5 months with TOS...
 

Hi everyone, I've been reading all the posts here since my symptoms of TOS first appeared five months ago but this is my first time sitting down to write something.

TOS has been one of the hardest thing that I have been through but I just want to share with everyone who has just been diagnosed with it that it can get better....with a lot of work and a positive mind. When I first started to experience symptoms I was freaking out and I completely panicked. I had neck and shoulder pain on and off for over two years but during this past summer I started to experience a lot of pain on the left side of my chest, down my arm, my hands too, especially at the base of my thumb. I had numbness and tingling as well and I also experienced the tingling in both my feet as well as a burning feeling on the soles of my feet. For a few weeks I even had muscle weakness in both my legs. I couldn't even walk 10 feet without a limb or two going numb and being in pain down my arm. I couldn't work, I couldn't do housework, I couldn't go to the gym, I was miserable--sorry husband and kids!!

I went to the doctor and had every test imaginable and everything came back normal including my cervical x ray and mri. I spent hours scouring the internet reading everything I could trying to find anyone with similar symptoms, I became a complete wreck and developed crazy anxiety which definitely did not help. I think I cried just about everyday.

My doctor told me to try physio and luckily I found a good physiotherapist who mentioned TOS within the first 15 minutes of me talking to him. I have gone to physio twice a week since July and have done all the stretches and exercises I was told to do. I was not aware that I had really bad forward head posture and rounded shoulders so I've mostly been working on improving my posture as well as loosening my neck up.

What I think helped me the most was Sharon Butler's program, I found it online from a google search. I had read that Coop42 was having some success with it so I thought I would try it, thanks Coop! I found the scalene stretches in her program helped TREMENDOUSLY!! I followed the program exactly how she laid it out but if I were to go through this again I would get to the scalene stretches sooner.

Just as I was getting to the end of the six week program my appointment with the neurologist came up (I live in Canada, it takes a long time to get appts.). She ruled out MS and ALS and told me that I should try acupuncture to help with the numbness and tingling. So a few weeks later I tried acupuncture and exactly a week to the day--no more symptoms. (this was month 4 and a half). I was starting to feel better before the acupuncture so it's hard to say if it was solely the acupuncture or a combination of that and physio.

During this time I also changed my diet and ate tons of fruits and veggies, lean protein. I took fish oil, vitamin D and B. I took a lot of magnesium because it's a muscle relaxer--I also took prescription stuff too and a lot of aleve. I still drank a lot of wine though. I also went to the library and read books like mind over medicine and Quantum healing as well as other books on mind-body healing just to keep me positive.

This was my experience, I'm not totally recovered, I still experience some symptoms if I sit too long with poor posture and I have started to get ringing in my ears but so far I can deal with it. I'm still going to physio and acupuncture because I never want to go through this again. I'm back at work and at the gym and have no pain. Good luck to everyone with this awful affliction, it will get better, believe it. I'm not a positive person by nature but I forced myself to be, I think it's the only way.

Thank you for the encouraging post...I pretty much cry everyday too, either that or panic attacks.

Now I'm starting to get the pain in my neck and I wake up with numb hands, not sure if it's the extra stress doing it or I'm just getting worse.

I've had ringing in my ears for a while now, did not think it was related.

Oh, I forgot to mention that I also did the MELT method which you can do along with physiotherapy. It helps to put your body in proper alignment and it helps to rehydrate your connective tissue. It's really interesting, I picked up a copy of the book from the library, you just need a roller and a small ball. It takes a bit of practice but I think it is worth trying.

Awesome. I'm happy that you're having positive results.

I do this too. I went to a workshop and bought the book and the ball set. I lkie using the soft roller the best.

I just did this watching a you tube video and I do feel more mobility in my neck. Does this help with the pain in the arms as well or just the neck?

Delighted to hear my work has helped you!
 

Sharon Butler here. I am delighted whenever I hear of someone getting benefit from one of my self care programs. Thank you for the positive comments!

Sharon Butler method
 

Hi Sharon,

Just wondering when specifics about your method for addressing TOS will be up on your website (seems the scalene stretching etc. folks here refer to isn't up at this point).

Hi, Sharon, which book or video would you recommend for TOS. Especially muscle and nerve pain in neck shoulder and scalpula? thank you! JKL

Sharons' book is in many libraries, and she has many articles & information available on her website.
http://www.selfcare4rsi.com

Her articles -
http://www.selfcare4rsi.com/rsi-articles.html

Fascia - this is a big one for most of us..
http://www.selfcare4rsi.com/fascia.html