I was diagnosed with rsd three months ago. I have had no contact with others who suffer from this disease. I would like to know more about this disease and what I should do from here.

Hi Alison, glad to meet you! Thanks for the response to my post, you are so young to be dealing with something as terrible as rsd, and I'm so sorry to hear you've had it for that long. I hope you have a great support team. I'm 26, with some wonderful family and friends trying to help me out and still having such a hard time dealing with it all, I can't begin to imagine how hard it must be for you; you're obviously a very strong young woman...

I'm also on the Lyrica, clonidine, amitriptyline, percocet, and valium; along with the fentanyl patch and the Catapres patch, so basically, I'm a walking (or riding) zombie, lol. They've got me in a wheelchair now...

Good luck with your PT program. That's one thing I've been a bit confused about, I was under the understanding that pt played a big role in the treatment of rsd; however, my team of doctors will not send me. I've been told that pushing too hard will only worsen the condition and perhaps cause further spread, so I'm supposed to try and move as much as possible at home, but not to push it. The last couple of weeks I've lost any flexibility in my left leg. My toes and foot are arched up as far as they can go and my leg is bent at the knee; I'm completely locked in to this position which makes sleep about impossible...

Anyhow, I guess just trying to get by day by day is all we can really do, I'm still holding out hope for a "miracle cure" but as i'm now only getting 2nd and 3rd opinions, that hope is fading fast... I hope you're having a "good day" as well and will count you in my prayers...

Take care my friend,
Sarah

I am new to the forum and share all of your agony. I had my left foot crushed 8 years ago and have had 6 surgeries to fusion my foot. They didn't catch the RSD in time and is now full blown. I take topomax, lexapro, klonapin,dilaudid. I have an intrathecal pump with dilaudid and bupravaine that I get an hourly dose. It is implanted in the left side of my abdomen. I walk with a cane from so much pain. I just had surgery in March because a screw broke and a part of my foot was broke again. Now because every invasion causes RSD to worsen the allodynia is really bad and so is the burning. I feel terrible for Sarah because the worse think for RSD is immobility. You are suppose to do some kind of exercise to help your extremity from contracture and burning. I wish everyone the best and god bless. Julie

Hello Jules!!!
I copied your post over to the New Member Introductions so that your post could be seen by more people and you could be welcome in Neurotalk fashion. Here is the link to the post I made in your honor.
http://neurotalk.psychcentral.com/showthread.php?p=305243#post305243

Hi
I am 27 yrs old and my RSD diagnosis was confirmed a few days ago after it showed up on a bone scan. It is in my left lateral knee. I have had 3 surgeries in that knee. My 3rd being in Jan this year and a major one. I was on bed rest for 8 weeks. I basically woke up about a month ago in pain so severe it made me cry. I am usually not a crier with pain unless it is really bad. I am on lyrica, oxycontin, a cream containing neruotin among other ingredients, and the lidoderm patch. I am suppose to get a nerve block soon. I am hoping once I get the block I can go off the meds and try to get pregnant. I am basically so sick of my knee and I really want to get pregnant. I guess my question is can RSD affect pregnancy and how long should you be off your meds before being able to try. I am kinda over the pain and just want to ignore it and move on with my life. I have been off work since Jan. My husband is a marine and we are getting ready to move from maryland to north carolina a week from today. The move so far has been hard because I cannot help with much and when I try I am in a lot of pain afterwards. I am hoping to find a good dr. there and to get the nerve block asap. Has anyone had the nerve block, if so how soon did you notice it helping?

I am glad I came across this site so I can find answers and do the best I can to get through this. I know I have good and bad days and ups and downs emotionally as well. I hope to learn a lot more. I think the more I know the better I can get through this. I know now it is not cureable but it can go in remission. I am hoping I can get mine to do that.


Erin

I highly recommend the Carolina Pain Institute in Winston-Salem. I have been going there for the past 1 1/2 years. They are totally up to date on all the new treatments and research going on. If you google it you'll find their website. Not sure where in NC you're moving so hope this helps
Jeanne

Thanks I will check it out. I will be moving to topsail island near camp leguene. But I will definitely look into it. I am ok if I have to drive a little bit to go to a descent dr.

I don't know how else to describe how I feel other than frustrated. I have had shooting / buring pains off and on in my left wrist/hand for a few months now..I do a lot of computer work and thought that it was carpal tunnel. The last few weeks it has been worse so I was wearing a brace and trying to use it less then it began hurting so bad I couldn't function, I have a high pain tolerance and was just in tears it hurt so bad. So I scheduled a Dr. apt. a few hours before my apt my arm lower arm and hand got very cold and turned blue...this lasted for 4 hours then it warmed up for a few and went cold again...it does this constantly now. The Dr. tried somethings then sent me to ER to make sure it wasn't a bloodclot...6 hours and some tests later they said no clot probably RSD and sort of explained it to me...told me to follow up with my primary MD. I did that, they ran a bunch more tests bloodwork etc, still waiting for a few of the results but the Dr. said he really thinks this is what it is, that this is the only thing that accounts for everything...as I sit here my hand and wrist on fire I am in disbelieve...I didn't injure myself like I read about most...yet it swells and burns and freezes and just hurts like nuts. They currently just have me taking a lot of ibprofen and some vicoden for night when it's really bad...sometimes it works other times i scream and cry because i can't get it to stop no matter what i do...when it's really cold nothing can touch it without me yanking it away. Is there anyone else here who has this but never had an onset injury? I don't know if I accept this or get a 3rd opinion. I don't know if it will get worse, or better or spread or...I don't know.. sorry for ranting but I don't know what else to do...I'm hoping that I can find some answers, some help by learning more, talking with others. i have to stop now, it's going cold again.

