Or is it just another name for a bunch of symptoms that no one can figure out if they are real or not.
I dont know if it is real or not, but the one patient who claimed to have it did convince me she was in a great amount of pain
Well, this is a master linking site for support/education groups. This Site.
Obviously THESE people DO believe in what they suffer. I read an extensive article in “The New Yorker” a few months ago about the disease, and the whole debate. I tried to find the NY’er archives on the WWW, and struck out .
I know someone with Epstein-Barr ( also called Chronic Fatigue Syndrome)- one element of Fibromyalgia. It has wrecked her life. She no longer has the strength to get up and write, as she did. It’s very slowly wrecking her. I don’t see one shred of hypocondria here- SOMETHING is sucking her life force away. However, it’s like boxing with smoke.
Fibromyalgia is real. The American College of Rhematology gave diagnosis guidelines in 1990:
These summarized from Harrison’s Textbook of Internal Medicine, 2001. You need to satisfy both A and B to meet the diagnosis.
Anyway, the requirements are quite broad, and the pathogenesis is unknown. Unfortunately, it has been regarded as a “wastebasket diagnosis” by many physicians, in that chronic pain with no other diagnosis gets thrown into one of several diagnoses, with fibromyalgia being one (one other that comes to mind is pain syndrome).
My wife has fibromyalgia, and it is quite real. Aside from the overall pain and the pain at the diagnostic tender point sites, there are also often palpable hard lumps in the muscles. This is not arthritis, since it is the muscles that are affected, not the joints.
Wife’s asleep now, but I’ll get a list of web sites tomorrow.
As a retired health care professional, I’d have to say I don’t really believe it exists as a specific sydrome.
I’ve seen a lot of people with musculoskeletal pain, from any variety of reasons. As per the above post, fibromyalgia is diagnosed when both A and B are positive, but pick 100 people with muscle pain or people who’ve been in a football game and chances are a lot of them will satisfy A and B. Those conditions are too general. Try it yourself, press on some of those spots and chances are you’ll be tender there too.
I have treated some people who have been diagnosed with fibromyalgia, and the diagnosis might also be “people with a lot of unexplained pain”, and I think that probably sums it up. Unfortunately, the diagnosis has also been tainted by people who have been malingerers, this is a case where the condition should not been broadly advertised or sensationalized in magazines (which I have seen).
As far as the people whom I saw had fibromyalgia, my opinion was that they were severely overworked or stressed. I don’t ever recall a case where the person was living in the lap of luxury, didn’t have to work and had it.
Is it real?
Tho I am not a doctor, I deal with fibromyalgia (and fibrositis, myofascitis, chronic pain, somoform disorder, chronic fatigue, Epstein-Barre, etc.) daily in my law practice.
There certainly appear to be people who express symptom complexes for which a specific underlying organic cause cannot be identified. And they seem to be credible in their complaints. That is, they are not consciously malingering or exaggerating. There pain is real to them.
Social Security awards disability benefits based on fibromyalgia. I think it is a much more open question as to whether it is a physical or psychological based condition. The New Yorker had an interesting article on this aspect a few months back.
I’d personally like to say it is bullshit. But how can I argue with general acceptance in the medical and legal communities? Moreover, Mrs D experiences chronic pain. She leads an active life despite these complaints. At times, doctors have offered the diagnosis of fibromyalgia. Whether it is described as fibromyalgia, chronic pain, or something else, does not change the fact that she really and truly experiences pain. What she can control, is the extent to which it dominates her life.
A diagnosis of fibromyalgia is commonly accompanied with a diagnosis of depression. Which begs the question, is someone in pain because they are depressed, or are they depressed because they are in pain?
I consider it possible that the people who are diagnosed with fibromyalgia today, would have been diagnosed with chronic fatigue syndrome 10 years ago, environmental sensitivity syndrome ten years earlier, and hysteria around the turn of the century? I have often wondered whether one could trace the various ways this type of nebulous complaint/disorder has been treated/interpreted over the years.
Another legitimate question is the degree of incapacitation it causes. Individuals have different perceptions of pain. But I tend to believe fibromyalgia need not necessarily be disabling. The extent it limits someone may depend on interaction with that individual’s personality.
Also, there are great differences in opinion as to appropriate treatment, ranging from bedrest to strenuous activity. Low levels of antidepressants often seem effective, further blurring the fibro/depression distinction.
What I believe is unfortunate is the “waste basket” manner in which the diagnosis is frequently offered. IME it is very rare for an individual claiming fibromyalgia to present a rheumatologist’s diagnosis applying the criteria set forth above. Instead, it is used interchangeably with many of the conditions I mentioned in the parenthetical in my first paragraph. Or it is offered as an overlay for individuals who have objective evidence of underlying medical conditions which do not appear sufficient to explain the severity of their subjective complaints. Which I feel does a disservice to those folk who actually do meet the diagnostc criteria for fibromyalgia, as well as the health care providers dedicated to responsibly treating them.
