Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-07-2010, 03:43 PM #1
lisa6262 lisa6262 is offline
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Default New to RSD...

I have CRPS Type II. It started with morton's neuroma surgery. My pain is in my foot, but because I walk with a limp I have severe sciatica as well. I am unable to take pain killers (only NSAIDs). I am considering going to the RSD clinic in Tampa. Any suggestions or comments I would appreciate. Help and understanding is hard to find with this disease as I am learning. By the way, this is the first time I have joined a forum...please forgive me if I'm doing this wrong.
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Old 09-07-2010, 04:33 PM #2
SandyRI SandyRI is offline
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You did it perfectly right. And you came to a wonderful place. I would also highly recommend the RSDSA.org website - there is some gret research articles there and links to other RSD sites.

So sorry about your foot. The very best thing you can do is find an RSD specialist ASAP. Others here on this board have seen Kirkpatrick in Tampa and have good things to say about him (I'm fairly certain...).

Read as much as you can!! There is a lot of good info in some of the older postings here on this board.

And do you have a PT that can help you with your gait and the sciatica? Just a thought....

Welcome to the forum, we are happy to have you. XOXOX Sandy



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Originally Posted by lisa6262 View Post
I have CRPS Type II. It started with morton's neuroma surgery. My pain is in my foot, but because I walk with a limp I have severe sciatica as well. I am unable to take pain killers (only NSAIDs). I am considering going to the RSD clinic in Tampa. Any suggestions or comments I would appreciate. Help and understanding is hard to find with this disease as I am learning. By the way, this is the first time I have joined a forum...please forgive me if I'm doing this wrong.
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Old 09-07-2010, 07:21 PM #3
edever34 edever34 is offline
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Welcome-You are in the right place with people who truely care and help where ever we can . Do lots of research and come here often! Fondly-Carol
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Old 09-07-2010, 07:34 PM #4
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Help Welcome Lisa..

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Originally Posted by edever34 View Post
Welcome-You are in the right place with people who truely care and help where ever we can . Do lots of research and come here often! Fondly-Carol
Nice to meet you, Lisa..

I am sorry for your RSD dxnosis.. RSD is very mysterious and complicated..Many of us here and we all care deeply about our friends..Glad you came to us... Yes, if possible, go to the clinic as time is of the essence.. please, educate yourself as much as possible and the website Sandy recommended is a wonderful place to start.. I, too have a very painful gait, I walk with a decorative cane, I have many of them..it's important they match m outfits.. my rule!.. RSD began with my Rt. knee following surgery then mine spread into whole body RSD..Please, be proactive in search of a neurologist, anestisologist and or a Pain management Dr...I, too am unable to withstand pain meds..so I am cold turkey RSD for 3+ years..it can be trying but I try to stay sane inspite of the intense pain..Many interventions available such as nerve blocks..tens units.. advanced RSD, Spinal cord Stemulators and Ketamine treatments.. most importantly is to find a knowledgeable Dr. well versed in RSD and educate yourself and be your own best advocate with this illness....

You will have much support here .. we are a close family who care a bunch so plz. ask away...we'll do what we can to help you..

Hugz, Kathy
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Old 09-07-2010, 08:20 PM #5
Lisa in Ohio Lisa in Ohio is offline
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Welcome Lisa, I am so glad that you found this forum, it has been a great source of support for me. It is a great place to ask questions about this disease and to learn about it. My advice would be the same, find a good doctor fast, one that you can develop a good rapport with. There are many treatment options available. I hope that you can tackle this beast early and find remission for your foot. Hopefully if the pain can be eased your gait will straighten out and help your sciatica. Glad to meet you, but sorry that it is through the commonality of RSD. Lisa
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Old 09-08-2010, 07:50 AM #6
Jimking Jimking is offline
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Quote:
Originally Posted by lisa6262 View Post
I have CRPS Type II. It started with morton's neuroma surgery. My pain is in my foot, but because I walk with a limp I have severe sciatica as well. I am unable to take pain killers (only NSAIDs). I am considering going to the RSD clinic in Tampa. Any suggestions or comments I would appreciate. Help and understanding is hard to find with this disease as I am learning. By the way, this is the first time I have joined a forum...please forgive me if I'm doing this wrong.
You have an advantage in that you are in Florida. I would most diffenately go to the RSD research center in Tampa. I believe it's the only one of its kind in the world.
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Old 09-08-2010, 08:41 PM #7
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Hi Lisa,

Welcome to NeuroTalk ! So sorry to hear that you have been diagnosed with RSD but glad you found us - you will find lots of help and support here !

I also have RSD. It affects my left leg and both arms. I got it when I was 12 years old after an ankle sprain and am now 15.

I agree with what the others have said, make sure you find a good Pain Management Doctor or Neurologist that knows about RSD. It took me ages to find a doctor that knew about it but was soo worth the search in the end!

PT is really important. It's important with this disease that you move as much as possible, though be sure not to overdo it also as that can cause more problems - you have to find the right balance. Again, find a PT that knows about RSD and chronic pain. I've been in PT since I was diagnosed. I spent 13 months in a wheelchair after losing coordination in my legs and 3 weeks of intense PT got me back walking short distances. I'm not going to lie and say it was easy - it weren't and was extremely painful but helped so much being able to walk and have a bit more independence ! I still have LOTS of pain (averages on a 7-8 out of 10 on a daily basis) and do home exercises at home as well as PT.

Have you looked into the Hyperbaric Oxygen Chambers seeing as you can't tolerate medications? I know some people with RSD that have had it and found it useful ... its even put some into remission ! Everyones diferent though.

I do hope you feel better soon. Know that you can come here and talk any time - were here for you!

Alison x
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