hi ive had rsd now for 3 years, unfortnaly the docs say im in the 5% catagory (5% of people with rsd do not respond to pain meds treatments at all or no wear near as what the rsd of the rsd people respond to them as) now not trying to oh poor me or anything but,, with that knowlage know ive tryed pretty much evrything just liek evry other rsder out there , but ive gone to some extreams i dont think the arvage person with rsd would,,
so heres my list of rsd must haves and things that may help you.
1, Down pillows a great there soft there squisy, also my rsd is in bolth feet legs hips and lower back, so to help make sleeping bareable when i can sleep i went out and got an acutly down mattress padding topper, its basicly like a down comforter for ur bed that u jsut sleep on. 1 WARRNING, evry now and then a down vain will poke threw and oh man when it dose it hurts so be aware.
2, paraffin wax tub, this u can by at most pharmacys walmart bed bath and byond and some medical insurances will evon cover it. its a tubs about 1foot by 5 inches wide, it has a heater coil under neath it (all enclosed) theres speical parraffine wax u by, and u toss it in there, it slowly melts it, once it is melted , when my feet are to the point i think cutting them off would be less painfull (im sure u all know that feeling buy now) i will do fast dipps of a foot at a time in to the wax and let it build up a good thick coat then , i take a plastic shopping bag and rapp my foot up like a very odd home madie xmas gift lol and then rapp it with a thick fluffy towel, now the warm warm heat helps take the edge off, the only down fall is, it is short lived as the heat dissapates fast and u have to peal t he wax off (it never gets hard stays soft and plyable no matter how long u leave it on) and redipp my feet again.
3.Body pillow,.. i have found this to be very usefull as there are a lot of days were just air hurts to tuch my skin, and the presure of sitting on a couch or chair is jsut suicidal, get a body pillow, and then buy a body pillow case that is made out of microfiber (walmart been the only place iv found that sells them) with the micro fiber being so soft im able to tolarte it on my skin evon when air is painfull tuching it, the body pillow provids a soft cusion and is big enough to rest all of rsd affected areas on it and its very plyable.
4, Tenns unit, now for me it helps for a few months then seems to do nothing and then after a few months of non use if i use it again it seems to help some, HOWEVER. i cant handle the sticy pads on my skin, omg pain, so led me to do some creative thinking here. im shareing this personal and some what embarresing infor becuse i belive i cant be the only one who cant tallorate those dammed sticky patches .. Ok, here gose,,, i was telling my friend about the tens helping but the problem with those horrad sticky pads, ofcorse i had to exsplane to her what a tens did, so after exsplaning my friend laughed and said so u like zapping urself with electricity, i laughed and said apprently so. she told me about this electric wond her and her husband use for adult things. yes people i said adult things lol. but it got me thinking.
jsut maybe that would work, so i went online and dodge a barage of adult sites (thank god i have no children, woudl have been fun exsplaning that if one had walked in lol) finaly found a store that sold one. so i bought it and had it sent to me in the mail. a week later the package came adn i tore opend the box, and then sat and staird at it fearfully and in true curiousity. (all i could think of was a cattle prod and cows mooing) waited for my boyfriend to get home and said ok i want to try this on my legs for my rsd he looked at me a lil confused and said, and im supposed to do what.. i told him i needed him to do it too me becuse i was too chicken **** to do it myself lol. after a lot of coaxing and proming him that i wouldnt blame hate or ban him to the couch if it did hurt he finaly agreed. now this is NOT LIKE TENNS unit elect. this is more of a zap. i guess id say closest comparasine a tens unit burst zap. the first time scared me, but i had him do it again, and relized this didnt hurt , ive been using it now for a while. i dont know if theres any dammage if u use it like 10 times in one spot in like 30 secons i dont know, i have yet to bring up the curage and take this adult toy in to my docs, viset and ask him about it yet. when i do i will let u all know.
4. my light cotten.muslin mix skirt. during the summer it can be hot and i will ware shorts , but somoe times that wind or air on my legs is so painfull it will drop me to the ground, and i found sometimes simply putting on a very loose fitting skirt that goes to my ankles, is enough to stop the air from directly hitting my body and is pretty helpfull.
5. my bamboo blanket. this is increably stoft, liek a mix between egypton cotton and silk, this is the only thing i have found yet to date, that no matter how suicidal the pain is this feels good against my skin, that is attached to me permently liek a 3 year old and his blankey. i strongly suggest
all of you go out and by a, bamboo trow blanket, and try it, if it dosnt help u didnt waist ur money on a full sized blanekt, if it dose help u got a blanket thats manageble insize to carry with u evry were.
ok so that is my list of must take with me evry were i go and as well as always have with me in the house, i hope this has helped . i will try to pic out more things that i use in my daily life that have helped a lot and post those as i think of them

