It's important to remember from a diagnostic standpoint that not everyone with CRPS/RSD experiences significant skin discoloration and/or swelling. I am in this group, although I've had CRPS for 4 years, which is now in the entire right side of my body. I don't experience noticeable swelling, and although the skin on many areas of the right side of my body (particularly my hand/arm/feet/thighs/cheek) often turn red when cold, this redness goes away when I warm up.

My RSD is back, but I was in remission for eight years, so I can tell you what I did to get there.

I was diagnosed with RSD in my left foot in 2003 when I was 22. I went hiking the week before my college graduation. The pain started in my big toe, but quickly progressed to all my toes and then my entire foot. The docs did multiple xrays which showed nothing. I had multiple blood tests for lyme, lupus, rheumatoid arthritis, HIV and gout--all of which were clear. My foot was about 3 times the normal size, and incredibly painful. I couldn't walk without crutches. It was clear something was wrong, but nobody could figure out what. Finally they tried a bone scan. My entire foot lit up like a Christmas tree.

I was sent to a rheumatologist and looking at the results of all my tests, his exam, and my bone scan he diagnosed me with RSD. I had all the classic symptoms: swelling, pain, hypersensitivity, temperature changes (which I couldn't tell) and some pinkish discoloration.

Now my story gets a little complicated. Originally the theory was that I got RSD from a stress fracture during my hike. However, six months after being diagnosed with RSD, I was diagnosed with Psoriatic Arthritis, which is an autoimmune inflammatory arthritis similar to rheumatoid arthritis, but undetectable on a blood test (you can test for a genetic factor, which I have, but that's not a guarantee you have it). My rheumatologist thinks I had PsA for years before my official diagnosis. Now the theory is that my undiagnosed, thus untreated and uncontrolled psoriatic arthritis caused the RSD. Rheumatoid Arthritis can also caused RSD.

I had RSD for about a year and 3 months before it went into remission. It was one of the worst years of my life. Because I had so much swelling in my left foot, I was immediately put on a large blast of prednisone, about 60 mgs for a month. It was slowly tapered over a 6 month period. I also took neurontin. They tried other similar medications. I went to physical therapy 3 times a week. I didn't notice that the neurontin made one bit of difference. The large blast of prednisone helped, but as soon as they tapered the dose to 20 mg and under, I went right back to being in pain.

Over the next year I took a variety of different NSAIDS. I delayed going to grad school by a semester. Finally in July of 2004 I had two separate sympathetic nerve blocks. The first nerve block gave me relief for about 2 weeks. The next nerve block kicked it out of me completely. Eight years later, the RSD is back in my left arm, but I got EIGHT YEARS of remission. I know I'm lucky for that, since some people never get a second.

Thanks for sharing your story. You are an inspiration to me. I hope you are doing OK with the relapse and that it soon goes into remission. Gentle breath of a hug to you!

Mara



QUOTE=KathrynL;883703]My RSD is back, but I was in remission for eight years, so I can tell you what I did to get there.

I was diagnosed with RSD in my left foot in 2003 when I was 22. I went hiking the week before my college graduation. The pain started in my big toe, but quickly progressed to all my toes and then my entire foot. The docs did multiple xrays which showed nothing. I had multiple blood tests for lyme, lupus, rheumatoid arthritis, HIV and gout--all of which were clear. My foot was about 3 times the normal size, and incredibly painful. I couldn't walk without crutches. It was clear something was wrong, but nobody could figure out what. Finally they tried a bone scan. My entire foot lit up like a Christmas tree.

I was sent to a rheumatologist and looking at the results of all my tests, his exam, and my bone scan he diagnosed me with RSD. I had all the classic symptoms: swelling, pain, hypersensitivity, temperature changes (which I couldn't tell) and some pinkish discoloration.

Now my story gets a little complicated. Originally the theory was that I got RSD from a stress fracture during my hike. However, six months after being diagnosed with RSD, I was diagnosed with Psoriatic Arthritis, which is an autoimmune inflammatory arthritis similar to rheumatoid arthritis, but undetectable on a blood test (you can test for a genetic factor, which I have, but that's not a guarantee you have it). My rheumatologist thinks I had PsA for years before my official diagnosis. Now the theory is that my undiagnosed, thus untreated and uncontrolled psoriatic arthritis caused the RSD. Rheumatoid Arthritis can also caused RSD.

I had RSD for about a year and 3 months before it went into remission. It was one of the worst years of my life. Because I had so much swelling in my left foot, I was immediately put on a large blast of prednisone, about 60 mgs for a month. It was slowly tapered over a 6 month period. I also took neurontin. They tried other similar medications. I went to physical therapy 3 times a week. I didn't notice that the neurontin made one bit of difference. The large blast of prednisone helped, but as soon as they tapered the dose to 20 mg and under, I went right back to being in pain.

