My name is Jacquelina... I have a few questions about complex regional pain syndrome? I am not sure what it is or what it means but I have been dx with that and I have been unofficial diagnosed with TOS.... My doctor seems not to believe in it and now is very hesitant to call it that... I had a MRI which showed constriction on the left side but not on the right... However my pain is much more sever on the right... He said from an vascular perspective i have TOS on the left but not the right... Is it possible to have nerve TOS of the right and vascular on the left? My symptoms on the right are:


-Pain going down neck-shoulder-arm pit-elbow-wrist and then my fingers
-Neck and back spasms
-Pain in my jaw
-Headaches in the back of my head
-Numbness in my finger tips
- When i have feeling they are burning and hot...
- sometimes i get a static like zap in the fingers..
-Gnawing pain in the shoulder area
-When turning my neck... All of a sudden you will hear a large pop.. So loud my mom was able to hear it all the way in the basement when i was two levels above her
-Dropping things on the floor, inability to hold things in my right hand
-Stiff neck
-Sometimes a cold feeling in fingers... I was diagnosed with Reynaud’s disease a few years back... Wonder if that was a misdiagnosis.. I was also diagnosed with Tendonitis and Carpel tunnel!


Does any one here have complex regional pain syndrome? If so are these the symptoms you have?


I am not sure where it all started but i think it was in volleyball i was diagnosed with tennis elbow and carpal tunnel which always has caused me pain especially when i was writing... then a year or so later i started having muscle spasms really sever and had alot of upper back and neck pain... They always said it was stress...

Then it started turning in to a popping thing... I would be driving look behind my shoulder and their would be a pop... and running pain down my shoulder and fingers... which would put me out of work for a week if not longer.. because the pain was so bad...

Now here i am today... I have been on muscle relaxants and pain killers off and on for the last year and now lyrica for the last month... Not getting much relief...

I went to a pain clinic... They did some shots in to the muscle to see if it made it better... Well they were relaxed for all of 24 hours and then went back to normal... However that did not stop the pain in the shoulder and fingers..

It must be nerve pain they tell me.. .Even though that’s what i knew all along... Some doctors just don’t listen...

I am sorry to ramble on... What do you all thinking?

Again sorry for carrying on...

Hope you all are doing well

Jacquelina

Okay I am not really up on TOS or CRPS, but I do know about trigger point shots that you had at the pain docs. You need to keep going for them to work. Only one visit won't do much. It takes time for it to break up the pain. I have been going for almost 2 years and I'm still working on it. As for the Lyrica, it isn't worth the bottle it is stored in. That's my humble opinion anyway.
Welcome!

Good luck to you in finding relief. I also do not know much about TOS. However, I do know that TPI help fibro and probably other pain conditions as well. A agree with fiberowendy. Also - as far as lyrica. I am on it for the 3rd time. ust lost 30 lbs and now have alread gained 15 back from lyrica. Probably is not effective. I must say my back is a bit better but i continue to have pain in other areas thus I don't know that it is really effective. If it were then everything would be better. True?
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Sydney

TOS and CRPS have alot of similar symptoms, you need a doctor familiar with both to make the differential diagnosis. Severe TOS can cause some central nervous system problems and CRPS involves central nervous system problems. I have TOS and I had at one point most of the symptoms you describe.

are you sure its TOS . sounds very similar to Chiari or syringomyelia

I am not sure of anything any more... My doc has no unofficialy diagnoised me with TOS and RSD!!! I am so scared! Thanks for all the advice!

Wildberry2277
I have CRPS, also known as RSD.

Most of your symptoms do sound like RSD... but, I would be very careful if I were you concerning the injections.

There are a lot of things that the medical community does not understand about what we RSD'ers deal with. Everything, at this point, is "new" for treatment. Not that it hasn't been done before, but that the results are mixed.

For me, I have been advised by two doctors to never have any more injections of any kind... including pain blocks, IV's, blood draws, etc. (near my RSD sites, so, I have to have them below the waist level) I am not a candidate for any kind of SCS (spinal cord stimulator), or many other accepted forms of pain control for RSD/CRPS, and was told "no more surgeries unless it was a matter of life and death".

I run an RSD support forum, and most of my members are in agreement that having injections, blocks, etc. helped for a bit, but in the long term, only cause them more pain, because it tends to make the RSD "spread".

This has been the case with me, which is why I would advise you to be careful about allowing them to do any more of anything, until you have a diagnosis, and also to be careful after the diagnosis. Remember, it's your body, not theirs, you are the one who has to pay the price in the end. There has been much discussion on my forum lately about the progression and spreading of RSD, in fact it is one of the "hottest" topics there.

Mainiac, aka Meme