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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

RSD spreading

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Old 09-09-2005, 10:05 PM   #1
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cblasingame HB User
RSD spreading

I have a question about the spread of my RSD, it started in my arm after a surgery and some physical torture..err i mean therapy...its been almost a year since that. So, about 3 weeks ago I was in the grocery store and I bent down to get something from the bottom shelf and without thinking (obviously!!) I went to pull myself up with my affected arm...wasnt happening. So needless to say, i kinda fell and twisted my knee (although it felt like maybe i had severed my knee completely). Well ever since then, I have been having issues with that I have a hard time walking on it, putting pressure on it, it swells just a little(kinda like my RSD arm does).Now for the big scary question...Is it possible to spread the RSD from an injury like that? I sure should have recovered from a little twist of the knee by now however, I feel like I'm always complaining to the Doc (since my RSD hasnt decided to stop progressing yet, it just keeps getting worse and worse).So I thought I would ask the experts who deal with this everyday like myself because alot of times we have more answers. I know RSD spreads from limb to limb, I was just wonderinghow bad the injury has to be because if I were guessing I would say thats exactly what has happened to my knee .Thanks for your response.....Claire

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Old 09-10-2005, 08:38 AM   #2
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Re: RSD spreading

Hey Claire,

Yes, RSD can spread from just a little injury to another part of your body. The nervous system is already messed up, so even a small injury will overreact and cause it to spread. The sure test is not only the pain or swelling, but also if there are color changes and temp changes too.

I knew my RSD had spread because of not only that but the way the pain felt. If it was just pain, pain......we all know that RSD pain is unlike any other pain we have.


Old 09-10-2005, 01:31 PM   #3
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Re: RSD spreading

Hi Claire! I know exactly what you are going through. I got RSD from a bad surgery on my left wrist three years ago. Last year, I tore the cartilage in my left knee and had to have knee surgery. Yep, you guessed it! I now have RSD in my left leg as well! I have good days and bad, but here lately, the pain is so intense that even my medications are not helping a bit. My pain doc prescribed me a walker ( I feel like an old lady when using it) for when I have to go out and will be walking for a period of time because my leg will just go out from under me with no notice and I hit the floor! My case is workmen's comp, and its been very difficult to get the insurance company to cover my leg as well as the initial injury of my hand. I'm still fighting that, with the help of a lawyer and good doctors! I am interested to know if you have a pain doc and what he/she is doing for the spread of the RSD to your leg. I hope that you find some kind of relief that helps you with your pain. We all know that RSD is a complicated little critter, you know? Good luck and God bless!

Old 09-11-2005, 01:13 PM   #4
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Re: RSD spreading

Gabby, You asked what my PMD says about the spread? Well...if I told him I might have a response for you, but I havent yet. The reason being is like yours, mine is a WC case as well and although they have been awesome to me, never denying anything and always very prompt in approval for what I need (some say its because I'm a state employee!! although I would like to think thats not true) I have heard horror stories about them disbelieving in the spread of RSD and rejecting any further claim for the spread and since my case is sooooo near the end, I think I will suffer til then. How sad is that that we must feel that way? Anyway I take a host of meds that help a little for the im sure if thats what it is with the leg..its all the same LOL. Eventually I will make it known I just dont need the stress right now of arguing with WC Claire

Old 09-11-2005, 10:33 PM   #5
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Re: RSD spreading

Hi - My knee collapsed while getting out of the tub and I ripped the cartledge - cleanout and brace fitting got me walking again when car accident rammed the knee and RSD set in - cannot wear brace - it spread to hands, elbows and face as well as other knee. In desperation, I went back to the acquasize class because I knew from all I read that being immobile would cause it to get worse and spread. Now with Neurontin and Clonmazepam and three time a week in the pool I have had it retreat to about 20% on a good day and during and right after the pool I am pain free for about an hour. I have muscle, good heart, blood pressure and lung capacity which my doctor attritubes to the exercise I am doing. Try it. If you have to have any surgery on the knee such as a cleanout make sure to get an epidural not a regular anesthetic, as I had small operations for skin melanoma and first cause RSD to spread for three weeks - pool brought it back down. Second done in hospital with epidural kept me totally pain free for three weeks and Rsd only came back to 80% of what it was. Take care - Laura.
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Old 09-12-2005, 10:26 AM   #6
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redeeminggrace HB User
Re: RSD spreading

