crps, sleep, autonomic dysfunction, heat intolerance

I have a few questions to anyone with autonomic dysfunction and or chronic pain. My Dx has recently changed from small fiber neuropathy to crps. I've been on some form of opiates as well as neurontin or lyrica, ultram,and ambien for over three years. I don't leave my house much or drive far anymore. I have an EXTREME sensitivity to heat. When I sleep at night, I wake up every few hrs in tears. I need to wake my wife up, begging for help because having my back rest on the mattress over heats it, which sets the rest of my system off. Sometimes I'll be soaking wet from sweat, head to toe if I don't wake up in time. I can only sleep on my sides or back, and can't stay on my sides for very long because my joints start to hurt or burn from resting on the mattress. I can't sleep on my stomach. I sleep best and usually end up on my back. I have noticed that if I sleep on an air mattress, the air underneath dissipates the heat from my back pretty well. I don't want to sleep apart from my wife, and I can't ask her to sleep on an air mattress with me all the time. We've thought about a water bed but I'm afraid the heat will wrap all around my body from sinking into the bed a little.

1. Any suggestions on a mattress that doesn't trap heat?

2. Any suggestions on how to keep what ever side is on the mattress cool?

3. Anyone with crps and heat intolerance become more sensitive to heat while taking opiate pain meds?

Thanks, ant.

They make something called a "chillow" which keeps your pillow cool. I'm not sure if they make a mattress version, but it might be something to look into. Also, waterbeds have thermostats- I knew someone who couldn't sleep while visiting someone who had a waterbed in the guest room because the bed was so cold- he didn't realize that he could adjust the thermostat to make it as cool or warm as he wanted. Not sure if your wife would like sleeping on an ice cube, but that might be worth checking out, as well.

I just did a Google search for cooling blanket and came up with hits for products for special pillows and pillow cases, sheets, mattress pads, and blankets/comforters.

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)

I also have extreme heat intolerance, lyme, POTS, autoimmune disorders. It certainly prevents me from having anything close to a full life. I take coolings vest whenever I go to a location other than my home (in state- cant even stay at hotels). I read something a while back, and am trying to find more info. Bupivicaine is used for women with hot flashes; it affects the part of the brain that regulates heat. Has anyone with heat intolerance tried this. I am assuming that a gynecologist would be the doctor who would administer...you know what they say about assuming :). Has anyone tried bupivicaine, or heard about it for heat intolerance?