I did look into those mattress pads, but I get to such extreme pain that if the sheets have the smallest wrinkle in them I'll get an intense burning on my skin where the wrinkle is touching me. We switched to satin sheets because cotton ones bother me too much. My fear it that those cooling/heating coils will be too bothersome.
I do have an 18" fan a few feet away from my side of the bed to keep me cool. Its just that any part of my body that is covered for too long sets my whole system off. Some nights where I can stand having sheets on me, if my arms are uncovered, and the rest of me is covered, I wake up in the morning with the burning in my arms really bad. I can't figure this darn illness out even after 3 1/2 years. I feel so much better when my whole body is at one constant temperature that I can stand. Swimming in warm water is my favorite. I can stand the water pressure on me, and sometimes nothing hurts when I'm floating because of the lack of pressure when I'm standing or laying down.
Also when I eat, I almost always have to lay down and take everything off and cool myself down. Food sets my system off.
I am mentally broken. I feel such guilt when I feel ok to do things, but take that time and just relax to feel somewhat normal, because I know anything I do in that time, I will pay the price for it later. Anything I do, I pay a price for. Life has become one in which I have to conscientiously make a choice where I have to decide whether my next action is worth the hell I'll feel later on. I have two small children that are my life, so it tears me up when I make the decision to just relax a little or a lot longer.
Does anyone ever use the chat rooms in here? I would love to talk to some people who understand what I'm going through.
I will be getting ketamine infusions hopefully by the end of the year. I passed the cardio portion of the tests, now I'm just waiting for my psych evaluation before I can get put on the waiting list for the treatments.
Post Edited (antsawol) : 9/6/2011 9:59:12 AM (GMT-6)