You did a much better job of summarizing what I am experiencing than I did! The only adaptations or clarifications I would make are

1) None of my other doctors knew about the Chronic Fatigue Diagnosis. I moved twice between 1998-2000. I mostly had symptoms of fatigue, swelling, and light hives during that time. I had sun sensitivity (more blotchy than a rash). I would get swelling in my feet and hands but usually only one at a time. For 8 years I was dismissed by multiple doctors. I did not receive the +RNA test until 8 years after the CFS dx.

2) While I have had some nerve symptoms off and on since the beginning of this journey (popcorn, pins & needles), they were mostly in my hands and arms. I don't have to walk on them and it was transient so I rarely mentioned it. Symptoms in my left foot did not begin until 18 years after the CFS dx and 10 years after the Lupus dx (that was later reversed).

3) I was originally dx with moderate foraminal stenosis on both sides (MRI). The spine doc did some old fashioned x-rays and said that the foraminal stenosis was actually severe when I am standing. I assume it has always been severe when standing but I didn't stand through my MRI. 🙂

4) Back injection was a steroid injection at L5-S1.

5) Additional diagnosis of MGUS (my light chains are high). Neuro says this is unrelated.

CRPS was originally mentioned by my PT. Pain doc said it was a possibility upon questioning. However, both my hematologist and foot and ankle surgeon mentioned CRSP. In fact, the latter wrote in his note that he is "very concerned" there are signs of CRPS. He told me that, because of this, surgery would be a last resort. I do meet criteria in all 4 arenas.

I did a bit of research between clients today and saw that there is some early research suggesting that CFS may be connected with small fiber neuropathy. I found that interesting.

More than anything, I just want to know what I am dealing with enough to set up a treatment regimen. Reading the updated info on CFS actually brought me a little peace. For years I have been frustrated that if I overdo a workout or stress I pay for it for days. There is no endorphin rush - only nausea and shakiness that lasts for hours. I have always felt like this made me a wimp. Turns out, it may be hangover from the CFS. The one physical activity I have consistently enjoyed is dance - probably because of the go and stop nature of the social activity. This latest set of symptoms has interfered with that and I miss it.

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