I wear the Dr scholls socks too. But I found that if you look for the Diabetic socks of any brand they are really soft, and dont cut off the circulation. I love them!!!!

Great thread all, thanx for all the ideas!! :grouphug:

I only wear Crocs Mammoth...they are fully lined and are so warm. I wear them all year round... the lining comes out and can be machine washed and air dried.

http://www.crocs.com/products/women/mammoth/

I have 5 pairs now....

They also make these for men and children...


I know...they are not the best looking shoes but they sure are comfy.

:hug:
Abbie

Do you need to soak for the full 20-30 minutes to get the benefits?? The water gets cold, which makes me add more warm, which makes me add more Epsom salts (to not dilute it)......and they recommend using 2 cups per gallon of water. Do you use that much each time??? :confused:

I never use 2 cups!

I use about a Dixie cup amount in the tub.

I have also made compresses with a very concentrated solution on vacation. We don't have a tub or running water there.
So I got a dishpan and put about a Dixie cup of epsom salts in it and used
a thin cloth (I think it was a HandyWipe --you know those towels you buy to clean with --they don't have any chemicals in them. They have holes in them tho.) I folded it over for several layers.

I'd sit on the dock and refresh it every 10 minutes or so. For about an hour a day. I did this for my bad knee which was terrible at the time. The water was never really warm much and that didn't seem to matter...the temp ...since it was only compresses. The epsom salts worked really well that way too.

Be careful in the tub with Epsom salts... things seem to get very slippery with them!

RSD and the power of the mind
 

I posted earlier but I forgot to mention the power of positive thought in believing that you will be well and not focusing on the pain (I know it's difficult). I found a course online called "Living In The Truth Of The Present Moment which has helped me a lot.

I always wear flannel pajama bottoms and big t-shirts around the house...

Bed Cradle or Bed Bar. Particularly in winter can't stand weight of covers on leg. Found a bed cradle online which lifts just a small area of bedding up, put it in the garage last spring and mysteriously disappeared when my son cleaned up the garage. This winter bought a bed bar again online that lifts bedding entire width of bed. Used a heating pad to warm up the air in the space below the bar.
Thanks for all the other tips.

Rsd help
 

My legs, knees, and ankles are affected. I was diagnosed last summer and wore shorts at that time. I was really worried about what I was going to wear as the weather got colder. I found yoga pants by Exertec for about around $19.95. They are a smooth fabric and have been a valuable find. They also come in capri pants too. You can order these over the net from Elder-Beerman.com. The fabric shows every little flaw but this just doesn't seem that important anymore. I also have found an ultra soft sock made by gold toe. I can't remember the exact name but you can find these at Kohls.

I have also found physical therapy, i.e., stretching, free weights, and aquatic therapy to be a life saver. I've gone from using a walker to actually being functional again (with limitations).

NSAIDs have been helpful with the swelling, and Cymbalta and Lyrica have been helpful with the neuropathic pain. Also Clonazepam eases the muscle tension. The latter three tend to make me a bit tired, however I have equilibrated over time.

Hope this is helpful.

K.

Hello,
I'm new. I hafto admit to cheating, I did not read All the notes in this thread.
But, since I'm old to RSD, I may have some things to add.

I notice lots of folks talking about lose clothing, and that's true. We can't be "bound".
But, I have that thing where I can't stand a cool breeze on my "torso".
For those of us with PERSPIRATION PROBLEMS>
For that I started (in the mid 80's) Patagonia t shirts.
Patagonia calls their product "Capeline". It's Priceless if you have RSD!

They make silk weight to heavy weight. They're polypropelene(sp), made from recycled soda bottles. I found that Cotton is the WORST! It gets damp, and creates a cycle of sweat, chill, sweat, chill.....terrible
No COTTON on my back! Hardly EVER!
Nowadays they're more widely available. In the summer, I don't mind heat, but have difficulty with Humidity. In the winter, I can't stand the cool breeze, like I said, on my back mostly.
So, these garments fit closely, and don't allow any airflow close to the skin. Then, I can LAYER on top!
They make undershorts, and long underpants, socks too, and ALL can be layered.
Patagonia garments are not inexpensive, but they last forever. (Almost).

