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?

I'm so sorry you have been feeling that much allodynia. It's a truly wicked curse.

For me, doing the antithesis of the R.I.C.E. (Rest, Ice, Compression, Elevation) works best. If I let my legs be still too long, wear any kind of compression, or rest my legs up above me even for a little bit, I start to feel more allodynia. I think we all at this point know how evil ice is (in case you don't, it is).

I make sure to work out a few times a week. I think if I don't move enough, fluids or inflammatory chemicals or something build up in my knees. At first it was just practicing learning to walk again. When I was regaining movement I would go into a position until just before it hurt (my CRPS give me a tingle/staticky warning bell) and then back off. At first it was only getting me about 10 degrees on an exercise bike, but now (2 years practice) I'm doing full front splits!

A lot of people/injuries use compression to assist this but I find that makes things worse for me. Kinesiology tape helps like a miracle for this. After seeing the impact, I looked it up and found a blog of another CRSP fighter in the hospital getting hers put on. It assists movement and possibly improves blood flow. Kind of a mystery how it works but it does.

For clothing, I agree with everyone else, comfy fabrics that don't move a lot are the best. For work I have the dress pant yoga pants by BetaBrand. Regular slacks hurt like hell but these are a huge improvement. If I try and wear long skirts that hurts too, so I stick mostly with the dress pant yoga pants.

And back to the rest thing for a second, I cap my drives at 30 minutes whenever possible. If I go over that, being still so long creates that deep throbbing pain.

I hope this helps!!!

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).

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

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