I think I have pissed off the fibro community

Out Sick Today
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I received a comment from a reader about my latest update about my medical problems linking to a rant she had written about a news article saying that fibromyalgia was a “murky aliment”.  The thing is I kinda agree with the article and the comment I made on her blog said so.  I am expecting a serious backlash as people do not appreciate when you say that you don’t think that fibromyalgia is a real disease.

Now I am not saying that I don’t think that the people who have fibromyalgia are not suffering from a real medical aliment, I just don’t think that it should be termed fibromyalgia.  The reason being is that I have heard from medical experts that fibromyalgia is an autoimmune disease, a neurological disease and a pain disorder, now no single disease can be all three.

Also, people suffering from fibromyalgia do not always have the same symptoms as other people with fibromyalgia.  Now my understanding of  disease is that the symptoms of that disease stays the same, it does not change from one group of people to another.

Then there is the “test” for fibromyalgia which is the pressure point test.  If you scream when someone presses on 11 of your 18 pressure points, you have fibromyalgia.  Now this all depends on how the person performs the test and how good or not they are at hitting your pressure  points and how much pressure they use.  It is way too subjective for my liking.

Now, I have the official diagnosis of fibromyalgia.  I aced my first rheumatologist’s pressure point test, yet I do not have all the classic symptoms of fibromyalgia.  When I had my first attack,  I did have widespread pain in all four quadrants of my body, now however, I only mainly have it in my legs.  I do not have the level of toxic fatigue that is common in the fibro community but I do have some level of fatigue which can be explained by an underlying sleep disorder. I do not have any cognitive problems which are also common.  I also have problems with the muscles in my legs, they are weaker than they should be and they tighten rather dramatically when I am having an attack – this is not a symptom of fibro.
So you don’t have fibro, I can hear you all thinking.  Maybe, maybe not.  But I am on and responding amazingly well to the FDA drug approved for the treatment of fibromyalgia.  So according to the drug company, I would be listed as having fibromyalgia and responding well to the treatment for it.

My personal belief is that fibromyalgia is not one disease but instead a collection of diseases with very similar symptoms.  It may be that science will find that it is three separate diseases; one which is an autoimmune disease, one which is an neurological disease and one which is a pain disorder.  I don’t think that lumping these diseases together and calling them one disease is doing anyone any favours as I think this will prevent research finding out as much about these diseases as they could if they didn’t think it was one disease.

This belief will make me extremely unpopular.

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11 responses to “I think I have pissed off the fibro community

  1. One of the kids I worked with was diagnosed with it at 10. Normally to young to be labeled with it, but the collection of symptoms were in line with it. Whether it was one condition or many, I know know. All I know is she was tired from pain so that she couldn’t go to school and so missed a lot of literacy work.

  2. Whatever fibro is, it does destroy life as you know it. The pain is something like I have never experienced before.
    I am always so sorry to hear of kids being affected by it, it is not fair.

  3. I find your entry really compelling, particularly given my field of interest, which is public health. And, if you will forgive me, fascinating. When something straddles boundaries or cannot be satisfactorily defined, it almost always engenders controversy among the communities that are affected or those that seek to study it. I think your entry touches on some larger questions too, such as what is the nature of disease– particularly for chronic illnesses. What may be termed ‘disease’ for some individuals is simply one facet of another person’s life or personality (most often with mental illnesses). While thats not the case here, I only mention it because defining illnesses and disease then give people some structure as to how to define themselves in some way– you suggesting that fibro is not one disease is going to challenge others to whom giving name and validity to the symptoms that have so profoundly altered their lives is quite important. I think you wrote really well about the complexity of your experience here. Now, I’m more of a lab junkie than a social scientist, and more focused nasty infectious disease than baffling auto-immune diseases (though many are thought to have an infectious etiology!) but thought I would comment anyways, and glad you’re finding some relief with your meds.

  4. Your beliefs do not make you unpopular with me, and I have a Fibromyalgia blog and organize a Fibromyalgia support group.

    I think it is healthy to question labels, especially when there are so many gray areas as there is with FM. I too find the pressure point test way too subjective even though I have “aced” it every time it has been given to me.

    The fact of the matter is that FM is a relatively new and under-researched condition. The medical community is constantly changing their opinions on what it is. I could really elaborate here, but I won’t.

    The most important fact is that we all are suffering and we want answers. Not just answers – SOLUTIONS! I believe there are many changes ahead for the qualification and diagnosis of FM. As long as progress is being made and patients are being helped, I don’t really care what they call our condition. But please, never tell us it is not real.

  5. Yeah, you are right, I think you pissed me off. No time to prove why, but lets just leave it at that.

  6. girlfromtheghetto: I would like to know why you are so upset that I don’t think that fibro is one disease but is a collection of diseases, but if you don’t have the time I understand.

  7. Fibrohaven: I never said the symptoms of fibromyalgia were not real nor caused by a real medial problem. I just question fibromyalgia being a real disease, it is a syndrome at best.

    Fran: Glad I could fascinate you. I also find it fascinating for similar reasons and would love to find out exactly what is causing these myriad of symptoms.

  8. It is unfortunate that all you took from my post was “please, never tell us it is not real.” If you had read it carefully you would see I was saying that to the “they” in the previous sentence, not to you. “They” being the medical community, the ones with a voice great enough to actually affect the treatment of Fibromyalgia patients, the ones quoted in the AP article.

    I was actually including you in the “us” of the last sentence. I think maybe because you assumed you “pissed off the fibro community” you were actually looking for confrontation where there was none.

  9. Fibrohaven: I’m sorry I must have read your comment wrong as I really thought that you were telling me not to tell you that fibro wasn’t real. I apologise for my misunderstanding. Trust me, I am not looking for confrontation.

  10. As a sufferer of Chronic Fatigue Syndrome, I found your post very interesting.

    The ‘fogginess’ surrounding Fibromyalgia sounds similar to that of CFS, which was also called myalgic encephalomyelitis at one time, and is now believed to be a neurological disorder.

  11. I’m 18 and dx’ed with fibro and osteoarthritis. I was not offended by your pst at all, I only get offended by people saying “You made up your pain and your faking it”. I think you made a great point =). I myself am hoping that they find out more about fibro soon because the sooner they know more the better they can help all of us that are diagnosed. I have seen multiple doctors that all came to the same conclusion about fibro and mri’s showed the arthritis in my neck and spine (blah sucks lol). I am pleasantly surprised that you psted this because it opens doors of thought for all of us. Thank you and have a wonderful day, God Bless!