Poor Sleep, Stiff Hands, Neurogenic TOS? Help!
 

Hi There-

I am in need of any advice or even people with similar symptoms as I've been fighting this battle for several years without answers. At that time, I was working about a 2 weeks into a job working at a coffee-shop using my hands with a lot of twisting. One morning I woke up with both hands completely numb and I was completely exhausted as though I hadn't slept although I had slept through the entire night.

After failed NCV/EMG tests and bloodwork with no indication of any issues I was left with no solution. I do have scoliosis (curvature of spine) making my posture terrible. After a year of searching, someone suggested I try rigid splints for my wrists at night. This helped considerably but I still would rate my sleep quality at 50%. My hands were no longer frozen with pain if I wear them and my sleep improved drastically. . My hands still had a perceived weakness at all times though. Although, I could grip things with strength they felt weak.

Since, that time, I've seen tons of doctors, chiropractors and PTs with not much luck. I've also had sleep studies which indicates I might have some sort of pain intruding. I've been told by a chiropractor that it's most likely some sort of TOS, caused by my poor posture due to the scoliosis. My PT has seen my hands go blue when put in a certain position. At night-time, it appears I might be curling my wrists (when I don't wear the splints) which causes pain and 100s of mini-wake-ups from sleep due to the pain and than I go right back into slumber and don't recall anything which is why I wake up unrefreshed.

I'm currently on more medicines than you can imagine and I'm in my 20s. These focus around sleep, pain and all the things that come out of not getting quality sleep.

Has anyone experienced any of the symptoms above? Poor sleep? Frozen hands w/o splints? No positive tests or official diagnosis except possibly TOS? Any advice would be greatly greatly appreciated! Things are pretty bad as I wake up each morning feeling beyond horrible and distressed.


Thank you for all your help.

Hi there,
A lot of that sounds familiar.
Mine started mostly in my hands & forearms and then the neck/shoulder & upperback joined in..:(

Sometimes weekends are a little slower for replies, feel free to read other posts or search the forum, and explore the sticky threads near the top of the main TOS threads page.
http://neurotalk.psychcentral.com/forum24.html

Is PT working on posture & the scoliosis?
Some good videos on youtube for therapy of scoliosis - I was looking at them for a family member.

Have you had any x rays/MRIs to check for extra cervical ribs or other anomalies?
Perhaps an advanced spinal PT or body worker of some sort might be helpful.

like Eric Dalton therapy or something like it-
https://www.youtube.com/results?sear...ome%20bodywork

Thanks for the reply Jo*mar! It already feels good to have 1 person to connect with. It sounds like you have gone on quite a journey yourself. :( I hope you are doing well.

I will definitely be checking out the videos today. Thank you.

The PT (who is an absolutely amazing gem here in Chicago) has got me standing up straight to the point where people can't tell I have scoliosis unless they see my back. He deals with muscle imbalances. It hasn't, unfortunately, solved my issues though.

I have had X-Rays, MRIs, NCV/EMGs, Sleep Studies and nothing indicates an additional rib. Only a Chiropractor has indicated a positive T.O.S. reading when doing his tests. I'm thinking of seeing a T.O.S specialist here but my only thought is that it is that difficult-to-diagnose Neurogenic kind.

I've read a number of post here, but you recommend I post in some of the active strings here to connect with people better?

All the best!

it sounds like you like your pt but i have to plug this guy, he's good and located in chicago

http://www.osarconsulting.com/about_us.htm

ive watched all of his videos


if your hands are changing colors i would ask for a referral to a vascular surgeon to get at the very least a doppler study done

Thanks PennyLoafer. Yes, I am trying to find a good MD to see in Chicago. Someone with an open mind that will know both the vascular and neuro sides of the equation.

Right now, the nerve meds they have me on (Neurontin) seems to help out at night which makes me think that a vascular guy will just send me to a neurologist. Of course, I've been to many neurologists with negative EMG/NCVs. Ugh. Now, I'm just whining. :)