I am a comfort specialist by profession, and I note that HUMIDITY and BAROMETRIC changes have MORE to do with RSD Dis/Comfort than straight Temperature!
I've studied it, and spoken to others, who aren't as specialized in Humidification / De-Humidification, and well, we can't do much about the Barometer!
I myself, installed in my own home, central air that is slightly UNDER sized, so that it works to DEHUMIDIFY in the summer, more than just Blow cold! No vents exhaust onto where I would sit, or especially, sleep. My heat is by Hydronic Baseboard, computer controlled to respond to outside temperature. (not difficult to do).

Persperation.
I get it on my hands, feet and around my neck and behind my ears, my scalp, and on my back.
I spray my feet with anti perspirant and also my neck, after a shower.
My hands, I use Eucerin constantly. It's a lifesaver! (Just pay for it, it's WORTH it!)

It seems that "closing my pores" after a bath or shower, (Love a whirlpool) is an event. I wear a heavy cotton terry robe, full length, and have a cup of tea, or something ice cold, whatever I need.

I wear New Balance or Merrill trail sneakers. I need support that's comfy.
(I've been seen wearing them with a suit).

I'll be back, with more lifesavers, and my apologies if I've repeated what someone else has said....

Nice to be here.

ASB
Pete

Teresa
 

My hsubands RSD is in his foot and ankle. I buy him diabetic socks at wal-mart. They're super soft and not constricting , I've even bought a couple of pairs for myself. He also heats the bed up with the electric blanket before going to bed, then turns it off because of the night sweats he usually gets. The best sheets I've found are from QVC (Northern Nights flannel sheets) and regular sheets that are at least 400 thread count.

My RSD effects me from the waist down. And It's sad to say. But my guy didn't see me in a dress until after I got hurt. Now I wear dress' every day. For the most part in the winter I have slippers made of mongolian wool. To me, they look like a boot. And I've even seen other's wear them now. Also I wear tights alot. Like yoga pants>? Or sweat pants. They are very soft and managable. And I've seen folks wearing tights with dress' as well, like I do. Kinda makes me feel as thought I've started a couple of new fads. lol. As far as in the summer time. I have slip on shoes. Makes it easier if I can't bend down and tie. With a booty of sorts for sox. And of course my shoes are two sizes larger than I would normally buy. Leaving room for the swelling. The only med I have found that I am not allergic to and works for me, allowing me to be able to walk. Is Lyrica. With the Physician's permission. I fluxuate the mg's. Depending on how I feel. Morning verses night time. I have codeine that I can take if I just can't stand it anymore. And also, at night, I take pamalor. It's a mild anti-depressant that aid's with cronic pain. And it allow's me to get sleep. As we all know the more sleep we get. The better off we are. And it helps' keep me from not having daily crying spells. Since this stuff has grabbed my legs from me. Or the normal function of them. It is kinda sad. Best of luck to you. Soft hugs:hug:

This has been an interesting thread and felt I must add my clothes delima. I am a pajama person and since I have gained 60lbs with the RSD large T-shirts. Most of the time I can't do socks because when I put my toes together my feet and calves cramp. I can't sleep in a bed so sheets are no bother to me. I am so happy I am not alone on the pajama thing!
tjbird

My RSD is in both legs, and it has spread to both arms/hands as of last year. My legs were diagnosed almost 3 years too late, so the RSD is pretty bad there.

I love yoga pants. They are great, smooth and comfy. I wear wide wool socks at night, otherwise my feet and legs won't get warm at all, and I sleep under a very light double duvet that is especially warm, it's a winterduvet. Very warm for my legs, but too warm for the rest of my body especially if I have to stay in bed longer (because I'm too tired or hurt too much)

To be able to go outside, I have a few seventies-style lycra/elastine (soft) jeans with huge flares and a few big size black dress pants that are so wide in the pant legs they seem like skirts. Awful clothes!

I really do hate the clothes! I used to be very trendy, used to dress in tight pants, jeans and shorter skirts. I kept things very youthful and I had a thing for shoes. I was a lot like the character that Jessica Parker played in Sex and the City. Always on the go, getting things done, working hard.