Hello all. Thank God I found this site. My husband of 24 years developed CRPS II (causalgia) after a total left hip replacement in 2006. Immediately after the surgery, while still in the recovery room, he was complaining of his left foot hurting and asking me to be careful walking near his foot (he was afraid I was going to bump into it). I was totally confused because he had surgery on his hip, not his foot, and he was still numb from the spinal. It was like his brain knew what his body didn't yet know. As soon as the spinal wore off he was in agony!!!! He was screaming for me to help him he was in so much pain IN HIS FOOT. I never imagined that after a hip replacement his pain would be in his foot. He couldn't move his foot and had a foot drop. At first we thought he couldn't move his foot because of the lack of mobility in the new hip. We were just clueless, scared and so confused. The day after his surgery, I was getting off the elevator on his floor and could hear him screaming all the way from elevator. I was terrified for him. He kept complaining of his foot burning.

They did minimal physical therapy on the hip, with him dragging his foot, and sent him home 4 days later. The surgeon came in one day and told my husband that he probably had a stretch injury to his nerve and that 90% of people recover. My husband said "what about the other 10%" and he said "they never recover." He basically blew us off and was like you'll be up and about in no time.

When I got him home I swear he suffered a mental breakdown from the pain. He started hallucinating I think from the combination of oxycodone, oxycotton, backlifen, and whatever else they had him on and the constant pain. He couldn't get comfortable. The bedsheet touching his heel and wrinkles in the sheet drove him crazy because it caused such intense pain. I couldn't put any bed covers over him because he couldn't stand the touch and a breeze coming in the window was terrible. I could only stand him up out of a hospital bed once a day to wash him and get him straight back in bed.

Finally we got him to a neurologist who sent him to a Pain Clinic. The doc told us he thought it was RSD/causalgia and did two sympathetic blocks on him but they offered him no relief. The doc said it couldn't be RSD because he didn't respond to the blocks. But when I took him back a year later he again referred to my husband's condition as causalgia. This doctor then recommended a spinal stimulator to help reduce his pain but my husband is so afraid of another doctor performing a surgery on him that he's not yet willing to do this. Every month he has to go to his primary care physician for a refill on his pain meds (recommended by the Pain Clinic) and they act like he's a drug addict. He takes oramorph, lyrica, vicodin, celexa daily. He has a lot of trouble sleeping at night. He continues to try and do things around the house but what used to take him a short time now takes him days. He said he has not been pain free in 2 years -- it's been completely constant. The burning is not so bad now but it is more dull, searing and stabbing pain. Before he was diagnosed they put him through an EMG which about put him through the ceiling and they documented they couldn't continue with the procedure but it showed that he does have nerve damage. I had to quit my 25 year job to cash in my pension because he had no disability and work elsewhere. It has just about ruined our lives. We no longer sleep together because of the pain he's in, the intimate part of our marriage is nearly gone. I feel so bad for my husband.

Interestingly enough, my daughter also had to have a lymph node removed this past week in her armpit and while in the hospital the lady in the next bed told us she also had causalgia and she recommended her neurosurgeon to my husband. She just had the spinal stimulator implanted. Can anyone tell me if they are effective? What is the recovery time for an implant?

I was diagnosed with C.R.P.S/R.S.D a little over a year ago. It happened after an injury to my right wrist ulna impaction and a arthoscopic surgery. Have had 6 nerve blocks in my neck (not fun) they have offered me lidocaine infusion?? I have said no thank you to that. I am on Novo Norotriptyn right now (think I'd know how to spell it by now! lol) have tried Gabapentin and Lyrica.
They say it doesn't spread but my body tells me otherwise. The pain specialist says the nerves can do that sort of thing about the random stabbing pains I have been having in my left side, and my feet.
When I wake up in the morning I can hardly move, my shoulders, neck and back are very stiff. I can only sit, drive walk, lay down for short amounts of time, otherwise I start hurting and aching more.This condition does make life feel like hell. With all this going on I am dealing with WCB & money problems due to all of this. Stress does not help this condition at all.
But knowing that others with this condition know what is going on, and can understand helps ALOT. Being alone with this condition, feeling like you are crazy, or going crazy, and that Drs act like you are exaggerating is frustrating. So hellooo, hope everyone is having a painfree day!