I was just wondering if this has anything to do with TOS. When I have gone to the chiropractor and got a massage, they have always said that they can't get the knots to release. They are on my upper back, right below my shoulders. I have constant pain there. It feels like I'm giving a 40 child a piggyback ride. I also do have the tingling and burning down my arms as well as tingling in my fingers. The top of my hands feel the pulling, as well as red knuckles and swollen fingers. My left side is a lot worse. I feel pain in my thumb. It makes it hard to hold on to things.

Does the chiro or massage therapist know about trigger points?
http://neurotalk.psychcentral.com/thread125577.html

Absolutely. That was my main symptom for a very long time and I finally was tossed out of PT because they couldn't get the knots to release and, therefore, have any way to help me. Muscle relaxants also didn't work. This is a very common issue with TOS. My scalenes and pec minors are all permanently spastic and I get knots in my forearms (weird, right?) in the same place on both sides, all along the underside of my shoulder blades, at the base of my neck up to the base of my skull on either side of my spinal cord. All of your symptoms sound on par for TOS.

The massage therapist does work on the trigger points. They do get the knots to come down, but by the time they turn me back over they are already stiffening up again. I do have a job where I lift heavy boxes and use my hands in a stretching, gripping, repetitive motion, not to mention stress over the top. I'm so close to retiring that I'm not trying for a WC. I just want to be fixed before I retire.

I defiantly have them under shoulder blades and the neck areas as well. The pain is increasing everyday. It's so annoying. When I try to sleep at night I can't find a comfortable position. The Tylenol and ibuprofen is not cutting it. I wake up all night.

Have you seen a vascular surgeon about these issues? It's sounding like you have some symptoms of venous TOS which usually needs (and responds well to) surgery. Just wondering who diagnosed you and what your plan of care is. It's always great to get into PT and whatnot, but if it's not working it may be a good idea to check out all your options. I don't take Tylenol or Ibuproen as it just doesn't do anything for me and I wake constantly as well. I'm heading under the knife on the 2nd and I have arterial/venous/neurogenic TOS so PT wasn't really expected to work for me anyway. I do wish you the best of luck in healing though :-( TOS is no fun.

I have not been diagnosed yet. I am going to see a neurosurgeon on the 14th. He did neck surgery on my husband. I did see an orthopedic assistant. They did blood test for RA and lupus but they came back negative. He also took a X-ray of my hands and an EMG which came back with no carpal tunnel. He said he had no idea what it was said he wanted to send me to a rheumatologist, which is three weeks out. He gave me a shot of cortisone in each arm for the pain and sent me on my way. Sending prayers your way for the 2nd.

As an FYI to you, a neurosurgeon is not the doctor to be going to if you have TOS. Even though almost all TOS'ers have neurogenic TOS, neurologists tend to not believe in the syndrome and do not operate to fix it. A neurosurgeon cannot cut bone so they cannot do the surgery in most cases and are not at all familiar with the anatomy of the thoracic outlet because that's not what they deal with. Even if your symptoms are neurogenic in nature alone, it's a vascular surgeon who can help you. Check out the sticky that lists a bunch of doctors and you'll be sure to find a specialist in your area that deals with TOS who can get you a proper diagnosis if that is, indeed, the problem.
I definitely wish you the best of luck. In the past 5 years I've seen 4 orthopedics, 1 rheumatologist, 2 neurologists, 4 physical therapists, 2 vascular surgeons, 1 thoracic surgeon, 3 PCPs, 1 chiropractor, 1 neuromuscular physical therapist, and a partridge in a pear tree. It is not at all uncommon to have TOS and have a nerve conduction/emg test come back negative, to experience weakness with no actual clinical findings, and normal blood work. It wasn't until I got a Doppler Ultrasound test that they found anything concrete that I had TOS at all and that was 2 weeks ago!!
Most of us have done the doctor shuffle, so if you really believe this is your diagnosis, definitely check out the doctor post so you can find one that can diagnose and treat you. TOS is no joke and all aspects of treating it are very difficult so you need someone who really knows what's going on.

A few more questions..

How long have you had these symptoms?
What is avg daily pain level?
How long til you retire?
Have they done xray/MRI of c spine at all yet? That is usually a must have since c spine issues can also cause hand/arm pain & symptoms, c spine cause has to be ruled out.
how is your upper body posture overall? head/shoulder forward /hunched?

PT was not able to help me much while I was still working (production/assembly work) and it still took 2.5 yrs - some healing was delayed per WC baloney & MDs not being knowledgeable of TOS /chronic RSI/myofascial conditions.

I did find an adv PT & a very good DC that helped me the most, plus all the misc things I found for self help/home therapy.
here are a few things-
http://neurotalk.psychcentral.com/album.php?albumid=422

You might need to consider WC even if to cover the PT and check ups &/or any missed time - does wc in your state allows for you to seek your own treating dr. And if you decide to do WC then an wc atty (a good one) is a good idea, interview many before signing up with one. Find one with a good office & staff as they are the ones you will talk to the most.. usually a good atty should have a good office staff. I didn't realize this when I got my wc atty...

TOS isn't usually something you can fully fix on your own & PT is costly. Luckily my DC was able to do the billing with little cost to me. He did PT type modalities along with adjustments.
Compared to a few PT sessions I had at my regular MD's clinic - they said they tried to do the billing for the least amount out of pocket , but I always ended up with a bill.

It sounds like I have a long road ahead of me.