER....I NOTICED MY PAIN BECAME UNBEARABLE...SO I KNOW THERE IS A PSYCHOLOGICAL COMPONENT TO THE PAIN....I JUST DON'T THINK I CAN HANDEL IT ANYMORE....THE PAIN IS SO BAD RIGHT NOW THAT I'M CRYING AND TYPING WITH 1 FINGER ....IF THERE IS ANYONE WHO KNOWS WHAT I CAN DO TO HELPMYSELF,SO I HAVE THE ENERGY ENOUGH TO HELP MY HUSBAND....IT WOULD BE SO GREATLY APPRECIATED...THANK YOU, JUNE ANN

-- JUNE ANN, August 18, 2005

About fibro. My experiance began in my last trimester of my second miracle pregnancy. I was trying to sleep at night I slept in the livingroom on my recliner with my two year old beside me.

But I wasn't sleeping becouse my legs felt like they were crawling and on really bad nights also my arms. Still working in a warehouse driving a forklift loading tractor trailer's with lawn and garden products, at nights sometimes pulling double shifts becouse we were short handed, Yes eight months pregnant, and barely could walk but I had to work, my husband was home with a crushed foot. My son was born a month early due to his size, I am a 5'women. and he would be my second c-section. So driving the forklift was a breeze, compared to what I had done prior to my pregnancies, I use to be the one who stacked the 50# bags and 60# boxes of grass seed and bird feed onto pallets from the bottom up some pallets would be 16' tall all stacked by me. If I couldn't reach it I would set it on the walkie then climb onto the walkie then bend over pick up the bag and toss it onto the very top, I did that for 10 years, pulling the bags from the bays onto my pallets. So after my son's birth the leg and arm problems continued, I started keeping track of my hours of sleep and on an average I got 2 to 4 hours of sleep and that was only after sitting up so long I just passed out. My ankles, knees, back, along with carpal tunnel, just in 2004 my left elbow started in on pain, and now my right elbow is in pain it is difficult to put on my clothes. My first experiance with a doc. when he asked me what was wrong I answerd all of the above plus my hips........Wo! he says lets just start with one thing at a time. I knew then it was going to be a long journey. I gave up and finally went to see a doc. becouse I was getting short temperd with my babies, and lashing out. So much for that doc appt. So my second doc diagnosis me with Restless Leg syndrome firt time I ever heard of that, but called the fibromyalgia a blanket deseise, and yet couldn't explain my all over pain. Had me on tylenol 3/codein, it was drying me out so bad. I thought it was time to move on.. Third doc. I'm still seeing and on a continues basis. Wer'e messing well together. Although at one time even he made acuations of me being a pain pill junkie, comparing me to the last patient he had just had in there. Oh how I lined him out. So my thoughts on my all over condition is a long period of extreme over use of my body, then having my chieldren in my late thirties, now menopause. Women waiting for a cure.

-- Debbie, August 18, 2005

What if suddenly,you find your having pain that is taking over your whole body,from tip to toe,and it moves around from one place to another over and over,and mainly in the abdomen area it's not intense, but so upsetting,and I can't imagine what is causing this.

Over the weekend,I could not do anything about it, but will call DR. tomorrow and seek a speedy appt.

This is a true mystery to me,and I find I have no desire to do anything.

My spine started to hurt,then came the rest of it.

Headaches,and just a rotten feeling of all over weakness,with pain popping up here and there,all the time.

I hope I get answers to what is going on,after exam, and whatever else I might have to do to confirm whatever this is.

Thanks for reading this,----

I'll never find this site again so if you have anything you might like to say please reach me at

Cheska100@aol.com

-- Anonymous, August 21, 2005

I WAS DIAGNOSED WITH CF/FM IN 2004, IV SPENT THOUSAND OF DOLLARS ON DOCTORS FOR APPROX. 10 TEN YEARS. SPECIALIST, ER'S & SO ON. FINALLY AFTER GOING TO SEVERAL SINUS DR.'S ONE FINALLY SAID TO ME I THINK YOU HAVE FM. AND THAT WAS THE BEGINNING OF THE END OF MY JOURNEY TO FINALLY GET A DIAGNOSIS. TEST UPON TEST FINALLY REVEALED CHRONIC FATIGUE FM. SYMPTOMS ARE & HAVE BEEN, MIGRANES! SLEEPLESSNESS, STIFFNESS, ACHES, MORNING SICKNESS, ECT. HOWEVER! IM SO HAPPY TO FINALLY HAVE A ANSWER, I OFTEN THOUGHT I WAS GOING CRAZY!!!! I DID HAVE TO QUIT MY JOB AFTER 15 YEARS & IM LOOKING TO GET DISABILITY, UNFORTUNATLY FM ALONE DOSENT USUALLY GET IT, BUT I GET CONSTANT MIGRANES, WHICH IS UNFORTUNATLY WHAT YOU HAVE TO HAVE IN ORDER TO GET DISABILITY, SO THE LAWYERS TELL ME!

GOOD LUCK TO ALL WHO HAS THIS SYNDROME?? OR DIEASE?? WHATEVER IT IS.

-- Terry , September 4, 2005

i have chrons disease and so does my sister.i have been on remicade chemo for a year and a half,a bile resection,gall bladder removed,uterous,4overian cyst,and left overy removed.all this sugery in less than a year.Im only 35 years old.

-- Anonymous, September 10, 2005

At one point I was on 11 different meds for pain, sleep, and depression. I was diagnosed by three different drs as having FM. I have 15 out of 18 tender points. At one point the pain and depression were so bad that I stayed mostly in the bed for over 6 months.

Then one day I said enough. The Drs were treating me like a drug addict and none of the meds they had me on were working. With pain meds I still hurt, with sleep meds I couldn't sleep more than 5 hours, and with depression meds I was still depressed. Alot of my depression came from the pain, and from the way the Drs treated me even after I had been diagnosed.

These are the things that I did over time and I feel better now than I have felt in a long time.

1. I went off all the meds. That's right all of them. The only thing that I still take is Elavil at night for sleep and it is the only thing that works.

2. Started taking various nutritional supplements and herbs (email me and I'll tell you how to find the ones that work)

3. Went off all sugar, starches and flours. In other words a low carb diet. Anyone can say what they want but I can tell you from experience that this has helped me more than anything. If I eat any sugar or bad carbs my bodyaches come back immediately.

4.Developed a positive mental outlook on my own. This is the hardest part. Your life has been changed forever but it doesn't have to end. It is just a different chapter and a different style.

I will talk to anyone who needs to. I still experience some pain if I sit too long a certain way and so on but I can tell you that I am living again. I even went to truck driving school and I am starting a new job Monday. I was in management for 13 years and I finally realized that it was making things so much worse. It took me getting to the point that I couldn't work at all to realize this. The stress and long hours and irregular sleep not to mention the physical wear and tear on my body. I just had to think of something else that I CAN do and make good money at. I am very hopeful for my future and I did it on my own. I gave up on the DRs. I am not saying that they are all bad but there are alot out there who claim to know about FM but then act like you are a dope head when you take their medicine and it does not work. I have found that herbs and vitamins do more for me than any medicine ever did and they don't have the bad side effects.

Good Luck. I hope this helps and please don't give up no matter what.

-- Michelle Hamilton, September 15, 2005

i am a 41 year old women who has been suffering from right-sided pain from the neck down to the lowest part of my back. along with this pain i have pain in the middle of my chest and light-headededness often. i also am extremely tired even when i have had a good nights sleep. i also have neck pain on both sides towards the upper part near my head. i have had several test and been on several meds some for anxiety. pain management has consisted of several muscle relaxers, i have had 3 epidural shots and twelve trigger point injection shots in my back. i am still working full time but i do not know how to deal with this any more.

did i mention i also have shortness of breathe? doctors say anxiety and chronic pain syndrome. nothing has helped me.