Over the next year I took a variety of different NSAIDS. I delayed going to grad school by a semester. Finally in July of 2004 I had two separate sympathetic nerve blocks. The first nerve block gave me relief for about 2 weeks. The next nerve block kicked it out of me completely. Eight years later, the RSD is back in my left arm, but I got EIGHT YEARS of remission. I know I'm lucky for that, since some people never get a second.[/QUOTE]

I initially had a fracture that was wrapped too tight from a fracture. The tight wrap caused serious nerve trama that is expected to fully heal in2 months. The, I developed unbearable foot pain - intense burning, aching , inflamed feeling. I could not walk or drive. Mt dr. Diagnosed me with chronic regional pain syndrome. I was in beginning stages, so prognosis was good. I just had my second lumbar sympathetic block and hopeful this will cure me. the initial sot showed 70 %. improvement in my overall foot. Took down swellin, burning flareups were gone. I am hopefully I will beat this thing completely. I am doing upper body cardio 4x week and water therapy every day for 30 min. Taking gagapentin and motrin too. I have been terrified through all this, but have found was to calm myself, which has helped as well.

where is the ulnar nerve..im newly diagnosed..4 and half months progression.. and looking for any ideas on getting control of this before it worsens..pleeeeeeeease...i ask about the nerve because even when i get the movement back in the ankle/foot argh..under the foot,little toe side,about quarter way up theres a point of argh..that doesnt got away even with the tramadol ,could it be trapped nerve..what nerve,muscle,tendon, whatever is in this area..that could be damage..any info would be sooooo great.x

The Ulna Nerve is in the arm Bevikins.

It runs along the underside of the arm and also involves the little finger, ring finger and part of the middle finger.

I would like to keep this thread active and invite members to please come back and share with us what type injury they had and how they succeeded in gaining remission or full recovery from RSD.
Thank you!

My 14 yo daughter was diagnosed 2 years ago with RSD in both of her legs hips to toes, the MD’s feel she she got it from a virus. Since the beginning she has been hospitalized 11 times, had 6 Ketamine infusions, 2 sciatic nerve blocks, 2 epidurals, Lidocaine drip, IVIG, botox injections, high dose IV steroids and has taken all medication indicated for this disease. We live in Sacramento, CA and although it is a big city, there is NO ONE that knows how to treat her. We finally got hooked up with Stanford Pain Clinic, and Dr. Eliott Krane about a year ago and the team at Stanford has helped us move in the right. The treatment that worked for my daughter was intensive therapy, OT/PT/Psychotherapy. She is still struggling, but she is off all narcotics, is going to school part time and functioning at about 50%, which is better than before at 0%. This disease sucks! It scares me that when she is older and has this much pain she will resort to doing things that are not good, and could harm herself. Does anyone have any similar experiences that can share how you are coping and how your child or loved one is doing? Thank you

I have never posted on a forum like this before but if this can help one person it will be worth it. Over 2 weeks ago I broke my left leg in 2 places and my left ankle. I won't go into all the details but truckloads of pain relief (without relief) and 1 week of not being able to even think because of the pain I was diagnosed with CRPS. I had never heard of it before so googled it and cried for 1 whole day. They put me on a ketamine drip for 2 days which helped me think a bit more clearly. That was one week ago. My pain relief team were brilliant. The head anesthetist told me on day one of diagnoses that being upset makes the pain worse and that I had to feel calm for the best possible result. He advised me to meditate and that so much of this is connected to the mind. On day 2 - after diagnosis I decided that no matter what, I was going to fully recover. Having CRPS was not an option for me and only health was. I have never been more determined about anything in my whole life. I told the doctors I would be home from hospital by Saturday and that I would be fully recovered. They tried to advise me of the negative things that could happen when the drip came off and that I shouldn't get my hopes up about leaving hospital so soon. I told them I didn't want to hear. They told me that I had to have a spinal block and I told them I wouldn't need it. The day the drip came off I imagined all day what it would feel like to have no pain (apart from the normal fractured bone pain). I practiced the feeling of being healthy. I wrote pages about all of the good things that happened as a result of breaking my leg as I have never appreciated my life this much ever. I started to know that I would be fine. They took the drip off at 8.20pm and after I watched the clock for 30 minutes I cried and cried with relief and joy as I knew I was cured. There was no pain. I did it. The doctors came the following morning and saw me beaming from ear to ear. I went home that evening on my crutches. I've been home for 3 days now and I'm fine. I still have the recovery of my ankle and leg but I can do it easily. I fully intend to be running within 4 weeks and when I go to see my surgeon in a month I want him to be scratching his head in surprise as I'm not even supposed to be walking by then.
I am a very positive person and I was so determined to do this. I know that the power of the mind is beyond the power of everything. I believe that with our thoughts we emit vibrational signals and we live the result of these signals. The only signal I gave off after my diagnoses was health. Nothing else was an option. I kept telling myself I was cured. It worked and I expected it to. This might seem far fetched and not for everyone but each to their own. This worked for me and maybe it can show someone that it's possible to recover quickly no matter what the diagnosis is or what your doctor might say.
Happy recovery to all of you readers - how would you feel if you were cured ??
Liz

My daughter is 13 and was diagnosed 9 months ago. It sounds like the same thing that has helped your daughter has helped mine - lot's of exercise and psychotherapy, mostly aimed at taking her focus away from the pain. Her breakthrough came from an intensive program at Mayo Clinic in MN. She is in the school full day (something that Mayo absolutely insists on), but very much wishes she could just go half day. In terms of coping, I find I do better when I am able to balance the amount of time I focus on her issues (i.e. researching, spending time on this forum, taking her to appts, etc) and doing other things (working, having fun, cleaning the house). It's not good for either of us when I get sucked into her illness, but sometimes I do. I know that's probably not much help, but I at leasted wanted to let you know you're not alone.

Lori