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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

RSD "lifesavers"

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Old 11-05-2015, 04:49 AM   #211
BioBased
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Default Infared mat

This is the large, infared mat my sister brought me to use when my lower back was in agony after a colonoscopy/endoscopy. I wish I had had it for my hip and foot. A regular heating pad is comforting, but this mat seems to heal.

http://www.amazon.com/Large-Infrared...SC7Q9M0C3Z9H5A

FYI the mat comes in smaller sizes. Also there is a German infared device that might be better for people who have facial CRPS, many reviews mention its efficacy treating a number of ailments.
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Old 11-18-2015, 05:44 PM   #212
JV1990
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Long rides require 3 pillows........2 go under my feet as the "vibrations" from the highway makes the pain skyrocket.
Cotton, soft.....pants shirts etc
My daughter bought me yoga pants...... 1 soft & great......the other smooth and stretchy but feel like I'm being strangled.
PJs.....soft, soft (Kirkland has wonderful ones)
Nothing heavyweight! We moved to FL to get away from NY cold.
Christmas in NY requires a lot of sweats.

We have a foam mattress (Prana Sleep) but when staying at my daughters, she has a foam mattress pad....works well! and is definitely a lot cheaper!
Gel ice packs.the flexible pads. I don't do well with very cold or very hot

Love this idea of sharing!
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Old 12-27-2015, 10:40 PM   #213
bluekrikit
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Quote:
Originally Posted by stressedout View Post
Thanks...I never thought of using the Tens Out in public! I often get frustrated and avoid places because I am afraid I am going to get bumped or for example when I go food shopping alone. I can't lift alot because of my arm but I get looks like I am just lazy. I even had a gil ask me "why not"? when I told her I couldn't lift a case of water. She said "you look fine". Grrrrrrr.
Oh yes...my daughter gets that attitude too...and from doctor office staff and pharmacists...these people have no clue. More awareness needs to be made for this horrible disease!! Bless you!
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Old 07-05-2016, 09:12 AM   #214
JanLynn
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I have found some relief with a lumbar support heated massaging car seat, I am unsure of the name brand but it hurts to stay sitting for longer than a few minutes but this helps somewhat. I also use the epsom salts, hot baths, I used to use tiger balm and horse linament after baths which used to work but when the pain increases I find I have intolerances/allergies (depends on who you talk to, doctors I mean). The linaments burn and cause me to be distracted from the pain for a little while...it's a small window of a different feeling which gives me a slight break. I use heating pads as well and stagger what I do....i also have meditation cds which promote mindfulness. Qi Gong has given me the most help however, it is modified but it does help.
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Old 07-21-2016, 11:30 AM   #215
Karel1957
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Default Ice is my only little relief for rsd

For 3 years after what they thought was shingles, then post herpetic neuralgia, then lupis,now rsd on my right and left buttocks. I cannot sit , lie down. Im on fentanyl and morphine for the pain. The redness is so severe. If i dont sit on a ice bag constantly, i would be in the emergency room. It has been my only way that i am able to function. The allodynia is so severe , i wear nightgowns most of the time, pants ,shorts, underwear, are not for me. If i go out i cant wait to get back home, because the minute i sit the skin literally pulsates. I have been to 15 experts who find my case so unusual. Im allergic to lyrica,and all other drugs like neurontin , keppra, ketamine, etc. I get montly ivs of lidocaine with vitamin c infusion. Which at times do give me at least a day or so of relief. I also have a severe so called rash that comes out periodically over the past three years, that resemble herpes, shingles, yet biopsies say lupus, and lupus specialist say it is just an over interpretation of the report from the radiolist since my lesions secrete mucin and lupus lesions secrete no mucin . Im waitng for further blood workup, but so far i have a 3 experts that nailed it down to crps stage 2 both extremeties. Now i have developed my right let swelling up and down with spasms and burning as well. This all happened after sciatica. And they say epidurals due to steroids, steroids make me worse and i develope such severe edema. Has anyone had such a case. I know for me, ice is the only answer, if my skin is damaged from it, it was damaged from the extreme heat that pulsates thruough my buttocks. Has anyone had a theragram scan which scan the heat sensitivity for rds. Its not a definitive test, but just supports the diagnosis.
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Old 07-22-2016, 06:35 PM   #216
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Quote:
Originally Posted by Karel1957 View Post
For 3 years after what they thought was shingles, then post herpetic neuralgia, then lupis,now rsd on my right and left buttocks. I cannot sit , lie down. Im on fentanyl and morphine for the pain. The redness is so severe. If i dont sit on a ice bag constantly, i would be in the emergency room. It has been my only way that i am able to function. The allodynia is so severe , i wear nightgowns most of the time, pants ,shorts, underwear, are not for me. If i go out i cant wait to get back home, because the minute i sit the skin literally pulsates. I have been to 15 experts who find my case so unusual. Im allergic to lyrica,and all other drugs like neurontin , keppra, ketamine, etc. I get montly ivs of lidocaine with vitamin c infusion. Which at times do give me at least a day or so of relief. I also have a severe so called rash that comes out periodically over the past three years, that resemble herpes, shingles, yet biopsies say lupus, and lupus specialist say it is just an over interpretation of the report from the radiolist since my lesions secrete mucin and lupus lesions secrete no mucin . Im waitng for further blood workup, but so far i have a 3 experts that nailed it down to crps stage 2 both extremeties. Now i have developed my right let swelling up and down with spasms and burning as well. This all happened after sciatica. And they say epidurals due to steroids, steroids make me worse and i develope such severe edema. Has anyone had such a case. I know for me, ice is the only answer, if my skin is damaged from it, it was damaged from the extreme heat that pulsates thruough my buttocks. Has anyone had a theragram scan which scan the heat sensitivity for rds. Its not a definitive test, but just supports the diagnosis.
I wish you could see or contact one of the RSD specialists, because this is the best expert for your complicated case.

