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 09-09-2012, 07:02 PM #1
Indea88 Indea88 is offline
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Default Sick and Tired!!

Iv'e had RSD/CRPS/TOS/Brachial, Cervical Plexopathy x 17 years. My right leg and arms, hands are now breaking out in sores, look like cigarette burns. They take a long time to heal, and scar. I'm to the point that I don't want to go out in public, people look and think I'm either an addict or have something contagious, or have lepercy! I have severe pain in the areas and sometimes it shows up on my upper chest near my collarbone. For me, this by far is the worst part of this, just feeling discouraged and tired... I've been offered Ketamine, won't do it. Has anyone had relief from any type of cream? Going back to PT for my quarterly tuneup. Now this invisable disease is now visable and affecting my self concept!!
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Old 09-09-2012, 08:15 PM #2
Sandy Shores Sandy Shores is offline
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Even though my insurance won't cover it, I've found a lot of relief from a Ketamine cream my doctor prescribes. It costs $178 for a month's supply,but the pharmacy is very accommodating and will send smaller (cheaper) quantities upon request. They are located in Alabama, called Total Pain Solutions (TPS). It might be hard to believe a cream could be effective, but it really calms my nerve pain when even Lyrica and pain meds don't and it seems to be helping the dry skin in the areas where my nerves are most damaged. I'm not saying it will work for everyone...but it has been a blessing for me. My best wishes to you in your stuggle to cope with this disease.
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Old 09-13-2012, 08:16 PM #3
Sandy Shores Sandy Shores is offline
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Quote:
Originally Posted by Sandy Shores View Post
Even though my insurance won't cover it, I've found a lot of relief from a Ketamine cream my doctor prescribes. It costs $178 for a month's supply,but the pharmacy is very accommodating and will send smaller (cheaper) quantities upon request. They are located in Alabama, called Total Pain Solutions (TPS). It might be hard to believe a cream could be effective, but it really calms my nerve pain when even Lyrica and pain meds don't and it seems to be helping the dry skin in the areas where my nerves are most damaged. I'm not saying it will work for everyone...but it has been a blessing for me. My best wishes to you in your stuggle to cope with this disease.

Here is their website and phone number : 8776084995 www.totalpainrx.com

I encourage you to try it if approved by your doctor. Best wishes....
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Old 09-11-2012, 04:22 AM #4
daniella daniella is offline
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Im sorry though can relate. Have you or are you on any other meds or treatment? I have not tried the cream or infusions though have looked into it just waiting I guess with concerns. Do you notice the sores more in a flare up of pain or in other such as weather or being more active? I get sores on my feet which seem to come more when I swell and with humid/heat. Hope you feel better
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Old 09-18-2012, 01:40 AM #5
PhyllisJ PhyllisJ is offline
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Quote:
Originally Posted by Indea88 View Post
Iv'e had RSD/CRPS/TOS/Brachial, Cervical Plexopathy x 17 years. My right leg and arms, hands are now breaking out in sores, look like cigarette burns. They take a long time to heal, and scar. I'm to the point that I don't want to go out in public, people look and think I'm either an addict or have something contagious, or have lepercy! I have severe pain in the areas and sometimes it shows up on my upper chest near my collarbone. For me, this by far is the worst part of this, just feeling discouraged and tired... I've been offered Ketamine, won't do it. Has anyone had relief from any type of cream? Going back to PT for my quarterly tuneup. Now this invisable disease is now visable and affecting my self concept!!
Ok I know I should know this as long as I've had RSD, but when you talk about sores and scars, are those part of your RSD or one of the other things you mentioned? The reason I ask is because I had a bunch of sores show up on my legs and arms a few months ago, then the burn, stiffness, and weakness hit those areas with a sudden rapid spread. Now sores will pop up all the time. Oh, on my face, too. I was so upset because I thought I had started "skin picking." But when I saw the backs of my legs in the mirror, there's no way I could have picked all those places and made those scars...I can't even reach half those spots. I mean, I know I would get random sores occasionally on my hand or wrist where the RSD started, but I guess I forgot that you could get sores with RSD.
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