Is fibromyalgia real?

Factual Questions
21

Lesa, you said that you were turned down for disability benefits. What kind of disability benefits? Social Security? If so, how long ago was it and when did you last work? How far did you appeal the denial?

I’m an expert in Social Security disability benefits and perhaps I can give you some info to enable you to continue your pursuit anyway. The problem with fibromyalgia is that there just isn’t anything in the way of studies to document it. The clinical findings, such as trigger points, are helpful. Studies establishing an impairment are not necessary, except there is a provision in the Regulations that require complaints of pain be supported by diagnostic studies and clinical findings. Since this is a disease w/o positive studies, that provison can be read as to not include the studies.

I’ve found that to get benefits for this disorder you have to be lucky and get an ALJ who believes your pain. If the ALJ doesn’t, it’s not likely to be reversed anywhere along the appeal process, absent other factors.

22

Did people have fibromyalgia before it was called fibromyalgia?

Those of you who have it, or know people who have it, do you believe it is physical or mental/emotional in origin?

23

God, I really needed a great laugh this morning. I would thanked you for it one-to-one, but you don’t take e-mails.

:smiley: You’re a brilliant yet elusive sparring partner. <<Lacing up Everlasts’s with teeth, eyes narrowed to cautious slits, etc>>.

Cartooniverse

24

My current girlfriend was diagnosed with fibromyalgia a couple years ago (about a year before I met her). When I first met her, she had all the classic symptoms of a fairly advanced case: Exhaustion all the time, deep pains (like they were down inside the bone) that tended to appear at different places around her body over time, and nodules or lumps in her hip muscles that were stiff and painful, particularly in the morning on waking up, and in the evening at the end of a long day. Her exhaustion was so bad that she would sometimes pass out at street lights when driving. If the car was moving, then she would stay awake because of the stimulation of reacting to the changing environment. But when waiting at a long stoplight with no stimulation, she sometimes passed out until the cars behind her started honking their horns. Also, she could walk around as much as she wanted with no particular problem, but she couldn’t stand still (for example, in line at a ticket counter) for more than about 60-90 seconds. Any longer than that, and she would get dizzy and pass out. If it was absolutely necessary to stand in line, then she needed to be sitting or leaning against something.

According to the literature on fibromyalgia, the genesis of the disease is usually tied to long-term stress and disrupted sleep patterns, and that was pretty much what happened to her. Her previous marriage had been highly stressful and antagonistic for a lot of years before she got up the nerve to divorce her husband. The divorce was stressful of course, and her job environment was very stressful as well. And for quite some time (a couple years, I gather), she had gotten no more than 3-5 hours of sleep per night. She had a hell of a sleep deficit. Also, her stomach was going to hell due to all the stress.

When she and I moved in together, I talked her into quitting her job and just doing a little light work at home. I also introduced her to Zantac for her stomach and a white noise machine to help her sleep at night (she was such a light sleeper that any little noise would wake her up). Ultimately, once the stress was taken out of her life, she suddenly began sleeping 10-12 hours per day.

That was a year ago. Her fibromyalgia is much improved today, but the progress is slow. Based on her progress so far, she’ll probably need another year or two before she really feels normal again. Currently, she sleeps about 9-11 hours a night (which represents an hour less than a year ago). She’s completely alert and engaged and happy when awake, but her energy levels bounce around a bit. She’ll get a burst of energy that lasts a couple days, and she’ll do a lot of work around the house during that time, but it will sap her and she’ll feel exhausted and need a couple days to rest up after that. She still gets a lot of pain from her hip (I haven’t asked her if any of the lumps have shrunken yet), but she doesn’t complain of the deep, floating pains any more. She doesn’t pass out at stop lights any more, and standing in lines isn’t much of a problem any more, for the most part.

All in all, it’s a tremendous improvement from the state of total exhaustion and pain she lived with a year ago, but the progress is slow and she’s a little frustrated that it’s staying with her for so long and that she sleeps away so much of the day. But I imagine that after the several years of sleep deficit that she logged, it probably takes a couple years to repair the damage and replenish the reserves.

So to answer your question, Dinsdale, I think a lot of the problem is generated because of sleep deficits and stress. Those are typically considered to be mental/emotional causations, so it’s probably fair to say that the disease has mental/emotional origins. But after enough years of sleeplessness and stress, I think that the body goes through tremendous physical damage (including to the nervous system), and the fibromyalgia and the symptoms of pain and exhaustion are the outward manifestation of all that physical damage. As such, I think that the actual symptoms of the disease indicate a certain level of physical damage that has occurred in the body across the years due to long-term stress and sleeplessness.

To put it succinctly, I think that the disease originally arises from mental/emotional problems (stress and disrupted sleeping patterns), but that the actual pain and exhaustion that set in over time are symptoms of subsequent and ongoing physical damage to the body and nervous system after years of stress and sleeplessness.

