Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-28-2013, 11:41 PM #10
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Djhasty Djhasty is offline
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Join Date: Nov 2012
Location: Omaha Nebraska
Posts: 142
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Djhasty Djhasty is offline
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Join Date: Nov 2012
Location: Omaha Nebraska
Posts: 142
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Quote:
Originally Posted by aascvt View Post
Worst of all and this ruins my nights is HEAT. I know that not all of us CRPS patients are alike and some of us have sensitivity to heat & cold. For me, it is heat.. and I am greatly helped my icing my knees.. JUST my knees. When I shower.. my legs turn into an interesting water painting.. flaming red at the knees, then splotches of red, purple streaks, and very purple toes. When I’m cooking.. standing at the oven brings on the causalgia and suddenly I’m on fire. I can’t put heat on in the car on my feet, no matter how frozen, because it will ruin me for hours – potentially the rest of the day. Starting in the afternoon, as the pain worsens, I ice whenever I have to. At night.. to get to sleep.. I literally have to ice both knees to the point of being numb.. then hope to get to sleep before they start burning again (5 minute window).
aascvt:
Regarding heat, me too. So much so that I wear sandals in the winter here in Omaha. No socks! Not only do socks warm things up, they also rub me the wrong way. I'd love to just go bear-foot and leave it at that. Heat just kicks off the redness, inflammation, and burning pain. I use ice too when I am desperate, though I have read warnings against it here on this forum. Doc has me trying Ketamine-Gabapentin-Lidocaine-blah-blah-etc specially compounded lotion by Sheffield Pharmacy in Alabama. It does help, though not completely. After using it coupled with my pain meds, I find I do drift off to sleep much easier. So it must help to ease the pain enough I can get to sleep. When I wake, I generally feel better.

I have an 15.9 year old dachshund named Frank Furter. He is 11 pounds. He tries to help me out as much as possible, but other than providing me comfort he is not much of an assist dog. He is just too small.

I am new to this forum too. I tend to read mostly. I see my Doctor in early February. I plan to bring a list of questions generated after reading other forum members' posts. I would have liked to have landed here sooner.

Hope you also find helpful info that you can put to use too.

BTW: I am Type II Stage 3. My Doctor doesn't mislead me about a cure. My medical care is about pain management now. Those things I used to love to do, well, they are really great memories. I use a wheelchair if I leave the house. On really bad days, I use it in the house, if I can get out of bed.

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