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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)

anyone have RSD after an injury?

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Unread 07-10-2009, 01:45 PM   #21
overcomer
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hi again,
just joined yesterday - I was dx w/rsd 6/2008 following surgery - had 2nd opinion as was workers comp case and lawyer suggested 2nd opinion - as I woke from surgery in full blowned stage 111 rsd, lawyer wanted to know what happened - per 2nd opinion, apparently, surgeon positioned arm in incorrect position so immeditely went into this disease - as you know it takes months to get into contractures of fingers but my fingers where stiff and I have not been able to move them since day of surgery - surgeon covered it up in notes saying I was doing well but occp therapist had to chart correct condition so there was very conflicting notes on my file and to this day surgeon has said I have this disease due to lack of therapy but I started therapy as soon as the bandages came off - needless to say, I am distraught as I feel like there is nothing I can do even though condition was caused by md error - I joined this site in hopes of some help and support - thanks to anyone that can help -
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Unread 08-20-2009, 04:56 PM   #22
CaroleStaat
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Quote:
Originally Posted by msdrea83 View Post
yes, i was on ketamine orally for almost 3 years, then was denied the coma treatment, but i found a doctor in la that did the ketamine infusions. i've had two. the first one put me in full remission for approx 6 weeks. and i had a 2nd at the end of april... so its been... about 2 and a half months now of full remission and still going *fingers crossed*. the doctor is dr. thomas leverone. i have his contact info if you're interested. or message me and i can give you more info. until there's a cure i don't plan on not having more infusions when/if my pain comes back. its wonderful to wake up and be "normal" again.
Andrea, Could you please send me more information on Dr. Leverone. I live in Washington State and my best friend has RSD which has progressed into her upper body and left leg after having surgery to implant a device to help her breathe. She is not able to sit at a computer and do research herself so I am doing this for her. I am looking into the Ketamine treatment after reading an article in People magazine. I started to read postings and am learning that this treatment (not coma but low dose infusions) would help her as she is at a point where she thinks she can't go on. She has two children and a very supportive husband and I want her to know there is something out there that may give her some relief. Please help!
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Unread 08-20-2009, 05:59 PM   #23
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I was working for a blasting company and sprained my left knee badly. It wasn't dx'd until 2008, and it happened in 2003. Lucky for me, I had to pay child support, so I couldn't take off work, just percocet on through. I believe this kept my pain and any spreading at bay, and it went into what I call remission twice during that time. Then in 2008 it went nuts and made me scream and see colors, etc, so I had to get it looked at again. I actually started to believe the idiot docs that told me I was just a junkie looking for a fix, in that I thought maybe it was all in my head. Well...it took the specialist about five minutes to dx it, and that was that. As what research I've read shows me that any intrusive procedures are worthless and more likely to cause harm after the first three months I have refused them all. Believe me, this has annoyed the goofy pain management folks more than you can imagine. (A patient knows more about a rare condition than I do! How dare they!) lol...now I'm starting Methadone on top of Soma (muscle relaxant) Serax (benzo class tranx) and Welbutrin (antidepressant, 'cause I'm sad I hurt all the time) So far so good, seems to be keeping the pain at bay, thus far. I am concerned as the PM doc seems to be totally against anything for breakthrough or upping the dose if needed later. Wondering if he's not one of the goofy ones, or thinks that a) it's all in my head, not a real condition or b) I'm a junkie. Praying for the best. Good luck to us all, may a cure be found, I sure would love to be able to run to catch my little man when he's playing...
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Unread 09-24-2009, 12:30 AM   #24
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Hi! yes, i ended up with rsd in right hand and shoulder after shattering my right arm in a horse accident in march 2009. most of what i've read on this site is about rsd in the lower extremeties, back, etc. does anone have it in the hand?

yesterday was 7 months since my accident. every day is such an incredible challenge as i am only able to use my left hand since i have basically no function in my right hand.

i admire all of you that i have read about who have been suffering for years ...i am so frustrated and it's been nowhere as long as all of you. my biggest frustration is finding a doctor who can help me here in south florida, but i am willing to travel anywhere.

g-d bless all of you and please excuse my poor 1 handed typing.

T.

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Originally Posted by heartbeatmom View Post
I have it, injury to my ankle. I was just wondering if anyone else got it after a trauma....I'd love to hear your stories. I'm losing my hope in getting better.
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Unread 09-24-2009, 11:32 AM   #25
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fishbone1; I have RSD in my left hand and it has now spread up my arm into my shoulder. This was a wk injury Dec 08. i spent 6 wks in a cast and another 4 in a splint. Then I was sent from the orthopedic who suspected RSD to a hand specislist who diagnosed RSD and sent me to a pain mgmt Dr. No meds in beginning, had 6 stellate ganglion nerve blocks that gave relief for 10 days then it all returned. Now I take Cymbalta and Lyrica. It helps but I do have flares. I have a bad feeling about winter. I currently don't wk since an FCE says I can't do what I used to do so now I wait to see what wc will do.
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Unread 09-24-2009, 06:49 PM   #26
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I injured my left ankle in an accident at work- the xrays and MRI were clear, and they told me it was a sprain. 18 weeks later, when they finally referred me to a podiatrist because of continuing pain/swelling/discoloration, he diagnosed me with RSD (which I had never heard of before that), and referred me to my pain specialist. It's been 3 years since that happened.