-- Anonymous, September 20, 2005

I HAVE HAD I4 FEMALE SURGERIES IN THE PAST. I NOW HAVE PLNTAR FASCITIS AND DISC PROBLEMS WITH T3 T4 L4 L5 AND S1. MY DOCTOR HAS HAD ME ON LORCET FOR YEARS WHICH GAVE ME A PRODUCTIVE LIFE. HOWVER HE SWITCHED ME TO ULTRAM THAT DOESNT WORK. I WAS TOLD BY THE NURSE TO TELL MYSELF THEY WILL WORK. I HAVE HAD TESTS TO PROVE I HAVE REASON FOR THE PAIN. THE DOCTOR IS AFRAID OF LOSING HIS LICENSE IF HE PRESCRIBES NARCOTICS BECAUSE OTHERS HAVE LOST THEIRS. THIS ISNT FAIR TO A PATIENT. VER MUCH IN PAIN IN MALONE NEW YORK.

-- DOROTHY, September 29, 2005

It's starting again - the pain in my hip and leg

is so severe that I use crutches some. It's

been over a year since I've had this pain

and I was hoping it was gone forever. I had

a back injury several years ago that seemed

to start my problems. Now these episodes

always start with back pain and migrate to

my right hip and leg, making it very painful to

walk. Also, I find if I use crutches when I will

be walking a lot, even when the pain is mild,

I avoid the major pain. We moved about a

year ago and I seemed to be doing well,

until a couple of weeks ago. Now I need to

find a good dr and dread that. It is much

easier for me to function with the crutches,

but I hate using them. It bothers my

husband and sometimes I think he believes I

can walk, so why use crutches? I was

getting very dependent on them before. Is

this a bad thing? I haven't been diagnosed

with anything other than a herniated disc

and other problem discs in my lower back.

A friend recommended I try crutches, not a

doctor. I told the dr only once that I use them

and he didn't comment. But they really are a

help - with standing, walking and balance.

-- Anonymous, October 4, 2005

I've been dealing with my pain since I was 12 yrs. old(compresion fractures) from when I was younger.I'm now 43 and have been to every type of doctor and been told all the idiotic things that most on this board hvae. Find your own suppliers for you meds. Its much more easy.

-- doug, October 5, 2005

I need I have been on Oxycontin since 1997 Need help getting off but i have lot of pain whole body hurts doctor tells me live with it My pain making we weak not able to finish my housework. Help Juanita

-- Juanita Mc Millian, October 7, 2005

I was going to the doctor for my routine physical, in 2002. I was feeling great never had a sick day in my life. A little extreme, but I had not had a physical in many years. My last doctors appointment was after my hysterectomy in 1994 and that was about 2 years after my hysterectomy in 1996. I was going because I had hemmoraged and I became concerned this had never happened. Well the doctor said that was rare and was a sign of possible cancer. So I listened thought to myself "no its not cancer I feel great". And continued my daily routines which consisted of commuting to N.Y. to take care of my elderly parents. I had been doing this for approximately 15 years. Well back to the physical 2002 all seemed well except my blood work, I had inflammation and my liver enzymes were up, oh liver enzymes thats no big deal I knew that through an insurance policy examination 2 years prior. I feel great. My doctor said well this could be an indication of cancer "that word again", or lupus, I have gained alot of weight, but I still feel great. 2003 A year later chest pains shooting through my arm, I have full blown body pain and somethimes I can't walk. The doctors have become baffled, so they don't want to be bothered, 2004 I switched doctors he prescribed elavil, I took that until one morning 7 days later I could not move. Thats is when I decided to work on my own I spent several hundred dollars consulting with an holistic doctor, who found that I had a strong constitution, and that I should be very sick. But she was not in a position to make a diagnosis. So I started exercising daily, eating better,I was taking hundreds of dollars worth of herbs and then I fell down the stairs all of a sudden in 3/2005 fractured my left foot, I continue on I go to work no cast,in pain but I can get through this.Four days later while cleaning house I crush my right knee. Now I have no legs I am bed bound. I have surgery on the knee. Now another nightmare begins. I have been falling, and I have pulled every muscle in my body. Seven months later the fracture appeared to have healed but both legs are really weak and I can't walk far without my legs feeling like collapsing.I have had to use a wheel chair in some instances and I don't know why, except the pain is that bad. My doctor won't prescribe a walker, he said I am too young. I can not take any pain medication because of the length of time I have been taking them plus the variety I started bleeding and my stomach was raw, so I stopped and just try to deal with the pain so I only have my strong constitution to help me. And he is sending me back to work because he is intimidated by his superiors and Metlife. So what do I do now?

-- P.A.W.J., October 18, 2005

I have had fibromyalgia for over a year. i am currently a soldier and served in OIF 2. i have been trying to get help for what seems like an externity. I can not get a straight answer from any military doctor i have seen so far but I am trying my best to improve my situation.

-- Anonymous, October 19, 2005

I have fibromyalgia also and people are right,people out there do go get pain killers for themselves ,so they can get hi and mess up their life. but what they dont know is,they are messing people up with there doctors,and they are the ones who really need the medication.people dont have morals anymore.people like the dope heads dont need the medication ,but us the sufferersdo need it. doctors need to open there eyes and look out for there patents needs no one but us the sufferers of fibromyalgia knows what the pain is like!like i said ,doctors need to focus on us ,the sufferers of fibromyalgia,and give us the medication we need.thanks for your time. a friend.

-- teresa, November 7, 2005

Hi all, I have had lower back problems from as early as age 5. Chronic Myofacial Pain is what I have been diagnosed with. I also have had herniated discs' osteoarthritist in my SI and recently really bad headaches and bad pain in neck shoulders, upper back (flank) I believe I have MFSandFMS. I have been doing alot of reading on symptoms and I am constantly in pain but I have never been diagnosed properly. Like many people I feel as I am not getting the proper medical attention. I take oxycontin 20mg twice a day and a muscle relaxer but I feel as if these are not the right medications I need. Any advice out there. My mom has Fibro also I really believe I have it Im in so much pain. This Sux really bad. Ive been in pain since Ive been a kid and I am 31 now because I am younger the doctors have overlooked things. Thanks for letting me vent. God Bless us all

-- diane, November 19, 2005

The 2 doctors that I have seen give me Lortab 7.5 at different times,each doctor gave me 3 prescriptions and now they want give me any.This is pain that I have all of the time,not a month supply of pain and I don't need it anymore. I'm not hooked on pain pills,all I'm asking for is 1 a day so that it will help with my pain and it want be so hard to work the 4 hours a day that I've had to drop down to instead of 8. Since there is no way to prove that I have Fibromyalgia doctors don't want to give anything for pain,nobody ever ask how are you doing? It's like people think it's all in your head and nobody cares. Doctor's want you to trust them,but they also need to trust the patient.I have never tried to buy drugs online without a prescription,but the way I feel if I could find it and at a low cost I would buy it,because I can't trust my doctor to believe me and I'm tired of hurting and I just want to enjoy life.

Thank you,Brenda

-- Brenda, December 8, 2005

Here's my situation: Born with a curved spine. Used to work out constantly when I was young. Was on a tree swing when I was 14, hit the tree HARD on my left ear, didn't go to the hospital. When I was 20, I was 8mo. pregnant, fell down the stairs right on my tailbone, and couldn't walk without crutches for 3wks. After that, fell down the stairs a couple more times (always being pregnant). Then in 96 (I think), going down stairs (again), missed a step, and broke my ankle or something (stupidly, didn't go to the hosp.). Later, about 2003, got whiplash.

My present symptoms: Chronic Neck, Shoulder, Rib, Butt, Hip, Leg, Fingers, Arm, Foot Pain. Always tired, burning, numbing, shooting pains, etc. Baths relax me, but don't cure any pain. Tanning feels good, but doesn't cure anything either. Cold weather kills me. Have been prescribed so many things that don't work. My Doc doesn't seem to be really listening to me. Just applied for Disability, because I give up, and I know they are going to deny me once or twice. (I have only been diagnosed with Chronic Low Back Pain/Chronic Lethargy/Possible Fibro from my Doc.)

