Hello everyone,

I was advised by the moderator at the PN forum to post here and see if any of you can help me out.

About 4 months ago, right after my 23rd birthday I started experiencing sunburn like pain mostly in my upper body.
I mostly feel the burning pain in my shoulders, neck, chest and arms but it also slides down to my stomach and legs sometimes.
Ive also been getting red painful swollen fingertips only on my right hand and hot red burning ears at night.

My neurologist did some tests (emg, ncs, autoimmune etc) which all came back fine.

The reasons I think it might be TOS are I know that the red swollen fingertips, specifically because they're only on one hand, indicate a circulation and not a nerve problem.
I've also had scoliosis which was diagnosed a long time ago but never treated, combined with the fact that I work with my computer and slouch all day means I've got a terrible posture.

Are all these symptoms typical of TOS, how do I even go about diagnosing or ruling out this disease.

Ive been absolutely overwhelmed these past few months and ill really appreciate if someone can take the time to answer my questions.

I forgot to add that other reasons of why I think it has something to do with circulation are the fact that the burning pain feels better standing and worse when sitting down.
And ever since this nightmare started Ive been experiencing pretty extreme cold sensitivity (its really not that cold where I live...).

Hello Danny,

Sorry to hear about your troubles. I've just recently got diagnosed myself and going through treatment now. The burning pain is usually nerve pain, so if you do have TOS and the nerves are compressed that would def cause that. Irritated nerves also cause swelling and all kinds of weird sensations in the arms/hands.

I was also having problems with my leg due to muscle imbalances. Once the upper body goes out of whack, the rest just follows. If your neck muscles are tights, they pull out all of your ribs, not just the first one and everything gets decentered, including muscles which start pulling on the legs too. You may also have shorter muscles in the thigh area because you have a desk job. If your posture is bad, the pec minor gets very tight, pulls your shoulders forward which makes the trap muscles very elongated and weak. That is why even if you try to correct your posture, you can't just yet because the back muscles are weak/inactive and can't support you. The pec minor needs to be stretched really good to stop pulling on the shoulders.

I hope I explained this well, this is my understanding of what is happening to TOS bodies.

You should definitely mention this to your dr and they would be able to assess if you have it or not, there are tests they can do.

If you do have it PT and chiro would be the first step. I have gotten great results going to PT twice a week plus chiro twice a week and doing home exercises 2-3 times a day. You need to find a good PT that knows about TOS.

Please do not lose hope, I was like a frozen chicken, almost completely immobile ( could not move neck, lift arm, frozen shoulders) and in just 3 weeks I am a different person.

Ask away, plenty of people here to help. There is also a group on Facebook.

An easy way to learn about TOS is to start in our useful sticky at post #1, it is full of crash course info links. It will cover so much more than we can remember & type out..
http://neurotalk.psychcentral.com/thread84.html

expert PT, bodyworker or chiro can help with much of the posture issues and scoliosis.
There are youtube videos showing scoliosis manual therapy, it will give you an idea of what to expect.

Hey, thanks both of you for replying
Its both comforting and sad to see people suffering from the same thing I am.

My doctor hasn't got a clue what TOS is and I can't find an expert doctor on TOS in my country.

Are there any scans or tests that detect TOS like there are for scoliosis.

Also if I go to a PT or chiro to treat my scoliosis and posture would that in return treat my TOS.

Usually those tests do now show TOS, they are mostly done to rule out other diseases. It is diagnosed by physical examination.

You can see a video here, it explains how it is diagnosed.

http://www.medscape.com/viewarticle/748666

I am not familiar with PT for scoliosis but there is specific physical therapy for TOS.

Those include nerve glides, manipulation of the first rib if it is elevated, neck stretching ( this is controversial because some people get worse with this, it has worked well for me). If you have bad posture your upper spine is probably quite immobile and the physical therapist will manipulate those joints as well. I also go to chiro twice a week for that.