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

i know they say it will make it worse but for me ice. I literally walk around with an icebag. Also iv vitamin c at least 20,000mg every month or every week if possible. Plus take vitamin c 3000mg. To start and every hour. Until the pain subsides. It took about 6 months but i finally get a few days where the burning is about a 2 out of 10. So much more tolerable. The iv vit. C helps more but its expensive. Insurance consider it alternative medicine so wont pay unless your doc bills it as something else. Hey you got to do whatever helps. Best of luck. Doctors best vitamin c 360 in a jar 1000mg. Each is the best one. Also drink lemon with your water a tiny piece. This will prevent the vitamin c from botherin your kidneys as you urinate it right out. But for some reason this vitamin c boost your immune system gradually. My allodynia has gotten so much better.

I am new here. I have had CRPS ever since a bunion surgery 5 years ago. I had to reply because I have never met another person who uses ice besides myself. I also walk around with an icebag in a cooler. I bought something called a "Kitchen Sink" on Amazon which is a camping sink that folds up tiny. When opened I can pour cold water into it with Epsom salts to cool off my foot. My foot also gets very cold, but that is always followed by a hot flare. Allodynia has plagued me as well. Everything that you all have mentioned I have experienced. I noticed that someone else here tried Memantine with Minocyline. I was able to get the Memantine up to 40 mgs, but I just couldn't tolerate it. I have been to Italy for Neridronic Acid. Now I receive IV Lidocaine infusions every 10 days. This has made my allodynia bearable. It has helped the pain so much that I have gone off of most all of the medications that I was taking for my terrible CRPS. I am almost completely off of all pain medication. I would try Ketamine, but it's just too expensive. The lidocaine is covered by my insurance.
This looks like a very helpful website and I'm glad that I'm here. I have some learning to do for a while to work my way around it. Thank you