I got my rsd about 2 yrs ago, after right hand surgery. It took about 6 months to almost completely resolve. I started getting botox injections (my second round)---now my rsd seems to be returning? It also seems to be going into my feet and left hand, do you think this is possible. I didn't know it could come back like that? You are right, it is very hard to stay calm when it feels like it is spreading. How long have you had your rsd? Is it getting better?? take good care----hurxh

Hi Hutch
its been 7 months for me,,what speeded up my spread was that i had a THR on 4/13 without a continous block,,Everyones rsd spread at a different rate,,mine was boosted because of the hip surgery,,staying calm is very important and exercise is inparitive to a recover or a remission,,,my gut is telling me that being that your in like a reinstatment of rsd,i would aggressive attack it with a pain management and bombard it with exercise and back this animal back into its cage, i feel very confident that your in a stage thats very crucial,,time is a valuable thing,,in the last 2 weeks, ive seen mine recede,Since then,,,ive been in the pool aqua jogging an hr aday 5 days a week with a light full body workout in the gym. Im not spazing out, and am trying to stay focused,,,i was a certified PT for quite some time,,feel free to pick my brain on a regime,,or anyone else here as well,,Im always asking for help too,thats what were here for and if anyone here wants to contact me ,my phone number is available,,pm me,, I dont want to just survive anymore i want to Live,,,,,,,,,,,and pray to the Lord,,he will heal,us as he says,,,diligent hands rule,,,,,,,,,,your friend,bobber

My RSD started in my upper right extremity after 2 rotator cuff repair surgeries (May 2007 and April 2008) The ortho surgeon suspected it in June 2008, sent me to PM doc, who did about 25 or so trigger point injections during the summer in my upper back, neck and head. By Oct 2008 the RSD was in my head and my sympathetic nervous system was pretty whacked. I didn't get my first block until christmas eve 2008. I suffer from severe head pain, especially after using my arms for anything strenous.

I'm almost certain I've got it in my right leg too. It burns and stings almost all the time, it just hasn't felt right for several months and I know I'm not crazy. I have varicose veins in that leg, but I've never had my veins bother me before now, and its been over 15 years since I developed them while I was pregnant with a 9 lb baby boy. The leg also gets grossly swollen at times - usually when I'm in a flare - and the knee and ankle get stiff and sometimes get those RSD sparks of lightning in them. I walk at least 3 miles a day, usually 4 or 5 - I figure like everyone else on this board says the exercise is hopefully keeping the RSD in leg from advancing too far if that's what it is. I just had a doctor test me for lyme again (test #5 in the last 6 months or so). Maybe a tic bit me and that's what lyme feels like. Could be.

I like the idea of a "chill pill" like the Ativan. I don't currently take anything like that, and I have a terrible time sitting still, for instance, I can't remember the last time I watched TV. But I'm afraid of being tired all the time, too. Do you end up napping a lot when you take it?

Sandy

When you get rsd and are able to beat back all the symptoms, it's called remission. There is no cure. Remission, like with cancer, means it can return at any time for no reason at all, or because of another minor injury or even illness. Since everyone is different, there's no way to predict how our bodies will handle rsd nor how fast it may spread or not.

I've had rsd for over 6 years now. Within 11 months it was in all 4 limbs. Since then it has gone full body. I got a broken at knee and 2 weeks later is when it all began.

Hugs,

Karen

No nerve blocks - 2 much pain 4 me resulting in temporary relief! i go 2OT twice/wk; PM dr once/mo; psychologist once/wk; & neurologist twice/yr. i've had epilepsy since age 16 - taking Tegretol XR 200mg and a 100 mg plus phenobarb. Taking 1500mg/day Neurontin & 10mg Lexapro.....take Ativan 4 anxiety or "impending" seizures. Also was prescribed a compounded "Keg Gel" topical pain cream for my pain areas. My RSD, as i said, began in wrist (left arm) & went 2 left foot! I've been heavy researching RSD sites 4 "traveling" of RSD. good sites: 1)http://www.ampainsoc.org/pub/bulleti...8/advocacy.htm
2)www.rsdinfocenter.com/rsd-progression.html
and an article: Patterns of spread in complex regional pain syndrome, type I (google it!) can't type 2 long....take care!

Sandi
the ativan or xanax ,klonpin ,,any antidepreeant will help,,my flares useed to be consistant late in the evening[between 4-6pm],so i would take half a pill,,wait for half an hour then take the other half,,,its better to use alittle,,when you first start a new med,,you can always add,but you cant take away,,,certain meds,,like oxycotin or mscotin or any time release ,,you cant cut in half,,ask your dr,,,oh by the way ,,good point you made,,i didnt have varacose veins either until rsd,,i have a bunch of little ones near the bottom of my ankles, and im not over weight or up on my feet alot,,,another plaque from rsd i guess,,,,,,,,,,bobber

Hello---did you say you live in W virginia still? What does THR stand for? I do (although I hate to admit it to myself) believe you are very correct that my rsd is reinstateing itself. I do have access to a pool so I will start doing exercises that way. I had my left wrist operated on 3/5/09, maybe that has something to do with it flaring up again? I also question if my botox injections could of aggravated my rsd?? I am not seeing a doctor for this--what type of doctor do I go to. The first time I got rsd it was my hand surgeon that sent me to a pain management doctor who gave me nerve blocks--only thing with that was the shots only worked the first 3 times and then it was no longer effective. I am not sure that would be the way to go again?? I am very leery of pain meds--they scare me. I do take ativan occasionally, so maybe I should take that a little more often for now. Oh, what does PM me mean?? I am not very good at the computer lingo yet. I go to John Hopkins for my epilepsy, dystonia & arachnoid cyst, maybe I should call JH to see a doctor there for my rsd or do you think the exercising will do the trick?? Thanks for your reponse---and what days and times are good to call you?? much thanks---hutch

I had no idea that rsd only goes into remission---but I am just learning this. I only have it badly in my right hand and arm, also less severe in my left hand and my feet are bad---they feel like a very hot-prickly-burning sensation. Also my feet feel swollen? How do you tolerate your WHOLE body with rsd? are you on pain meds? take care and thanks so much--hutch:

jus' replying to PM (Pain Management, i think!) & THP (total hip replacem.)....r u on Neurontin? i have epilepsy, too! i take Tegretrol XR 100mg & 200mg (900 mg/day) & 80mg Phenabarb/day. i live in the south!

Hi hutch
I sent you a private message,,look up in the right hand corner of the main page under your name,,,were all here to help,,I trust in the Lord,,if anyone else needs to contact me ,,feel free,,,bobber,,ps nancy was correct too,,..P.M also stands for pain management,,i should have been more specific,,,thx nancy,,,,,,,,,,,,,,,,