I'm so sorry, I'm still getting used to this board, and I totally posted in the wrong place! I think I should have replied to the last message, not the first!

You know, you might have some (mild! if you Google these terms you will find lots of stories about really bad cases, which you do NOT seem to have!) RSD/CRPS); ATOS can trigger this. [To the person who can't even peel a cold orange, that also sounds a lot like how my RSD presents.]

One reason it's important to know if you have RSD/CRPS (in addition to the ATOS) is that I would be very reluctant to go for the TOS surgery if I had RSD or was disposed to it, b/c surgery can exacerbate RSD (if you have it), and severe RSD is simply terrible. Also, the sooner you treat RSD, the easier it is to get rid of it.

It's hard to get a good diagnosis on any of these conditions--even very good doctors may disagree with each other--but I would see multiple diagnosticians, to try to get a good handle on what your precise diagnoses are, what caused them, and what your plan forward is.

You said your PT mentioned " the sympathetic nervous system acting screwy" and that is very similar to how RSD/CRPS has been explained to me. (I also have neurogenic TOS, and that was described very differently.)

I bought a paraffin unit to dip my arms in when they get that "frostbite cold" feeling. Painkillers and sedatives sort of help. It definitely sucks.

I have the cold hand issue. Much testing of everykind. My right hand gets cold to the touch all the way up to my shoulder. It is least noticible when I am working on my pc. I call it mouse hand. But when I run or hike it is very noticible. It starts in my hand and moves up the longer I do the activity. My friends tease me and say it is my super power because I can keep a beer cold. My hand doesn't get white, but my fingers do get red or more purple

The nerve testing indicates a problem with the medial nerve (the one on the outside of the upper arm). Caused by compression of the nerve. TOS. Definitely not Reynauds.

Cause of TOS probably cervical dystonia (spelling?). My neck and shoulder muscles are very very tight. Like stone. Tests indicate that my muscles spasm all the time.

Treatment is botox into the scalenes and botox in other muscles around neck and shoulders.

The docs say surgery is a good option to open up the area the nerve and arteries travel to reduce compression. That should improve my symptoms.Not ready to have surgery. The botox helps and I was already doing it for migraines.

Doc thinks dystonia may actually be the cause of migraines too.

The good thing about botox is that it means I am not taking painkillers, etc all the time. The bad thing is each time I worry that they will hit a nerve. But botox has been a lifesaver. I used to have 13 migraines a month. Now I only have mild ones when the botox wears off. A few toxins in my system are nothing compared to the numerous pills I was taking on a regular basis before. Then I felt toxic.

do you guys scalenes upper trap area ever start to get really hot?

i felt this way when i was low thyroid. it actually disabled me for a couple of days because I could not make the fingers type. perhaps you could try a diet rich in iodine and see if you notice a change.

that's so weird bc i have never had my hormones checked, not the correct tests anyways, im going to ask my DO to do labwork on tues.

I was just cirous, i've. Been looking around on here for several says trying to explain my problems/symptoms.
See EMG dr Monday for the first time. I had 3 ROTATOR CUFF and biceps tendons surgery in the last 2 years on my right shoulder. By the way it still feels i'd say the 3rd surgery failed too.
But. This time i have all theze new symptoms i never had before.
One of the are severe cold hands. They get to cold they begein to ache and hurf between my tumb and index finger. Also, at the same time my neck is stiff and shoulder/ shoulder blade hurts... Any ideals??

Definitely vascular or arterial. My hands never turned colors either and I had major compression on both sides. My hands are very warm now regardless or weather