I was recently told that I have TOS by an occupational/environmental md. I also have been diagnosed with polyneuropathy. The doctor is not sure if they are two separate conditions or if the neuropathy is what is causing the TOS.
I have been suffering with this for close to two years. My arms are very weak, so I am limited in what I can do anyway, but I was wondering there is anything specifically that I should be avoiding as not to exacerbate the condition.

Did this dr say if it is NTOS or VTOS?
Or maybe you can tell- ntos is nerve based and vtos is more vascular based.
There is a RSI type that is a mix of those and non specific. (simplified descriptions)

Usually lifting, holding ,carrying weighted items, depending on fitness level may start a flare up.
Delayed pain is often a case too, so awareness of what sets you off and the timing is really something each has to figure out.
Usually reaching up overhead , holding arms out in front will be a issue.

If head , shoulders are hunched or forward of the body (check with side view).
That posture closes down the area where many nerves & blood supply need to fit thru- opening up the chest & collar bone area with aligned posture may help to relive many symptoms and pain.
Posture correction is retraining yourself & your muscles so it does take time & work.

Some simple things you can try-
http://neurotalk.psychcentral.com/album.php?albumid=422

Thanks Jomar,
I think you might be the one who noticed my symptoms when I first came onto neurotalk and suggested TOS. I mentioned it to my doctors because it gave an identical description of my symptoms. They shook their heads. Now 2 years later, this doctor touched all kinds of areas and lifted my arms in different positions, felt my pulse, and had me hold my arms up and out in front. She says I have it and I'm not even sure where to start in trying to figure out what to do. She said this might be related to muscle spasms that occur because of my body wide neuropathy, or that it could be a separate condition all together. I didn't even ask about venous or neurologic, because I was completely unprepared for another diagnosis and was really surprised. Having said that, it explains so much. The pain and incompetence I have because of my darn arms is so difficult to deal with though and I wonder if there can be a resolution for this at this point. It's been two years.

If Venous , you would have obvious swelling, possible risk of clots, heaviness, color changes..so I'm thinking either nerve, or myofascial based (restrictions/impingements which can be worked with and usually improved)

Try some of the gentle passive postures I posted, if those are too much and increase pain. then only do a yoga "corpse pose " with diaphragmatic breathing & visualize relaxation of muscles . best to do those many times a day.
It may not be a fast fix , but over time you should feel improvements. you may not even notice at first..

Thanks. I do spend much time on the floor to calm things down. I have to alternate with hot packs and lying on the floor with my knees up on my back and my arms out like a cross to calm down the pain and get a little movement in my neck back. I always swore there was something structural because my symptoms are so severe. My arms went from strong and muscular to losing tone even when working out daily and lifting weights to.... flaccid lady arms. I knew something was wrong when I could no longer do front raises, but I continued with an insane work out routine until I literally couldn't do one push up even if someone held a gun to my head. It was too late then anyway because whatever was building up hit me so hard I couldn't even use my arms to drive for 6 months.
Any stories of success to have a normal life again? Would you mind telling me how yours started and the process/progress? Or linking me to a post you made when you acquired this problem?

I might have a synopsis in the intro sticky thread, way back 2006 or so..
past concussion & /whiplash
assembly work 10hr days x 15 yrs.
reaching & arms up , head forward positions often

best helps
Sharon Butler RSI & TOS stretches ( www.selfcare4rsi.com )
trigger point self work tennis ball, golf ball , dog ball etc on floor or against walls.
top rib mobilisations
expert /healing chiropractor
lots of home focussed self care far infrared heating pad, IF stim, gentle stretches
being careful to NOT push past in to pain , slow & easy baby steps are the best way or face flares & set backs.

FHP - forward head posture is a no no. It will worsen the strain on upper traps.

Have your posture examined. Since you were physically fit and don't have a history of trauma, thats a good thing.

For venous/arterial, don't they do doppler scans? Jomar would know more.

It could just be plain and simple muscle imbalances. Weak shoulder stabilizers, and overactive upper traps, overactive pec minor and lats (both go together). Please have your posture assessed by a good PT, since many folks with TOS tend to have bad kyphosis (upper back, worsening/weakening shoulder blade stabilizers) and forward head or either flat or arched lower back.

It might just mean some gradual PT and return to good health.

In short, please be positive.

Thanks Aklash,
It's been 2 years. I tried pt for 2 months in the beginning and it made me much worse. Increased dizziness, dysphagia, and jaw pain, and lost even more range of motion.
There is also nerve damage all over my body which adds to this, so it is an unusual combination case I guess.
About the shoulders and traps, I have always had weak shoulders despite the amount of weight lifting and push ups I did, but i didnt listen to my body and made my self do it anyway because I wanted to be "healthy and fit". I started to realize in the end that it wasn't normal human activity to do reps and to exercise this way. I notice that after 2 years of being unable to work out, my traps still look muscular and the rest of my body has gone to crap. I've never heard of overactive sets of muscle groups before. That is interesting.

I will mention that the wrong kind of PT can make you much worse..
TOS rarely respond to weights, hand bikes, stretchy bands..usually is the generic protocol of mainline PT.

Expert/advanced/specialized PT , or TOS specific PT is best.
It has to be individual for you, and often hands on by PT is needed first to address the muscles & and trigger points before anything else.
http://neurotalk.psychcentral.com/thread125577.html

This could be because your PT exercises pulled more on the sensitive neck structures and made things worse. The arms literally hang off of the scapula, and the scapula in turn is suspended off the back and neck. IMO, if you do any exercises, please just use your hands and no weights. When they are ok, move to heavier things.

I am glad to have helped in any way..
Pain/trauma shuts off key core muscles. Their synergists take over. They in turn "overactivate" their antagonists.
For instance, if you have neck pain, a key muscle that gets overactive is the pec minor group since its (relatively) less connected to the neck. It in turn will start a process wherein your lats (which are its antagonist, fire more) to keep pec minor in check. Lats will extend your lumbar spine. Suddenly, you not only have neck pain but lower back pain also. If this happens on one side, and not the other, you now have signs of postural asymmetry. Another thing lats do is make it hard for you to raise your arm. Suddenly, picking up things is harder.. the body is one giant interconnected system... and if you do gentle stretches (and dont have pain) then mark it as a +. If the other way, stop and dont go any further