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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) |
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01-14-2007, 05:04 PM | #1 | ||
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Hi Vanessa,
The RSD support group letter that had the link to this group also had a link to a great article: Applied Neurology magazine October 2006 issue Understanding and Treating Complex Regional Pain Syndrome by Devon Schulyer http://appneurology.com/showArticle....leId=196513289 The Prognosis at the end was the best part: PROGNOSIS Most experts agree that with treatment, most patients can expect their CRPS to improve. "There's a misconception that personal injury lawyers would like to promulgate, which is that CRPS is lifelong and completely disabling," said Harden. With proper treatment, patients could get on with their lives, he said. Because patients go into remission as opposed to being cured, patients need to stay active, engage in physical and occupational therapy, and possibly take medication and continue with other treatments that have helped, he added. Cruciani estimated that with treatment, about 20% of patients go into remission. "Then you have about 40% to 50% of patients who are stabilized. Although they continue to have pain and are uncomfortable, they can function to a certain degree. Then you have 30% for whom it doesn't matter what you do; they're miserable." Oaklander pointed out that she never sees geriatric patients with CRPS; the average age of most patients is about 40, and the prevalence decreases as patients age. "These kind of epidemiologic data are consistent with a disease that does not last forever," she said. "It's one of the things that keeps me optimistic." Check out the article if you haven't already seen it. It closely aligns with my life too, as it does for many and Lisa, GOOD FOR YOU, enjoy!!! ;-> -Sharon Last edited by saburkhart; 01-14-2007 at 05:06 PM. Reason: I wish I could see Dr. Robert Schwartzman but his waiting list is yrs long. He did have a link for finding a doctor close. |
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"Thanks for this!" says: | Burnbabyburn (07-08-2014) |
01-17-2007, 05:55 AM | #2 | ||
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July 22, 06.... i stood up out of bed and had a horrific pain shoot from the middle lower part of my back into my left hip, and down my left leg into my foot.. I then fell down.. Taken to the ER where I had a MRI scan done of the lower body... Found out that I had a ruptured disc in my L5-S1
I have worked as a CNA for 12 yrs... Prior to this incident, I knew I had a herniated disc in my lower back... Had occasions of siatica, but nothing some ibuprofen wouldnt take care of, a trip or two to the chiopractor, and if need be in real bad cases a day of from work here or there.... I should have had it looked into more, but I am a stubborn person and HATE Drs... The Dr from the ER sent me home with some pain medication, I was off work for about a wk, and was going to a chiopractor... The funny thing was it was not my back hurting, the pain was in my left foot and it was VERY severe... The chipractor really didnt want to touch me, my lower left hand side of my back was swollen, and VERY tense... All she really did for me was an electronic type of massage or something along those lines... My supervisor at the hospital I work for suggested I go to a Neuro Surgeon to have my back looked at... I scheuled an appt with him, but couldnt get in right away... My foot was swollen, red/purplish, tons of sweating, stinged, burned, could barley walk on it... The pain was so bad, that I could barely sleep... I live in Houton, TX so it gets HOT... July/Aug humid hot, I had to sleep on the couch because I couldnt sleep in the same bed with my boyfriend with him tossing and turning or have a sheet on me... I had to have a fan on in the living rm but the breeze of the fan made me cry.... I seen the Neuro Surgeon, and he said I needed a lumbar laminectomy... I was scheduled for a out patient surgery within a couple of wks.. At the time I seen him he was not concerned about my foot at all... He said I had symptoms of severe siatica from my ruptured disc in my back and that the surgery should help with it... The morning of my surgery, I was in INTENSE pain with my leg/foot.... In fact the Dr postponed my surgery when he seen my foot... He had a foot Dr and internal mediaction Dr look evaulate me...It was SO bad, that they thought I had a blood clot and ordered a STAT doppler.. Had the doppler and of course it came back negative for a blood clot... Had the surgery, and he found not one ruptured disc, but 3... L3, L4, and L5-S1, along with bone spurs... Sent home, and get this with tylenol with codeine for pain... YAY for me... NOT!!! To follow-up with Dr in a month.... 