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.