RSD and Treatment Options

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From: byrd45 (Original Message) Sent: 10/9/2006 6:01 PM
From: <NOBR>byrd45</NOBR> (Original Message) Sent: 7/6/2006 11:19 AM
Hi Everyone,
This week I thought we could talk about RSD and some treatment options available to us. I remember when I was finally diagnosed after seeing at least half a dozen or more doctors and they told me you have a brachial plexus injury which has caused RSD. I said okay now that we know what it is finally we can fix it and I can get back to normal life again right?........Moment of dead silence in the room a pat on the shoulder and my doctor reassuring me that he will do his best to get things back to normal for me. He knew the truth then but since it was still early was hoping he could put the RSD in remission. He tried but it just didn't happen. We all know that RSD is at this point is for life unless you are lucky enough that they manage to push it into remission. Well what do we do now? What treatments can help or hurt it is all very confusing to all of us. I thought a weekly discussion about treatments might help all of us understand, learn about, or answer some much needed questions for ourselves and for our RSDers that have been through it all and back again please feel free to share what you have been through it might help someone else. Here is a short overview I found on treatments for RSD that included most of the main ones we hear about.........
Also feel free to print out this overview for any doctor who needs an update on what is being done to help people with RSD.


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Treatment
The goals of treatment are to control pain and to maintain as much mobilization of the affected limb as possible. An individualized treatment plan is designed, which often combines physical therapy, medications, nerve blocks, and psychosocial support.

Medication
Medications are prescribed to control pain. The type of pain experienced by the patient determines the type of medication prescribed.

Constant pain caused by inflammation is treated with nonsteroidal anti-inflammatory drugs (e.g., aspirin, ibuprofen, naproxen, indomethacin). Due to potenially severe gastrointestinal and cardiovascular side effects, NSAIDs should only be used as instructed.

Constant pain not caused by inflammation is treated with central acting agents such as tramadol (Ultram).

Sharp pain and pain that disrupts sleep may be treated with antidepressants (e.g., amitriptyline, doxepin, nortriptyline, trazodone) or anticonvulsants (e.g., carbamazapine, gabapentin). Oral lidocaine, a somewhat experimental treatment for RSD/CRPS, also may be prescribed.

Generalized, severe pain that does not respond to other medications may be treated with opioids (e.g., propoxyphine, codeine, morphine).

Muscle cramps (spasms and dystonia) can be treated with clonazepam and baclofen.

Localized pain related to nerve injury may be treated with Capsaicin cream, but its effectiveness has not been proven.

Medications that affect the sympathetic nervous system such as clonidine (Catapres) can be useful in some cases.

Muscle stiffness may be treated with muscle relaxants such as

Tizanidine (Zanaflex)
Baclofen
Clonazepam (Klonopin)
Physical Therapy
Physical therapy should include daily range of motion exercises. Patients should be advised to avoid activities that could accelerate osteoporosis or joint injury.

Nerve Block
Sympathetic nerve block interrupts the transmission of pain signals from a group of nerve cell bodies (called a ganglion). When treating an upper extremity, it is called a stellate ganglion block. A small needle is used to inject an alpha adrenergic antagonist alongside the windpipe. When treating a lower extremity the nerve block is performed in the lower (lumbar) spine.

The procedure, which is usually performed by an anesthesiologist familiar with the technique, involves the insertion of a needle into the appropriate location and the injection of anesthesia into the ganglion. The effect is monitored over time.

Sympathectomy
Patients who have a good but temporary response to nerve block may be candidates for a surgical procedure called sympathectomy. The goal of this procedure, which involves cutting and sealing (cauterizing) a portion of the sympathetic nerve chain that runs down the spine, is suppression of sympathetic nervous system activity in the affected area. Performing sympathectomy for RSD is controversial and in some cases, the procedure worsens symptoms.

TENS Unit
A transcutaneous electrical nerve stimulation (TENS) unit may be used to treat the affected area. In some cases, spinal cord stimulators are implanted permanently to supply a low intensity impulse to a location in the spinal cord in an attempt to interrupt the pain signals that are being transmitted to the brain.