4 days after my surgery, Im at home and going crazy.... NO sleep, in horrible pain... All I could do was cry! I finally called the internal medication Dr that left me his phone #... When I talked to him, I told him my foot was worse than before... He seen me immediatly the next morning, after seeing him he admitted me to the hospital... I was put on IV antibiotic called Vancomycin, and was given morphine for pain, he thought I had cellulitis... I seen a foot Dr, and another internal medicine Dr... The foot Dr said I didnt have a foot problem... The other internal medicine Dr said I did not have cellultis and discontinued the Vancomycin... She said she thought that with all my symptoms and pain levels that I had a nerve disorder called RSD... Although she could not diagnose it but, knew someone that could... I was then seen by a Neuro-Surgeon-Pain Dr... He evaluated me, and indeed said I had RSD.. I was in the hospital for about a wk on IV steriods, Neurontin, blood thinners, vicodine and morphine for pain... Sent home with a wks worth of steriods, Vicodine, Neurontin, and a Ketamine/Lidocaine compound... Also to go to PT for a treatment called Fluidotherapy... I did what the Dr instructed, and was starting to feel better almost immediatly.... Yes of course I still had pain, but ALOT of it subsided, and the swelling went down tremendously!! Over the next couple of months....Pain would come and go, I had shock like zaps in my foot, pressure in my big toe, tingling, my foot was colder than the other, sweating, bad circulation, discoloration, burning, swelling on and off over time...... My Dr then decided that it was time to start a series of 3 sympathetic nerve blocks... The first one I was numb for about 7-8 hrs, helped ALOT with the pain! The second one I was numb for almost 24 hrs, helped MORE with the pain!! The third one I had done 2 wks ago, I was numb for close to 30 hrs, and had NO pain!!! Seen my Dr for my follow up last Thurs, and he said I am in full remission with my RSD... Although, he still wants me to continue my Neurontin and Lexapro untill I see him in 3 months! I have been pain FREE for the last 2 wks!! I sure hope, and fingers crossed that this continues.... I was diagnosed with my RSD within 1 month of my July 22 incident! I have had RSD for 6 months now... Being told by my DR that I am in remission made my day and then some! I consider myself VERY lucky and fortuante... I am taking my medication, staying active, eating healthy, good sleep ect..... Thank you to all my Drs that have helped me, I have the upmost respect for all of them, they are wonderful..........As so are ALL of you!!!! Finding this msg board back in Sept last yr was the best thing ever!!! I was able to read posts from ppl and it really helped me alot! Thank you! Always -Heidi |
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"Thanks for this!" says: | loretta jewell (11-07-2008), rachel's daugther (05-29-2012) |
01-17-2007, 01:37 PM | #3 | |||
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Heidi that is incredible, I am so happy for you an readin your post right now just made my day, truley.
Thank you so much for sharing that with us, this is such a positive thread i love it... thank you all. hugs, Sandra |
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05-14-2008, 12:48 PM | #4 | ||
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Hello
I have only just joined this site. I found it a while back when I was looking for something positive about rsd. I have to say most of what I found on the internet was very negative and didn't offer much hope. I have recovered from rsd in both knees which spread to most of my legs. I could barely walk. I was in constant pain for 9 months. I am no longer in pain and haven't been for months. I have continued to improve slowly but steadily and am gradually building the muscle strength in my legs back up. I am walking further and further. I can now walk over half an hour before resting. The most number of steps in one day - 16,000. So you see, there is hope. It was quite a journey to recovery and I learnt a lot along the way. I am thinking of writing a booklet, detailing how I did it. Would anyone be interested? Please, don't send any negative, voice of doom and gloom replies. Ness In sunny England |
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05-15-2008, 01:20 AM | #5 | |||
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Welcome to the forum.
I think any of us would like to know how you got to where you are. Any good info is appreciated to help get others to where you are today. I am pretty much in remission today from the RSD but it sure hasn't been an easy road. Mine started around 2000 when I had TOS surgery. I actually think though I had it in 98 from falls I had but the surgery just multiplied it. I went into councelling and was encouraged to walk and pray. My Dr. told me to keep saying to myself as I walked, " God give me strength" and I walked and cried from the pain for years and got good medical care. I can't say these last 10 years have been the hardest because I became sick in 87 but after RSD it seemed my world came to an end. I have gone back to walking. I have found me some good shoes. I bought some curve sandels from Avon that are fantastic and in the winter I wear New Balance. I still walk and cry at times but I think in the end it's worth it. I believe walking is the lesser of the 2 evils. Walking or strenous PT. It would be great to hear your story of how you got to where you are and in just 9 months. Wow. Ada |
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05-16-2008, 08:58 PM | #6 | |||
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ADA,
This gal was just a visitor. Who knows when or if she/he will be back to tell us their story. It was sorta rude to say all that, but to NOT say how she was cured or what they did to become cured in my book. They have to know from all the negative they read on line about RSD how badly people anywhere would love to know how they were cured. DebbyV |
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05-16-2008, 09:10 PM | #7 | |||
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Sometimes people leave for emergencies or other issues. She may be back and she may not. At any rate, I answered her. At least she knows if she comes back that people are interested in what she has to say.
