What happens to you on a bad day?

Symptoms and Treatments
1

Browsing the site I see it is common to disappear for days ,or longer due to having " bad days" This made me consider what this means to different people and wonder if you might share ,with the view of finding wether we have any commonality or are quite different. Not wanting to dwell on the negative , but am feeling a bit confused about some of my symptoms??..

I can be fine ,restricted by temperature and standing times of course ,but still what I think of as classic EM .I am mainly aware of feet , right foot in particular with bouts of burn and leg ache. With meds I can ignore and mainly get on with things then out of the blue…misery
I am so fatigued and everything hurts ,in particular my joints ache. My skin feels like it has a layer of acid under it that pools in my hands and feet. Strangely ,at these times all my joints feel stiff and sore - this is despite the fact all arthritis tests are negative. Seems odd, as my otherwise " classic EM " feels like all over.
At this stage I have had every test known to medicine and they are fine,so I suspect that maybe classic EM does not exist.
Usually I rest , bathe ,medicate ,arthritis cream my way through and low and behold off I tootle back in my " normal " EM state.

Sometimes I know I am tired or otherwise ill , but sometimes there seems no explanation. Made me wonder if we are all referring to the same ?
Hope some of you might share what happens,or if you are in fact steady…Tizzy

2

I am very up and down and although heat plays a part I often don’t know what causes bad days. I call it fatigue, worn out by constant flaring, made worse by lack of sleep, often less than four hours a night and drug induced so poor quality sleep. But I don’t just feel weary, I feel as of o have a fever but my temperature is not raised. My joints ache and I have a horrible feeling in my abdomen, a sort of tremble which feels as if my torso is not going to hold me up. I so would love to go to bed but lying down is out of the question without benzodiazepine to stop me jerking and I don’t want to take it except at night. If I sit I immediately flare and the only way to stop a flare is walking about on a cold surface and I feel I could drop at any moment. It doesn’t usually last more than a few days at a time but is very unsettling and makes me reluctant to plan ahead. This Summer I had to postpone several hospital appointments because I didn’t feel able to make the journey.
I hope you enjoyed that trip home Tizzy.
Nel