I'm responding to webdog and many others who have been in conversation about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
My journey has been long. It started with a diagnosis of Fibromyalgia in 2011 by a rheumatologist who diagnosed it and had no interest in treating it. Needless to say, I left him and sequentially saw two more rheumatologists who continued to believe it was Fibromyalgia and treated me for it. One day, I went to see the 2nd rheumatologist and I was feeling awful as I had more severe pain and fatigue. She did a blood test which revealed that I had a high level of Epstein Barr antibodies. As a result, she changed the diagnosis to ME/CFS. She then told me that while she knows how to diagnose it, she doesn't know how to treat it and recommended strongly that I see an infectious disease specialist, the only one in my city who at that time, in 2018, was the only specialist in ME/CFS as she was doing medical research about it. I waited several months until I was able to see her. She had an independent office, not affiliated with any medical institution. She concurred with the diagnosis and prescribed a number of supplements and Valtrex, an anti-viral. She did a blood test every time I saw her and the Epstein Barr antibody level continued to be high. Mind you, this was 2018 and my brush with Epsten Barr dated back to 1965-66, when I was a sophomore in college! I had a bad case of mononucleosis, which lasted a whole year, but I had recovered! Six months into treatment with this specialist, I told her that the Valtrex is making me more sick and I questioned whether I should take it as it appeared that it was no working as the level of Epstein Barr antibodies was not going down. Her response was: "To be honest, at your age , which was 75, you are not treatable. That prompted me to leave in despair. Next, I went to a neurologist who was kind, but didn't know what to do with me. Ultimately, I was so sick that given that I'm a widow living alone, I hired an aide who helped me with daily tasks and accompanied me to doctors and a wonderful acupuncturist.
Ultimately, I decided to move to a Continuing Care Community (CCRC) as I did not know what the future may bring.
I started to search for another rheumatologist and neurologist as well as a PMP. None of them in the area had heard of ME/CFS. I have been in this location for 3 years with no productive medical care.
I have been following the research since the Fibro diagnosis and then ME/CFS. I even took an online course about CFS that attempted to help patients with this diagnosis to manage their lives better. Everything I read emphasized PEM and advised against exercise. Now question whether my diagnosis may be incorrect and I plan to see yet another rheumatologist. In the meantime, I'm ignoring all advice about exercise and am working with a personal trainer on gentle exercise to strengthen my muscles and my bones as I have been diagnosed with osteoporosis. I've reached the point where I'm following my own intuition as I believe I know more about my body than any of the doctors I have seen. This may sound arrogant, but it is proving to be true. I am energized. I am not suggesting that this applies to others, but it is my story. I am doing a lot of volunteer work in my community and believe that the more I am involved in helping others, the better I feel.