” A little knowledge is a dangerous thing. So is a lot”, Albert Einstein
Having worked, taught and been involved in research for many years in a university, I am accoustomed to conferences and seminars where reviewing, applauding or critiquing the work of others is usual. Building upon good science and discarding that which seems wrong headed is part of the research process. It is how new knowledge is created. It is the true meaning of what constitutes good science. In short, open debate is encouraged.
However, I have had an unhappy experience regarding a talk I attended, supposedly about fibromyalgia, and arthritis. In the newspaper I read the heading of a seminar about fibromyalgia, followed by a list of various kinds of arthritis. I optimistically hoped that at long last the two conditions would finally be separated and the speaker would be up to date on fibromyalgia as a syndrome, not a disease, totally unrelated to arthritis.
The room was quite full with men and women, the majority of whom said they had arthritis. I believe only one or two of us had fibromyalgia. Why, I wondered, would this talk be even focussed on fibromyalgia? And, further to my chagrin the conditions and treatments were all lumped together as the speaker presented the pitch on a product that would diminish the pain of both fibromyalgia and arthritis.
People with arthritis can have blood tests, and imaging and then it can be said conclusively that there is an auto-immune disease. Furthermore, it is not an invisible disease and as the condition accelerates it is usually visible to the naked eye. In fact, almost everyone over the age of 40 has some degree of arthritis in the joints, and it increases with age. Conversely, those with fibromyalgia are usually (but not exclusively) young adults to middle aged people (primarily women).
Those of us with fibromyalgia do not have a disease. There are no tests of a ‘scientific’ nature that can give us that label. Our condition is invisible. Because we do not have a bacterial infection antibiotics do not work. Because we do not often have a hormonal imbalance, hormone replacements do not work. Yes, we do have pain and fatigue such as those with arthritis do, but they are NOT the same conditions, nor are they even distant cousins. For many of us Lyrica or its cousin Neurontin does give some degree of relief. Otherwise it seems as though there is nothing chemically that can give permanent relief. I keep wondering when the rheumatologists will finally say they have had enough of this lumping fibromyalgia under their baliwick (which is often so difficult to diagnose) and within their practice when the conditon of fibromyalgia belongs within the realm of psycho-neurology. Fibromyalgia is due to an overstimulated nervous system thereby producing too much cortisol, resulting in this hyper-arousal of the central nervous system (see other blogs I have written about this). It is not a disease entity like arthritis. Although young people can develop arthritis, young people with fibromyalgia do not usually have arthritis.
I sat through the presentation seething. At the very end I asked the final question, keeping very quiet otherwise. I asked why fibromyalgia was included in this seminar with arthritis since it is not a disease. The speaker surprised and shocked me. The response was: “You’re right. Fibromyalgia is not a disease, it is a syndrome. We just do this because we have a lay audience and it is easier to include them together”. Phew. Was this demeaning and dumbing down for the audience?! Furthermore, that combination of the two conditions distorted the entire presentation and was misleading.
A few minutes later as the speaker spoke with me before becoming organized to approach the large table to sign up participants for the program, I was told that this complaint had been heard before from doctors. I told the speaker that I would be writing about this on a blog and the reply was: ”Good things, I hope”. I responded “No, not really”. THEN CAME THE BOMBSHELL. The response was: “BE CAREFUL OF A LAWSUIT THEN”. I am now silenced. My honest voice cannot be heard.
Is this science in the true sense of the word? I cannot name the product, nor the ingredients. I cannot mention the name of the presentation. I cannot say where, when and in what country this took place. It remains shrouded in mystery, deliberate on my part. Free speech is now squelched. I don’t know if this product is helpful for arthritis, or even fibromyalgia. I just know that lumping together arthritis and fibromyalgia is inaccurate, and yet I cannot give any details about why, or I may be sued. This would never happen in a scientific milieu where these things can be openly debated. This is the first time I have ever been threatened in this way. What has happened to us that we cannot express our opinions without a fear of litigation? How has it come to this? Those of us living with this invisible condition have enough to bear. Must we also be silenced and therefore victimized? It is a litigious culture that has many of us fearful of speaking out. I too dare not now describe this experience in any more detail.
It is little wonder that those of us with fibromyalgia are subject to one new idea after another that purports to end or substantially decrease our pain. Perhaps this product does help those of us with fibromyalgia. I can’t be certain about that, one way or another. But, if so, why hasn’t the greater scientific community heralded this as a huge breakthrough? Why can’t I openly question the issues? What is this continued relationship of fibromyalgia and arthritis all about? It is true that many people with chronic conditions can develop fibromyalgia as their nervous systems become overtaxed, but this is the end result of a chronic condition, not something that is a relative of a disease. Fibromyalgia is a dis-ease, not a disease! WHAT IS TO BE DONE? Are we to suffer in silence?
“LIFE IS NOT A SPECTACLE, OR A FEAST; IT IS A PREDICAMENT”, GEORGE SANTAYANA.
Jeez, so sorry you are not silenced. One should be allowed to give HONEST reviews of presentations, companies, and products – good or bad – without being threatened with lawsuits. Then again, people do give honest reviews of such all the time and they do not get sued. Perhaps it is in HOW you would present such a post? If you have access to a lawyer, run it passed him or her and get their opinion. In fact, write out the post you want to write about this company and their product on paper and see if that lawyer thinks you would be sued over it. *shrugs* Couldn’t hurt to try and see.
I don’t know whether to call Fibromyalgia and Chronic Fatigue Syndromes dis-eases, diseases, syndrome, or what. I just know I am ill … all the time, and because I have not been able to afford health insurance, doctor visits, lab work, or medications for well over 10+ years (the time-span of having FMS and CFS), I have been living with the pain, the fatigue, and all the extras that come with the two … on my own, with nearly NO relief … and unless drug companies and the health care industry stop being so greedy and disconnected with the rest of us – the patients – then I foresee not having any relief for years to come.
I’m only 35 years old. I haven’t been able to hold an outside job in nearly 6 years because of FMS and CFS. I am lucky and grateful that I get to work from home, freelance, doing webmaster work, as I get to sleep and take breaks when my body says to. I’m supposed to be working today, but the brainfog is keeping me from concentrating. I could crawl back into bed even though I slept well. This snowy weather isn’t helping either LOL, good snugglin’ weather.
Keep up the good work and helping to the spread the word!
Barbara Eyre
North Carolina
Dear Barbara:
Stories like yours break my heart; you are so young to be suffering so much. Like you I developed fibro at age 25 after the long labour and C section of my first born. I absolutely forget what it is like to be pain free.
While our health care system here in Canada is different than yours in the US, and I cannot comment on what you do have available, I sincerely hope you will some day be able to afford good health care and pain medication that will at least give you some degree of relief.
Thank you so much for your comments and support, plus the advice for the ‘product’ whose name I have not mentioned.
Keep in touch,
Barbara
I also am dealing with FMS there are good days ans bad days. I have found that Fibroplex twice a day helps me. and chiropractic visits with a chiropractor that specializes or at least is informed of Fibromyalgia. Resevertrol helps with the pain. It is the middle of the night so I’m typing in the dark. Hoping to be able to back to sleep. I would like to know what has helped and what you have found that doesn’t work.
Chiropractic adjustments have certainly helped me over the years! However, no medication or alternative concoctions have:-(! My book describes many of the things that have helped me (and others). Hopefully it will be helpful for you! Best wishes, Barbara