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 05-15-2017, 09:31 AM #1
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Default drugs, drugs, drugs :)

Quote:
Originally Posted by CRPSbe View Post
The only thing that helped me with allodynia and the burning / terrible ice (in my case) was Neurontin / Gabapentin, so that's an anti-convulsant to help with nerve pain, because allodynia = nerve pain.

That is the *only* thing that helped me with that.

What medications are you on, if any?
Thanks all for responding! I feel the love and give it back.

Right now the pain doc and I have settled on 3000mg of gabapentin, 600mg of oxcarbazapine (trileptal), 120mg of Cymbalta and 5mg oxycodone PRN which works out to be 2-3/day.

The meds I've tried could be a whole page (I was diagnosed in 1998 but had been suffering for a few years before). At one point I really liked Catapres patches, but my blood pressure is too low to support it these days (I've lost weight as a result of having a hard time cooking and no desire to eat).
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"Thanks for this!" says:
RSD ME (06-11-2017)
Old 04-11-2019, 08:41 AM #2
CRPSinSC CRPSinSC is offline
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Hi Shaggychic! Like another poster, the only thing that got my allodynia to settle at a place (on a regular basis) that I can deal with is Gabapentin. I have it always, but my current dose of Gabapentin keeps it steady on, instead of the ups and downs I've had in the past with it. This is subject to change....but that medication is, for me, the one I will tweak if I develop a tolerance or something and it comes back with all the rage.
Isn't CRPS loads of fun? I woke this am with more than usual intense raging pain ....guess I shouldn't complain....I've had 3 really good days.....and yesterday, I celebrated by doing too much.....lol. Today I pay....got out of my lane!!!
Hope you find a sweet spot with your meds and that terrible allodynia....when it's raging, being in our skin can be almost too much. You WILL find a sweet spot, though....I did, and you will, too. Cheers!
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Old 04-12-2019, 03:27 PM #3
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Cool Thanks for the message of hope

Quote:
Originally Posted by CRPSinSC View Post
Hi Shaggychic! Like another poster, the only thing that got my allodynia to settle at a place (on a regular basis) that I can deal with is Gabapentin. I have it always, but my current dose of Gabapentin keeps it steady on, instead of the ups and downs I've had in the past with it. This is subject to change....but that medication is, for me, the one I will tweak if I develop a tolerance or something and it comes back with all the rage.
Isn't CRPS loads of fun? I woke this am with more than usual intense raging pain ....guess I shouldn't complain....I've had 3 really good days.....and yesterday, I celebrated by doing too much.....lol. Today I pay....got out of my lane!!!
Hope you find a sweet spot with your meds and that terrible allodynia....when it's raging, being in our skin can be almost too much. You WILL find a sweet spot, though....I did, and you will, too. Cheers!
I have been taking Gabapentin for 10 years and it's no longer effective no matter how I tweak the dosage. Lyrica, strangely, didn't work for me back then - but maybe now it will. I've tapered off the Trileptal as it was doing me no good.

In the winter I've found a few extremely thin long sleeve shirts w/ no seams near the wrist that I can wear if I buy them 1 or 2x larger than my size (to prevent compression). I layer it over a tank-top, add a short sleeve shirt and I've found lots of short-sleeved sweaters/jackets. But by noon, I can't tolerate the sleeves and they get pushed up. I still have no solution for summertime and the evil laser-sun other than wearing sun-protective clothing and sweating a lot.

Thanks for keeping this thread going. Some day we'll find a solution to share
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Old 05-03-2024, 05:39 PM #4
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I was just diagnosed with allodynia 6 months ago, I would love to hear some ideas when it comes to clothing especially I get so much pain from fitted clothing and denim
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