I hope you are doing better. Ada |
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05-21-2008, 12:17 PM | #8 | ||
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So sorry - didn't mean to be rude by not replying sooner. This is the first forum I've ever been on and I'm a bit new to it all. I went to the seaside for a few days to Dorset and then my parents have been visiting. I have also been finding it hard to summarise and put into words everything that has happened to me over the last year and a half. It is also hard because part of me just wants to forget about how traumatic it all was and just move on and live my life. I think that is maybe why there are not so many recovery stories around ( I could be wrong). However, I really do want to help if I can and so I am putting together a summary of everything I did to get better and everything I read that was useful (I tried a lot of things and a lot of them helped) and will post this as soon as I have finished it, on this site. I am then going to try writing a booklet with a bit more detail as I feel that this is needed. When I was recovering, I did not find a book written by someone who recovered completely or believed that you could, and believe me I could have done with that. That's why I'm going to try to write one. When I was first diagnosed I was terrified I would never recover and that I would never walk again. In my darkest hours I even told my boyfriend I would commit suicide if I could never walk again. As you know, constant pain can break the strongest of people. Going walking in the countyside was my life, my escape, my freedom. When I was diagnosed with RSD, I lost all that and a lot more.
I know I am extremely lucky to have recovered. Nothing I can say will fully convince you that you too can recover and I do not want to be patronising in any way, but I want to give you the most useful information I can, so please bear with me while I put it all together. In the meantime, please, please , please, get Dr Sarno's book - 'The Minbody Prescription' and give it a try. I'm aware not everyone can accept his theories, but please give it a go. It was recommended to me by my NHS GP, who told me a patient of hers with a Chronic Pain Syndrome similar to mine had tried it after years of pain and she was pain free after working with this book. The book was a part of my recovery too. Love Ness |
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07-31-2008, 10:13 AM | #9 | ||
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My son developed RSD after a crush injury to his right hand.He was only 18 yrs. old. He was diagnosed about 3 weeks after the injury by a small town family Dr. Of coarse the Ins. wanted a different diagnosis, so they kept sending him to different Drs. Each one diagnosed him with RSD. His hand would swell so much, he developed stretch marks. It would change color from white to blue to purple to red and back again. He could not use his right hand at all, he was in constant pain. His pain management Dr. kept him on Percocet, Oxycotin, Neurontin, anti-depressants, sleeping pills. He could not use his right hand at all, he became totally left-handed. The Ins. Co. sent him to a Pain Management Clinic almost 1000 miles away. We lived in a hotel for 6 weeks. This Clinic did not accomplish anything. We kept asking his pain dr. about HBOT, but Insurance wouldn't pay. My son ended up paying for treatments on his own, they were expensive, but that was the best therapy he had. ( He had all the typical RSD treatments: stellate ganglion blocks (useless), physical and occupational, and pool therapy, psychological help, etc. etc.) After about 25 HBOT treatments, he had to discontinue because of the cost. But his hand ceased the swelling, the color changes, and the pain dramatically decreased. He was able to decrease his pain medications dramatically. His last treatment was a year and a half ago. While he is not totally pain free, he has been off the Oxycotin for quite some time, and only taking Percocet occasionally. His hand looks normal, and he has regained about 95% use of his hand. He is getting ready to go to college now. I am so thankful for his recovery!!!!!!!!!!! I just want to let other RSD patients know that there is HOPE!!!!!!!!!!!!!
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"Thanks for this!" says: | Burnbabyburn (07-08-2014), DianaA (12-24-2008) |
03-18-2009, 10:04 PM | #10 | |||
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Magnate
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Hello Sage, and welcome to NeuroTalk!
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Mair . |
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