Regarding the ice: it is contraindicated for RSD. It seems to offer relief, but it in fact makes it worse. One of the reasons people don't think Paula Abdul has RSD is because she claimed ice helped her. I know every one is different and there is no one size fits all treatment for RSD, but in the case of ice it is a big what not to do in the RSD community.

My RSD was diagnosed via X-ray, which showed I have patchy, dense osteoporosis in my right foot and ankle, a marker of RSD.

I scanned my foot myself with a 25$ Black and Decker tool used to locate drafts in the home, it showed a huge difference in the temperature between my right and left foot.
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Old 04-12-2019, 03:34 PM   #217
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Default Just a thought

Quote:
Originally Posted by Karel1957 View Post
For 3 years after what they thought was shingles, then post herpetic neuralgia, then lupis,now rsd on my right and left buttocks. I cannot sit , lie down. Im on fentanyl and morphine for the pain. The redness is so severe. If i dont sit on a ice bag constantly, i would be in the emergency room. It has been my only way that i am able to function. The allodynia is so severe , i wear nightgowns most of the time, pants ,shorts, underwear, are not for me. If i go out i cant wait to get back home, because the minute i sit the skin literally pulsates. I have been to 15 experts who find my case so unusual. Im allergic to lyrica,and all other drugs like neurontin , keppra, ketamine, etc. I get montly ivs of lidocaine with vitamin c infusion. Which at times do give me at least a day or so of relief. I also have a severe so called rash that comes out periodically over the past three years, that resemble herpes, shingles, yet biopsies say lupus, and lupus specialist say it is just an over interpretation of the report from the radiolist since my lesions secrete mucin and lupus lesions secrete no mucin . Im waitng for further blood workup, but so far i have a 3 experts that nailed it down to crps stage 2 both extremeties. Now i have developed my right let swelling up and down with spasms and burning as well. This all happened after sciatica. And they say epidurals due to steroids, steroids make me worse and i develope such severe edema. Has anyone had such a case. I know for me, ice is the only answer, if my skin is damaged from it, it was damaged from the extreme heat that pulsates thruough my buttocks. Has anyone had a theragram scan which scan the heat sensitivity for rds. Its not a definitive test, but just supports the diagnosis.
I hate when people do this to me, but I can't help myself. I have a colleague who suffered like this for years and years until she was diagnosed with dermatitis herpetiformis (gluten sensitive dermatopathy). She is so highly allergic to gluten that it causes horrific blisters and pain for months, even with the smallest consumption. She has no GI symptoms. It's been many years since this thread was posted, so IDK if it will find you, but wanted to share just in case.

non-painful hugs
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Old 04-13-2019, 04:27 AM   #218
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Thank you so much. Will look into it.
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Old 04-16-2019, 05:52 PM   #219
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Im really tired tonight and can't do much on this, but I wanted to mention that I LOVE, LOVE, LOVE my tshirts that I buy at the most unusual place. I have a tummy...not huge, but I don't like tshirts touching me too much...a little loose in the belly.
I go to the maternity store and buy their tshirts, because the arms and chest area fits and I get extra room in the belly area. I know, this is crazy, but they fit me so well....I just had to mention them.

I live by sketchers shoes (when buying, only pick those with the super thick edged bottoms, as the thinner bottom shoes don't give you the cushion for those painful feet.

I use lidocaine patches.....they dont resolve anything, but they do help some days when extra is needed in spots.

I live by my heating pad....it matters....as do heated seats in the car.

I used to have a round pillow that was super soft and I wedged it wherever the wedge would take the burn away.

Gabapentin for allodynia...without it I would probably use curse words.....

warm to hotish baths always loosen me up some (I have fibro, too). Some days I take more than 3.

I listen to books on audible (wrote this elsewhere on the site today, too). I get really wrapped up in the books I listen to, and what a great distraction for me this is. No, my pain doesn't go away, but my focus can be redirected which for me is golden, both from the mental stuff as well as the physical.
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Old 04-23-2019, 04:37 PM   #220
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I discovered for me that direct heat is too much on my CRPS limbs, i found it aggravates my rashes. I gave up Epsom salts baths. I use magnesium oil instead. I line my bed with heating pads when I cannot get warm & snuggle next to them, but I avoid having them touch my CRPS limbs.

When the fire is insanely bad I line my bed with dollar store ice packs (in zip bags-the packs can leak) wrapped in tea towels. I keep the covers off my legs with a stool & slide in to my makeshift refrigerator without having cold packs directly on my limbs. It isn’t as fast relief, but it works well. I keep six of these big packs flat in my freezer-they last for hours.
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