Quote:
Originally Posted by canagirl
Another thing, once I have been lying or sitting still for a while a lot of my sensations are decreasing and being replaced with a constant (never waxing or waning) burn. What does this mean? I Think it means there just isn't any normal fibers left. I realized last night that even though I say I have bidywide burning, I did have couple areas that weren't burning until this week. My lower front abdomen and my upper back, scalp and neck were spared of burning, now I litetally have all over burning. My gums and tongue had gone thru a burning stage before but that actually calmed a bit a few months ago, but it's now back with a vengeance.
Sorry guys, I'm in panic mode again right now due to this spreas over the last week or so. ( more panic than my usual panic)
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I know how you feel. I have sensory motor. I hate knowing that there are so many pulses running through my body including 4 or so in my head without knowing it from reading it in a book. I don't know why they are so pronounced but after 6 years of feeling it on and off I don't feel threatened by it. It still is unsettling and I don't like it but it doesn't worry me the way it did the first months. I have had the full body burn too. It's very scary. I don't know what brings it on or even takes it away with any certainty. But I do know for sure that it doesn't have to be permanent. I have gone for periods of 2 years without feeling full body burn and the all over constant pulsating that is worse laying down. I have had every test imaginable from the best doctors in the best hospitals. I check out fine for vasculitis and whatever else is checked for. There have been vascular changes, but not any life threatening.
I have conditioned myself not to give it more importance than it's worth. I try to find one spot , even if it was only as big as a pencil point, on my body that feels normal and focus on that. I would look at my body and see that it doesn't have frostbite, while focusing on the one spot that feels normal. I did this instead of thinking "I can't do this", which was every other thought. Within 2 weeks, I could stop the burning. It works for stabbing, crushing pains too. I'm guessing this is similar to biofeedback.