Hi Mary - so sorry it’s hit you this hard!
Is this not just a fibro full flare? At least that’s how I experience the core symptoms: Ache all over, extreme tiredness, exhaustion, muddy-headed… plus I have the fever as a feeling, only without temperature.
70 treatments, incl. meds, mostly harmed me, some (mainly physio-type) got the single pains down and cdn’t prevent a very full flare for a month now - bringing me to my wits end, altho I’m still trying to pace, exercise better, improve my sleep hygiene and now doing some psychotherapy.
Unfortunately there is no easy answer, as you probably know yourself having the diagnosis for 16 years. There are only a few meds which are proven to help a bit more than others, but usually a combination is necessary, according to recent research. If you believe meds can help you and your docs aren’t helping find something and you can change them: do so. But as you wrote in your intro-post 7 years ago you got awful side effects from them, so you’d be like me and will probably react that way to all meds. There are none for fibro without side effects. And the main side effects are exactly our core symptoms - no winning there
You can get 10 med, 10 supp & 10 herb & 10 physio suggestions from us here - important’d be to know what exactly you’ve tried. And it definitely doesn’t help that someone here or elsewhere says it has helped them. Bin there, done that, no success. My best therapies (cryotherapy, acupressure, yoga, breath-holding, cold showering) are ones that friends suggested, or I developed myself (twist-stretching), not docs, not anyone on the web…
If you still feel you’re ‘name’ still fits, I’d suggest CBT, praps with trauma therapy, I don’t know if you’ve worked on your car crash trauma? This is the one non-med thing which research has proven somewhat effective, so shd be standard. If one therapist didn’t help try another. I’d suggest they shd be certainly experienced with pain or with trauma. I tried 2 last year, plus one from the pain clinic next to the inpatient rheum./fibro clinic I was in, the latter had a few ideas, but unfitting and 45’ was just too short. Now - of the many counsellors I’ve been to for social phobia and relationship problems - I’ve remembered to go back to one experienced with trauma, which was very supporting…
Hold on - and if you like vent here more and share your experiences!