Here are the usual disclaimers: I’m not a doctor, and I don’t have any prior or personal experience with the disease. I’ve drawn my conclusions from my GF’s experiences with the disease and from some light reading on the subject on the Internet and in newspapers over the last year or so.

25

The thing to remember is that a diagnosis of “fibromyalgia” is not a diagnosis of a disease, but of a symptom. It’s like finding a patient has a fever and runny nose. We now know that that constellation of symptoms is typically caused by a viral infection. Or the discovery of people with acquired immune deficiency syndrome, which was eventually traced to the Human Immunodeficiency Virus. But we don’t really understand what causes or cures fibromyalgia/ epsein-barr/ chronic fatigue / gulf-war syndrome/ multiple chemical senstitivity / etc. We don’t know if the symptoms are caused by a physcial disorder or mental disorder, by virus, nutrition, environmental insult, stress, genetics, etc.

We don’t know if all cases of “fibromyalgia” are caused by the same thing. And it seems to me (I am not a doctor) that it is highly unlikely that everyone suffing from fibromyalgia has the same disease. And people who suffer really have no patience for “you have a problem, we don’t know what it is.” So, the doctors assign a name to it, although there is no evidence that the loose constellation of symptoms have any connection with each other. I mean, of all the people diagnosed with fibromyalgia, if they had been to the Persian Gulf they’d be diagnosed with Gulf War Syndrome.

Anyway, the point is that giving it a name doesn’t really mean anything. Perhaps the only good reason to give it a name is to highlight that there are people with problems, and we don’t understand the problems. With a name for the problems, it is easier to pay attention to the problems. But that’s the only reason I can think of, since giving these symptoms the same name can also blind us.

26

g@ddamn right it’s real…and I wish that the f#cking legal profession would wake the f#ck up and quit screwing with people who are in real, honest pain.

…and if there’s a lawyer or two out there who knows what I’m talking about, please e-mail me. Any attorneys who suffer from this debilitating disease and who’ve walked in my wife’s shoes, I’d love to hear from you.

27

I wanted to steer clear of this thread because I’m afraid I’ll wind up with my foot in my mouth. But, I’ve resisted long enough.

I do not know the answer to the OP’s question. At the risk of sounding facetious, you need to ask “What is real” with respect to a medical diagnosis.

Typically, in Western medicine, a “real” disease has objective findings and measurable effects (eg. laboratory or X-ray findings, etc.). Further, there is a physiologic framework on which one’s uderstanding of the disease is based (and from which inspired guesses at therapy arise).

Fibromyalgia has few objective findings, and those that are present are not specific to fibromyalgia. As someone said above, the ‘trigger points’ (fibromylagia’s sole roots in objectivity) are found in a number of conditions including a high percentage of apparently healthy people.

Fibromylagia has no measurable biochemical effects. I am unaware of any radiographic changes.

There is no clear (patho)physiologic understanding of the entity.

So, is it real? If it is, its reality would seem to be subjective (and I use that term in a non-perjorative sense).

Parenthetically, and in response to Dinsdale’s provocative and insightful posts, I’d like to list the following possible historical and/or current equivalents to ‘fibromyalgia’:
[list]
[li]hysteria[/li][li]depression[/li][li]20th century disease[/li][li]environmental hypersensitivity syndrome[/li][li]hypoglycemia[/li][li]chronic fatigue syndrome[/li][li]irritable bowel syndrome (some cases)[/li][li]irritable bladder syndrome (some cases)[/li][li]temporal-mandibular joint dysfunction (some cases)[/li]
Various epidemiologic studies have shown a fair bit of overlap among patients given the above diagnoses. I interpret this to mean that there are many individuals with ‘real’ symptoms who, depending on which doctor they visit, get a different label. And that’s key. People like labels. It’s easier to live with a label of ‘Disease X’ than it is to live with “I’ve got something but nobody knows what it is” i.e. “nobody believes me”. The offering of a diagnostic label validates the patient, as a person with a real disorder.

28

Don’t know what particular aspect of the legal profession your beef is with, poopah. Let me know, and I’d be glad to join you in some good old lawyer bashing.

That said, I am a lawyer who has worked exclusively in the area of Social Security law, primarily disability benefits, for the past 15 years. I have seen many many people awarded bens based on the dx of fibromyalgia. I also have seen my share of ALJs who attempt to deny bens because, in their opinion, fibromyalgia is not “a medically determinable impairment.” Those cases ought to earn an automatic remand. There are a number of people out there with diagnoses of fibromyalgia who lead their lives in a manner that suggests all they are incapable of doing is working. They lead relatively active social lives, engage in considerable daily activities, fail to seek aggressive treatment, etc. IME, in the cases I see the majority of medical diagnoses of fibromyalgia are inadequate - they do not attempt to rule out alternative etiologies or apply the accepted diagnostic criteria. Instead, it is often, if not usually, applied as confirmation of a patient’s self diagnosis, generally following watching a TV show or reading a magazine article.

