NeuroTalk Support Groups - RSD "lifesavers"

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - RSD "lifesavers" (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/78732-rsd-lifesavers.html)

Gotta luv technology!! Glad you found this program as I always enjoyed hearing from you.

what a great thread... and i hope to contribute more later... but what has absolutely saved my feet are my Old Friends slippers. i haven't worn shoes (on both feet at the same time!) in 9 years... but when i must have something covering these huge, swollen, purple blobs at the end of my legs? my size 10.5 old friends are just the thing. (i ordered several sizes up from my former pre-crps shoe size, plus the slipper/shoes are adjustable)

they are sheepskin covered with suede, open-toed -- i cannot even tolerate socks, though in the first year with crps i must have purchased several dozen different types. i could open a Sock Bank...

this attachment (if i did this right!) shows what the shoes look like:
Attachment 6272

it just occured to me that i would also love to generate a list of things that *need* to be made! what comes to mind right now, for personal reasons, are SLINGS! i have had to be in an arm sling off and on for the last five years or so... and always end up tearing the things off. there have been times -- after a major shoulder surgery like a shoulder replacement -- when i could not tolerate the sling because of crps. the straps are awful, too tight, with too many "edges" -- if you know what i mean! there needs to be a modified, allodynia-aware design.

so if anyone out there is looking to make a better mousetrap, start with slings!

in the end, i always rigged something up from a bathrobe tie, or a soft scarf -- but as easy as those were on me, they were also not exactly what my orthopedic surgeon had in mind...

Quote:

Originally Posted by GalenaFaolan (Post 470447)

I found cotton t-shirts that are big and loose feel best. All of my t-shirts are men's. :) I wear Danskin pants. They're uber soft and comfy! I have a couple of pairs of yoga pants I picked up at walgreens that are the same. With the ones I picked up at walgreen's, you have to remember to follow the wash and dry directions on the label or they will shrink! LOLOL I picked up some men's tube socks, in black which is my fav color, and they're soft and comfy. I wear 2 pair on each foot cause it helps cushion my feet and also helps them stay a little warmer.

Hugs,

Karen

Hi, am a male who have dealt with RSD for 23 years now, since 1988, with the pain in my crotch, left buttock, back of thigh & foot. Having trouble finding anything to wear, especially underwear, where nearly nothing will touch my "privates." Now wear loose cotton boxers, have even tried womens panty hose, compression shorts, all without any relief. Anyone have an idea?

For me it's light cotton pants from Kohls. Sonoma brand...have them in every color...lol. Rolled up so they don't brush / rub my foot. I have RSD in my left thigh down to my toes.

Quote:

Originally Posted by Prof de Rien (Post 765464)

Where are these shoes from? What brand name - they look comfy.

somewhat little more comfortable

i cannot wear regular socks or even the hanes socks for over 7 years i have wore soft fuzzy socks there thick warm and not tight i cant wear nothing tight! i wear sun dresses when i can short ones and alot of pajama pants bigger also and the warm fuzzy ones also hurts to wear levies even if big because of the injection i got on my right buttocks the needle went into my sciatic nerve and the medica also fried the nerve so the pockets also hurt me bad! i wear stretch pants or skirts! i have not sat ona a couch or bed or chair for over 7 years in the car lean on left side prop up with pillows and lean over my bed i have alot of soft fleece blamkets i always have one wrapped around me its in both legs now and my right buttocks is bad just lean over my bed have double pillow top matress plus comfort matress would be nice to put my whole body on there instead of hanging my legs! crutches been using since i got hurt i walked in the clinic and could not walk out from the injection direct hit to sciatic nerve and could not bend knee or toes right afterand of course still cantthe emg showed major nerve damage course gets worse but always make sure if use crutches have extra pads!! slippers i wear or the soft furry boots bigger size of course from fat feet and swelling always get extra bigger sizes cause of all the swelling bad in my buttocks to kinda deformed it!! i do have a heat blanket but alot of times cant put blankets on me when i lean over bed because of the weight so the doct said get a infa red heater for my legs keep warm and help little with blood flow! just wish i could get down like alot of people with rsd if i did not get that injection i would be able to so everyone make sure if u get a shot in ur hip make sure they measure and its in the hip not the buttocks and if hurts make them stop she did not listen to me now here i stand and cry sleep maybe 2 hours every 2 to 3 weeks ok so what does the ebsome salt do i no u can use it on cuts but confused on what u would use it for with having rsd and cprs i cant even bath or shower hurts so bad and cant get dressedwith shoes socks shaving legs so always make sure i have what i need on before my family leave! ace bandages for the knees ankles also at times eases alittle!! and the heat patches and i also use emu cream the blue kind is used for this kind of pain cheaper at walmart way cheaper bigger bottle but its generic alot of money at the phara even a little bottle!

Quote:

Originally Posted by Prof de Rien (Post 765466)

Hi. My sisters and I created an arm support for my mom. She just had a "minor" stroke and her left arm is paralyzed. She cannot use a sling due to the edema in the collar bone area. We made a belt and used strong velcro to fasten it. A "sleeve" or "muff" was made out of material that was comfortable for her. She is able to thread the sleeve over her paralyzed arm and then velcro it to the belt. She said that it was more comfortable than it hanging down and more comfortable than it being stuck into her blouses between the buttons. She also said that she did not feel confined by it. It this interests you, reply and I can give you more details.

Thank you so much for all these ideas. Over here in the Uk there isn't much support for RSD so thank you again.

Quote:

Originally Posted by MominPainRSD (Post 470672)

Yes......really everyone......keep these ideas coming!! This is GREAT information to have!!

Karen, I wear my hubby's old white t-shirts too......they're HUGE on me and have been washed a million times so they're soft and they breathe better when I sweat (and so easy to change in the middle of the night if I wake up drenched). Ali, I wear pj's almost ALL the time now.....big, loose, soft flannel......but I've only had RSD since it's been cold......I am DREADING this summer! I always wore capri pants with sandals......now my feet are ghastly red, purple and blue. I don't know WHAT I'm going to do???

Also, I use down pillows and change my pillowcases often (perhaps 2-3 times a week since I'm on them so much) to feel "cleaner" when I'm sweaty or in pain. I am sensitive to odors and fragrances too, so I get nauseous of they don't smell good to me (or if the detergent has TOO much fragrance). I only have ONE set of sheets that is currently soft enough, so I'm in the market for another set.....I will have to be careful to get the "right" blend and thread count. I have bad luck with them "pilling" which feels like GLASS in the bed to me, as do crumbs. That was a great idea about the mens white Hanes socks. I'll look for those. Do they have seams on the toes that bother you??? That is my problem with most of my socks......my TOES hurt so much and the seam feels awful on them. Shoes are another huge problem for me. Even my nice "walking" shoes hurt my feet and cause spasms and jabbing pains. I haven't quite brought myself to wear slippers out of the house yet!!

Anyway......lets keep this thread going!! This could be so helpful to all of us who have RSD as well as for those who love us (and want some great gift ideas of what to get for us!!!).

Thanks again for replying!!!

New member here, just registered. I have been living with RSD for over 10 years and in addition to the great ideas, I have also found comfort in knowing that I am not the only one who uses these aides on a daily basis. Usually all I wear is a pair of loose fitting shorts. I admit that sometimes I feel embarrassed by this, I wish my kids had a dad who came home from work every day dressed for success. Instead I worry that their perceptions are skewed because not only does their dad not work, he doesn't even get himself dressed every day. I feel sad for them for that. But keep the ideas rolling, I don't see a lot that I would add that haven't been covered though.