That is exactly how I felt when I found this thread! Unreal validating!!

Me too! First thread I read when joining. So helpful and validating. Hope to report some successes I'm trying from the thread. Later...

Hmm my survival bag looks like this:

Back of the wheelchair: Bag full of medications, cellphone, wallet, it is basically my purse. I never go out without my wife, she keeps an eye on the bag for me. Oh and my water bottle full of ice water.

Footware: I'm fiddling around with it, I bought some REALLY nice Nike shoes before my foot started hurting for working out, and my feet are like 'nope' to the max. But I have found my Uggs are pretty okay, except when my ankles and feet are swollen, then its mind over matter really. As for socks, the wife has big thick wool socks from being in the military, I was going around in just one sock, but now have upgraded to two. Also those fuzzy socks? Its like heaven.

Blankets: Just none, my feet remain uncovered even at night, as is I can only sleep on my front right now, and even that is painful. I can't sleep on my side or back because of positioning. Still working on it, as Im up for hours at night randomly.

Clothing: As its mostly in my feet/ankles (though I get random spikes up into my calves), I wear things that are nice and comfy and easy to put on. Usually yoga pants, a nice light shirt, with a hoodie. I don't even care how far up my wool socks are. Stare at my fashion faux pas!

Mobility: I have canes, crutches, and a wheelchair. Right now the only solution is my wheelchair. I don't use the foot support on it, because it juts out at an awkward angle and leaves me vulnerable for bonking into things. I have found I can lightly cross my ankles and my feet just dangle. When I get my wheelchair (this is a rental) I'm getting the foot support that don't jut out.

Other: Warm cat cuddles, just not on the feet, don't look at the feet, don't touch the feet. But having snuggles from kitties always cheers me up. My wife when we go out, she fends off the glares and rude people, also helps me up steep hills, we live on an island, an island that is made out of mountains....Hills suck. Video games/distractions, the more it distracts me the better. Tissues, eyes water from pain, tissues are godsend.

Haven't figured out the car, for a while putting my foot on the dash worked, but its now cold out and the sun has gone away, meaning no more comfort (feet are usually ice cold). The vibrations and bumps from the car make me want to scream. Any other type of warmth usually is horrible. Epsom salts SOMETIMES help, other times don't. Maybe its a mind over matter thing? Hope this helps someone =)

Lessa;
We traveled from AZ back to AK last March/April & I found several things that helped to get my pain down that might be of some help to you while in the vehicle. I have a gel pad that I sit on which helps to absorbs shocks made from any bumps; I wrap my feet up in a light fleece blanket to keep the cold off; fleece socks & large crocs/sandals or even warm slippers that don't constrict the swelling helps with dilemma of not wearing anything during the cold season; I use a fuzzy fleece blankets on top of the sheets which not only keeps the coldness away from my body but desensitizes my skin at the same time as well as keeps the weight off caused by heavy blankets; I also use a deep moist heating pad which is a tremendous help too.

I have to say that we hit every single mineral hot springs we came to & I filled empty gallon jugs with the water & another one just for the mud. The healing power of the hot springs is truly amazing & once you've experienced it understand why they are sought after worldwide by those seeking to alleviate their pain even if just a little. I wish we had one close by but the closest one is over 600 miles away!

I hope this helps you & wish you the best.

Gentle hugs

Thank you so much!

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.

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!

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.