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Help managing allodynia - I need ideas / support

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Old 05-15-2017, 09:38 AM   #11
ShaggyChic_1201
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Default Bad heat, bad, bad heat

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Originally Posted by gigicnm View Post
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
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
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Old 06-10-2017, 12:57 PM   #12
mary jane
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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
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Old 04-10-2019, 09:22 AM   #13
MarkinKS
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Default Ketamine Infusions

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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,
I'm curious to hear if your symptoms remain gone. And I'd love to know what your "atypical" infusion regimen was.
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Old 04-11-2019, 08:41 AM   #14
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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   #15
ShaggyChic_1201
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Cool Thanks for the message of hope

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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!
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 04-13-2019, 04:35 AM   #16
Karel1957
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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?
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.
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Old Yesterday, 12:56 PM   #17
Jules14
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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
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