I too am a pajama person: Flannel, jersey, super soft modal cottons, warm fuzzy booties & slippers, fleece sweats & lots of soft chenille, cashmere socks. In the hot summer months I am usually still covered because I too cannot stand the air conditioning, fans or winds blowing on my skin. I have found that buying clothes from places like "Athleta", a yoga, active lifestyle catalog is very helpful because they sell the soft yet pliable materials that is bearable on our skin yet are breathable in warm months & moisture-wicking & warm in cool months.
I was also a very active athlete & personal trainer, model & actress before I got hurt. I have a major shoe fetish, most of which I cannot wear now because of swelling and pain. I now but shoes in wide width or a size bigger, too. I do wear my heels whenever I can, but only when I know I will not be walking too far or standing too long, like going to dinner or short errands. I usually pay for it later, but it makes me feel somewhat like my old self again & for a short time it gives me a big boost in spirit to look like a shadow of my former self again. I have gained almost 30 pounds since I was injured over 4 years ago & struggle to find comfortable fashions now. I yearn to buy them (denial & hope that I will wake up someday with no pain & be able to go back to being who I am at heart) but now with no income from not being able to work, still fighting SSI for an appeal, etc. & being honest that I will spend more time looking at them hanging in my beautiful closet while opting to wear my pajamas nearly every day....I don't buy much anymore. I windowshop through my Vogue or InStyle magazines & dream of being that person again instead. I do try to get "dolled up" the best I can just to go to the pharmacy to p/u my meds or the grocery store because it will be short & the feeling of being normal & not stared at or pittied in public for looking like I feel does help keep me going. It is not easy to get dressed up, but it really does help the spirit to do so. A little lip gloss & mascara & a comfy but stylish outfit makes a world of difference for me mentally, even if I do change right back to my pj's the minute I get home.

I to have extemely sensitve feet that never stay warm. I have found that the compression socks made by M-Ped help to increase circulation while decreasing the swelling. Note that they are very tight and that alone can set off the pain but I wear those in the day and then at night I wear socks that are made for people with nerve pain caused by diabeties. This sock has extra cusion on the sole and the top of the sock is loose. I'm all about my socks so I completly understand trying to find the best ones!

I use "smart wools". They keep my foot warmer than others without constriction and wick away the moisture from the sweaty foot. I have CRPS in my lower left extremity

What do you do when you can't stand heat on your CRPS site. I have to keep my foot out of the water when I shower, because the temp of the water causes me severe pain.

Hi chef,
I copied your post and placed it on the main RSD forum - it will get more views & replies there.
http://neurotalk.psychcentral.com/forum21.html

I have found that nothing is as soothing against my skin as silk, so I have nighties and a nightshirt in silk. They breath soooo well, and help with the overheating/chilling I get. I also indulge in silk sheets, although I too would love to hear if anyone has compared the bamboo to the silk sheets. I have a split Cal King adjustable Temprapedic bed (the constant adjusting helps too) but finding silk sheets (or any that aren't the cheap low count cotten blend) has been impossible so far. Any leads are greatly appreciated!!!

For shoes, I LOVE my Berkinstocks. I live in the US, and end up ordering from the UK sometimes, since they have cute styles.

My only remaining inability to address: a comfy bra!!! (I'm a 40G, as in gigantic!!! and have had 2 kids and am in my 40's, so braless isn't a nice look for me!) I've been contemplating the reduction surgery for years now, but since I had a major RSD flair this summer with a simple cortizone shot, I'm having to re-think the reduction idea.

Anyway, great ideas in this thread, even for us "oldies." (I haven't posted in a couple of years, so my count was wiped out I guess.)

I have found everyone's thoughts on pain "tips" here ery helpful. I would love to see this thread keep going. My foot, with the RSD and neuromas, is either hot or cold. At night, in bed, it often gets hot. I then put these cold packs that wrap around the foot around my upper foot or middle...or wherever the pain and heat is worse. Sleeping, for me, is tough. I always put a sock on first, though, otherwise, too cold for foot. When it gets cold, I found that diabetic socks work really well. I am not diabetic but those things are WARM. Thanks for everybody's help here........it is great.

"I stopped using electric heating pads because I had one that caught on fire.
"

Oh my gosh! I didn;t know that was possbile! I had one where the controller got hot, and I did think about it. That is aweful! Where you asleep?

I heard about something like this many, many, years ago, but I don't think it's very common. Any electric appliance can catch on fire, and ones that produce heat (toasters, coffee pots, slow cookers) are especially prone. Manufacturers these days have safeguards built in to most of their products and, of course, the instructions always tell you to regularly inspect for any damage, frayed areas, etc. And NEVER use pins to hold it in place. That is a sure fire way to cause a short circuit.

A much more common problem with heating pads is getting burned because you fall asleep and/or do not have a good sensation of how hot it is getting. The one I bought a short time ago has a timer to shut it off after a pre-determined amount of time. I don't think I will ever use another heating pad without this feature.

Mike