New to NeuroTalk
 

Hi
I just found NeuroTalk recently and have found it very helpful. I was diagnosed with RSD/CRPS about 3 years ago. My main area of pain is my left neck, arm and hand but to be honest, I hurt everywhere. I had 27 stellate ganglion blocks before having the Medtronic SCS implanted last June. It worked great at first, giving me about a 30% pain reduction but now it's probably about 5-10%. I don't know what to do about the SCS...leave it in for the battery life (5 yrs) or have it taken out sooner. Since I am not having any problems with it, I might just leave it in....the airport pat downs have been amusing, lol!
This condition sucks....no one understands what it is like to be in pain ALL. THE. TIME. I have tried cymbalta, lyrica, neurontin, acupuncture, talk therapy, pain meds, experimental blocks (Botox)
I try to keep busy but mostly I don't leave the house or only plan one thing per day so that I don't have to keep canceling on people....
I just had a new CT scan of my neck to see if there have been any changes in there....is there any treatments that I am missing? Any help or suggestions would be appreciated....
Lisa

Me again
 

I am left handed and all my pain, swelling, sensitivity, etc. is on that side. Using my left hand is my only option and I think that has helped to keep my hand somewhat movable but my pinky has atrophied and of course, it seems like the more I do with my hand, he more intense my neck pain gets. The pain is a burning and grinding type of pain....sorry if I am rambling on and on but as I think of more things I have to get them written down...anyone else out there with this type of CRPS?
Lisa

[it seems like the more I do with my hand, he more intense my neck pain gets.]

How did you happen acquire RSD?
Have you done repetitive work in the past?
Any hand, arm, neck , shoulder injury? Whiplash?

We have members with RSD that also had Thoracic outlet syndrome (TOS).
TOS is sometimes caused by long term repetitive uses & desk work type postures. There are also many other causes of TOS.
But often with long term TOS, RSD will develop.

If TOS might apply we have a forum with more info-
http://neurotalk.psychcentral.com/forum24.html
useful sticky thread for TOS- http://neurotalk.psychcentral.com/thread84.html

I was a jewelry designer and maker for over 10 years...it was bandied about that it was from repetitive motion use of my left hand....at first they thought I had carpal tunnel syndrome but then acupuncture with electric stim sent me into my first flare....back in 2007
I have never heard of TOS

Tos
 

I have never heard of TOS...
Originally, my neurologist thought I had carpal tunnel from repetitive motion injury. I designed and hand crafted my own line of jewelry. A lot of small wire work with multiple tools and really small pearls, crystals, gems, etc. I probably did not have the best posture either...now I am in constant pain in my neck and arm with club-like hands and I drop things all the time....
Arrrggghhh!!

Hi Lisa,

JoMar's suggestion about ruling out other conditions is a good one. What types of doctors do you have on your treatment team? It might be useful to obtain a referral to Dr.Robert Schwartzman in philadelphia, arguably the top CRPS expert in the country. The wait is 2.5 years but I found the visit to be the most informative of any physician I have consulted. Additionally he sees a high volume of people with failed spinal cord stimulators and could provide you with guidance regarding long term options dealing with your stim.

Getting only 30% relief, although helpful, is not surprising. Typically the devices will not be implanted unless a trial yields at least 50% relief. The trouble is there is really no relationship between 50% relief at trial and long term success with a Spinal Cord Stimulators and Complex Regional Pain Syndrome. Although the manufacturers of spinal cord stimulators gained FDA approval for the devices for disorders like failed back syndrome, they were not recommended for CRPS and the long term failure rate for CRPS is quite high. Failure rate within the first two years is common.

As regards removal you must consider the possibility of spreading your CRPS, either to the surgical site (if that has already not occurred, which again is common) or to other limbs or internal organs.

Have you tried physical therapy to address the atrophy in your hand? Many CRPS patients have found Ketamine infusions to be very helpful. You also might want to consider tDCS, which has a high success rate with treating many forms of chronic pain, including CRPS. It is non-invasive and has virtually no side effects.

Hang in there!

James

Welcome to NT. I am very sorry to hear how much you are suffering. I agree with both things said here. RSD can cause so many crazy, wacky symptoms but it is important to rule out other things as well because how you treat something that is RSD related may be VERY different than how you would approach it if it is caused by something else.

As far as treatments go...I think James nailed it with tDCS, Ketamine, and physical therapy. I would highly recommend the tDCS first because it is inexpensive compared to other threatment options, can be done safely at home, is non invasive (ie no risk of spread), and have little to no side effects. This has been somewhat of a miracle for me. Physical therapy got the function back and got me walking again after months in the wheelchair...but the pain was still so incredibly awful. After a month and a half or so of treating with tDCS I have gotten more pain relief than from anything else in the form of a reduction in my sensitivity to touch, flares are much less often and don't last nearly as long, and I have started to finally sleep a little better. There is a thread on here about it (it's very long but worth the read as I found it VERY inspiring).

Ketamine has been very successful for a lot of people and has put many into remission as well. So if tDCS doesn't work (or is not something you are interested in) then that would probably be the other big option for you. It can be VERY expensive though and is the main reason I did not seek out this form of treatment (which deep down I am glad I didn't because tDCS is a treatment I am much more comfortable with). There are risks with Ketamine like anything else but it has given a lot of people their lives back.

And physical therapy I personally think you should be doing every day regardless of what treatment you are doing...if you can tolerate it. Even if you can't do much, maybe there are some very basic exercises that you can try to do throughout the day. Sounds like you are already using your left hand/arm a lot and I think you are right that this is a good thing and has probably prevented things from getting much worse (I know...the pain is horrible and I often think "How could it get any worse?" but if you stop moving it does...been there). Even if you can't see a physical therapist every week (I know my insurance limits the number of visits) maybe you could see them once every 2-3 weeks and work on a program at home? I couldn't drive so my last physical therapist was an at home physical therapist and after a couple months of seeing her twice a week we set it up so I could see her once every 2 weeks so that we could extend the length of the therapy and I didn't run out of visits. At each therapy session we would go over what I had done last time, she'd give me something new or make something just a little bit harder, and then before she left she would show me something that I either wasn't ready for now (but that I could try if I felt strong enough) or the progressions of stuff I was already doing but that would make them a little harder. This worked out really well. But then...I was very dedicated to doing my exercises every day and she could see that with my progress that I was making each visit which is why she felt comfortable with it.

Best of luck to you...definitely keep us posted on how you are doing and feel free to ask questions or even just to vent if you need to. We are all here to support you because we DO know what it is like to be in pain every minute of every day. Take care.

Welcome! Glad you found us. :hug:

Thank you for all your responses...I had an EMG 2 days ago and I am still recovering from the flare it put me in.... Now I also feel symptoms in my left foot...I am freaked out
In answer to one of the above questions, I have a PM doctor and neurologist and am also seeing a therapist. I feel I am covered medically, it's just there is only so much they can do....