I have Non-specific type Thoracic Outlet Syndrome (TOS) and I was diagnosed with it in May 2014. So, I have been living with TOS for at least a year and a half. I have actually been living with it for two years or more because it is very difficult to diagnose.
Thoracic Outlet Syndrome is a group of disorders that occur when the blood vessels or nerves in the space between your collarbone and your first rib (thoracic outlet) become compressed. http://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/basics
I used to work out daily in the gym. And when I say daily, I mean six days a week. Three days a week, I lifted free weights. After lifting weights for a few months, I started to notice a sharp, stabbing pain in between my shoulder blades in my back. Thinking I just needed an adjustment, I went to a chiropractor. He snapped and popped and made me feel better. For one day. Then the pain was back. So, I went back to him. After a few visits, I realized that the pain in my back was not getting any better and I now had a horrible pain in my neck.
I finally went to my family doctor with my symptoms. He was very blase about it all and sent me to get an MRI just to shut me up. When the MRI report came back, it showed that I had a bulging disk in my neck. So, my family doctor sent me to a specialist far away with a name that I cannot pronounce. This specialist was a highly paid surgeon, but he would not take my case. He told me point blank that I would need surgery and the pain would only increase. The specialist also told me that I wasn’t high profile enough or rich enough for him to take me. So, back to my family doctor I went. When he told me that I would just have to “deal with it”, I cut him loose and found another family doctor.
I then began seeing a nurse practitioner. I absolutely loved her. She was caring and she was very concerned about finding out what exactly was wrong with me and what could be done about it. She sent me to a different specialist, one who specialized in sports related injuries. The first visit with this doctor and (Eureka!) he knew what was wrong. He strongly suspected TOS, but he did not want to make an official diagnosis until I had some tests done.
One of the tests involved me flapping my arms like a bird while wearing blood pressure cuffs on both arms. And then he did a nerve conduction study.
A nerve conduction study is a test that uses a low electric current to test and measure the nerves’ ability to send impulses throughout the body. http://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/basics/tests-diagnosis
After these tests, it was confirmed. I have TOS on both sides. There are three types of TOS: Neurogenic (neurological), Vascular, Non-specific type. Non-specific type of TOS leads to chronic pain in the area of the thoracic outlet which worsens with activity.
Now, I can tell you, it DOES worsen with activity. It worsens a great deal. My daily life with TOS is not a walk in the park. I have good days, and I have bad days. Unfortunately, my good days generally bring on my bad days. Let me explain. When I wake up feeling good, I do things I’m not supposed to do. Like clean the ceiling fans, loads of laundry, mopping, sweeping, playing outside with my kids and my dogs. The more I do of any of these activities, and many others, the more pain I am in. The spot in my back (I call it the stabbing spot) goes from a dull ache to a painful scream. I lose all feelings in my arms and hands. I start dropping things. I get shooting pain going up both sides of my neck from my collar bone to my jaw. And the worst part, I get very dizzy.
You would think if does all these activities made me feel like that, I would not do them. But I am very stubborn. I don’t like the idea that someone has to take care of me. So, I try to do it all even though I have a loving family who would do it for me. And you’re probably wondering, why are they letting me do these things in the first place? Well, they do have to sleep sometime. I don’t sleep well or often and I am up strange hours.
So if you see me out and about some day and I seem a little out of it or snobbish, I don’t mean to be. It is probably just one of my bad days and I’m just concentrating really hard on putting one foot in front of the other.