Don't know what else to do, except go to the Emergency Room and maybe this will actually get my Doc's attention that there is more going on than he realizes.

I'm only getting worse and I'm so sick of it! Noone (including my bf or friends) realizes how sore and desperate I am. What can I do to get some attention to actually get some dang relief?

-- Heather, December 12, 2005

I had read somewhere for Migrane, Ginger extract juice in tea, say one table spoon, in tea, daily, as often, i.e. thrice or four times a day, give great relief to Migrane. My wife used to have migrane, she tried this way, and it gave good relief in just two months. Of course, depends on severity of the case. My wife used to have constant migrane, so abysmal that she was at very great discomfort.

Ginger extract, chewing ginger, in natural form had given my wife good cure. Of course, she used to mix sometimes with sugar.

As regrds fibromyalgia, I am also having pain, but am wondering why no specific curative medicines so far.

I must try some Yogic cures, for some months, in India, under a learned and trustworthy guru.

I pray God that some medicine emerge for curing fibromyalgia.

Thank you,

-- Varma, Mr. Vinod Kumar, December 29, 2005

I am feeling pressure on my teeth for last 12 years. I am feeling heaviness on my teeth amd my mind always remains stressfull. I always remain tensed as I am not able to do and enjoy the work.I da moved from one doctor to another but of no use and help. I tried to get early and do meditation & Yoga but due to my laziness I am not able to do. I have taken homopathic as well as allapathic treat ment.

Please suggest should I discontinue medicine or what else should I do. This diseases erupted becuase of some stress in the year 1994.

-- Anonymous, January 1, 2006

reading these stories let me know i am not alone. i have become a hermit, a prisoner in my own home. freinds, family and most of my doctors are sick of me. the pain is relentless. all you can think about is the pain. doctors become your god, passing judgment, deciding if you suffer or not. i am 33 years old and have 2 children. my youngest is 2. he has to watch me go through this. he sees me in pain all the time, he sees me cry and the saddest part of all of this is that this is his normal way of life. i know he is suffering because of me, while his friends his age go to play groups and trips to the store, he sits in the house with me, and watches more tv than i would like him to. i try to play with him as much as i can, but the pain is always there calling me to go lay down. i feel i am at the end of my rope no hope in sight. i do not want to think like a doctor, i want the doctor to think like me, put themselves in my shoes and help me!!!!

-- raquel, January 10, 2006

I am a 40 year old woman with a Military background. I was diagnosed with FMS 8 years ago after going to 23 different Dr's. My pain started in my right shoulder blade and since that time spread to my right side under my ribs and around to the front of my chest. It then started in my left shoulder, shoulder blades, and left hip. It is in 18 points of my body. They tried to put me on 6 different types of anti depressants over a 6 month period. They then put me on vicodin which made me sick so I stopped taking it. Ultram, Flexiril, etc. you know the routine. a year ago I rolled over in my sleep and felt a very sharp pain on my left side like a pulling pain it took my breath away for a few seconds and then eased up. a couple of months ago the same thing happened and whenever I tell my Dr my left side hurts he says it must have something to do with my Fibromyalgia and not to worry. I do not tolerate any medications very well so when they told me to take 800 mg 2-3 times a day of Ibuprophen I was a little skeptical but 7 months ago I tried it with little relief. Last month I started feeling some nausea periodically and went to see my Dr. He said he would run some more tests. He did a liver function test and it came back slightly elevated. He then ordered an ultrasound of the abdomen to see if there were any problems with my liver, gallbladder, pancreas, or kidneys. That was normal. I am still having a little nausea off and on and waiting to see what the next step is in this current crisis. I am wondering if all that Ibuprophen I took for 6 months could have messed up my liver enzymes. My point here is that it seems that once you have been diagnosed with FMS it seems to be a catch all for everything that bothers one who suffers from this horrific syndrome.

-- Deb, January 10, 2006

I have been in severe pain since I was 11 years old, and am now almost 19. Its easy to say to just take control of your life, make healthier choice, excercize and youll feel better. Its true....but, when the pain is so bad that you cant even walk across a room, it makes it so you cant think or even see straight, its near impossible to do. I am at the point now with the help of low dose antidepressents where the pain is tolerable, under ideal circumstances. But, I am a college student, and whenever I am under the least bit of stress (ie finals) or whenever i catch even the slightest cold, I can not function. The pain is a constant 10, i am so exausted i cant stay awake, but I cant stay asleep because of the pain, I cant think, I cant read, I cant do little things like going to the library or to school. I really do try my best to keep up my lifestyle, excercizing, eating right, etc, but I CANT sometimes, I am physicly incapible of it, and I am sick of people looking at me saying nothing is wrong, or that it is all in my head, because I am sure its not. It gets worse with illness, which leads me to believe its atleast partially biological.

-- Marie, January 11, 2006

I have had leg pain my entire life and the pediatrician told my mother it was growing pains. I am now 33 years old and my legs still hurt,my back hurts,my shoulders hurt my head always hurts basically my entire body hurts. Every muscle in by body aches all the time. The Dr. put me on a med called Cymbalta in July of 2005, I got so excited because the pain was almost gone. After about a month it started not working so well so she put me on Requip for restless leg syndrome and Serequil. Also Welbutrin, as a result I have gained 30lb since July and all of my sex drive. I still have pain. She gave me Robaxin for a muscle relaxer that does not work. All those meds did for me was knock me flat out. I 'm not sure what else to do. I am in physical therepy now and go for a message everyweek. I am no longer taking all of that crap because it doesn't help anyway and who knows what it is doing to my liver and kidneys. If any one has any ideas please let me know. It all just keeps getting worse. Someone did tell me to take Sea Salt (2 containers) and lavendar baths to detoxify my body from all the bad energy but I just started so I don't know how well that works yet but I gotta do something besides take all of those meds. Also I heard that people that have too much yeast in their body have alot of pain so I have been taking alot of L-Acidophollis so we will see, and I've started taking Magnesiam/Calcium supplements. I am trying everything I can to help myself since no one else can.

-- diane, January 16, 2006

I FEEL THERE COULD BE SOME WRONG WITH ME OTHER THEN FIBROMYALGA. I HAVE VERY LITTLE SLEEP, IN PAIN FROM HEAD TO TOE, I HAVE HAD QUITE A FEW OPERATIONS AND ALSO THREE MAJOR BREAKDOWNS, I REALLY NEED HELP. AMANDA LAWRENCE

-- AMANDA ;LAWRENCE, January 17, 2006

I was in two car accidents in the last year. Both not my fault. Once hit from the front and the other hit from the rear. I have 6 mild herniated disks, cervical, lumbar and thoracic and 9 buldging, one fractured T-8 and confirmed nerve damage in cervical and lumbar. I get headaches from therapy, sick from narcotics and hurt all over. I have so many symptoms my doctors just don't believe me. I have injured my hands in the accident and cannot use them very well. I am tired and as time goes on I am getting angrier and angrier. My kids and husband are suffering and no one is able to take the pain away. I cannot drive very far as my legs go numb. I have been to seven doctors for different injuries and not one of them wants to discuss the overall person. If it were not for the kids and my husband life would not be worth living. Sometimes I hope God will give me a terrible disease and end my misery. Just wanted to let others know out there you are not alone if you feel the same way I do. I wish there was a suppot group for people like me. I would never take my life but I can understand why people would seek out that Doctor Kavorkian (Selling is wrong)

-- Shelly, January 17, 2006

I have lived in Texas all my life. I have always been in tip top shape other than a few broken bones, including a Femar Neck Fracture that compleatly pulled the Femar ball compleatly out of my pelvis, this was very painful but like all my other injuries including 2nd and 3rd degree burns over 15% body coverage. All of these injuries were short term none ever lastsd any longer than 12 weeks and drugs such as Vicodan for the bones, sme morphine and percocet for my burns. This was probally over a period of 20 years, I never became dependant on any of these drugs and was always able to return to work. In 1995 I had a back surgery, I had four fusions in my lower back and bulges removed from every level from T12 to L1 and four fused below that, I also have four Titainium screws and two Titainium rods that run from T12 all the way down. Now like most people I did not want to have surgeryand I had put it off as long as I could possibly stand it. In 2001 since that time my pain is constant between 8, 12 pain scale. The only thing out of all treatments that has kept me at an active level is Fentaynl, which they don't give it to me anymore its just as bad as it ever has been(had to change Doctors)and he will not prescribe it for me. If anyone can help please let me know. I am on S.S.D.I. Thank You Russ

