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.

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

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.

May or may not be RSD. Could be a compressive neuropathy or radiculopathy. See the neuro.

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

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

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

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.

Stephanie,
Do you have, or has your neuro sent you too see a good hand specialist? They usually do hands, arm, shoulder.
I have ulnar nerves too, and it "can" be associated with TOS, and lead into carpel tunnel. (as mine is/does).
Hope your isn't / doesn't!

Do you find yourself holding or positioning naturally forward? If you're just sitting down for instance, at rest. Would you just keep that arm in your lap?

Just something to be aware of...
:hug:

Pete
asb

With TOS , or other causes too I suppose..., you can have what is called a double or triple crush.
where the nerve is impinged or compressed at multiple places.

For instance if your EMG shows ulnar damage you could still have compressions farther up in the the BP area.
If someone also is having carpal tunnel symptoms along with the ulnar, that would be called a triple crush. BP + ulnar + carpal

With that scenario most likely you would have some other symptoms showing in your neck, shoulder, whole arm/hand, etc.??

One of the TOS members had it explained this way.

The nerve {ulnar} is about 3 feet long , any compression or impingement { even sticky tissues} could cause symptoms to "show" down the line from the c spine where it originates.

I had ulnar sx for about 2 months - but those sx were really from extremely tight /spasmed muscles in my neck and upper back.
They were pulling the vertebra and causing pressures on the nerve.
I also think the sticky fascia scenario was a big component for me.

I don't know if this might apply for you, but just wanted to give the info, TOS is often mis dx'd as something else or not dx'd at all.
Another one of those rare syndromes:(

They ruled out carpel tunnel months ago since I do not have any of the common symptoms. The only tingling fingers in my hand are the last two and although my entire hand burns, I dont have any problems with any of my other fingers.

I do not normally sit forward, but I always rest my arm in my lap. It's more out of a defensive move than anything else. I tend to be EXTREMELY protective of my elbow since I still have an enormous amount of pain in that general area. The bruising only recently went away from the accident.

Within the months following the accident I had my neck, shoulder, elbow and hands checked out. The only area that showed a problem was my elbow and the last two fingers.

Is it possible that the RSD diagnosis is completely wrong and that this is something else?
I have the swelling, the temperature and color changes, the nail growth, the (embarrassing) hair growth, the burning, etc, etc. The neuro said that was all textbook.

I may have missed it in previous posts, but what is TOS?

Here's the sticky thread from our TOS forum {thoracic outlet syndrome}
post #1 has a crash course of info sites and then if it sounds familiar you can explore more form there.
http://neurotalk.psychcentral.com/thread84.html

Having afew days of super nice weather so I'm just popping it quickly or else I would explain it more, but the sites are very good and save me the typing ... LOL

hmmm.....after reading up on TOS, it sounds more likely that my symptoms are caused by RSD. I cannot relate to alot of the TOS symptoms.

I have an appt with my PCP on Wednesday and am hoping that he can shed some light.

In the meantime, I will keep reading the suggested articles and gather as much info as possible.

All of those symptoms are definitely rsd and as the Neuro said, "textbook". I'm sorry you're dealing with it at all and hope that treatments will work to put it into remission.

Hugs,

Karen