Help managing allodynia - I need ideas / support
 

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 :cool:) 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 :hissyfit: I KNOW I'm not alone. What do you do?

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.

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.

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.

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. :rolleyes: 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, :hug:

Fun with science
 

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 :D

Meanwhile though, I will look into it!

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

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!!!

drugs, drugs, drugs :)
 

Thanks all for responding! I feel the love :grouphug: 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).

Bad heat, bad, bad heat
 

Gigi, What a great doctor you have! For me, it's mostly heat pain that bothers me. My underarms/arms don't sweat at all but the backs of my hands can start dripping! Guess it's gotta go somewhere :)

Can you share the research you referenced above re: minocycline. It sounds interesting. I also read that triptans help migraine sufferers who get allodynia during an attack. I wonder if anyone has studied whether it works on people who don't get migraines but have allodynia.

Lori

Yes, I agree with Becca. was reading an article on fibromyalgia and found info on water therapy in an neutral temperature” therapy pool ...apparently it helps.

Here is the source: Immersed: How I Found a Way (After Decades of Trying) to Help My Allodynia and Nerve Pain - Health Rising

Hope it helps xx

Ketamine Infusions
 

I'm curious to hear if your symptoms remain gone. And I'd love to know what your "atypical" infusion regimen was.

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!

Thanks for the message of hope
 

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 :sunchair: 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

Try ice
 

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

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