Nowadays I too have to watch out for the swelling and wear more of a wide type shoe, or shoes a size to a few sizes bigger. I even have men's shoes/sneakers for when it gets really bad. Mostly I wear slippers that are comfy and that don't enclose my feet (hurts like hell). My feet are pure pain, I don't feel much else there. I can't even fully feel that my feet are flesh and blood, it's all pain, and it makes it difficult to put the feet down and take steps - seems as if all I feel is my heel (I have to think where and how I set my feet down while taking steps). My knees too are bad, and I regularly have flare-ups especially if I overdo things (purple-ish/mottled skin that starts to gradually spread throughout the limb from the knees)

I have RSD for almost 14 years, and I am on Buprenorphine pain patches (70 µg) & oral Buprenorphine for breakthrough pain and take Neurontin as well (2700mg a day). This is what works best for me, and I have been on this medication since September 2004. Before that it was Tramadol (which only just took the edge off the pain).

Neurontin has done lots, in the sense that I felt that clothes were no longer my enemy. I still have to watch what I'm wearing (can't wear tight clothes) but it has helped hugely, also with the ice cold sensation and with the pain.

I too struggle with function loss daily. I still don't quite know how to process it. RSD has taken my life away. I am a totally different person now, and against my will... that's the toughest part!

Hello....I use under armor under my clothes to keep them from moving about my burning skin! I also found that those plushy soft diabetic socks are great to keep something between my feet and the floor. Carpet feels like those hard burs and flooring is much too cold.
Thanks for your post, and I hope to get to know you! Conni

Has anyone else tried spray antipersperant for the sweating like ASB mentioned ?

That never dawned on me ! Is it better to let the sweat out though ?

My daily useful things
 

Hi All,
I just joined neurotalk and was going over what everyone does to help themselves. I also have things that help me...for one thing I have to stay warm and I mean warm. I live in the desert and dress like it was winter lol. My affected area is my right leg but recently I seem to have problems with the lower half from the waist down. I find that if I wear lycra pants/underarmour or biker shorts under clothing, it helps with the sensitivity. It acts like a second skin and also keeps my legs and back warm. I also use warm ups on top, cotton of course, as we all know the type of material has a great affect on our bodies. I wear mens tanks under my cotton shirts and always carry a sweater since the ac can have a ugly effect on me. To sleep, I use an electric blanket at all times...no matter where I am. I've been in Vegas and Phoenix and have hauled my blanket. Not only does it keep my legs warm but I find that it has a positive effect on my muscle and joint stiffness and is light enough to not cause me pain. Believe it or not but you don't really sweat as much when your symptoms are controlled this way, at least for me. The other thing I do and have found big benefits is my diet. I try to follow the Dr. Hooshmans Four F's Diet from Fla. I really try to listen to my body now more than in the past. When I eat things I shouldn't my body will tell me, mainly white flour and sugary things. Since I follow the diet as much as I can, which I'm not rigid about, I have been able to keep my RSD symptoms at bay for the most part. I have pain but nowhere near when my body is in, what I call, spastic mode. In the beginning, I found melons (like cantalope, honeydew, and watermelon) and fresh pineapple to really control my pain since I also have disc degenerative disease. I think that has been the biggest change I have made that has had the greatest results on my body. My leg doesn't swell and at times is normal warm, which my leg is not cold or like a piece of frozen meat. I am currently looking for recipes that other RSD sufferers have developed following the Four F's diet. The best I have done so far is altering diabetic recipes. My mom has been a big help altering foods to help me. The last thing I do for myself is I keep moving. I excercise as much I my RSD and back problem will allow, which includes jumping in the pool. I also bike and do table excercises my therapist gave me. I find that when I don't excercise I feel worse... more stiffness and my leg looses strength fast. I am so terrified of becoming more immobile than what I already am. So that's what I do for myself... I hope someone can offer something I haven't mentioned that has helped them. I've been searching for a positive support group so if anyone knows about one online pls let me know. I give myself alot of support and more than what some groups I joined can do for me...so finding a positive one is important.

hello everyone
 

I just joined NeuroTalk, after reading through these I learned a lot. Thank you everyone for the great ideas. I have one to add, for RSD/CRPS that affects lower extremities I have found that a product called Toastitoes is very helpful. It is a foot warmer that sticks right to the sole of your sock. They heat for up to 9 hrs. They are thin enough that they never really bothered my sensitivity more then normal socks and shoes. I got them at Walmart in the sporting goods section in Fall and Winter. When seeing them on the discount rack I stocked up. I loved them for Winter, I have also recently found them very helpful for damp cold Spring days. One warning, on the package it states to wear with shoes only. I found out why that is, when you are not wearing a shoe over them they get far too hot. Hope this post finds everyone feeling well.

