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 05-15-2009, 02:16 PM #1
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Confused RSD...was gone, but now it's back?

After my car accident back in Nov 07, I was diagnosed w/RSD in my left arm; burning, swelling, changing color, nail growth, hair growth....typical text book stuff. I was on 1800 mg of Gabapentin but chose to stop taking it a while back because of the nasty side effects I encountered. The RSD seemed to have "disappeared". I had slight burning every once and again, but not daily. And the tingling had almost entirely disappeared as well.

Fast forward to 3 weeks ago and the ugly monster seems to have come back with a vengeance. But now the pain is not only from my elbow to my hand. It is now all the way up to my shoulder and is constant. The burning is unbelievable. The pain is excruciating.

I am angry with myself for being in such denial. I should have listened to the warnings here about catching it early and doing "damage control". Is it too late for that? Can it disappear and then just come back?

I have an appt with a new doc on Weds and will have to start this whole process over from square one. A new primary doc, a new neuro, new meds, another EMG, more PT, blah, blah, blah......

I am discouraged, depressed and in pain. Any words of wisdom at this point would be helpful and greatly appreciated.

Thank you.
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Old 05-15-2009, 06:37 PM #2
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Once you have rsd you do have it for life. I have heard of a few people whose symptoms almost all went away and then came back. This is the thing with rsd.....it can and usually does come back with no warning, for no reason. The very few who gain remission, no symptoms at all, can get a slight injury and have it come back, or again, it will just come back one day with no injury or anything.

I'm sorry it's reared it's ugly head again for you. The quicker you get blocks and such the better. Glad you're doc appointment is Wed. Often when it comes back the pain and burning are worse and it's not uncommon for it to affect a slightly bigger area than before. Seeing as you didn't have to deal with any pain, your body has to "get used to" the pain again. Hopefully meds will help tone it down though so you don't have to "deal" with it. Blocks could help if you pain is still sympathetically maintained. Blocks are usually the first thing done to try and shove it into remission. Not getting any relief from a block means the pain is now independent.

I'm not sure I have many words of wisdom exactly. :-) The most important thing is to tackle it head on, get the treatment you need asap and don't lose hope. Remember don't use ice on your arm!! PT must NOT be aggressive but gentle and slow. It won't help the rsd to go to pt 2 and 3 hours a day nor do pt until your pain is through the roof.

Hugs,

Karen
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Old 05-15-2009, 08:56 PM #3
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It's probably not really your fault. A little injury or anything and it just comes back. I worked hard for years to get mine down to a level that I could get off the medications and then I twisted my ankle and it came right back worse than ever.
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Old 05-15-2009, 10:44 PM #4
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Quote:
Originally Posted by kittygato View Post
After my car accident back in Nov 07, I was diagnosed w/RSD in my left arm; burning, swelling, changing color, nail growth, hair growth....typical text book stuff. I was on 1800 mg of Gabapentin but chose to stop taking it a while back because of the nasty side effects I encountered. The RSD seemed to have "disappeared". I had slight burning every once and again, but not daily. And the tingling had almost entirely disappeared as well.

Fast forward to 3 weeks ago and the ugly monster seems to have come back with a vengeance. But now the pain is not only from my elbow to my hand. It is now all the way up to my shoulder and is constant. The burning is unbelievable. The pain is excruciating.

I am angry with myself for being in such denial. I should have listened to the warnings here about catching it early and doing "damage control". Is it too late for that? Can it disappear and then just come back?

I have an appt with a new doc on Weds and will have to start this whole process over from square one. A new primary doc, a new neuro, new meds, another EMG, more PT, blah, blah, blah......

I am discouraged, depressed and in pain. Any words of wisdom at this point would be helpful and greatly appreciated.

Thank you.
May or may not be RSD. Could be a compressive neuropathy or radiculopathy. See the neuro.
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Old 05-16-2009, 06:28 AM #5
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Default Hi Stephanie,

Karen is right. Ask for blocks. Usually they do a series of blocks, not just one. I believe it takes several times to get enough meds in the system for them to work. Some people don't have good luck with them but I have seen a lot of good come from them around my area. After having RSD for years, I have seen people get some relief with blocks. I also feel an Anesteologist does the blocks better then most PM Drs. From the PM Drs. I have seen around here, they mostly want to push pills and the SCS's. I believe it's because of the kickbacks they get from the companies that make them. I have seen about 5 PM Drs. and none actually offered blocks. My hand surgeon sent me to the Anestologist for blocks. It took about 3 years for me to get diagnosed with RSD and that was done by the Hand Surgeon too, not the PM Drs.

You really have to line up a group of people to help you with RSD. A good Physical Therapist, a good Dr., it doesn't matter, what kind he is, just so he is up on RSD, and a PCP.

You might find you have more going on in that arm also since you had an accident. It could be TOS, Rotator cuff, Carpel tunnel, Radial or Ulner nerve syndromes. If that's the case then you need to find good Drs. to help you figure those out.

I'm sorry it came back like it did. Mine has been in remission for about a year or so. I was able to go off of my Methadone completely. It sure wasn't an overnight thing though. It took about 8 years due to some of the idiot Drs. I wasted my time on.

Also ask your Dr. about lidocaine patches. Several of us use them here and get good results from them.

I hope your pain level comes down soon.

Ada
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Old 05-16-2009, 07:47 AM #6
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You could also be having a shingles flare.

If you have had chickenpox as a child, this virus is capable of coming back and causing severe pain. You will not necessarily get a set of blisters with it.

A doctor can run blood titres of the zoster antibody and find
very high levels and perhaps try an antiviral on you.

This is a very misunderstood presentation of Herpes Zoster, but it can happen. A diet high in arginine may trigger it since the virus uses arginine to replicate, or stress or a lowered immune system. I had shingles on my right upper arm when I worked midnights, and it flares now and then. Less now, after 10 years, however.

Something like this that goes away and comes back should be looked at with some blood work.

Here is a list of foods that are high in arginine. To reduce the impact of arginine, taking some l-lysine will mute the virus to some extent..but it is not a cure. The ratio of l-lysine/arginine is thought to be a trigger for Herpes viruses.
http://www.herpes.com/Nutrition.shtml
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Old 05-16-2009, 08:09 AM #7
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Default MrsD,

Thanks for that site.

I have had shingles once but I have a friend who keeps getting them. I ran off a copy for her.

Ada
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Old 05-16-2009, 12:18 PM #8
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I think a fresh work up/evaluation might be a good thing.
Ada mentioned some of the other possibilities.

What was your actual injury from the car accident?
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Old 05-17-2009, 03:02 PM #9
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 05-18-2009, 10:24 AM #10
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Quote:
Originally Posted by Jo*mar View Post
I think a fresh work up/evaluation might be a good thing.
Ada mentioned some of the other possibilities.

What was your actual injury from the car accident?
The neuro said that my injury was ulnar nerve damage as proven by the EMG.
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