The reason for this article is not to rant but honestly to vent a bit because I feel the need to share this with all of those that suffer from Fibromyalgia. There is a major issue that has been extremely irritating to me for several years but I thought that it would change with time. Unfortunately it hasn’t. Over the past 15 years, I have examined, diagnosed and treated over a thousand Fibromyalgia patients. Presently at Fibro Care Center about 30% of my patient volume is strictly Fibro. Just as important, I have the condition myself for many years. If you combine those facts with the fact that I have devoted the vast amount of my time to studying and researching Fibromyalgia and similar conditions, I guess you can qualify me as someone who has a pretty deep understanding of these syndromes and what those that suffer from them are dealing with. I not only have the clinical knowledge that would qualify me as an expert; I have the understanding and empathy that can only come from someone who has dealt with the condition themselves.
Isn’t it sad that several years ago, many in the medical community refused to accept FMS as a “real” diagnosis? For me on a personal level it was merely annoying but, on a professional level, it became extremely frustrating to be diagnosing patients every single day that were misdiagnosed by the so called “experts” for a long time. It is even worse that many of these patients that were misdiagnosed were being told that there was “nothing wrong” or the problem was “in their head”. This often resulted in patients seeking a second, third, fourth or even a fifth opinion and having test after test repeated. This is so frustrating, especially with all of us thinking now about health care costs. Can you imagine how much unnecessary spending was done just due to ignorance, or dare I say arrogance?
So after years of my having to convince many patients that they indeed did have Fibromyalgia after their doctors pretty much dismissed them, I thought maybe we were finally on the way to a better level of understanding. This was because of all the recent campaigns, advocacy and even advertisements centered around Fibromyalgia. I guess it was naive of me to believe that with the FDD approval of specific meds for Fibro i.e. Lyrica, Cymbalta and Savella that the medical opinions would change. Then again I should realize that in order for that to happen, providers would have to admit that all the patients they “blew off” were in actuality really suffering from something they should have diagnosed. What an interesting dilemma the health care profession faces. Do they admit that they were wrong for all those years and swallow their pride or do they continue to ignore those patients that suffer from Fibro and preserve their egos at the peril of the patient?
It is unfortunate but lately I am still seeing much of the latter. Almost every single day at least 1 or 2 of my Fibro patients comes in and tells me that their PCP told them that they “don’t believe in Fibromyalgia”. The definitive word there is “believe”. This is absolutely amazing with the research that is now available to every health care provider. Is it possible that they are living in the Stone Age or maybe just haven’t kept up with all the latest studies done by the American Pain Society, The National Fibromyalgia Association, The American Arthritis Association, The National Institute for Neurological Diseases, The American College of Rheumatology or several other organizations? Most of these studies have been widely published in their best medical journals.
I actually think that it is not lack of information because they are all required to have continued education and even if it’s not the subject that is being taught at their seminars, the journals and the pharmaceutical reps are certainly providing them with plenty of information. That is why I am frustrated and upset. I have to assume that is isn’t ignorance but pure pride that keeps some doctors from admitting they were wrong.
Now, what should you do if you suspect that you have Fibromyalgia and your doctor says you don’t? In my opinion and what I tell my patients, that all depends on what their doctor says and how they explain their findings in their case. After all, there are many times that other conditions mimic the symptoms of Fibro. Tests may indicate that you indeed have something else easily treatable in which case your doctor was correct in saying you do not have Fibromyalgia. Then there is the other situation where your doctor may say those words “I do not believe in Fibromyalgia”. Maybe the tests came back negative and your symptoms are totally related to Fibro and your doc says they don’t “believe” in it. Well…that is where I tell my patients to run.
It would be a terrible mistake to stay with any doctor who says they don’t “believe” in Fibromyalgia. Fibromyalgia is NOT a religion. It is a health condition like any other. Does your doctor then not believe in Multiple Sclerosis? How about Irritable Bowel Syndrome or Migraine Syndrome? After all, they are also syndromes that you cannot see on X-ray or blood tests. So, I tell the patient if they don’t believe in Fibro, you should not believe in them. It is then time to find another doctor, pure and simple. I know it may be difficult for some people to switch doctors but it is crucial for those of you that fall into this category with those disbelieving doctors. The 2 main obvious reasons for finding someone who understands and believes is because there is no way you can get well if you remain undiagnosed and also the fact that your doctor is totally out of touch. As stated before they are either too proud to admit that they were wrong for all those previous years of having a dismissive attitude toward Fibromyalgia patients or they just are not up on the latest studies. In either case, isn’t it reason to leave and find someone that will not only diagnose you correctly but also really understand?