Thanks for your interest. Wish I had something useful to convey. Mostly I've avoided seeing physicians and have had no special tests. Early on I saw Dr. Jay Goldstein, a CFS expert that retired in 2003. He found me to be somewhat challenging, in that I didn't respond to most of his treatments. One, however, made a huge difference, immediately and for several years: ketamine. He gave me an IV infusion (low dose over an hour) and I was nearly normal for about 2 weeks! Subsequently I would use small doses periodically on my own, which helped, but didn't repeat the "cure" effect. Based on my response to NMDA antagonists (which ketamine is), he started me on methadone (which has a small NMDA antagonist effect in addition to being a mu opioid agonist) and it helped considerably. I still take it 10 years later, but I don't think it is quite as powerful for me anymore. I take other meds for pain control, and that is the primary extent of my treatment over the years. More recently, after my crash in 2009, I've seen a naturopath who found I had some nutritional issues (extremely low magnesium stores) and mild hypothyroidism. These issues have been corrected, but I can't say I feel much better for it.
During the years of my relative remission, I pretty much pushed away thoughts of my illness and just kept taking the meds that seemed to help. Now I would like more extensive testing to figure out exactly what my issues are: POTS? viruses? exercise physiology problems? I'd love to do SPECT or fMRI. I contacted Dr. Peterson's office almost a year and a half ago, because I know he does such testing, but haven't heard from them for a year now. Perhaps I'm still on the waiting list. But again, I tend to just let things slide having to do with my health.
As for coping with stress and pressure, I don't know any magic. I just put one foot in front of the other, one step at a time. Fortunately, I've always been good at staying up late, so working long hours wasn't too bad. My problem comes in getting up; I feel horrible after sleeping. Re: stigma... I told a few people in medical school, gave some lectures on CFS and such. The Dean knew, because he allowed me to take 2 extra years to finish med school, he seemed to be sympathetic. During residency (anesthesiology), though, I kept it entirely to myself for fear that anyone knowing would cause them to look for weakness. Such an unhealthy, unsupportive atmosphere. There was one guy on the faculty who would mock me for lying down in the call room during the relatively quiet morning periods when I was covering the PACU (recovery room) of the main OR (which would be total insanity every minute from the early afternoon on).
I always wished people could know just how much harder it was for me, so that instead of my always being afraid they would think I was being lazy if caught resting, they would know it was the total opposite. The peak of that petty feeling was when at medical school graduation I didn't get elected to AOA (the honor society) despite my grades qualifying. I suppose they (other honor students) thought that having an extra 2 years made the accomplishment less impressive somehow. I really don't know how I got though internship and residency; I just kept going. Every minute off I rested (read: collapsed). That it had an end point was key, I think. Particularly for internship. There's an aphorism interns know about every minute passing getting you a minute closer to the end of internship. I took that to heart: I even had a count down clock set for the last day!
One thing I can say helped with pain and emotional state when I was at my worst: mindfulness meditation practice. In particular I went through the program created by Jon Kabat-Zinn in Full Catastrophe Living. I did it myself, and then when referred to an otherwise useless pain doc at Kaiser in Santa Clara, was hooked up with a great program by Kaiser where they had a guy trained in the program present it as a 10 week (or so) course. It helped with pain and stabilizing mental state, and the very gentle yoga exercises actually got me able to move around again. I was already starting to recover by then, but the yoga exercises increased my core strength sufficiently to get me back on my feet. In later years I found meditation helpful during the periods when I would get myself in the habit of doing it.
In those desperate years after my first crash I tried all kinds of supplements (I still do that but can't pin down anything as helping much), weird diets (macrobiotic), Tibetan medicine (the Dalai Lama's personal physician when he came to Berkeley), Bach flower essences, who knows what all. On my mom's instigation, I was tested for hemachromatosis (negative). I was able to "fix" my lactose intolerance that started with the illness and puzzled the heck out of me for a few years because I couldn't imagine how I could suddenly become lactose intolerant. I think taking glutamine was the trick for that but I can't be sure.
Then, one day I suddenly felt better: I sat up one day and thought, "Wow! I just sat up without any trouble!" I'd been having to roll to my side and gradually push up from there. I'd been taking some kind of anti-Candida supplement with caprylic acid that week, so I thought maybe that was the magic bullet. Sadly, though, it didn't turn out to be during subsequent relapses.
This turned into a rambling ramble, without much useful info, I think. I think my primary "secret" is stubborness. However, that also leads me to constantly overdo. I can't exercise just a little, so I always have PEM. I'm far from a role model, I'm afraid.
Thanks for "listening"!