-- Anonymous, January 24, 2006

I don't know what is going on! I have for over 8 years had a condition that I knew existed, but physicians knew are just used the easy way out to shut me up. I had many large gall stones and a completely deteriated gallblader when I at the time was going to take matters in my own hand and pay for an expensive body scan for my health. I had been in the emergency twice with pain; thinking I had a heart condition and was starting to have a heart attach. My mother had heart congestive failure. Since, no doctors found anything than saying I probably could have reflux or GERD. I had the scan and it literally saved my life! The recent hurricanes put my surgery on temporary hold. By the time I was able to have the surgery my gallbladder was completely deteriated. What is strange is that the liver is in excellent condition. Which now scares me. Why would this be in such good health and my gallbladder gone. My mother had to have her gallbladder out , myAunt and grandmothers, etc. on my Mothers side. There definately is a weakness my Aunt told me. Now I have been trying to see this endocronologist that my gastroenterologist has recommended, but he is taking a long time for me to see him. In the meantime, I am swollen on bottom of feet a lot; especially in the morning and feel swollen all over even my eyes. Had an eye exam two weeks and nothing came up. Also, have been very very weak, arms, legs, joints, and stomach most of the time, but not electrical pain just pain. My lawnmaintance man said, that he has fibromalgia and that I had the same symptoms as him. Is this something that I should insist to get an appointment. My gastro physician said, it could be lupus but I told him I am not having the symptoms just a few. My symptoms are more like fibromalgia. What do you think?

-- Anonymous, January 26, 2006

I have Fibromyalgia,Chronic Fatigue Syndrome and a list of other medical problems.I dont have this because im depressed.i do however get depressed by this Illness sometimes.

I cant be lumped in with other patients that have the same illness.For one when my CFS is acting up which my Hemotologist call Epstein Barr,i dont sleep where the next person might sleep all the time.

I dont take anything stronger than Loratab because the Doctors in my area dont treat Chronic Pain.

There are days when i can hardly get out of bed.I make myself get up and get busy.Im now in the process of moving to a larger city.I am praying to find a decent doctor that will treat me and not tell me i have to much going on.Thats what my last Dr told me,this was after I had 3 stress fractures in my legs in a 6 months time frame.

He sent me to a local Orthopedic Dr and he said well at least you dont have Cancer.He wouldnt know because he didnt do any blood work.I went to a different Orthpedic doctor for a second opinion and he told to see an Endocraologist.I did a found out i have Osteoporosis and Osteoarthritis.Im now on Forteo shots,i give myself one every morning plus im also on Evista and 1500mgs of calcium a day.

In all i have about 16 prescriptions,14 i get filled every month.Thank God i was able to get my disability and Medicare.I was first diagnoised in 1998 after more than 20 years of the doctors telling me i was to young to have back or leg aches.They called it muscle spasms well yes they do but now i know why.

I dont have a low self esteem i havent had a breast implant.I would however like to have a breast reduction,and i will as soon as i quit smoking.

Now im going through Menopause add that to all teh other junk and i really believe i have a legitamt reason to hurt.

If i think of anything else i will write more.People that dont have Fibro shouldnt be telling the people that do that its all in your head.Its not in my head its in my whole body.

-- Anonymous, February 8, 2006

I feel like the guy that said he didnt need a VA hospital dr telling him he wasnt in pain.If you have never experienced Fibro pain then you dont know what you are talking about.

I have Fibro and a lot more plus 3 degenerting disk,spinal stenous and 2 bulgingdisk, Osteoporosis, Osteoarthritis

I really dont think anyone has the right to tell me if i have pain or not until they live with what i live with.

-- Anonymous, February 8, 2006

There is always hope. Whatever pain you endure, keep talking to you physician, educate him (or her) as you educate yourself. Be patient with your physician as well as yourself. Most of them really are doing the best they can. From my experience I believe it takes a long term relationship with a caring phsician in order to gain relief. Also you MUST BE WILLING TO EDUCATE YOURSELF. I am a working nurse. I have been partially disabled in the past. I have fibromyalgia, osteoarthritis, chronic fatigue syndrome, chronic sinusitis, difficulties with allergies, a history of severe MVA injuries & fractures and severe multiple stressors as well as on-going chronic stressors. I have been on most of the medications listed in the messages shown on this web site, plus others. The key words in the last sentence are, "have been on." In my experience, different combinations of: medications, herbs, exercises, life-style changes, etc. work for different people. Make feeling well & happy your priority. Some of the things that have worked for me are: magnesium, malic acid, guaifensen, Ultram (occasionally), drinking 128 ounces of water a day, B12, Vit. B complex as well as other supplements, herbs and an antidepressant that REALLY helps me sleep ~ currently that is lexapro ~ has changed over the years, at times none at all.

-- Anonymous, February 14, 2006

Was diagnosed with fibromyalgia approx 7 years ago. The only medication I found that REALLY HELPED was mirapex also known as pramexipole. Unfortunately for me and may others that have taken this medication; the side effects were and are worse than the cure. I developed a compulsive addiction to shopping for everything and anything. While others on this medication have gone hundreds and thousand in debt from gambling or developed an addiciton to sex. It is a highly {NOW} publicized effect from the meicatiion. Another problem is that the medication has been show to cause heart valve defects I already have a mitral valve prolapse. The reports state that the drug company manufacturers knew of this problem but did not list it as a problem. Had I or the doctors who prescribed the medication known I would never have taken it and the DRs. would have never prescribed it. Beware of any medication with a Dopamine agonist contained in it. Fibromyalgia might then become the least of your problems. My husband and I had to refinance our home and now instead of it being paid off in 6 more years we are looking at least 15 more years before our nighmare will end. BEWARE of what you put into your body. The damage may be irrepreable.

-- carmen, February 16, 2006

I want this to stop.

I am actually seeing that this could be the end of life as I have known it.

I cannot function the way I used to because of the pain.

Is there anything that has helped anyone...something that really works?

-- Nancy, February 17, 2006

For most of woking career I was a labor organizer. I

worked long hours, traveled from one union

campaign to another plus I was a single- parent of

four children. The stress was unmerciful and I

developed panic attacks and was placed on

Klonopin which helped me immensly. During my

working days I fought bouts with anoxerica

including colitis. Many times I had to go in as as out

patient due to deleption of my potissum caused by

my colitis. About eleven years I ago I ened up

having a mental breakdown I was placed on

antidepressants after leaving the hospital but

continued to work. It almost 6 years later, I woke

up feeeling as if I had the flu, my whole body ached

but had no fever. I was in horrendous pain

throughout my body, a burning sensation as if my

body was on fire. Severe cramping on my legs,

tingling sensations in my arms, stiff kneck, unable

to sleep and feeling exhausted drained of energy.

The pain became increasly worse and I ended up in

the hospital where I was diagnosed with

Fibromaylagia. I did not know how to pronounce

the name but less understand the condition. I see a

specialist and take Percodon for pain including have

monthly trigger shots for my stiffness. I suffer from

Chronic Fatigue, unable to concentrate and angry

with my body. I am also on Asecol for my colitis. I

am not the same person I was once. The quality of

life has decreased for it appears no one

understands my condition or the pain I suffer from

it. Due to my fatigue I have become a recluse with

no social life. I have no enrgy to pretend all is well

with me when it's not. I do not ask for sympathy

but for a cure for this condition

-- PALOMA, February 20, 2006

I have a GP who told me I was only diagnosed with Fibro as they couldn't hink of anything else and then laughed. Would love him to feel like me for a week he wouldn't be laughing then!