Hi Claire,
I as all those who have gone before me have RSD...With that being said...There is something else to consider...Not knowing your history or age, I will share something that happened to me 27 years ago.. I was injured in the military and had one of the first experimental operations for the military (orthoscope...whooo) anyway, this obiviously is common place now. Our knees develope a type of arthritus called chondromalaysia. When your arm gave out and you fell on your knee you could have torn a cartlege and/or damaged the miniscus. The pain and swelling could be caused by fluid building up in the miniscus area. It would be wise to have it checked out as it could be something as simple as a drain of fluid or unfortunalty as serious as torn cartlege. RSD travels as we all agree. However the knee recovers if properly taken care of. If you don't go to the doc, a knee brace might be of help, if you can stand the pain and anti inflamitories work as does ice (no ice for RSD)...In any event, I am also going thru workers comp and it would be to your benift to check it only fear with those wonderful people (lol) is the automatic "it's denied, cuz it's not our fault" syndorme WC has... My knee has recovered and not to many issues with it. The RSD however is why I am at this board with all of these wonderful advisors/new friends...Your in my prayers...

Old 09-21-2005, 11:20 AM   #7
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palarin HB User
Re: RSD spreading

Hi Claire,

I first came in contact with RSD through having simple surgery on my foot in 2000. I had an endoscopic procedure done on both feet for plantar fasciits. I was unable to walk for over 6 weeks and I had to crawl around on knee pads in my home just to get around. Once I worked my way to a walker, crutches, and then a cane, I started having even more pain that I knew wasn't right. I went back to my surgeon and asked for help but he told me to go back to work and work until I couldn't work anymore and then stop working??????

I was shocked at his response to me so I immediately went for a second opinion because the pain was getting worse. After going to see several other doctors as well as being sent to Cleveland Clinic a year and a half went by. I finally found a doctor who knew what was wrong with me. He then sent me to a pain clinic to begin my treatment. At that time, the RSD was in my lower back, both legs and feet. To make a long story short. In the summer of 2004, I noticed that my hands were swelling, hot to touch, burning sensation up into my elbows, RSD had become systemic in which I now have it in all of my extremities. Since the beginning of this year, I have had numerous attacks in which the RSD has attacked my organs. I'm not going to sugar coat anything because it is the most painful thing I have ever experienced to date. I scream through each episode because of the pain. I'm getting ready to have a morphine pump implanted. I'm already on long-acting morphine as well as quick-acting morphine. I also have a spinal cord stimulator implanted that was done in 2002.

I'm in a wheelchair now but I'll never give up because I can't. I thank God that I have a wonderful husband and two wonderful kids that help me. Go to your doctor as soon as possible so that you can find out what is going on with your knee. I'll keep you in my prayers.

God Bless,

Old 09-21-2005, 12:29 PM   #8
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Re: RSD spreading

Hi Claire, I too am a puppet to WC I do hope by now you have talked to your doctor about your knee. I have been battling with WC since June 03 over a simple pulled miniscus in my knee. I had two operations on my knee and after the 2nd one I never got off my cane. My RSD is in both feet and legs and I have full body flare up's to many times to mention. I am almost fearful I will end up like Marie, in a wheel chair and I'm only 47. A few weeks back I had a lumbar epirdual and within a hrs time the nurse got me up(under the inpression I had a back problem) and my legs went out from under me, I tore the back of my heel up on a screw on the gurney and had to have 8 stiches. We had to pay the cost of the wheelchair, and WC would not approve fore arm cutches my PMD wanted me to have because I already had reg cutches from my doctor who operated on my knee..I'm honestly believe this fall has caused me more problems but I know WC will give me the "It's not our fault you fell" so I'm just staying quite so I can finish my blocks once and for's bad enough all the waiting these past yrs has worstened my chances for a full recovery. In your case Claire it was because of your arm that bought this on..Please keep us posted and take care of that knee...

Old 09-22-2005, 03:28 AM   #9
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Re: RSD spreading

Thanks for the replies, I have talked to my doc about my knee, she agrees maybe there is something there, unfortunatley for some reason, my arm has been a bigger issue than ever. Im going through some med changes (and we all know how wonderful those are), from methadone (as i fear long term heart issues) to one worse than the other? LOL It appears though I shoulda stayed with the methadone as it has a lot of great qualities like it help tremendously with that burning remains in your theres always al litle relief, although it was not as apparent while i was taking that Im off it, I realize what a help it was. Is it worth a possible long term heart issue? The jury's still out on that one, although i do know if this 2nd increase of oxcycontin doesnt just may be, I guess it's just desperation. I certainly feel like ive taken 1 step forward and 12 steps back with this new med (isnt this supposed to be a good one?). Anyway...keep ya updated....thanks again..Claire

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