are you essentially without spread? did you have scs or pain pump? Thanks!!

I also have issuse in my rt elbow (needs surgery, not going there), rt shoulder, neck, and back. They are generally relatively mild compared to my rt hand. I have flare ups in other areas as well, but every day, week, month, are different. Usually there is a cause attached and I'm proactive about all those little alarm bells nowadays.

I started having back spasms after travelling a few weeks ago, that I'm 95% sure was a result of my locking my arm as my pain escalated throughout the day. The Lidoderm patches did nada this time. Three trigger injections later, 7hours of massage and I'm back to baseline back pain--insignificant compared to the HAND.

I had an IV line put in my "good" hand twice in the same spot, a week apart, during a series of blocks, the pain was as severe as the right has ever been and completely freaked me out. I used Lidocaine patches nonstop for a few days and it went away. This is part of my fear of the SCS. Everytime I've been in the head space to try it, WC throws up roadblocks anyway.

I should say my while my left hand is generally pain free, it is just as hyper sensitive to cold now as the right, and with the cold there is burning pain, and the fingers stay colder than normal. Actually, there is zero chance I could tolerate an ice pack on my hands or feet at this point. Even holding a piece of cheese from the fridge in either hand causes burning pain from the cold.

It seems when my stomach gets irritated from the meds, if I don't get it under control quickly enough, fabric touching my stomach starts bothering me... I feel like an old car that needs to be constantly monitored for fear of breaking a part that will send me to the junkyard... But, then I'm thankful none of my other parts have really broken down, ya know?

My RSD is is my Rt. hand and Forearm. It had spread to my shoulder region but with sympathetic nerve blocks I no longer have any pain in my upper arm.
I was/am Rt, hand dominant.

My lifesaver kit;

This is my American express card, in other words, I NEVER leave home with out it.....my Isotoner Medical glove.

Always sweat pants or workout pants that do not have a zipper or buttons (as I can not do either)

My tennis shoes already tied, double not.

Tens unit
Medicine
Pillow (for trips)

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...

i am new to crps but i have a chronic back condition so some helpful things i have found are jersey cotton bottom sheet, no top. also pillowcase of jersey cotton. soft flannel ones are nice too. everything washed with downey softner. my blanket is down filled from llbean best ever. i also have carpel tunnel in both hands. so i have special exos brand remodel braces that include my thumbs. my crps is in right arm, hand, shoulder so my qustion is wear can buy soft comfy button up shirts? my husband helps put tshirts on me but the pain is unbearable at times. i wear danskin pull on cotton pants from walmart. i hate wearing anything tight, why did they invent bras???? lol i found some that button in front which is much easier tho!

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 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.

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.

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..