-- Jools, February 20, 2006

My sister was diagnosed with Fibro when she was in her early twenties. My mother was diagnosed when she thought she was having a heart attack. My brother was diagnosed when he had severe pain in his feet. I was diagnosed when I believed my osteoarthritis was acting up. Do you see this run in families? My sister was diagnosed by a local doc and then sought out a specialist. My mom was diagnosed at a military emergency room. My brother was diagnosed half way across the country and was unaware of the other two being diagnosed. I simply find it odd that all four of us would be diagnosed with the same problem! What do you think? In closing I feel so sorry for anyone with fibro...it won't kill you...it will just aggravate you to death and make you look like a real titty baby!! And you most certainly are not!!

-- Di inTexas, March 6, 2006

This is for my best friend who is in horrendous pain. Her doctor left town without leaving some scripts for her. There is no doctor there who can subscribe it. PLEEEEAAAAAAASSSSSSSS

She is in severe pain, I am afraid she will kill herself the pain is so severe. It's rhuematoid arthrtitis, fibromyalgia, along with trigeminal neurolgia Horrendous pain from TMJ problems. Can anyone tell me anything!!! The pain is excruciating.

Tell me what to do!

-- Abbe Sobye, March 17, 2006

Before I was finally referred to a pain specialist, my doctor, who was terrified of prescribing narcotics, my life was hell. At the clinic where I went for my treatments, the doctor got more and more angry, the more and more pain I felt. He wanted to reduce my pain med, not up it. He did not believe me.

On one day he said he had gone around to the people who were giving the treatments (who I had formed friendships with) and asked them if I didn't seem like a drug seeker, of course they want to agree with their boss. It was tremendously humiliating. I walked out with my referral to a pain clinic and never went back.

-- Anonymous, March 18, 2006

Does anyone have burning pain behind the breast area and armpits and down the arms on both sides ??I have had burning in other areas but not here before if anyone has had these susytems could you please please email me back

sincerely

allison

-- allison shaneman, March 29, 2006

Hi,

I had chronic pain and fatigue, overwhelming joint pain, asthma, acid reflux and depression.

I went on an Atkins diet, and by pure luck of using that diet discovered that I felt great, 20 years younger. When I went back to eating pasta and bread, all my overwhelming symptoms mentioned above returned, including irritable bowel syndrome and lots of diarrhea.

I tested negative for celiac sprue disease, but my body tells me otherwise.

Starr

-- Starr, April 9, 2006

You know if I didn't have this horrible monster they call "fibromyalgia", I'd probably be a doctor or lawyer or in real estate, instead I live day to day going from one flair, which I have catagorized like they do a hurricane actually I live split second to second. I find myself an interesting sort of being because no one has ever understood me ever since I was an infant it was hives, allergies, foot problems, special shoes, pills, tonics, topicals etc-etc-etc, no one knows what to do or say or prescribe afterall after the thousands of doctors I'm worse than ever or the same, I don't know anymore, but unfornately I still care and want to find the key to this illness, I find a part of fibro to be some sort of infection or something attacking my body always, I always have to fight real hard. Well I can write a goody but out of room! Thanks for reading! Love ya' - FibroMomeroo

-- FibroMomeroo, April 18, 2006

As I read about these people with severe headaches that are daily or more often for weeks at a time, I never see the diagnosis of "cluster headaches" which I have become very aware through the past 10 or more years because my husband has them. His go in cycles of usually 8 weeks, having one to three stabbing headaches in a 24 hour period, with anywhere from 18 months to several years in remission in between. There are treatments for these which give him relief. Our current problem is getting approval for the Imitrex nasal sprays for more than 6 single dose vials in 30 days. Needless to say, we are working on resolving this before he gets desperate.

-- Jean, April 25, 2006

My Oncologist sent me to a Rheumatologist, due to severe all over pain. No apparent problems with the blood tests. After waiting (in pain)for weeks I was seen by a Rheumatologist. He gave me a 25mg sleeping pill, plus a small dose of muscle relaxer (flexeril) suggested I revisited him in 3 months. It was quite obvious that the medicine was not going to work, although I valiantly continued to take it. After 3 weeks of this pill popping and feeling worse, I rang this brilliant man back. He said it was obvious that I had FM and frankly did not like to treat it since it is so unpredictable. He refered me to the Pain clinic where I was assigned to a Neurologist, after a couple of tests that came back normal, except for arthritus in the neck, I was given Neurontin and another kind of muscle relaxers that did not work. I hoped sincerely that the Neurontin would work, after several weeks of no pain relief my new Doctor tooked me off the Neurontin, by this time I was so nervous I couldn't make a whole sentence at one time. A few weeks earlier I had started water therapy, this was comforting whilst there and a few hours afterwards, I continued to walk daily as had been my routine, I joined a support group, and took up yoga and line dancing. I began to accept myself as I am, for 6 months or so my life was miserable, I tried everything to stay positive, but when your body invades you in every crook and cranny, sometimes it is completely rampant, its hard to think clearly. One afternoon I started to read an article about fm that my water therapist suggested, it was somewhat more positive than I had grown to expect. Something caught my idea, a Doctor had been suffering with fm for 10 years, had had all of the same problems that I have along with the sheer horror of trying to travel anywhere. She noted that hard services were here enemy. After this I went about my life in an effort to make my surfaces softer. I purchased a downs feather matress pad, and a neck rest. Since the day I began to use these my pain level has not been any higher than 6 and I am completely off of pain meds of any kind, including narcotics. FM is crafty enough not to let me get to confident, it rears its ugly head still, sometimes for a reason sometimes not, I have learnt great respect for it. I have learnt something that I feel is most value to me that "this too shall pass",it is not there a 100% as it was for many months at the beginning of this adventure, when my pain level is down to a 3-4 I am quite satisfied....it is all relative. Thanks for the opportunity to vent.

Sincerely

Sheila Bell

britlady@bellsouth.net

Bell

-- Sheila, April 30, 2006

I have been sufering with Chronic pain for 4 years. I was diagnosed with everything imaginable. The got to the stage where I did research and discovered through the internet I had Fibro. I confirmed with a rheumatologist and since then started self help. I have change my Diet, cutting out wheat/yeast,all dairy products, sugar as well as caffeinne.

The pain is getting better, I would suffer everyday but now only when my period is due.

I started taking Vit.B.Complex, flazseed Oil, Mag & Calcium and cutt out all pain killers.

We can all beat this!!!

-- Arlene Craggs, May 5, 2006

I have finally been dianosed with fibromyalgia about a year ago. But I had to go through 2 years before my diagnosis with the pain clinic doctor thinking I was crazy. He finally suspected what it was and sent me to a rhematologits for a second opinion. I have a rather severe case with just about all the weird things that go along with it. I did not realize that was also why my hair was falling out amoung other things. One thing you mentioned is stress, low self esteem, and depression that you felt started the cycle. I beg to differ. I had absoultly no stress that was at a high level, no low self esteem, and no dpression. I do have the stress now because of the intense constant pain I have every minute of eveyday. I am also depressed now and these came months after I first started feeling the pain and other symtoms that go along with this syndrome. I do everything they have told me diet, water exercise therapy, psychologist, thearapist, and any other thing they recommend I try and I am still doing all of these and nothing has changed. Like right now just typing this is causing me extreme pain in my hands. I would like to know if there are any new treatments or medications, I am not on any opaites, that I can try along with everyrhing I am doing. A couole of the other things are painic attacks, anxiety, migraines, headaches, facial pain. I no longer can stand the pain of being drivien ( I no longer drive, anywhere besides the doctors. I do not want to even leave home anymore. I actually think that the only one who knows about the pain and other symptoms is someone who has it. Otherwise no one else has a clue of what we actually go through everyday and every hour, every minute. The closet thing I can relate to the pain I have is being in labor when you are giving birth, I have 4 daughters so I know what tha pain is like, but the pain is everywhere not just in your back and abdominal area. This pain that I feel with my fibromyalgia is worse than labor.

