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 12-20-2006, 10:01 PM #11
lisashea lisashea is offline
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Default Thanks Roz

I am a very lucky person to be where I am today.

Believe it or not, while speaking with my dad earlier today, I told him that I was glad that I lived the past 5 yrs in rsd-hell because now I feel like I truly can appreciate and value all the things in life that are really important. Before RSD I didn't really get life. I don't know if that makes sense or not but somehow I feel like a wiser person because of the suffering I endured. I will never forget what it is like to start and end each and every day in the worst agony imaginable. So that every moment that I now don't have that pain is an incredibly wonderful moment in time to be treasured.

If wishes could come true - all of you would awake tomorrow and never feel that pain, never, ever again.

Peace and hope,
Lisa
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Old 12-20-2006, 11:37 PM #12
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Thumbs up wow

[that makes perfect sense...you never know what you have till you lose it..and lucky you....you got it back!!! wishing you a peaceful holiday..enjoy your painfree days and nights!! moonstar
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Old 12-23-2006, 03:43 PM #13
InHisHands InHisHands is offline
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Smile

Lisa, thanks for sharing your story!! I am so happy for you.

Sage, I would really love to hear your story. Thanks.
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Old 01-10-2007, 08:37 PM #14
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Default I just remembered another person who recovered from rsd

I just remembered someone else who recovered. She was a the sister in law of a friend of mine. She was probably in her 40's. Had surgery and didn't recover. Kept going back the doctors with pain. They diagnosed rsd and started blocks and pt and she recovered.

Has had no repalses that I know of.

I'll keep thinking of others who I've met thru the years.

Peace and hope,
Lisa
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Old 01-14-2007, 05:04 PM #15
saburkhart saburkhart is offline
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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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Old 01-17-2007, 05:55 AM #16
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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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Old 01-17-2007, 01:37 PM #17
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Thumbs up Wow!

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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Old 01-20-2007, 10:04 AM #18
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Quote:
Originally Posted by lisashea View Post
I just remembered someone else who recovered. She was a the sister in law of a friend of mine. She was probably in her 40's. Had surgery and didn't recover. Kept going back the doctors with pain. They diagnosed rsd and started blocks and pt and she recovered.

Has had no repalses that I know of.

I'll keep thinking of others who I've met thru the years.

Peace and hope,
Lisa

That story sounds a lot like my friend's! He went to PT, had blocks and in about a year he recovered! Makes me hopeful!!

Thank you, Lisa! You are real helpful here!
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Old 01-20-2007, 11:49 AM #19
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Default Your Welcome Vanessa

I am honored to be able to spread words of hope to those that are suffering the incredible pain that I remember so well.

As you can see, there are many stories of recovery. It's just that these stories are not documented anywhere. No studies are done to determine what makes people recover. The focus is on the negative not the positive.

My goal is to share the possible. To let people know that no matter what the doctors say, there is still hope for a miraculous recovery.

I pray that you find your miracle.

Peace and hope,
Lisa
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Old 01-20-2007, 02:07 PM #20
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I feel like I am about as close to remission as I can get. It's been a long road. It took 3 years to get diagnosed with the TOS and then with the TOS surgery came the RSD. I have also been diagnosed with too many other medical problems to mention. A few years back I had to do a living will for my PCP because at the time he didn't know if I was going to make it and that was after working on my for several years with the RSD and TOS.

For Christmas I ordered him Dr. Hooshmand's book on RSD. I handed it to him and ask him if you would read it and see if he could help me. He started me on meds that were mentioned in it, a lot of them I couldn't take but I was able to take the Methadone.

He started giving me triggerpoint injections in the areas that were the worst and we finally got a lot of them calmed down.

I had 3 blocks before that which had helped a lot and kept having them with my surgeries. I'm beginning to think this pain in my left pelvic/hip area is RSD. It's just such a bad pain that it makes me think it's the RSD. I couldn't have blocks when I had my surgeries in that area because the hospital doesn't have anyone that does them.

A friend of mine had RSD for over 40 some years and I talked her into getting blocks and she called me up and told me she never felt as good as she did after the blocks. I don't buy the story that if you don't get them in the first 6 months they don't work. Mine weren't in the first 6 months and they worked. I honestly hate to hear people say that on here because I believe it is so false.

When I had my last surgery in Nov. one of the Nurses is a friend of mine and she has RSD in her right foot. We talked about how odd it was that she had had TOS surgery years ago and ended up with RSD in her right foot. She told me that everytime it raises it's ugly head she just goes and gets a block. She's on her feet 10 to 12 hours a day. The last time she delt with hers was about 6 years ago.

I have 3 friends that work and have RSD so that is a possibility also.

What I have run up on it that I have too damn many other medical problems to work. I think the TOS makes it the worse for me because of not being able to use my hands and arms. I also deal with back problems so that makes it hard also.

I'm happy with where I am at this point and I am thinking of calling my Anesteologist about getting a block for this pelvic/hip pain.

It's been the hardest road for me since I became sick in 87 but I didn't develop RSD until around 2000.

I believe with RSD you have to find the best Drs. available. I have a good PCP and a good Anesteologist. I could never find a good PM Dr. so that's why I ask my PCP to take care of my RSD.

That's the biggest problem is finding a good Dr. that is willing to help deal with the RSD because of the time and medication it takes to get a person better.

Don't give up on at least getting to the point to where you feel you are ok with it, because you can get there.

Ada
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