Hi,

I'm from Europe where awareness on RSD/CRPS is fairly non-existent.

I have RSD/CRPS for almost 14 years. I developed it due to a car accident where my knees hit the dash (chondromalacia patellae). It spread to my legs fully as I wasn't diagnosed for almost 3 years. There's a long history behind this that I won't bore you with, but it was *hell*.

Last year, the RSD/CRPS spread to my arms/hands spontaneously. I have no clue why.

My treatment consists of Neurontin (2700 mg/day), Buprenorphine pain patches and sublingual Buprenorphine for breakthrough pain. I am also undergoing treatment for my hands/arms, which consists of Calcitonine injections. They are able to keep things stable (so far, fingers crossed). My hands do twitch and hurt, but I'm keeping hope alive, hoping it won't progress to a further stage.

I was on this board years ago, but couldn't find my username & password (back then it was Braintalk communities), so I reregistered. Most of you won't remember me, I guess.

I am happy to be here nonetheless!

Hugs to all of you.

This forum is Neurotalk. Different from Braintalk.

I do want to say welcome.

As far as awareness, I think the US is getting more aware of it, they just don't know how to deal with it.

I am glad they are able to keep it stable for you. That's a feat in itself for a lot of us.

Glad you found us.

Ada

I too spent time on the BT forum. I have had CRPS for 20 years in July. I am also please to hear that you are stable at this time. I also would like to extend a warm welcome to NT. I look forward to getting to know you. There is a great suportive group here. Di

Hi CRPS, Just want to welcome you and hope your symptoms remain quiet. Its great when you can get to that point. The Drs you have seem to be helping you pretty well. It's very difficult to find the right combo sometimes docs/treatments. NT has a lot of Veteran RSDers here. They have a lot of experience with diferent treatments. This has opened up other options for me in the future if I need them. Take care and nice to meet you.

Debbie

I'm sorry to hear that you have not been able to find the help you need to treat your RSD/CRPS. Unfortunately the flow of information on research and available treatments isn't always so easy to access across international borders. I went from Canada to Germany for treatment, and very happy with the outcome. I have learned that there is a small but knowledgeable international group of about 30 some odd researchers/doctors working very hard on our disease. While there are no defined answers (yet) I do know that they are sharing this information and more and more patients are getting help. This is a good thing. This forum also has some great potential to help patients and caregivers help themselves. Welcome to our forum, I'm happy you have found us.

MsL

Thanks for pointing that out Ada. I registered on both forums now with the same name. Hope I can reconnect to the RSD community.

My legs seam fairly stable, they are a stage 3 after almost 3 years of not being diagnosed, but the meds keep it in check (it's hell nonetheless). I have to use a wheelchair to go places and that took getting used to (it still does). I got intense fysiotherapy for my muscles and they actually came back a bit (my upper legs were thinner than my calves).

My arms are unstable, unfortunately. I am on Calcitonine injections now continuously, because it's the ONLY thing that helps. If I forget an injection, my hands start to stiffen up, the right hand especially... so that's still a fight in progress I'm afraid.

But I keep on being optimistic about it, not much else I can do, right?

Happy to be here!

Did you try PT for your arms and hands. Mine started in my arms and hands and back and I had 7 different PT'ers and 4 of them were very good. My last ones was a husband and wife team who had studied in Holland and they are the best around here.

If they know about RSD they can help you. If you get some that don't know about it they can make it worse.

Also I use heating pads a lot and I also use lidocaine patches when needed.
They are prescribed by Drs. They seem to help some people.

Also a lot of people like epsom salts baths. They don't help me but they help some.

I don't think I could inject myself. I was so glad last year when my diabetes test came back ok.

I do hope you find something that helps with your arms and hands too.

Ada

I had disastrous results with PT for both legs. Actually my upper leg muscles just wasted away more during those 8 months of PT. The PT couldn't hang weights on my feet to help strengthen the muscles - I squeeled in absolute pain, so he had to use a kind of electrostimulation (pads on upper legs and current - painful as well). I wasn't diagnosed at the time. Later on a fabulous orthopedist said to quit the PT at once! Everything crammed into half an hour was too much for someone with RSD. I needed gradual soft exercise throughout the day. So he gave me one exercise to do the whole day through in small steps (towel underneath upper leg, straighten leg and lift heel off of bed). I did that one exercise for 3 years to get some musculature back in my upper legs and boy did I persist (I could barely hold my own weight at the time) for three years, throughout the entire day (in intervals, 3 times a day, sometimes 6 times but a few lifts). Every single day!!!

I keep as active as possible with the arms and hands, doing small exercises. I am not afraid to move, but only thanks to the injections that work though! If I miss one injection my hands (esp. the right one) start to stiffen up and the pain increases.

I know how the RSD operates in my body, I know after almost 14 years which meds work and what doesn't and won't work. I am only hoping for some stability in my arms and hands. I can't skip my injections, it's all still very active. It's one day at a time, and each day is different and a new struggle. Typing is a huge effort for me.

PT without medication is an absolute horror, I know that much. It won't stop RSD from progressing. At least it didn't in my case!

I do agree with you on the PT. I had 3 Physical Therapist that were horrible. One wanted me to do weights and other things I couldn't do. He eventually lost his job over how he was doing people. I had 2 others together that said that they might make me worse before I got better. My PCP said, no way on that. He said I might get worse and not get better.

But my other 4 were great. My first two moved on to other things and then I went to the couple and I loved them. They worked on me for a year. I did no exercise at all.

I'm like you, after being sick since 87, not just from RSD, but other things, I have gotten to know my body and what works and what don't. Too bad the Drs. don't always listen to us.

It doesn't stop RSD from spreading though.

Ada

Finding great PTs (as well as doctors) is a fight onto its own. I keep telling people who ask me to go see a pain specialist. They at least know what RSD is and are able to know it when they see it, and can help with treatment. Additional specialists can help. In my country, it takes an orthopedist to prescribe PT for RSD, otherwise it's not refunded. The government somehow believes that only orthopedists know about RSD (and that brings about a whole set of disastrous problems when they look you over for disability). Well, in those (almost) three years that I went undiagnosed I saw lots of different orthopedists who just didn't notice! It took a neurologist to notice. So there you go... what can you do? It takes a whole slew of doctors, and it's so hard to even get help in the first place. Those years before treatment were hell! Applying for disability with the doctors they have looking you over is like a lottery! Many don't even know RSD when it hits them in the face.

The spreading is horrible. I don't even know how it spread to my arms/hands. Last year, it suddenly kicked in, just like that. I had RSD for 13 years then, and after all those years, my arms and hands just somehow got affected.