Moreover, at least as defined by Social Security, the term disability is defined rather strictly. It does not mean you must be pain-free. Nor does it necessarily mean you must be able to do your past work.

Finally, the term secondary gain does not mean that the individual does not honestly perceive their complained of symptoms, nor does it mean they enjoy the “attention” they receive.

29

Dinsdale:

Now you’re asking whether fibromyalgia represents a disability that is severe enough to rate Social Security benefits. I have no idea.

It never occurred to either my girlfriend or me to apply for benefits of any kind. She was still functional at her job (although her job performance was increasingly suffering). Mainly, she needed some time off to rest up and catch her breath after a long period of turmoil in her life and eventually some illness. I was able to support her, so she took the time off. We’ve got the problem under control, we don’t need government help, and we anticipate that she will recover from most of the effects of the illness.

In my GF’s case, she definitely needed some real time off and a change in lifestyle, or she would have continued to get worse. Many folks in this situation become bedridden, which essentially solves the problem—they finally get the rest they need, and they start regaining some measure of health. Of course they also lose their jobs, go bankrupt, and have to rely on friends and family to support them and nurse them back to health over a period of two or three years.

Should the government step in and provide benefits and time off from work for sufferers before they become totally disabled? I don’t know. And at what stage should the government step in? At the earliest signs of the illness, when the sufferer is still relatively active and still able to cope? I don’t know.

Then you have to factor in the problem that fibromyalgia is still at the stage of being a “trashcan diagnosis”—if a patient presents with a case of tiredness and vague pains, it’s easy for a doctor to slap the label of “fibromyalgia” on it just to soothe the patient. More research will eventually narrow down the illness in roughly the same way that research eventually defined specific symptoms and traits of those who sufferer from the various eating disorders 20 years ago (as opposed to simply saying “They’re skinny and malnourished”). But for the present, I understand your frustration with the idea of awarding benefits for such a vague diagnosis.

Finally, to the extent that people cope with stress inefficiently and often incorrectly, it might be said that fibromyalgia is the result of bad lifestyle choices—overwork and inability/unwillingness to recognize the consequences of a stressful life until it’s too late. Should the government pick up the tab?

These are all legitimate questions, and I honestly don’t know what the government philosophy is in these cases—when and to what degree should the government support the citizen suffering from a gradually disabling illness resulting from lifestyle choices and/or the individual’s natural ability/inability to handle stress.

In other words, these are all good questions for which I don’t have any answers.

But I expect that the problem will continue to be around for some time to come. Average hours worked per week continue to rise, as does the number of two-income families. And women will continue to be at risk–it’s tough to juggle a stressful job, a passle of children, housework, and an unsympathetic husband and still have enough personal time and space at her disposal to blow off steam and reduce stress. It’s one of the prices we pay for modern life…

30

I was diagnosed when I was twelve. Yeah. Only been four years…but seven years of pain, constant pain…

I frankly don’t know if I consider it real. I have the symptoms, but they match up with a lot of other things I’ve already been diagnosed with (hypermobilty syndrome, Osgoode-Schlatters, etc. etc.). I was diagnosed due to my having all these pains, and had for years, and everything else, and the doctors couldn’t pinpoint it to any one disease. It is NOT something mental, however, as some people think of it (particklerly my school…they want me to come all day every day and I cannot).

Dang. What a stupid “first post.” ::coughs nervously:: Feel free to ignore me. I was just surprised at a mentioning of FMS. :slight_smile:

31

Hey, Toaster. Welcome, and thanks for your perspective.

[sarcasm]Yeah, your post was a lot stupider than heading over to MPSIMS and starting a “Welcome me I’m a newbie” thread.[/sarcasm]

32

Good first post, Toaster. Like Dinsdale said, this is a much better use of your No. 1 post than starting a “Come meet the newbie!” thread in MPSIMS.

Sorry to hear that you’re having to struggle with something like that in your teens. My girlfriend and I are in our mid-to-late 40s. As such, for us it’s just a question of slowing down and smelling the roses for a few years. My girlfriend just sees it as a bit of a pit stop in the race of life.

Meantime, hopefully they’ll start getting a better handle on this illness in the near future. It is attracting increasing amounts of attention as time goes by, and with attention comes research and answers.

I hope to see more posts from you around the SDMB in the future. All the best!

33

The latest thinking of Dr. Edell is that it is a mental problem: http://www.healthcentral.com/drdean/DeanFullTextTopics.cfm?ID=46927&src=n2

And Toaster, I don’t completely understand your problem, altho I completely commiserate with you. The disorders you mention, such as Osgood-Schlatter’s, have a focal point of pain. In persons your age, OS is a common problem, esp. if you play baseball and do a lot of sliding.