Hi, my name is Sherry and I have RSD for 4 years now. I have had 6 surgerys in all including a spinal stimulator placed. I have found that soft things are the best!! My doc has me on Methadone, Roxicodone, and topamax. These drugs do a little to touch the pain, I'm usually at a 7 on the pain scale. You just have to keep changeing things up, because staying on one thing to long will only get your body used to it and then it no longer works. Warm baths are my friend when the pain starts getting really bad. I have been trying to use my arm more often, remember the saying You don't use it, you will lose it!! Even if the pain if there you have to keep going, you do not want the muscles to waist away. I hope some of this has helped you.

Sherry,

Welcome to the forum. I agree that you have to continue to try different medications. Although I have done well on my patchs (10 months) although recently I am having to take more and more breakthrough but I blame the airconditioner and stress.

Feel free to chime in on anything and ask questions. We are all in the same boat.

These are all excellent tips and well worth sharing. I appreciate all the wonderful ideas. I have suffered with full body CRPS for 2 years and it is sometimes a lonely road with few to understand the way the disease affects a person.

Hello you Dear Mom, I can tell that you want to help someone so very much to find comfort. God bless you Mothers, you are all so special.
I am new here, and have 21 years under my belt living with RSD.
You want to be prepared...RSD is a make it up as you go along thing most of the time. We feel different everyday, so better some worse. Weather does play a big role and what you ate the day before. How much activity you had or lack of it the day before..it follows no rules.
Epsom salts not only feels good it is good for you full of Magneisium. On real bad days I soak my feet in wild mint leaves that I find in the woods.

I am to tired tonight to go any more. Please ask anything you want to or need to. I have big ears and shoulders.
God bless you MOM. RSD with LUV, Andrea

Wow lots of interesting tips! Think I need to go thru and read in the morning when I'm more alert and have my handy dandy note book with me to write them down!.

Thought I'd share my little trick I use for for my arm. I have Ulnar Nerve damage, RSD, CPRS, Nueropathy, etc. in my right arm. My arm despises the cold of any sort and lets me know it immediately, when the slightest cool breeze or slight drop in tempature. Basically my arm starts to spasm which then sets of "zingers" which then sets of the pins and needles to spread from my pinkie and ring finger to my whole arm.

So in order to avoid this, I went on a search after watching a football game and saw some players with this thing on their arm(s) and also, remember seeing basketball players wear them too. But the sleeves those athletes wear are made of neoprene, which can be very tight, which for me is not a good thing cause even sweaters and sweatshirts irritate my arm and also those sleeves are very expensive. But I stumbled upon this cool thing called a "tattoo Sleeve" on ebay. Its basically a cotton sleeve, almost like its cut off from a long sleeve shirt except the top that goes up on the bicep has an elastic that can be stretched out ( I had my husband wear the sleeves for me to stretch them out since I have little arms) and the part that goes by your wrist is neatly cuffed. I believe they come in different sizes but not positive, its been years since I ordered them. I cut a whole at the seam for my thumb to go thru so the sleeve covers my hand and part of my fingers. I bought 2 sets of 2 for $7 or $8 ea set which included shipping. That was 5yrs ago. They were white and I kept one white and dyed the others different colors to go with my wardrobe. I also, find it helps me with my anxiety when I do venture out in public especially on warm days when everyone is wearing t-shirts and tank tops, my sleeve stands out! It makes me feel like my arm is wrapped in a secure blankie but unfortunately it doesn't stop unruly kids from running into you or ramming a stroller or a shopping carriage into my arm either.

I am just now needing new ones as these are worn almost everyday and they are machine washable and machine dry-able too! I am currently collecting remanents from material I buy for other sewing projects to try and make my own. not sure how well it will go as I wasn't a good sewer before my injury and am a worse one since, worst case I buy some new ones.

Hope my tip helps someone!

TTFN The Scrapoholic aka Jill

I would ad ice to this but be very careful. You don't want to freeze the skin. I also use only 700 thread count and up. I know they are expensive but they allow me to lay right against the sheets and it helps. heat is my enemy but everyone is different

It is known that ice is the worst thing you can put on an RSD affected area. It is known to cause spread and/or make it worse. So be careful about using ice.

hi there,

I was able to find this thread while searching for specific symptoms I have....I have sat here shocked, reading every post. I have felt like a freak of nature for 2 years, with symptoms that even my mother and fiance cannot help but question.

I cannot believe what I have read; everyone has the same issues I have- this is the most helpful and validating thing I have found since my injury and diagnosis.
thank you for making this "sticky"- i think it helped Google put it high in my search results.

I cannot express how much this thread has helped me. I have never spoken to one person who truly understood, let alone so many.

thank you to everyone.

Hello, Newby today. I have CRPS in my right foot/calf. Second Sciatic Nerve Block/Ultrasound. Going for second treatment tomorrow. Just wanted to say HI and hope that I will find people who can share the same issue's. I'm also interested in learning about other person's issues. Hope to see you here after my block tomorrow.

The best socks are at walmart and they are in the section with foot insoles. Dr. Scholls makes them I believe they are so soft and have aloe vera in them. They are loose but not too loose. They mostly come in girl colors the closest male color I saw was a light blue. Im sure they sell more colors online. Regardless of how they look you wont care they feel amazing!