Psychosocial Support
RSD/CRPS patients often become depressed and anxious because of chronic pain and loss of physical ability. Counseling, support groups, and chronic pain center programs help patients learn coping strategies and provide emotional and psychological




I think a good doctor who understands RSD or is willing to learn is essential to handle our ongoing care. I have one doctor who just handle my pain management and before her I was in alot more pain. She has really balanced my meds to help relieve as much pain as possible. If you don't have someone I would search and search until you find someone even if it means checking out alot of doctors. You will be glad you did in the end. I have gone through several different treatments for the pain and I would say that the Lidocaine infusions were the most helpful for me. They hoepitalize you for five days and ifuse lidocaine through an iv 24 houtrs around the clock gradually increasing the dose until you cannot tolerate any higher. This has really knocked down my pain levels.Unfortanately like all the other treatments they are not a permanent fix and wore off after 3-6 months. Well I would love to here your experiences with treatments or any comments just add it to this post.

Love,

Robyn



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From: GalenaFaolan Sent: 7/7/2006 9:07 PM
Guess I'll be the first! lol

Let's see......from the beginning. When the symptoms began it was agony and I lost the use of my left leg. I couldn't put any weight on it at all without my pain level going through the roof!! So I was on crutches and wanted nothing more than the pain to stop and be able to walk on my own.

I was given, I believe it was clonodine pills and they did nothing at all. Was also given an antidepressent as well and that did nothing but give me wicked mood swings and poor hubby couldn't bear to be around me for the week it took us to figure out what was doing it to me. That first Ortho, after a month, finally gave me some pain meds but only after begging him for something, anything. After making me feel like an addict he gave me about 20 tylenol 3's that did absolutely nothing to touch my pain. It was like taking regular tylenol or an ibuprofen!!

Fast forward to August 03 and Ortho #2. Got Neurontin and Lortabs. Neurontin REALLY screwed up my mood and I was a terror. Of course that was the first week, quit taking them and was much better. Doc acted like I was lying when I told him my reaction on the med. *rolls eyes* Didn't mind the whole Lortab thing cause it brought some relief but then he got hinky all of a sudden and wanted to quit giving me anything at all. He put me on another antidepressent, elavil and it too messed up my moods really bad. Quit taking it after only a week, yet again. Also looked at like I was lying or something when told him about that.

On to December 03 and the next doc, a neurologist. Over a year was given vicoden 5mg, duragesic patches, cymbalta. Cymbalta also messed with my moods but the worst part was how it made my stomack hurt. I would get sharp, shooting pains in my stomach about an hour after taking it. He looked at me like I was lying too, but why would I?? Geez......

Was in PT 2 times. First time for 6 sessions when I was seeing first Ortho. I was able to walk on my own again from that but nothing else. Paid for it in pain and spread. Second time around was after seeing 2nd Ortho. Wanted me to go for 12 and I made it 10 before therapist said no more. It was only hurting me more and doing no good.

Only had one lumbar block and that was a nightmare!!! Couldn't sit up or stand for more than a few seconds for about 2 weeks and then after that was only able to sit or stand for 5-10 minutes from then up to 2 months after. Was in absolute agony the whole 2 months. Needless to say, didn't do it again.

Did have a TENS unit at one point but it did nothing for me at all. Well, it did something for me alright, it caused my skin to feel on fire and send zapping jolts throughout my body!!! OUCH!! I didn't use it for more than a couple of times. Even on the lowest setting it hurt.

My saving grace has been groups I'm in and a couple of boards I go on for RSD. When I feel the need to let loose or whatever.....I come online to do it. There have been some great people I've met and am so proud to call them friends. Without the internet I may just have driven myself crazy by now!! So I'm very glad for the internet and groups of caring people to come to and help if I can.

Love and Hugs,
Karen J

Finally found a pain doc and on vicoden 7.5 and baclofen for the spasms that were becoming