[ShaggyChic_1201]

I'm about out of my mind and need to vent and hear some suggestions of what you've tried.

Tho I've had RSD for a long time, it had been stable up until about 3 years ago. Medtronic stim helps a bit, but the issue that has me insane is the allodynia. It's so bad on my arms and hands that I feel damned no matter what I try. Despite every desensitization trick, mirror therapy, neurofeedback (aka brain training), lidocaine patches/creams, who knows what else, I cannot stand anything touching my arms from palm to 4 inches above my elbows. And absolutely no pressure, which means my old technique of wearing a sleeve is out out out.

(I'm not done venting yet ) I'm also incredibly heat intolerant. I've tinted the windows in my car and do my best to stay inside when the sun is out, but it's depressing. A single sunbeam hitting my forearm feels like a laser slicing me open.

I work ... I pretend ... but it's so hard to cope. The burning is never-ending I KNOW I'm not alone. What do you do?

[catra121]

I am SO sorry...I know what you are going though but desensitization did help me enough to make things (usually) bearable.

I have found that light weight clothing that applies a constant touch to the skin is easiest. I really suffer with looser flowy things because those occasional brushes and touches of loose clothes send me into overload. If the touch is constant and consistent then at least I can cope with it most of the time. Sometimes of course...no matter what I try...I just can't have ANYTHING touching my skin and that is not conducive to being out in public...lol.

I do find that sometime in those situations...putting in ear buds and listening to my flare up play list (instrumental music) can actually be very helpful. Not sure if it's just a way of refocusing my mind away from the pain...but it helps. Only with the earbuds in though (like literally blocking out every other noise)...it doesn't work when I just play the music on a speaker.

I also have found that when I follow the 4 Fs diet closely...it decreases the inflammation and then my allodynia is usually better as well (not gone...just a little better). The main way I know it's better is because when I cheat...it goes up significantly. Cutting out caffeine has made the biggest difference believe it or not and that was one of the hardest things for me to do.

I hope you are able to find something that works for you because I know how bad this can be.

[Becca71]

The main thing that worked for me was the desensitization over time. Water in particular is supposed to really help. I agree about the constant pressure clothing vs. flowy. Mine is in my foot/leg. If I wear leggings it doesn't bother my lower leg as much as floppy sweats do because the fabric isn't bumping my leg all the time.
The other thing for me has been the trial and error and eventually finding a good combo of meds that work for me to bring all of it down a few notches.

[BioBased]

It took me months and months to get mine down using various towel weights in the shower, because the water pelting down on my legs and feet was like being assailed with daggers. Mine also diminished considerably with LDN, although I am still aware of my foot and ankle all the time, they both seem bigger, achy and electrically crackling since my last flare up. Frankincense oil seems to help.

My podiatrist insisted I buy his very expense sneakers with mesh sections. They are not only too heavy, have too much motion control, but I could not bear the air coming through the mesh, it was horrendous.

I was also taking serrapeptase at the time I was desensitizing my foot and ankle. I think it did contribute to the success I had.

[Littlepaw]

ShaggyChic,

I had partial luck with desensitization but I had to use the softest things imaginable at the beginning. That said, even after many months of working at it I still had residual stinging that just wouldn't go away. For me it was very low dose ketamine infusions that knocked it out. I had a similar reaction as you to sunlight and really couldn't stand for direct sun to hit my leg. Kind of a challenge in Texas. Over time as my system wound down thanks to ketamine I can now tolerate a sun beam without trouble. If you haven't had infusions it might be worth checking into. My protocol is atypical with fewer side effects than the 10 day regimen and it still has been a game changer.

I hope you find relief soon,

[ShaggyChic_1201]

Originally Posted by BioBased

...I was also taking serrapeptase at the time I was desensitizing my foot and ankle. I think it did contribute to the success I had.

Having never heard of the item you mentioned, I looked it up. "Discovered in the early 1970’s, this proteolytic enzyme was isolated from the Serratia species of bacteria located in the intestines of silkworms."

ALL I could think of is, who the heck finds that?! I came to the conclusion it was somebody on LSD with a tiny knife

Meanwhile though, I will look into it!

[gigicnm]

I don't have any other suggestions for the allodynia. My CRPS is is the same place and the only thing I have had any luck with is a Tommy Copper compression sleeve. No other brand!

As far as the heat intolerance, I do have a suggestion. I have a very open-minded pain doc. He is willing to think outside of the box and try anything new. He put me on a combo of memantine, minocycline, and metformin. I couldn't tolerate the combo (though it really helped the pain). I found through trial and error that Minocycline 100mg daily (the same low dosage that you would take for acne) has made my heat intolerance 75% better.

I was able to find some research on how monocycline helps CRPS symptoms (not specifically heat intolerance but symptoms in general). I am just so relieved to not have sweat dripping down my hairline all day.

Best wishes,
Gigi

[CRPSbe]

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?

[whiteaa]

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!!!

[ShaggyChic_1201]

Originally Posted by CRPSbe

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).