All is good info. I don't know if this will help or not, but I buy those soft, downy throws with the fringe on the ends from Walgreens and use them to support my arm at night when I am aching. I also use them to help keep my feet warm at night when I need a little somethin' extra. HOpe it helps you too. Have a great one. Suz

what i've found so far
 

Hi, I am brand-new to this, but in my short time this is what I have found that helps me. I too have the high-thread count sheets...but the satin ones are awsome! They are light weight, smooth, yet warm (though I have no idea why I would be cold when it's like 100 here). The only con is that they are a pain too keep on the bed if you have kids or pets. I use my slow-cooker a lot to fix dinner now. I can spend a good part of today slowly prepping the food (though sometimes no prep is really needed) then tomorrow morning I put it all together, turn it on and 8 hours later a good and good-for-you meal and I didn't really do anything. For some reason, shaving my legs helps. Yes, the act of shaving feels really wierd and does hurt, but not nearly as bad as when my leg gets cold and the hairs stand on end, to me, that hurts worse. I also where those big, furry, flip-flop slippers.
Hope this helps anyone...i know i'm gonna try some ideas i've read :D

Ketamine Infusion Successful!!!
 

I'm so happy there is finally more artivles of the success with the ketamine infusions for the RSD/CRPS patients. I was treated by Dr. Schwartzman in Phili in 2006, and had 8-9 months of complete pain remission. I did the followup boosters with a San Diego doctor, but gradually stopped the booster..which I now know was not the right thing to do. Gradually over the last year mybilateral foot pain, burning, crushing sensations are retruening, but I do know that other RSD patients have gone back for another ketamine infusion and had good outcomes. The best part is that I have a doctor here in San Diego that has the outpatient setting to treat patients on the west coast. Most of the other MDs doing this treatment are in Phili & NJ--where Dr. Schwartzman & Dr. Harbut started it. Actually Dr. Harbut & Dr. Correl brought it back from Australia in 2002. Lots of info on the history & treatment protocols at RSDSA.org. You can reach me @ 619-933-5099 anyone wants to connect to the great MD here for treatment.:winky::grouphug: All RSD patients are in unbelievable burning pain, & it is a miracle to have it go away. I experienced that miracle, and it kept me from commmitting suicide..the pain was that bad. Thanks to Dr. S. in Phili & Dr. Harbut!!!

My rsd things i never leave home with out
 

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

Pajama party
 

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!

Sock that worked for me
 

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

Help
 

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

Silk!!!
 

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

electrical blanket dilemma
 

Drug stores sell very good heating/cold packs now that come with their own soft encasing. You can buy dry heat packs or moist heat packs depending on what works best for you. You can put them in the freezer if want cold instead, but either type can be put in the microwave for 30 seconds to 2 minutes to heat up. I have one that is clay based which produces a dry heat & another that produces a moist heat. The heat in both of them last a very long time...I'm talking hours & can be placed wherever you need them.

Its been a bit since someone posted here, but Im new and wanted to share what I have discovered.
I have RSD in 88% of my body so I go through fits of sensitivity, one is too sore, one is numb, one is hot, one is cold. Other than clothes, my biggest issue has been bedding materials. Comforters are too heavy to lay on my limbs, blankets to light to keep parts of me warm.
My hubby surprised me with some Canopy brand sheets. They are found at Wal-mart and I dont know what all these are made of or even what the thread count its, but they are absobant (sp) like cotton but as soft as silk, but not as freaky feeling as silk. (yes I know I said freaky, but, duh, I do have sensory issues...lol) They are kinda on the high end (a.k.a. expensive) but they are deep pocket (for our specialty matress), and are so kosher with my phsyco body and texture issues...
Also, my feet are always cold to your touch but are burning to me, they also sweat like an overweight football player at super bowl, I have started putting VIVA brand paper towels into the bottom of my crocs and house shoes I use a piece of two sided tape to hold it in place and it soaks up all the sweat without drenching my shoe and resulting in the foul smell of a sweaty foot (which oddly enough its always my shoes that stink not my feet....) and the viva brand is very soft and absorbant so it doesnt bother me and it takes a day to two to "fill" the paper towel.

