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 01-30-2014, 05:43 PM #1
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Does CRPS go away completely? is there any chance it will come back?
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Old 01-30-2014, 09:19 PM #2
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Thanks for being curious, sure hope you don't have it.

There's a very easy website that answers lots of questions.
www.rsdhope.org
No, unfortunately there is no cure, it can go into remission which is much more likely for children & teens.
There is no specific medication either, all medicines given to us are "off label"
use.
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RSD/CRPS and contracture of left hand and arm after surgery for broken wrist.
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Old 01-30-2014, 09:51 PM #3
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Di is right, there is no cure. It does not go away, burn itself out and you can't get over it. It can go into remission, but that usually only happens with proper treatment right away. You can come out of remission and spread at any time.
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Old 01-31-2014, 02:27 AM #4
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I have read about people who have went into remission. I actually knew a lady who that happened to but it did came back because she injured herself. I think anyone who has had a dx of RSD and found relief needs to be very careful in terms of injuries or even surgery.
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Old 01-31-2014, 10:11 AM #5
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Ditto Daniella,
Remisson is all we can hope for unfortunately and if it does happen any little thing could cause a rebound...
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Old 01-31-2014, 03:05 PM #6
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depends on treatment. My left foot pain has been gone since 2006 because of the Spinal Cord Stim. I'm always worried if I hit my foot really hard on something that it will come back. I don't know if it's actually possible but you never know.
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RSD since 8/2005
Originally in left and right foot
Spread in 2006 and Jan 2014
Both legs, arms.
Chronic pain going back to 1992

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Old 01-31-2014, 03:53 PM #7
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Yes, yes yes! RSD can go into remission so do not lose hope!

Since I am not a doc, I'll tell you about my trip down RSD lane.

I got RSD from a stroke (brain trauma). I had about 2 months in hospital between acute care and rehab. For many weeks I had complete right- side paralysis. When I got feeling back, it was like a million scalpels slicing me up. The nurses just smiled.

From there, home where I lived alone, no family near, most past friends stayed away. Air (ceiling fan) going across my skin was excruciatingly painful. Skin on right hand and foot was bright red, shiny, swollen.

Two years after stroke and because of contracture of toes making walking feel as if I was walking on abscessed teeth, all the joints were sawn off and steel pins inserted in my toes for 11 weeks.

This is all back in the early 90s. I had no medical coverage for a few years and was not really diagnosed for four years, at which point I was put on Neurontin.

Intractable pain til from mid 90s til about 2008. I was eventually diagnosed as having RSD by five doctors. I totally agree with everyone here who is out of reach of knowledgeable doctors!

I got the RSD into remission, even though everything I had researched about RSD indicated that was not possible.

Do not give up! I used the most conventional treatment I could, refusing any surgical treatment like implanting of pumps. Personally, I believe that going the distance some doctors wanted may have killed any possible remission in the future.

Finally, when I felt mentally ready in case it was a mistake, I weaned myself gradually off the Neurontin! And out of the active RSD! Work towards that moment in your life! I know it may not be a forever state but it's bee about six years now and who wouldn't take that!

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Old 01-31-2014, 04:46 PM #8
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Thanks for the responses.

I was diagnosed about a year ago, I have CRPS in my right shoulder I have been working throughout which has been hard trying to put on a brave face but I am at the end of my tether at the moment.

Think I need to take to my doctors again.
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Old 01-31-2014, 05:19 PM #9
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Hi. I was diagnosed about a year ago too. It started in my hand and wrist following surgery to repair torn cartilage in my wrist. It has since spread to my whole arm including my shoulder.

I have also been working throughout and I know exactly what you mean about putting on a brave face and being at the end of your tether. I'm am right there with you. Having dragged myself through a year of working full time with this, I am just looking around wonder how much more.

So far, I just keep going every day. I wake up every weekday morning thinking I can't possibly make it through a day of work - I am too tired and in too much pain. But then I force myself out of bed and start getting ready and then go to work. I keep going just holding out for the weekend, which I spend like a zombie trying to recover. It is that way day after day, week after week. Okay, enough whinging from me.

Good luck with your doctors. Hang in there.
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Old 01-31-2014, 06:16 PM #10
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Sorry you are in the same situation

I have taken to biting my finger quite hard to help me concentrate, maybe not a great idea but work still has to be done. Mentally drained, a good windge help every now and then gets it out there.

I don't really have anyone local I can talk to, live in south wales but my family live up north. Not sure they get it either.
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