[dbe]

I had a total knee replacement 6 weeks ago and on tuesday of this week I was told I have RSD I have been in so much pain these last 6 weeks that I can hardly take it. I cannot feel the bottom of my foot nor can I feel my left ankle. My Dr. put my foot in a removable cast that is hurting more than helping. The pain meds I am taking seem to do nothing. I know that I have to keep a good attitude but that is sometimes very hard to do. I keep hoping that this will go away. I dream that it will go away but the first step out of bed in the morning is the hardest step of the day. I have not slept a full night since recieving my new knee. The pain from just moving my leg and the touch of our sheets touching it keep me awake. I have been walking with crutches since surgery and have the feeling I will never walk normal again. I am trying to walk with a cane but the knee is still weak and without feeling my foot much it is very hard to do. I guess I am writing on this forum hoping to chat with somebody else who had this (RSD) or has just been told they have this disease

[UroDoc]

I don't treat RSD but I wonder if a drug like Topamax would have any benefit in this disease process. I hope some one with RSD logs on and responds to your post.Good luck

[kat]

I eas diagnosed with RSD 13 months ago. Like you, I had burning pain ( in my left hand and forearm) as well as crushing pain and what I called " a thousand bee stings" pain. The physicians I saw were not very familiar with RSD and only had generic treatments to offer, such as Prednisone, Neurontin and nerve blocks. This offered no relief whatsoever. Physical therapy hurt worse than it helped. My hand would swell and turn blue and I could not stand to have anything touch it. Even a breeze from a ceiling fan would cause pain. I did go to a well-respected accupuncturist/MD and treatments did reduce the pain. Some people respond very well to accupuncture, others are frightened of the needles. This treatment stopped working, so I found an accupressure practitioner. None of this is inexpensive and insurance does not cover treatments, but the accupressure turned out to be very effective. I can use the hand for more than just a doorstop! The pain is completely under control and I take a modest amount of Advil each day. Since this is a neurological disease, I also read information on calming the "mid brain" and I take Vitamin C and B-complex every day.

My experience is that physicians just don't know alot about the diagnosis and can offer only a few options, so it is up to us to investigate what treatments are available. Good luck to you.

[Rosie]

I have RSD in my left foot. The worst thing you can do is have it immobilized! If sheets and blankets are bothering you (which they will) buy something called a blanket tent frame. It fits under your blankets and your legs go between the bars. Nothing touches your legs or feet. I can't sleep as well and pain meds wake me up so I take an Ambien sleeping pill. Regular therapy can hurt so try water therapy. Also try a chiropractor. I go to one and yes, it does hurt for him to touch my foot but he keeps me walking! Before I went to him I was using a cane. Now, I can manage without one. I hope this helps you.

[obryrir Rose]

There is alot of info for RSD and what you are going through at RSDandYou.com, also if you look up Dr.Swartz on a web search he is the new RSD GURU since Dr. Hoosmans retired.

I know the links will help, they help me!

Low pain wishes,

Rose

[ksasso]

You are so lucky that you have a physician that has diagnosed it so early!! From everything I've read, this is criticial to lessening or eliminating it. Are you on Lyrica or Gabapentin?? This doesn't seem like it helps, until you decide to NOT take it - then you realize that it lessens the HOT pain. I had a Tib/Fib compound fracture and at 5 months my physical therapist gave me an 'update report' to give to my orthopedist. On it he had written "RSD?". When the orthopedist saw it he simply said 'you don't have that'. Come to find out, I not only had RSD but also a non-union fracture that I had been trying to walk on! At 9 months the fracture had finally healed but the RSD was firmly established. I am now at 1 1/2 years and still keep trying to find some answer that will eliminate this problem. There are a few experimental programs - I'm looking into the Ketamine program. I wish you a happy ending - hopefully, your doctors quick response will make this a short term problem. I used to be an avid runner (marathoner) and horse enthusiast, now I fumble through my day, not so pretty!!

[dennyfan]

I had simple carpal tunnel surgery and a wrist ligament repair. That was 16 monthes ago. Fifteen years ago I had crushed my hand but remarkably lost little use though it was painful at times and was weak. It was determined I needed carpal tunnel surgery after I cut my hand with a ring under gloves 20 monthes ago and never even knew it. After surgery I ended up with Parvo Virus Artheritis which is a temporary virus that mimicks RA. I thought when that was gone I would be okay. A couple monthes ago I was told I have RSD and the pain I feel will never go away. I am only 37 years old. I had a very active job as a courier for one of the big shipping companies and loved my job. I will never get to go back. I am trying to figure out how you learn to live with this. Even on good days (yes I know Im lucky to have them but it just means the pain is less) I worry about when its coming back & how bad it will be. I am glad I found this forum though because I know I am not alone and it can get lonely in here sometimes. I have chased a lot of my friends off in the last year.

[ksasso]

Whoever told you that the pain 'will never go away' is incorrect, even if it is your physician!! RSD is highly unpredictable. They can't even be specific as to what/when each stage presents itself. I have had it for about 1 1/2 years, I used to run (marathons), own and breed horses and ponies - which we still have although most are just idle right now. But, I will never give up on the idea that somewhere out there is a 'fix' for this. After reading about your injury it struck me that perhaps there is a link between previous injury (which doesn't turn into RSD) and the secondary injury resulting in RSD. I broke a bone in my left foot (next to my heel) about 4 years ago. It healed without any problems, I was back running in about 12 weeks. When I fractured my left leg 1 1/2 years ago everything seemed to go wrong. First, it was a non-union fracture. Then the tendon adhered and needed to be lengthened. Then, that dreadful pain still wouldn't go away, and of course, its RSD. You are like me also because my pain comes and goes. Sometimes I could almost walk normally for a few steps, except that the ankle is so rigid that its impossible. Then other times it makes me actually moan outloud. Its horrible at night, it burns and sends shooting pains ... but there is alot of research being done with Ketamine. Some people have actually walked out pain free. My husband and I are looking into that. If you're interested I'll forward what I find out.
Good Luck.

[southalbrunette]

In May of 2006, I broke my leg and destroyed my ankle. Surgery and 6 months of physical therapy, I was still having pain. But not pain that I could associate with the bone and joint. After several trips to the ortho doc, it was worse. My last visit to this doc, I mentioned the symptoms that I had, including a nail that looked like it was destroyed and his reaction: go get a pedicure. After a visit to a more specialized doctor, a ten minute visit ended with the diagnosis RSD. Didn't have a clue what it was nor had I ever heard of it. When I did an online search, I was so surprised to see that not only did I have this, but had symptoms of all the way through stage 3.
I'm in the beginning stages of therapy and could use advise.

[dennyfan]

Thank you for the reply. I actually use a ketamine topical treatment. It takes some of the burning pain away. Though it can only be used 4 times a day. The doctors do think there is some coralation to my old injury and the surgery. I know I am lucky to have a doctor that treats me well and is doing his best to help me. I just take so many meds everyday. One day I was on like the fourth day of low pain and was feeling really good and decided to try to go without my meds. I didnt make it to noon before I was regretting that descision. This is just all fairly new to me. I have been in pain over a year but thought when the virus went away so would this pain. I just learned it was RSD a couple monthes ago. I would appreciate any information. I just finally ordered a couple of books on RSD. I have pretty much been in denial mode. But when I was prescibed dilaudid for pain I figured it was time to stop deceiving myself and start trying to figure it all out. I went to see a counselor and she wanted me to find a support group but there isnt one here. I thought joining a board would be the next best thing.