-- Sheila, May 12, 2006

In high school I got mono so I was familiar with being tired and experiencing wide spread body aches. Periodically it would resurface and I would have the blood tests that showed the mono was active again.

In 1995 after the birth of my first daughter I T-boned a car that pulled out in front of me. I didn't feel hurt, just my neck and right shoulder. As the weeks went by I noticed more and more intense pain. I went to physical therapy and to the chiropractor. I spent days sleeping sitting up propped with pillows desperatly trying to get out of pain. I gained weight and suffered from depression and migraine headaches. I just learned to live with this.

As I was a Dental hygienist I often discussed health concerns with my patients. As more and more female patients shared their stories with me I started to wonder if I suffered from Fibro. I also had a good friend that told me over and over that she really thought I had fibro.

After the birth of my second daughter I was so fatigued. I literally would return from grocery shopping and sleep in the car if she was sleeping in her car seat. I ached so bad in the back of my neck and I still have an intense burning numbness in my right shoulder.

The MRI's didn't show anything and I could not get a doctor to take me seriously. I suffered from mental fog and often misplaced my possessions. I even threw away dollar bills without realizing it. I put the milk in the cupboard etc. My migraines were constant and I developed diarrhea that lasted for two straight months. I ate baby food and lived on broth. I was diagnosed with colitis. I developed multiple chemical sensitivites and reactions to many drugs etc. When I asked my doctor if I had Fibro he laughed at me. Yes LAUGHED. I was in too much pain and was too tired to say anything back to him. I saw a rheumatologist who performed many tests and diagnosed me with fibro. She couldn't tell me how to get rid of the pain or how to help myself. (Her solution was physical therapy but it didn't fit in with my school schedule.)

Fed up..I went to nursing school. I did a lot of research. I also got a new primary doctor.

It was hard to teach my family that a little friendly poke was agony and that climbing on Mommy had to stop. My kids have learned to gently lay next to me or on my lap and not to bounce on me.

My solution? I eat organic foods. I avoid all preservatives. I cook all my own meals from scratch. I bought a select comfort bed that allows me to adjust the mattress based on my nightly needs. I know that I must sleep and I must know when to stop and rest.

I still have Fibro. I still have pain and I still get tired. I still have migraines and colitis. The difference is now the symptoms are not as noticable. I have a better quality of life and I won't give up my independence and freedom. I think moderation is the key.

I understand what it means to feel pain. I get very frustrated with people who think of me as a "quack" or as a "slacker". I wish a normal healthy person could spend one day inside of my body and deal with the enormous amount of pain I feel and have to exhibit the willpower that I do to stick to eating organic foods and always being the "odd one". It isn't easy and it isn't a choice. It is what I have to do in order to have a "normal" life.

Best of luck to all who suffer from Fibro. There are other's who understand you!! K

-- Anonymous, May 14, 2006

So typical of doctors in this country. If you can't figure out, it must not exist. If it doesn't show up on an x-ray, it must be in the patient's head. While depression may be common among those suffering from chronic pain (for obvious reasons), my own experience tells me it is definately not the cause. I had suffered from depression when I was younger, but there were no physical symptoms. I was healthy. I worked through the depression all those years ago and became happier and more mentally sound than I had ever been. Things went well until I started having aches and pains and was diagnosed with fibromyalgia several years ago. Every doctor since then has confirmed that every trigger point is positive. Sometimes the pain is so bad, I wonder how a person can survive with this much physical suffering. Despite that, I am still happy with my life. I have better self esteem now than I did when I was a teenager and was in better health. I have a great relationship with my husband and child. The only thing missing from my life is good physical health. But overall, I'm happy with being me.

For you to say that because I have fibromyalgia that I must be depressed and have low self-esteem just goes to show that you are not a good doctor. I think you should really reconsider your chosen profession.

-- Anonymous, May 19, 2006

I have been dx with Fibro for about 4 years. I have tried every SSRI, been to many doctors and was able to find some relief using Soma (muscle relaxer) and vicodin 10/325mg. Then finally my doctor put me on Elavil for sleep. He told me it was an old tricyclic anti-depressant that is rx mainly for sleep and not depression anymore but a "side-effect" was it seemed help people with chronic pain. I was actually quite irritated because I did not want to be on anymore anti-depressants. But I tried it reluctanly and was surprised. it actually worked!!! After about a month, month and a half, I had almost no pain, was sleeping great, actually felt calm and less anxious and had energy! I have been off all pain meds and only take soma when absolutely needed. It was amazing. And there was no bigger skeptic than me. And, I was depressed when I started it so even if you don't feel depressed ask your doctor about Elavil. It worked wonders for me. One question I have though, has anyone ever been on Elavil during pregnancy? Or any health professionals out there that can tell me if it is at all safe to take during pregnancy? My husband and I want to try to have a baby and I have gotten off ALL meds, including Elavil and the pain is amost unbearable. I know it's best to not take any meds during pregnancy but is Elavil really all that bad?

-- Patty, June 14, 2006

You guys, Noreen is absolutely correct in what she said. I had undiagnosed celiac disease since childhood & was exposed to fluoride in food (pesticides & processing, using fluoridated water in food processing), drinking water, toothpaste, Teflon (is made from fluoride which DuPont claims is *not* biodegradable; my personal experience is I felt a helluva a lot better after discontinuing Teflon coated pots & pans in about 6 weeks time - my personal experience does not agree with their expressed opinion of Teflon's biodegradability in the human body - avoid Teflon & Teflon products, see what happens to your health for yourself), was diagnosed with ulcerative colitis, ankylosing spondylitis, hypothyroidism & finally stumbled on to the celiac disease myself.

The 'ankylosing' turned out to be advanced skeletal fluorosis in me & osteomalacia. Apparently all my life I was calcium & vitamin D deficient from the celiac disease (I ate a gluten rich diet up to the age of 40 when I finally figured out the celiac disease & quit eating gluten). I was deficient in all kinds of vitamins & minerals all my life from the gut disorder & the vitamins & minerals the body uses to expel excess fluoride were deficient in me. This allowed skeletal fluorosis to build up in me, fooling the doctors in to thinking I had all those other rare disorders.

After cutting out the gluten & getting the celiac disease under control we realized we were battling another culprit that we hadn't spotted before. Unfortunately this took about 5 years to identify as fluoride toxicity & skeletal fluorosis. The main symptom that gave it away was reduction in thyroid gland output, and screwed up thyroid function in the body. Doctor put me on levoxyl, first 25mcg, thyroid levels stayed low, then upped it to 50mcg. At that point it became apparent I was poisoned by something & the culprit turned out to be fluoride.

The solution was simple, well, a lot to beware of: avoid pesticides & insecticides, use non-fluoride toothpaste, drink unfluoridated water, avoid processed foods (canned foods in particular will typically contain fluoridated water from their local water source), use organic produce (no pesticides & insecticides on it), don't use Teflon products (pots & pans, etc), stick to stainless steel. Also make sure you are getting enough iodine in your diet & enough salt each day.

What happened in me was within a couple of months I could not take the 50mcg dose of thyroid medicine at all because my thyroid gland became over stimulated. Sonogram tests showed there was nothing wrong with my thyroid gland, blood testing showed no autoimmune damage to my thyroid gland, the gland should have been working fine in me. Diet was good in iodine, so why low thyroid output. Answer was fluoride. Fluoride is toxic to thyroid hormone production & interferes with thyroid hormone absorption in the cells. It is nasty stuff, toxic, destroys digestive enzymes, is a neurotoxin (destroys acetylcholine & acetylcholinesterase neurotransmitters causing your nervous system to start 'shorting out' rather then working normally), interferes with minerals in the body, binds to calcium & builds up in the bones & skeleton.

