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)


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Old 03-04-2015, 09:05 PM #1
Darcyreid Darcyreid is offline
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Default Cashmere socks from Garnet Hill

The only socks I can wear are the cashmere socks from Garnet Hill. Pricey, but I buy a few pair each year during their winter sale. They are the only sock that aren't tight and they are so soft, they are comforting.
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Old 08-08-2015, 11:34 AM #2
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Quote:
Originally Posted by Always_Believe View Post
Confession: I didn't read all of the posts on this thread (I did read most of them tho)

Being newly diagnosed and trying to absorb every bit of information I can find, I LOVE this!

For me: Aloe infused socks are THE BEST! Of course, I only wear one on my left foot. Side note: being in a brace fro my knee fracture, my left foot felt 'cold', so I would have my daughter put a sock on it. Then I was diagnosed with peroneal nerve palsy. I knew this had to be a factor in the 'col' feeling but I still thought wearing the sock was psychosomatic. Until I bought an infrared thermometer. I think that was what led me to the possibility this was CRPS. I'm getting used to the odd looks when I walk around in one sock...

High thread count sheets are the best! Combined with soft pajamas...Heaven!

I haven't tried the epsom salts yet but I plan to.

I am interested in what everyone does for muscle spams...and muscle cramping. Anything???
I have severe muscle spasms and after watching an incredibly informative video (that I will find the link to) this Dr. has been researching and treating RSD for I think he said 25-30 years. He said to be careful with muscle relaxers because over time they can deteriorate your muscles, but one medicine he mentioned and approves that has worked great for me and with very little side effects is Tizanidine. My Dr. had no problem giving this medicine a try. It works for me. Hope this helps
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DejaVu (11-09-2015)
Old 04-30-2015, 08:43 PM #3
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Default Comfy feet

Hello Everyone! Before ever being told I have CRPS, I always obsessed over my feet. Being a mid-distance runner, this is not uncommon. I never thought much of my sock obsession or collection. In fact, one of my family and friends' favorite gifts from me to them is socks. But not just any socks. They are called " World's Softest Socks", and I think they are! They contain no cotton and wash well, as long a I add a healthy dose of fabric softener in there. They can be found at the Hanes,Bali,Playtex outlets or online and they come in all colors and even size 13 for men. To boot, they run large. Everyone I have ever given them to has asked for more. They have helped me enormously for running, and I am thinking that it is because of this condition that I have obsessed over them for years.
I also have use spence full-length arch support for added cushioning on the soles, but now found Softsoles that are even softer, without compromising the sturdier cushioning for weight-bearing. They have them at Famous Footwear.
I put these insoles into all my shoes I can fit into, now a dwindling subset of my entire collection. But wearing open-back clog style shoes helps. I can slip my shoes off discretely under tables when out -when I can manage to get out for an hour or two with friends. I also use Bean's toe warmers. They keep my frozen toes cozy and I put them on top of my socks on the top of my toes so it doesn't hurt to walk on them. Also, heated blankets! There is always one on my bed, and I supply them to my overnight guests in the guest room - they love it! There is also one downstairs in the living room so on my bad days, I can still sit in the middle of activity of my home (pets) and keep warm and cozy.
For slippers, I always buy them extra large, then add the Softsoles inside them. It really helps make home comfy when going barefoot is not an option.
Finally, Hubby and I have a "no shoe" policy in our home. Guests know to kick off their shoes at the door. Nobody even suspects that I cannot walk without slippers. They all just think we're nuts about cleanliness! : )
I hope these items help someone as I have seen suggestions here that I plan to try. Thank you!
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DejaVu (11-09-2015), stillsmiling (08-08-2015), zinnia (11-27-2015)
Old 05-03-2015, 06:52 PM #4
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I have CRPS in my left arm/hand. The wind, even just that light breeze from walking is painful. I would not be able to survive without my "arm warmer". Sure, it's painful putting it on & taking it off, but I only do that to shower. The pair (but I only wear one) was only $11 on amazon. I even got pink . I started out with a soft sock & cut off the toes. It keeps my arm warm & saves me from the breeze, plus I can now wear clothes because the arm warmer didn't move around like clothes do (which also caused pain).

Other things I can't live without: a one touch can opener $15ish (another great amazon find), my one touch jar opener $10(again amazon). I HATE relying on someone else when I don't have to. Oh & ooohhh, I can't remember exactly what it's called, but it's like a warming throw. It's small, but bigger than a heating pad, yet really soft & pliable like a blanket. I think this one was cost to $50, but worth every penny. Covers my entire arm & hand. LOVE it. I have to say it, but also amazon..... Guess I don't get out much, lol. The good thing is that I use amazon smile & go back & forth between two crps charities.

There's also this putty stuff you can get at a medical supply store that sits on the counter & you put the bottom of your medicine bottle in it & it holds it so you can get the lid off with just one hand. It was only like $5, I think it cost more for shipping, but it works so well & I really do hate having to make my family have to help, or wait for hubby to get home just to take my meds. I'm just not able to do it with my crps hand.

This are the things I just absolutely don't want to live without. Great question, by the way!

I also have a device that holds my hair dryer, but just don't really every have the energy to do my hair any more. But if I needed to, I could all by myself
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Old 08-14-2015, 01:33 AM #5
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Default Survival Packs YAY!!!


My name is Mandy I have has RSD and CRPS2 since 2012
WARMTH is the most comforting "temperture wise"
this being said 1st helps oodles especialy when on the road and with big time hypersensitivity/allodynia

So i always carry a plushy velvetly throw blanket.
Almost as rule I recommend to get prepaired to invest in any and as much Memory foam items as possible.. Pillows/TemperPedic beds/ slipers/shoes and so forth.
(to cover my affected left foot/schin) or to tuck underneath my knee to ease the vibrations if i cant carry a memory foam pillow

Always layer up! even in the summertime.. believe me weather changes even a breeze can cause pain or discomfort and nothing is worth hurting badly over not even looking purdy in a skirt.. or wearing some off the shoulder number haha so extra pair of loose sweats and a sweater help

Ace wrap sometime temp wrapping for a short moment help " bring comfort" especially if you need to use the limb for a **small amount of time**. because restriction can pain and get annoying but ultimatly u dont want to cut circulation here...

Water!!! always carry drinking water in the car.. Dehydration and fatigue can also lead up to flair ups and exasserbation and overexhurtion.. ** sorry I have bad spelling and grammar sometimes **

Keep a amethyst nearby or in your pocket. Its a healing stone and it carrys alot of not only healing properties but its cool to the touch and sometimes that constantly cool stone helps with pain and the Amazing color of the natural color luster is soothing..

surround yourself with positive people and nature.. ESPECIALLY IN A CAR RIDE. makes bumps and discomforts along the way easier to cope with..

so far as Epsom salts are a joke!!to me at least because they never work....

The Natural and organic approach has been doing a world of a differance for me.. Diet wise and exfoliating.. (my foot swelling went down significantly and the bright red tinge eased up as well) I ain't trying to preach to diet or become a hippy

thats all i can think of for now but if more comes to mind i will add to the survival kit

stay strong!
Mandy~
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Old 07-05-2016, 09:12 AM #6
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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 04-13-2019, 04:27 AM #7
Karel1957 Karel1957 is offline
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Smile Thanks

Thank you so much. Will look into it.
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