HI CINDI, That describes pretty much me during a flare. I may get a couple lesions-which last year got infected, takes a long time to heal and hurt -I can't even describe the pain of cleaning them. Last year I said if I get another one I'll go to the hospital. Do you have full body or generalized? I was diagnosed that 6 years ago. I've had this 15 years. I also have the intense heat from the inside out ,lots of sweating. I can't even think about a heating pad during the pelvic heat which is really everywhere. I'm going to address this next visit to my neuro and gyn and internist.
Are you on any anti-anxiety meds? I take Lorazepam 4 1mg a day. they help a lot. You know hot tubs are not good for us. too hot. How long have you had this? How did it get started etc?
I used to have the jolts,jerks, electric shocks go thru the body thru my brain. Would scare me to death. During sleep my head would jump right off the pillow. He put me on 3200 mg of neurotin. I hated it but they stopped. If you are on that watch your weight gain. I did change to Lyrica 400 mg. it seem to work better with the pain. I slowly went off and don't have the jerks any more.
Do you have a foot tub with jets? that with warm water and epson salts helps the bones! So does the Warm Waxing of the hands and feet. you put the plastic sacks over the hand and feet and then in the soft towel gloves and when it cools it peels right off. That helps the bones too. You can get both at Wallmart or Discount cosmetic stores.
I forgot to look where you live. I'm in Arizona, so the winters are nice, but the summers are terrible, especially since I went internal pelvic region. That's why they changed the name from RSD to CRPS. The word Regional applys to the burning pelvic region.
Well, I hope you are knee deep in snow. My son in low left this morning for Chicago for his 4 day shift of flying in the north northeast or Dallas. He had a lot of flights he couldn't do last week. Really cold in Chicago.
Take care, your AZ buddy, loretta with soft hugs