How this stuff is being used so liberally in this country now is beyond me. If you look at sodium chloride (table salt) a teaspoon of it will raise your blood pressure, make you drink lots of water & make you feel salty. A teaspoon of sodium fluoride is the main ingredient in rat poison & is likely to put you in the hospital E.R if not the morgue. Yet sodium fluoride is the form of sodium used in fluoridated toothpaste. Go figure.

Fluoride is evil. There is no system in our bodies, no organ, no enzymes, nowhere in the body is fluoride 'sought out' for use in any of our systems. When we encounter it our bodies just go about excreting it by the kidneys. Whatever excess cannot be excreted gets put in to the fat cells for later conversion to water for kidney removal. If the ongoing fluoride exposure is still high, fluoride ends up working its way in to our bones & skeleton. How it is being looked at now as 'just another salt' in the U.S. astounds me.

My current doctor, in her early 30s & recently out of medical school told me after I figured out I was being poisoned by fluoride all this time & I told her, 'What's wrong with fluoride? It’s just like chloride, isn't it?' That's actually the medical school dogma they'd fed her about it. The misinformation about this poison is coming to the new doctors from the medical schools here in this country. Doctors here are not being trained to recognize fluoride is a danger at all. Unfortunately this doctor of mine had just had a new baby boy a few months earlier & a lot of the research I had dug up about the dangers of fluoride to humans included how dangerous it is to babies. I made sure to give her that information & the next time I saw her at her office, she looked quite worried at what I had given her before. I could tell she was beginning to 'get it' - that people should not be exposed to fluoride in even a conservative manner anywhere in this country. Yet her newborn is now awash in it here. I told her good luck with that.

Folks, check these links out, this stuff is a nightmare & we are being exposed to it here in the U.S. now like it is water :-(

http://tinyurl.com/r9fwb

http://tinyurl.com/ghsyw

http://tinyurl.com/p3w2s

http://tinyurl.com/qxcg4

http://tinyurl.com/ln9gs

http://tinyurl.com/p3bzt

http://tinyurl.com/nskov

http://tinyurl.com/g9qmo

http://tinyurl.com/q2e9r

Noreen you are absolutely correct, you hit it on the head. Avoid fluoride like the plague, start demanding change from our elected officials in this country to remove the liberal use of this toxin by changing laws, getting some oversight of the FDA & the government that is allowing this poison to be dumped on us causing all the long-term health problems it is causing for us. Educated yourselves, tell your doctors who are trained in the medical school dogma here that 'fluoride, chloride, what's the difference?' HUGE difference, HUGE. One will form a salt that we can manage, the other forms a salt that just kills us:

http://tinyurl.com/jqhap

http://tinyurl.com/obgzy

And industries here make a lot of excess fluoride in their plants that would cost them a lot of money to dispose of on their own, so why not make money off this waste product & fool the government & medical industry here in to thinking this poison is actually *good* & *necessary* for us... it's not, it's poison, by any other name, & it doesn't smell as sweet just the same. Get rid of it! Avoid it at all costs! Get your health back starting now, try my tips & suggestions, watch what happens to your health. Good luck to all of you.

Joey

-- JoeyG, June 16, 2006

Dear Doctor

I cannot believe you are a competent doctor because of your misleading and demeaning theory. My Fibromyalgia started after back surgery in 1982. I had the same doctor for 26 years. I trusted him as a doctor and he trusted me as a patient. Over the years he changed the treatment for the different areas of pain. I'm glad I didn't have you as my Doctor, because I wouldn't have survived.

As far as self esteem goes, I was a Vice President of a bank, had a 36 year-old marriage before my dear husband died, had 2 children and at the age of 64 started a new career as a writer. I also have countless friendships, many of which are more than 50 years old.

This may sound mean, but I hope someday you experience this horrible pain so you can better help your patients.

At 69 years of age the pain is worse than you can imagine and only my Catholic Faith keeps me from commiting suicide.

I have had pills, chiropractor treatments, acupuncture, exercise,

-- Anonymous, June 21, 2006

hi everybody. reading all your life storys is like reliving mine. im a 35 year old woman.twice married. when i was 19 years old i got acute lukeamia when iwas 7 months pregnent. with my son. i had a bone marrow transplant. i took 6 or seven years to recover. i had a stressful marrige. and i seemed to get better when i got rid 0f him. he didnt understand i couldnt have normal life. but when he went i felt great. for the past year ive had loads of stress. and overwork because of money children friends mother. and i have got loads of muscle pain swollan ribs adhd arthritus im always tired.

ive suffered with headaches since the transplant. and synus trouble, hair loss in times of stress. i feel like im falling apart. im the one who keeps it together for my friends and now theres seem to be falling apart. people hold it against you. they say they dont but we know. i havnt been diognosed yet but i think ive got it. can any body please tell me things that have worked for them and tell me its not all bad. < life> thankyou your truly strong and deserve everything good in life. sorry about the spelling really bad day.

-- katie , July 3, 2006

I was diagnosed with fibromyalgia. At the same time I read a book that outlined all the symptoms. I had nearly every single one of them.It said there was no cure.

My Doctor said "maybe virus or bacteria"

I decided I had to start from the beginning and I studied my mineral levels from symptoms, a somewhat flawed idea perhaps. However, I bought the minerals. Whithin 2 days I was becoming free of pain, good sleep began to come and everthing else got better and better. The things that made me feel better were Magnesium, Vit B3, B6, B12, red meat, VitE, Om3 oils, Vit C. selenium

I am now very well. I have since found a website by a Dr - drmyhill.co.uk which says more or less the same things and talks of mitochondrial breakdown. I was on the right track.

-- Chris N, July 28, 2006

Hi everyone,

I do not know what is wrong with me but i feel like i am going crazy. I already have neck and lower back disk problems but more is going on now. About a year ago I started hurting in my neck. Then unbearable pain started in my right shoulder. Mostly between my spine and my right shoulder blade.Sometimes it hurts all the way across. for the last 6 months my shoulder and my right arm feels like it is being ripped off. My elbow and wrist hurt to touch but not like my shoulder .Just a few days ago I got a new pain in the middle of my spine. I am hoping it is from the way I am sitting/standing/laying because of my arm. The pain is so bad i can not put it into words.I try to do simply household chores and i can not finish one before i start on something different.So nothing getting completely done here. My doctors tell me that i have so much going on that they are going to treat me for either my lower back or my neck.my legs hurt , my feet hurt ,my skin hurts sometimes, well everything hurts when i get up in from a nap then my shoulder ,neck and arm takes over for now.Before it was my right knee /left leg. So they think I am crazy. One doctor told me that he did not think I was as bad off has my last doctor did. Meanwhile i am hurting worse as the days go by. With the pain , stiffness , and these headaches that are with me 24/7 I feel like what is the use of me being in this world. My doctors treat me like i just want the pain killers.I have told them it might be so if they would give me something strong enough to take way the pain. So far they have not. They did give me methadose and it worked better than most but that was for a short time when i was going to pain management center. I really do not want to live on pain pills but if i have to i guess i will.As far as my weight I have gain alot of weight in the past two years. I eat two meals a day but it is still not going away. I do swell in my hands and face but not real bad. Now my feet are different they swell if i stand on them for 5 minutes , they swell while i am sleeping when i sleep,they are swelling now because i my setting at my computer.About two years ago i was swelling from my hips down . I have two buy pants two and three sixes bigger. I had to buy house shoes to wear in the winter time. mens size 12 and 13. The doctors did all kinds of test but never found out my i was swelling. So if any of you think that this sounds like some of the things that was going on with you PLEASE email me. I need to know what type of doctor to go to that will understand what i am dealing with here. One that will not act like i an just trying to get more pain killers per day. That is what kills me inside.

