Hi,
Did you have a great degree of neueological symptoms or was it just the typical cluster? Poor sleep, pain, PEM, flu like, etc?
Thanks,
Justin
I had severe FM with also all over severe skin sensitivity eg the weight of the sheet on me in bed hurt, I couldnt be hugged as it hurt too much, the normal cluster of viral like symptoms, sore throat, swollen glands, actual fever, hypersominia, severe weakness, severe tiredness, headaches (mostly in temples)..
couldnt stay awake, severe sensitivity to light (blacked out room), sensitivity to sound eg would cause me to go into like seizures, paralysis at times, severe mind fog, shaking on any exertion, severe night sweats -soaking sheets and clothes. I think had low BP all the time eg 80/60 was my normal during that time I think which was the same as it had been before I got sick.
I dont know that that point if I had POTS or dysautonomia back then as I couldnt stand due to ME weakness (which is different to what I get now with POTS).
(I did thou have some weird result on a BP or heart monitor right at the very beginning of my illness before I had this full time when it was just starting and having little bouts at times. I was in the ambulance service and we were doing heart/BP/ECG readings and some really strange result came up which they couldnt figure out why, they tried it twice on me but had the same weird result each time.
I seemed healthy at the time (in a well bout between bad bouts) and we didnt think more about this (it wasnt a result they were used to seeing at all), they ended up due to not being able to make sense of it, put it down to monitor faulting though those before and after me all had it coming up normal. I thought it acting this way just on me was very weird at the time.
I wish I could remember what the ECG monitor was showing up. So maybe I had some abnormal things there in first bad years of my illness which I werent aware?).
I didnt have MCS, food intollerences, allergy issues or IBS back then when I was worst and completely bedbound.. all which I have now. Those things came in second round of this illness for me.
Now I tend to have BP often on higher side but with orthostatic hypotension and orthostatic hypertension, my BP is completely different to what it was before. (I wonder if that means I have actual damage now which I didnt have when I was more severe??? Maybe that could be a predictor of how likely one is to recover??? Over time my autonomic system has worsened so that symptom in my case seems more related to length of time I have been ill rather then severity of my illness)
So I have quite a difference of my symptoms from 1st time round when I ended up recovering with this to second time round though I was far more severe 1st time round.