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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)

Full recovery from RSD/ CRPS

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Unread 06-19-2012, 03:25 AM   #71
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Originally Posted by bevikins View Post
where is the ulnar nerve.
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.

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Unread 08-21-2012, 08:14 PM   #72
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Default Full recovery from RSD/ CRPS

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!
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Unread 08-21-2012, 11:39 PM   #73
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Originally Posted by sallysue View Post
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
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Unread 09-03-2012, 04:23 AM   #74
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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
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Unread 09-05-2012, 01:05 PM   #75
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Originally Posted by Happyme View Post
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
Liz, I'm very glad you are out of pain!! However, be extremely careful getting back on you feet again. Take it very easy because it could come roaring back at full force. I've read similar stories and the RSD came back because, it seems, the patient became hasty and pushed themselves and re-injured causing the pain to return.

Reading your story certainly gives hope that in this world there are doctors that know what they are doing right at the onset of this disease. They sound like a great team of doctors.
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Unread 09-09-2012, 05:56 PM   #76
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I have completely recovered from RSD but I guess the question really is, " did I really have RSD or not?" Let me tell you my story and you can comment on what you think about it.

In 2001 I stood up from my chair at work and my left ankle just collapsed under me. This had happened many times in my life since an initial ankle sprain when I was 14. This time the sprain didn't seem that bad- not much bruising, not a huge amount of swelling. I just figured it would get better like my sprained ankles always did.

This time was different. The pain started to spread up the side of my leg. 1st to half-way up to the knee then further up my leg. Within 6 weeks I was diagnosed with RSD and referred to pain management.

I went for 2nd, 3rd, 4th, 5th opinions while getting lumbar blocks and doing everything a "newly diagnosed" rsd patient was supposed to do. All other doctors agreed with the RSD diagnosis. Clear cut case with all the symptoms except never swelling.

4 yrs passes and I keep trying everything I can. HBOT, accupuncture, week long epidurals, ketamine, more drugs than I care to remember, herbology, cranial sacral, applied kineisiology, I can go on and on with what I tried.

I am also being seen by 1 of the big-wig RSD doctors, Dr. Daniel Carr. I have shrunk from 125 to 101lbs and look like hell. The pain has spread up my entire left side including my face, eyelid, nose and ear, left arm and right foot and leg. I am suicidal at times and find great support from my family of RSD friends who post on a forum just like this one.

Then my doctor informs me that he will no longer be seeing patients and is off to teach the world about RSD. I must then find a new doctor. No small task after seeing so many previously over the past yrs.

I go to a new doctor who is recommended by my chiropractor. He believes that my diagnosis of RSD is not right. Doesn't know what it is but says that this doctor friend of his is like a medical detective. So, I go see her.

She tells me that she has had 8 patients in her medical career who were diagnosed with RSD but who had nerve entrapments in their ankles all due to ankle sprains. She thinks I am her 9th patient. This theory is not news to me because I had been telling doctors for years that I had 2 trapped nerves and could name them!

I had trapped my ulnar nerve in my elbow 20 yrs earlier and my pain felt EXACTLY the same just in my ankle not my elbow! I had 4 operations to fix that problem but back then doctors would do "exploratory surgery" where now malpractice is a much bigger deal.

Anyways, her plan was to do nerve blocks on these particular nerves. The EMG I had didn't test these particular nerves so it was negative. She needed to proove to surgeons that these nerves were trapped and needed to be surgically freed.

While I awaited my next appointment, which wasn't for another month, I went to my chiropractor in tears because her exam of my foot made the pain so much worse. I was back on crutches and could not bear any weight at all. Once I told him that the theory was entrapped nerves he said that he could "traction" my foot(move and spread all the bones) and move the tallus bone on top of the foot and few other things. He did not know if this would help of not but it was worth a try. He works for the NE Patriots football team and does this adjustment to the players on the field when their feet get mangled.

Within 10 days of his 10 minutes of work on my foot, ALL of the RSD symptoms disappeared. I awoke on day 11 with that "feeling" gone.

It has taken 2 full years of rehab and intense pt to gain back all the muscle lost to atrophy but I finally have been discharged from medical care and began working again fulltime just 2 weeks ago. I no longer have any pain anywhere in my body. It was a long, frustrating hard road but I made it.

My medical records state that "It is a miracle" but I'm not sure I beleive that. The medical explaination of my rsd symptoms was that because the nerves were trapped, my nervous system became hyperactive which causes the host of rsd symptoms. In a sense, I had a "curable" type 2 RSD. They had thought that I had nerve damage when I really had nerve entrapment that could be fixed. I knew it all along but no one would listen to a mere mortal without an MD!

So that is my story of recovery. I have been put in contact with another woman in Canada who recently had surgery to un-entrap 4-5 nerves in her foot and she too has awoken with the rsd-type pain gone. She's got a long road ahead of her but when she woke up she said the pain was totally different. That is how I felt after my surgeries on my ulnar nerve over 20 yrs ago. There is also many case studies on rsd and nerve entrapments now in 2006 but in 2001-2004 there was nothing out there published.

Questions that I still have:

- did I have RSD or not?
- was it really the chiropractic adjustment or was it a combination of all the therapies I tried?
- did my use of ketamine play any part?
- would my RSD have resolved itself if my chiropractor didn't make those adjustments?
- why didn't all of Boston's Best Doctors figure this out sooner?

That's it in a nutshell. Unfortunately, the forum that I used to post to(braintalk) crashed and does not have all of the hundreds of posts available for you to search thru and read. I was very active and posted alot about all of my experiences with the different alternatives that I tried.

I would be more than happy to answer any of your questions or help you in any way.

I am hoping that if just 1 person recovers because of my story then maybe, just maybe the suffering I endured for so long will be worth it in some strange karmic sort of way.

Peace and HOPE to you. Never give up trying to find YOUR cure.
Lisa
I am new to this but have serious doubts that you had rsd. There are so many patients out there that are told so many things it is scary. Have you ever had your blood tested for minimual infection?
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Unread 09-10-2012, 02:07 PM   #77
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I am new to this but have serious doubts that you had rsd. There are so many patients out there that are told so many things it is scary. Have you ever had your blood tested for minimual infection?
Just a little fyi.... lisashea has not logged in since April 2008, so you may not get a response.

I wish you the best!!
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Unread 09-17-2012, 08:20 AM   #78
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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

Quote:
Originally Posted by momofrsd View Post
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
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Unread 09-17-2012, 09:44 AM   #79
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I sure would want to hear from you too about this. I have RSD in left foot, ankle and calf. I so much want to be free of it. ginnie
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Unread 09-17-2012, 09:54 AM   #80
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I don't know, maybe this is what happened to me. I sprained my foot badly, and was misdiagnosed with anterior tibial tendon disfunction(2years). The burning started. I then had two ganglion cysts removed, that were deep into the structure of the ankle. At last I went to a orthopedic surgeon, who told me I have three torn tendons. Including the archilles, one on the right of the foot, and one on the left, which colapsed my foot. Nothing seems to stop the pins and needles, burn, but I do have a lotion with Katemine in it that helps. Is there any other kind of specialist who might examine me? The ortho would not do the operation to correct the structure of my foot, for fear of making the RSD worse. I am stuck. ginnie
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