klb1553

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.

AintSoBad

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

Fireball

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

bsfosdick

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. 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!!!

r.s.d.sucks

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