NeuroTalk Support Groups - Hand / arm involvement ... tips/tricks

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Hand / arm involvement ... tips/tricks (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/210833-hand-arm-involvement-tips-tricks.html)

Quote:

Originally Posted by ShaggyChic_1201 (Post 1102966)

I am seeing a PM doc, but the ONLY thing he will do is SCS (leads). Won't write for PT, massage, OT or anything. I've never been addicted to anything and yet he will only write script for 100mg tramadol prn (NTE 8). I dont even bother to take it since it does nothing.

Your comments on the sling are accurate. The problem is my shoulder is so unstable that walking, sneezing, reaching, or random muscle contractions cause it to partially dislocate. Each time it occurs, the brachial plexus gets jarred and sends out a cascade of pain signals around my clavicle, shoulder and armpit. The CRPS seems to like the company, so it flares too.

I can't have surgery to fix my shoulder til CRPS is under control. Can't seem to get CRPS under control til my shoulder is fixed.

What's a girl to do?

With treatment restrictions like that you are not going to improve...so you need to try and find a new doctor. I know how frustrating that can be...I got bounced around from doctor to doctor for a while before finding one that was a good fit and helped me get where I needed to be. Time is of the essence with RSD and you can't waste much time with a doctor who is just flat out refusing to actually TREAT your medical condition.

Wishing you the best of luck...take care of yourself!

I can't have surgery to fix my shoulder til CRPS is under control. Can't seem to get CRPS under control til my shoulder is fixed.

What's a girl to do?[/QUOTE]

You sound just like me. It has taken me two years and a ton of different treatments to try to get my CRPS under control. It is finally good enough to have surgery for TOS, ulnar nerve transposition and DeQuervain's next week.

I haven't been able to wear long sleeves in two years. It's really hard b/c it gets cold here. I usually wear a Tommy Copper arm sleeve if I absolutely need to wear a long sleeve. I have a couple of other brands of compression sleeves (which is what you are making with your tights), but Tommy Copper is my favorite.

My arm gets swollen, painful and numb when it's hanging down for more than a few minutes. My doc told me to try a compression sleeve when I anticipate my arm will be down for awhile (especially when I take a walk) and to add in a sling (which just is a thin piece of strapping that hangs like a necklace and I can just slip my wrist in- instead of a full sling which is too confining). Other than if I'm trying to get some exercise and wear the sling I try to use my arm as normally as possible even if it is painful.

My PM doc said that once your pain goes up two points with an activity to stop and rest. Restart the activity when you are near your baseline. Often I push too hard, but I'm working on it.

I agree, time for a new doctor!! A good dr would allow you to try PT, etc., and other meds before doing something as invasive as a SCS. If an SCS is what he is pushing over everything else, then he is only concerned about $$, not you. I am not saying anything bad about SCS's because I had two of them and they were life savers for me (implanted June 2011, removed Jan 2014). While I was waiting approval for my SCS's, my dr did everything he could and everything I asked for to make sure I was comfortable with the decision (the insurance approval process took a while for me) to get them.