Hi the sheets are Egyptian Cotton! I have some, they get softer as you wash them. Wonderful sheets, enjoy them...hopefully you will have a pain free night so that you may get some sleep. :)

:hug:Sandy

RSD/CRPS in ankle
 

I am a 15 year old RSD patient, due to a severe ankle injury about two years ago, but I was only recently diagnosed. I fell down a stair, was forced to "walk it off" for a week away from home, then after 6 months of ankle braces, crutches, canes, maximum dosages of Ibuprofen, elevation, compression, rest, doctors visits, x-rays, MRI's, Physical therapy, etc. etc, i had to have surgery to repair the ligaments in my ankle, and was stuck in a wheelchair for 6 weeks. I was then put through all of the above again, but even as my ankle stabilized, I am still in constant, excruciating pain.
The only remedy that the doctor gave me is heavy medication, but with little or no avail. Some of the things that make the pain easier to live with are:

Socks: Dr. Scholls socks work great for the winter time because i can't let my foot get too cold, seeing as it already does not regulate temperature as the rest of my body does, they are sort but are supposed to provide circulation.
Sheets: I sleep with two safety-pinned together and a heavier blanket, and don't let the blanket over my feet because it hurts, but the sheets keep them warm enough.
On days where my pain is above a 7.5, or below the 4.5 on the famous 1-10 scale, i write down what i did that day, just to control the pain enough to sleep.
I constantly wear a brace, but with swelling it is painful.

I was wondering if anyone ever tried Tonic Water with Quinine for their RSD and if it worked or not, and any other remedies for this. I'm only 15 and being in high school with this makes it that much worse.:confused:

hi,

My daughter is 16 years old and has RSD, she is in constant pain as well. Have you tried one of the programs like the one at Childrens hospital or Cleveland Clinic for pain rehabilitation. You can pm me if you have other questions. You should post on the regular board if you want some answers. Join neuro talks, there are many teenagers on this board that will answer questions as well as adults. I am sorry for your pain. Where do you live?

I look forward to hearing from you.

Sandy

Hi,
Just read your post. That is a tough thing you have been through. I have RSD in my left foot due to neuroma surgery that didn't really ever heal plus an infection later down the road in foot. Anyhow, I am interested in your Quinine and Tonic Water. Do you pour it over your feet or drink it??? LOL...am really interested. Please let me know. I am not on this site much cuz I cannot figure it all out. Sorry to hear of all your pain...you are way too young.

Doctors In Rochester, treatment that works?
 

Hello,
Thanks for the post.I am really looking for a Doctor in Rochester, NY area that can give me some type of relief, I have had nerve blocks, pills and still everyday am iin pain! Can someone help me find a GOOD Doc who knows what they are doing?
Thnaks all in advance, hope you all are well and stay smiling..:grouphug:

I have found two things that help "cool" my foot down. One is a product called Blue Emu. It comes in a jar. It is temporary relief.

And the best relief for a little bit longer is the aloe plant. Pull off a piece of the plant and split it open. Rub the pure aloe wherever you want it to cool down. Then, I split little pieces off and stick them between my toes. Sounds strange, I know, but it works for me. Maybe it will work for others. And you can use as much as you want. I then keep what is left of the piece in the refrigerator because the colder, the better. (unless my feet are cold).

Also, my daughter bought me some diabetic socks even though I am not diabetic. But their softness is wonderful. There is a tiny little seam on top but not like a regular sock. And, of course, the epsom salt baths for my foot. That helps,too.

Hope this helps somebody.:)

I wear light athletic pants for the same reason. Jeans add may too much pressure on the top of my foot. I can only wear them with shoes on. PJ pants are the most comfortable so far.

HEY!! I was reading through your post, and I saw that you were going to be on a plane soon... over course, I didn't look at the post date so I could be super late!!!!!! This may be completely weird, but I have RSD as well, and I have found that being on a plain actually makes me feel better on the inside. Going up and down is painful for me, but when we are at high altitudes it actually relieves alot of my pain. My doctor says this is beacuse of the barametric pressure change! Anyways, let me know if you were the same way!