I have often wondered. How do you make a differential diagnosis between somatoform disorder (a mental disorder), and fibromyalgia (a physical disorder)?
My personal, non-medical opinion is that there is a significant emotional component to fibromyalgia, and the individual’s perception of and reaction to such symptoms. But dammit, Jim! I’m a lawyer, not a doctor!
Well, Dr. Barrett of QuackWatch fame seems to think it is real. His daughter (or DIL) seems to have it:
If Dr. Barrett is convinced, I guess I am, too.
What- I’m such a terrible sparring partner?
I have fibromyalgia. It is very real.
Major Feelgud, you said it seemed to be mostly people who were stressed and overworked, not people who were “living in the lap of luxury.” This is not true in my case. I am too ill to work, so I live with my brother. I am very comfortable. I am not stressed or overworked. But I am still sick.
However, I didn’t come here to complain. I wanted to say that I have found a treatment that works for me. My fibromyalgia/Chronic Fatigue Sydrome/Epstein-Barr syndrome was very severe. It was affecting my heart and blood pressure. I was fainting quite a bit. I once started to faint while driving on the interstate. But the treatment I am using is working, and I can see the light at the end of the tunnel.
Several of you know someone with this illness. The treatment I am using is Guaifenesin, an inexpensive prescription medicine. There are certain restrictions about taking it - for example, it can’t be taken with herbal remedies. http://www.guaidoc.com explains the treatment.
Anyone here can e-mail me privately and I’ll be glad to discuss this with you. I am getting my life back, and I hope others will have the same chance.
If anyone has any questions about what this illness is like, you can ask me, and I’ll answer as best I can.
not being a sufferer of chronic pain I really don’t know what I’m talking about… that being said
I’ve now re-written this post a dozen times. I’m trying not to be insensitive to chronic pain suffers and failing miserably…
so… here goes, please no one take offense.
when I injure myself, pain signals are sent to my brain. I then swear a little bit. now the pain signals don’t stop, I can still tell that I’m injured, but I can choose not to focus on the pain signal and get back to feeling pretty normal. I’m not talking about little pains either. If I can shrug it off, why can’t others? do I have some freaky level of control that’s not normal?
also… if the brain gets a signal for a long period of time, it begins to ignore it, why doesn’t this happen to chronic pain sufferers?
bobo - It’s ok. Most people don’t understand what chronic pain is like.
First, the pain I felt was extreme. It felt like the muscles were being torn from the bone.
Second, it doesn’t go away.
Third, it can be pain in many areas. It’s not like injuring an arm. My right arm hurt and would go numb. My back would spasm. I had shooting pains down one leg. Both feet hurt. And on and on.
Lastly, the pain would get worse during the day. Imagine, in your example, that you hurt arm, then had to keep using it. It would continue to hurt, and the pain would get worse. This is what I experienced.
Also, fibromyalgia has many other symptoms besides pain. Imagine you injured yourself after staying awake two days straight when you had pneumonia. That’s how I felt.
But again, I’m doing better. Two years ago, an hour at a computer sent me to bed in horrible pain. Last year, I could only use a computer every other day. Now I’m out here every day! I joke and say I’m “building up endurance” so I can get a job. But to some degree this is delightfully true.
Only in the sense that Social Security will award disability on the basis that some one is “disabled” (as defined in the Act, Regulations, and Rulings). Fibromyalgia is not one of the “Listed Impairments” found at Appendix 2 to Subpart P of Regulation no. 4 (20 CFR 404). I guarantee you that it won’t be awarded on the initial or redetermination levels. An ALJ may award it if he or she believes that the claimant really has the severe pain alleged.
From my reading and the postings here I’m convinced it’s real. The problem is that it is over-diagnosed. I have seen tons of medical records (I’m not a doctor, either) wherein physicians have diagnosed fibromyalgia (formerly called fibrositis) without the 11 trigger points (out of the 18). Major Feelgud believes that the criteria is too lenient as it is. A lady or a guy (usually it’s a lady) complains of pain “all over.” Diagnostic studies being negative, the doctor diagnoses fibromyalgia.
Lesa contends that she has it. (You are a “she,” aren’t you?) And you found a medicine that helps. I’m sure you have the genuine pain described, but is it really fibromyalgia? Could it be a somatoform disorder? Or something else?
Moreover, fibromyalgia and CFS are not the same and they are not caused by the Epstein-Barr virus, the latest literature states. Etiology unknown. Many with CFS also have fibromyalgia, but not necessarily.
