Help for a CRPS friend
 

This is a quote from a friend with CRPS. I was hoping to get some advice to give this person. Any help would be great.
Meds:
fosamax (couple weeks left )....nortriptyline 100mg at night (weaned down from 200mg)....gabapentin 300-600mg (trying to find a happy medium so I get pain relief but am not loopy tired )....other meds I take are iron 325mg twice a day...escitalopram....requip for my restless leg....multi vitamin once a day....and ill start the 1500 of vit c tomorrow. I feel like I'm at the end of the road as far as things to make this go away...I've had three stellate ganglion blks and three axillary blocks....is there anything else out there? I also have a tens unit but don't use it much... I didn't see any improvement with it.

She has crps in her upper arm after a shoulder surgery. If there are any other questions just ask.

Any help I can get to help this person I would very much appreciate! Thank you!!:hug:

I just want to put on here that this person knows that I posted this and is a friend. She asked me to post this to try to get some help. She just doesn't have the time and is in sooo much pain.

It's really hard to answer this because so many of us who have the same or similar symptoms respond differently to different things (and different meds). I don't know all that your friend has tried or if the things listed are just the best of what she's tried. I also don't know what her symptoms are and what her goals are...which can make it difficult.

That said...there are some treatments that are fairly typical for CRPS that it doesn't look like she has had:

Ketamine Infusions
SCS (spinal cord stimulator)

Those are generally considered two of the more advanced treatments for those who have tried just about everything else.

I would not choose to do either myself because they are more invasive than I would want to go (I experienced spread after a "simple" lumbar sympathetic block so that took anything more invasive out of my treatment plan). As with any treatment, there are risks and side effects to be aware of.

Has she been seeing a pain management specialist, neurologist, or physical therapist? Physical therapy was HUGE for me in terms of treatment and getting the function back. Immobilization and ice are two of the worst things for CRPS...so physical therapy is really important.

I also had success with tDCS, a non-invasive relatively inexpensive treatment that you can read about here on the board.

I wish I could offer more but without more information it's hard to really do more than give a couple of things that she could learn more about. There are many, many combinations of meds that people have found effective...and many who have not been able to find relief no matter what they try.

Best advice I can give though is if her current doctor isn't able to help her then she needs to find a new one who specializes in CRPS/RSD.

Good luck to your friend...I hope she is able to find some relief soon.

Thank you very much! I will let her know. At least it is a start! I will let her know what you said. I know that she is going to a pain management and told her to find a neurologist. I also told her about physical therapy. I knew it wasn't a lot to go on, but we needed a starting point to go on. But thank you sooo much for responding!!! Bless you.

I agree with Catra...My PMD is kind of against invasive treatment unless there is no other option. My RSD started after surgeries on my arm, so I really don't want anything invasive either.

From what I have read here and other places the symptoms are quite wide and you don't have to have all of them all. It also seems the intensity varies as well. Since treatment should be based mostly around symptoms there are variations in what is prescribed.

It seems most everyone is on some type of "nerve" medication.... neurotin, lyrics, Cymbalta, etc.

I think it is important to have realistic expectations of treatment. I know there is no magic pill that is going to make everything all better. I just want to be functional to a certain degree.

I have been in treatment for at least 4 months for CRPS. It developed after I'd had shoulder and wrist surgery. I was finally diagnosed by a rheumatologist. I'd became so frustrated with the orthopedic that did the surgeries, that I went to my primary Doctor who ordered x-rays, comparing my hands. The rheumatologist referred me to a pain management doctor, after seeing one which was very questionable to me concerning his attitude. The new pain management doctor did 7 ganglion blocks which did help to a point. Before them, anything that brushed against my finger tips caused shooting pains. That part is not as bad, plus a pinched nerve in my elbow is better. I still have throbbing pain in my palm, along with pain along the side of my hand on the opposite of the thumb. Also, my middle finger feels like it has been broke and will not bend as far as the rest of my fingers.I did have weeks and weeks of excruciating therapy. My last session the therapist told me I'd never be able to make a fist with the affected hand again. The therapy loosened my fingers some, but within 30-40 minutes later, they were as tight as they were before...stiff and painful. I also get muscle spasms in my fore arm and sometimes upper arm, along with some sharp pains along my shoulder. Between my neck and shoulder there is like a pressure and I'm wondering if the ganglion blocks has caused that. Presently I take Neurotin, Percocet & Cymbalta along with other meds for other health conditions. My Pain Management Doctor has mentioned a nerve stimulator which scares me. I have had to have so many surgeries and hospitalizations in the last 6 years...this CRPS is so hard to deal with. I have withdrawn from the world and the home I had such pride in, well I am near the end of my rope. It seems I'll never catch up. The simple tasks create more pain which just adds more to the depression I've battled for even more years. Any helpful suggestions?

Hi BayouPatti
I have copied your post to it's own thread so you can get more replies :)
here is is
http://neurotalk.psychcentral.com/sh...d.php?t=185107