Post viral diagnosis with chronic pain but not tired!
I've recently been diagnosed with post infection syndrome after severe gastroenteritis that lasted four months. It's been around four months since I first got the infection symptoms. However I'm in desperate need of advice as the doctors have firmly said I do not have m.e. (absolutely no sense of tiredness above normal, no headaches, light sensitivity etc.) and I don't feel I fit the normal post viral symptoms either (no nausea, dizziness, tiredness etc.)
What I do have is a bunch of neurological symptoms, most of which seem to have passed (I hope): burning or tingling in the fingertips and some toes, muscle twitches, pins and needles. The other problems are muscular. I have awful muscle pain in all four limbs. Two rheumatologists have examined me a number of times and have ruled out fibromyalgia. The pain is awful and seems to get worse the more I try and do.
A week ago i finally noticed some improvement. I can stand for a few minutes and walk a little more before the pains in my legs start to become worse, and for a few days I felt a lot better with much less pain and was able to do more. Alas I dipped back after five days and the pain is a bit worse again.
I am desperate to hear from someone who had similar problems as to how they recovered. I am hoping the run of good days finally indicates the start of my recovery but how do I hold on to that? Do I continue to do nothing when I start to feel a little better or does the body have to be pushed to remind it that I would like to be able to do more now?
Really would appreciate your thoughts. I have conflicting advice from my g.p. and rheumatologist on this. Should I just gently increase and ride out the dips afterwards? Thanks so much! P.s. happy stories only please! My rheumatologist is convinced this will burn itself out and the only thing I have is my hope right now so pls. need to hear from those with positive outcomes. Thanks so much in advance! Xxx