My mom has fibromyalgia and I can tell you that it’s very real. One of her big symptoms is extreme fatigue – she sometimes needs 12 hours of sleep a night and often gets tired during the day if she tries to do too much. She also has a lot of pain sometimes which makes it difficult to walk. Her joints are a problem sometimes, too. If she tries to kneel or bend down for something sometimes she can’t get back up without help.
Luckily she’s been feeling better over the past few months. IIRC, fibromyalgia has periods of flare-up and remission, and she appears to be in a remission stage right now.
For more information on fibromyalgia check out Questions and Answers about Fibromyalgia.
lesa, I’m glad to hear you’re doing a little better. I know my mom has wanted to work for a long time, and she’s been trying to get herself feeling better so she can get a job. Good luck to you!
First of all, you can’t prove a negative. Second, it is very, very hard to prove or disprove a person’s perceived pain.
I see two problems with fibromyalgia, thoracic outlet syndrome, reflex sympathetic dystrophy, chronic fatigue, multiple chemical sensitivity, etc.:
they are over diagnosed (assuming they do exist.) THere are some people who are victims waiting for an accident. They latch onto these diagnosis and create their own psychosomatic symptoms.
There are often many rewards to being stricken by an incurable mystery disease. Here I am thinking of workers’ comp, SSDI, 3rd party liability claims, sympathy, not having to work, a meaning to one’s life, etc.
Let’s not forget how far some people will go to get their emotional needs met…Munchausen’s by Proxy, for example.
I, of course am very biased because a) I have a family member who is a major victim and work comp fraud and b) because I make my living controlling claims against my company (among other things.)
IS it possible that it is real? yes. Is it always or even usually real? probably not.
My mom has been diagnosed with fibromyalgia. She is certainly not a malingerer, as she continued to try to work for a long time after it was clear to everyone else that she could no longer work enough to support herself. She has a number of other health issues, though, including depression, that cloud the issue. I think that we may be using the term “fibromyalgia” to cover a number of different health issues that have similar symptoms but differing causes.
One theory I read proposed that people who have these muscular/skeletal pains may do so because their muscles never relax fully, even in sleep. This may be caused by psychological truama that leaves the patient in a state of “ever watchfulness,” unable to go into truly deep sleep. My mother, who was sexually abused as a child and physically and verbally abused during her marriage, certainly fits this description. She regularly experiences such things as falling asleep while doing a crossword and waking up 8 hours later, still sitting up, pen in hand. She once fell asleep holding a mug of tea and woke up in the morning without having spilled a drop.
Whatever the cause, in addition to the constant and sometimes excrutiating pain, she has palpable lumps around her joints. She is currently attempting a very stringent diet that some people believe may be helpful, on the assumption that some of the symptoms may be caused by food allergies.
Good luck to you, lesa, I hope you continue to feel better.
That site has some good info, including the specific trigger sites essential for a proper diagnosis. It states that it is certainly real too. Click on the links at this home page.
barbitu8 - My Ear, Nose and Throat specialist said I have this illness. I was refered to an internist. He said I have it. He sent me to a Rhuemetologist. He said I have it. The internist then sent me to a Cardiologist. He says I have it.
Also, I continued to work while I was ill for 10 years. I finally got fired. I was so ill no one would hire me.
As for the rewards of being ill, I was turned down for disability benefits. I missed two Star Trek movies. My fellow fans will realize how serious this is. I don’t want to be ill. I want to be well, and live my life again.
I used to drive to Dallas (6 hours) for shopping trips. I want to do that again. Years ago, I would take my brother to rock concerts. We once flew to Los Angeles to see Depeche Mode - my treat. I want to live again.
robinh - I hope you will check out the website I mentioned. It talks specifically about those lumps. These lumps are used to measure how a patient is progressing. As the lumps break up and clear out, the patient gets healthier. If your mother is able to try this, it could be a big help for her. Again, you can e-mail me if you like. I would e-mail you, but I can’t figure out how to find posters’ addresses.
Interesting answers but I guess what I’m trying to get at is it it measureable.
For instance I had anxiety attacts. Bad panic attacks, and while I clearly suffered and had the pain and suffering these were NOT physical in orgin.
Now I’m not saying the pain isn’t real, my anxiety was real but my mind, not my body, was bringing it on.
Thanks, lesa. Mom is getting “mapped” by a massage therapist. Basically, the therapist records a detailed description of where the lumps are and their size. Mom can then go back every so often and have it done again and compare the results to see if she is showing any improvement. This way she will have a more objective determination of the progress and can better determine whether or not this diet is actually helping her.