Do you think I should send this letter to “Addison“? Please tell me by selecting yes or no at the end of this post!
Dear Dr. Addison,
I thought you might like to know what has happened with my health since we last spoke in 2006. You may remember that at the beginning of that year, I complained of fatigue that prevented me from working or leading the life I knew in any way; unquenchable thirst; feeling like I had been hit by a truck after I tried to push through my fatigue and go for a small walk; insomnia; various kinds of digestive distress; and pain in my joints, particularly my wrist. It turns out that I’m suffering from Chronic Fatigue Syndrome/Fibromyalgia Syndrome (CFS/FMS).
Because of problems defining chronic fatigue syndrome and fibromyalgia, I prefer to use the following definition:
Unexplained fatigue that significantly interferes with your functioning and is associated with any two of the following symptoms:
- Brain fog;
- Poor sleep;
- Diffuse achiness;
- Increased thirst;
- Bowel dysfunction; and/or
- Recurrent and/or persistent infections or flu-like feelings
If this describes how you are feeling, than you probably have CFS. If any of the above symptoms are accompanied by widespread pain, you may have FMS as well.
The above quote is from the website of Jacob Teitelbaum, M.D., who found that CFS and FMS have the same underlying condition of hypothalamic dysfunction. I am attaching the publication of his clinical trial results Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia. Also complementary copies of his book From Fatigued to Fantastic are available to health care practitioners.
Many other CFS (or CFIDS for Chronic Fatigue and Immune Dysfunction Syndrome) definitions add post-exertional malaise to the list of defining symptoms. This is of course what I was experiencing with the hit-by-a-truck feeling.
I found out that CFS can mimic lupus, but once lupus is ruled out (which you did) then Chronic Fatigue ought to be considered. Early in 2006, you told me I was clearly chronically fatigued but that “chronic fatigue syndrome is a very specific thing.” I think now that you may have been referring to virus-induced chronic fatigue syndrome. According to Dr. Jose Montoya, who just concluded a clinical trial treating CFS with Valcyte at Stanford University, the virus-induced kind is merely a subset. CFS can also be triggered by an operation. You may remember that I had surgery in September 2005. Please find attached some information from the CDC describing common myths surrounding this disease.
When you dismissed the severity of my condition in our last conversation, I’m afraid you did me much harm. I kept wondering if part of the problem was that you only saw me on my best days. When I was too ill to make it, I simply rescheduled my appointments. How I wish I had been accurately diagnosed in 2006! How I wish you had been willing to write a note for jury duty that at least said I was not well enough to sit on a trial – that doesn’t require a diagnosis. I am responding well to treatment now, and hope to regain sufficient strength to live a normal life soon.
I beg you to reconsider your position if you should ever get another patient like me. Even if you simply say, “I don’t know, this is not my area of expertise,” and refer the person elsewhere, you’ll avoid making things worse. There are doctors in the Bay Area who are experts in diagnosing and treating CFS/FMS at Holtorf Medical Group in Foster City. There are also resources for finding practitioners worldwide on EndFatigue.com. This has been quite a learning experience for me and maybe it can be for you too.
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