I don't know if you can "beat" this by getting rid of it, but there are other ways of "beating" it. Don't let this get the best of you! Keep your life going like you used to, doing what you love with people you want to spend time with. Keep a smile on your face, and a positive outlook. By doing these things, and not letting the RSD take over your life, you are "beating" this. We are hear to listen if you have a bad day, and here to cheer with you when you have the good days!
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Unread 10-06-2009, 11:56 PM   #27
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Default RSD after injury

I had an injury to my foot back in May 2004 and developed rsd in the foot and leg. I was terrible. I was walking with a walking boot and cane, or in a wheel chair. I couldn't stand anything touching my foot or leg and was on Neurontin and fentanol patches. Nothing was working. I had 2 sympathetic blocks in my back and one directly to the foot...nothing happened. After the 3rd block there was a change. I was able to start putting pressure on my leg outside of the therapy pool.

Don't give up hope. After about a year and a half from the original injury I was feeling much better. Never completely pain free, but able to control the pain with Advil only, and able to return to my old life by August 2005.

Of course August 2006, I was in a car accident hit from behind, where I jammed my leg/foot and pulled/strained my neck and pinched a nerve.

My leg immediately flared and I was place back on a regiment of pain meds/ not as significant as fentanol, but still narcotic. I did have three more blocks but the Doctors feel that my RSD has changed to "sympathetic independent" whatever that means...basically I won't respond to blocks. But I am functioning. My meds allow be to be somewhat "normal" I can't do my old job anymore, but I am not in a wheelchair either, so I am all too happy.

Just last week I had a thermogram, and it showed that thanks to the wonderful car accident and injury to my neck/upper back. The RSD has spread to my neck/arm/shoulder/upper back on the one side. I don't have the extreme pain as in my leg, but am trying to keep that from happening.

Don't lose heart...If I could come back from where I was after the first injury anyone can...they weren't even able to touch my leg/foot with a tiny fiberoptic wire, it felt like they had stabbed my foot with a 12 inch knife. Don't lose heart..surround yourself with the best doctors in your area, and a PT who is knowledgable in PT (if they don't understand the disease they will push you too hard which will only result in a further flare...believe me I have been to enough of those)...and good luck...Keep positive, and tell yourself that you own your life not the RSD. I know how hard it is sometimes, but keep moving forward and try to stay as positive as you can! Let me know if you need anything. We are all here to support each other!

Take Care.
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Unread 10-15-2009, 01:39 AM   #28
dessteele
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Default Emotional Stress + Metal = RSD

My diagnosis: 2005. The background: My daughter had arranged a private adoption of a newborn, and went through the pregnancy and birth of the baby. She was in the room when the baby was born, and the birth mother handed the baby over to my daughter, who had a room in the hospital. 14 hours later, the birth mother took the baby back. My daughter, who has only ever wanted to be a mom, was overwhelmed and I became concerned that she may do something drastic, so I flew from NJ to OK to be with her for a week. On the way to the airport to come home, I cut my right heel on a piece of metal in the back seat of my daughter-in-law's older vehicle. When I noticed it a few hours later, I washed it and put a bandaid on it and didn't give it another thought.

About 2 weeks later, my right foot got cold and over the course of the evening spent in the ER, I couldn't stand air, touch, blankets, etc. on my skin. It took about 2 weeks to get a diagnosis, and the rest, as they say, is history.

My 2nd doctor explained that he'd seen several instances of a minor metal-related injury sustained while under extreme emotional stress leading to RSD. Other docs have remarked that it's unusual. I'd be interested to know if there are others who have the same history.
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Unread 10-15-2009, 04:43 PM   #29
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Laugh Andrea that is such good news!

Quote:
Originally Posted by msdrea83 View Post
yes, i was on ketamine orally for almost 3 years, then was denied the coma treatment, but i found a doctor in la that did the ketamine infusions. i've had two. the first one put me in full remission for approx 6 weeks. and i had a 2nd at the end of april... so its been... about 2 and a half months now of full remission and still going *fingers crossed*. the doctor is dr. thomas leverone. i have his contact info if you're interested. or message me and i can give you more info. until there's a cure i don't plan on not having more infusions when/if my pain comes back. its wonderful to wake up and be "normal" again.
Andrea just wanted to say I am so happy for you that the ketamine infusions are helping you so much that is so so so wonderful!!!!!! I am so happy to hear some good news. thanks for sharing, cz
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Unread 10-15-2009, 09:32 PM   #30
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Default Anyone have rsd after an injury

O yeah!
See my post in the OUR STORIES sticky. Cannot re-type tonight
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