-- Barbara, August 1, 2006

It is a bunch of bunk that this is a self-esteem issue. Two years after back surgery, IN 1982 they came up with Fibrositis, now called fibromyalgia. I was married for 36 years, had children, was a Vice President of a bank, but was always in constant pain and over 24 years tried everything anyone told me to do to get rid of the pain. My husband died when I was 63 and I went on to a new career in writng and have been published and won awards and moved to a senior community where I have made many friends. I go to church every week and try to help others. HOWEVER DURING ALL THIS TIME THE PAIN GOT WORSE EVERY YEAR AND I AM SICK AND TIRED OF PEOPLE SAYING IT IS IN OUR HEADS. WHY HAS THE NUMBER OF PATIENT DIAGNOSED GONE FROM 33,000 TO BETWEEN TEN AND FIFTEEN MILLION AND NOW IS IN EUROPE AND OTHER COUNTRIES?

-- Anonymous, August 14, 2006

I have fibro, and it's impossible to keep a job. I'm to a point where I don't even try, because I know I'll disappoint everyone, and that bothers me to distraction! I have no insurance, so I have to go through the county system, and they won't approve me for Cymbalta. So I'm on Celexa. Took Ibuprofen 800 for years; recently my kidneys became swollen and the back pain was unbearable. I had to figure out what was going on by myself, tho' a Chiropractor confirmed. Received a notice for jury duty last year, and couldn't walk without help - the pain was unbearable - back and forth to the bathroom only, and whatever pain pills I could get. Requested a letter to send from my Dr, who said no, that she believed I was capable of making it. I'd have had to walk, take the bus, walk more, walk up stairs, etc. I had no energy to bathe and dress, let alone go to court (which, by the way, I've done before and want to do again!)

My knees and hips have been very painful, sleeping is a matter of switching positions frequently. On good days, I celebrate! Like a crazed person, I'm out, doing as many of the things I can't do when the pain is severe. For the past two weeks, I have trouble standing up straight. I force myself to, however upon walking, find myself bending over and to the side to try to avoid the pain. I'm on my city's Multicultural Commission, and spent time downloading information about fibromyalgai, gave it to the Chair, who was also a friend. Told her I wanted her to understand that I'd make it to as many events as possible, but didn't know how I'd feel day to day, and things could change in minutes. She never read it, and would get angry with me instead if I didn't make it to something. If I mentioned that I had a headache, or leg or back pain, or dizziness (yet another issue), she'd say, "What's wrong?" That constant need to explain, and yet rarely being heard is most definately a frustation and all alone makes me feel exhausted. I'm usually happy, and do what I can but have to stay away from people that want to shut me out due to their lack of knowledge or understanding about this "thing". Lots more to say, but this is long enough for now. Oh, and our County Hospital doesn't "recognize" fibromyalgia as a disease.

-- Mindy, August 18, 2006

I have had fibro for about 1 year.

I woke up one am not being able to move and was in bed for about a month. Worst feeling Iv ever had

Did find a right dr we tried several treatments. None worked.

The only thing that did work is hydrocodone a few times a day just to function without pain...NOT FOR A HIGH!!

I went to another dr who does not believe in pain treatment for fibro.

Well hmmm did he ever have it?? NO

So now it is coming back again, sleepless nights, back , knees hips hurting all day.

Thank god for the scripts from various sugeries I have had. They truely are a god sent. At least I can enjoy my family and do normal things, but I am running out fast, so then Im back to square one of living in pain 24/7

I get to the point in the afternoon I want to cry because of the pain not depression.

I really wish I could find a dr that understands the pain, and get it treated correctly. Im only 39 with 3 kids and want my active life back.

All my sugeries have really contributed to this awful painful disease ((kidney out, spinal fusion, disks out, hernia sugery, ulcers, arthritis in hips and back, kidney stones)))...YUK!!!!

All the physical therapy, aremotherapy and massages do not work any longer!!

Anyone that knows someone good in Albany or Troy Ny please let me know. You can write me at my email.

Thanks for listening.

-- unknown in pain, August 19, 2006

I had spinal fusion just over a year ago. I only thought I was in pain before, now I know I am. I have had steroid injections before and after surgery. I even had the nerves severed and I am still in severe pain. I use the pain patch now and the dose has to keep being raised. I am practically disabled after the surgery and I have no idea what to do next. At one time I was told to have surgery to remove the titanium plate! I am so scared of having another surgery but I can't live like I am now. I urge anyone to really think before they have surgery, especially a spinal fusion. I feel like my life is over and most of the time hope I dont wake up because the pain is so great. Sometimes it is controlled, but it seems more often than not I have to suffer. My Primary care physician feels like I should take very little pain medication. Pain management worked for a little while until morphine no longer worked. So many doctors are so worried about giving pain medications to me, yet I know many people that are drug addicts that have no problem getting medications. It isnt that I even want oral medications or to increase my patch, but I just want to know why I am having pain and something to relieve it. My surgeon, the pain management doctor, and my pcp dont know why I still have pain. Surely there is a way they can tell what is causing it without taking the titanium plate out just to see if that is the reason. I know it is not in my head! My family and friends watch me suffer daily. I can hide it when I work most of the time. I am desperately seeking to lower my pain from a 7-9 on the pain scale to even a 5! Surely there is some help somewhere that doesnt entail being cut on again....

-- kimberly, September 17, 2006

I started out with my family doc,who sent me to a pain management specialist because he could not determine why my heels,feet and butt hurt.

This doctor think Im a flake and admitted he does not know why I have all this constant pain.He has given me every kind of pills, pain killers etc... that he has and wants to keep trying different pills.I don't want to take pills, I hate to take medication any ideas?

-- rachel, October 4, 2006

I have a question for a doctor.I was put on a daily regimin of methadone because I was pregnant and addicted to heroin.I am on a daily dose of 110 mg's.I have had my baby,she is very healthy.I have decided to stay on the methadone because it keeps me from searching out street drugs.But I am concerned because my counselors say that if I had an injury where I needed pain medication,nothing narcotic would work because the methadone blocks it.Is that true?What if I broke my leg and had to have surgery,What could I take for pain controll?Please answer me if you are educated in the matter or direct me to a websight that can answer me.

Thankyou,Kelin

kelin.winters@comcast.net

-- Kelly , October 17, 2006

I understand about the pain and feeling like the doctors think you are a nut. I have been dealing with this for the last year. Neurontin is helping me & haven't tried the Ultram, but have it in case. The best advice is to believe in your experience because when you know you are being truthful, you can handle the doubters. Also, read sites like these & seek a common ground with others who share the same experience. Doctors are just people, too. Some really never understand what they treat, some really don't care. Find the ones that do. Don't give up, because this disease does improve just like it can be worse on other days.

-- Tia, October 19, 2006

HI

I SUFFER FROM SEVERE PAIN THAT IS NOT BEING TREATED.

I BELIEVE THAT NOT TREATING PEOPLE FOR PAIN IS AGAINST THE LAW.

DOCTORS SHOULD NOT TAKE MONEY FROM US OR OUR INSURANCE COMPANY FOR A JOB THEY DO NOT DO.

I'M LOOKING FOR INFORMATION ON HOW TO GET HELP FIGHTING FOR MY RIGHTS

DOES ANYONE KKOW OF A GOOD WEBSITE OR PHONE NUMBER FOR INFORMATION ON THIS.

I FEEL WE HAVE LEGAL RIGHTS TO BE TREATED FOR PAIN.

IT IS THE LORD THAT KEEPS ME GOING

HANG IN THERE

ELLE

-- Elle, November 4, 2006

i have had fibro for over 5 yrs and it has gotten worse in some areas and a little better in some. its funny that it acutally travels. it mainly in my mid back. i get trigger point injections and throatic epiduals that help out for short amount of time. but better than nothing. i also take percocet,ambine,xanaz,duragesic patches, soma ,dalmane,estratest for hormone replacement. i may have 2 or 3 good days a month then the rest horrid.i dont know why this disease it not reasearched enough. ibs, acid reflux,hernited disc. sadness, people judgemental to everything we do and swallow even if it helps us live a better life. i watch what i eat and drink. i am not perfect . but very careful. and it still is here. my mother,brother aunts and uncles have it. it is heriditary.where is the magic pill that will make it all go away. or the research i never hear about. does anyone care that it feels like we are dying slowly and painfully.

-- dawn dean, November 8, 2006

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