On Thoracic Outlet Syndrome and living with Chronic Pain

Today is one of those days when I can’t write or edit much. Not because I don’t want to but because I physically can’t do the work. [Cross posted on my Rane Sjodin site.]

I have Thoracic Outlet Syndrome. It’s a neurological disease you can get from birth deformities, trauma, pregnancy, or repetitive activities. I’m writing this because I’m the only one who suffers from it. Maybe someone else can find this post and tell their friends.

I was born with this. I have an extra first rib. Oh goody, I overachieved in the womb and screwed myself up.

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I started experiencing symptoms in high school. When the gym teacher asked us to do cartwheels, I fell on my head a few times because the nerves in my wrist would pinch. Damn. I started to do them by barely putting my hands on the mat so it looked like I was doing what I was told. Then my mother took me to every doctor in town to find out what was wrong.

I ended up with a hand and foot specialist who worked with the Auburn University football team. He twisted me in knots and took x-rays. There was the extra rib. Then he asked me to put my hands up in a surrender position and hold them there. Thirty seconds later, I had no discernible pulse in either wrist. Which makes for interesting effects on work out equipment. If I grip the pulse readers, it doesn’t register.  It also means I can’t do my hair if it requires me holding anything up for more than a few seconds.

They sent me to physical therapy. I went once. That shit hurt. If I’m never going to get rid of this problem, the least I can do is avoid things that make me scream in pain. Again, I was sixteen at this point and stubborn. Very stubborn.

That was thirty plus years ago now. The pain has gotten worse and more persistent. I wake up with tender muscles in my shoulders and upper arms. No one warned me I could get injured sleeping. I have bursitis in my right hip. Some days, I get up hunched over and limping. It ain’t pretty but I got a life to get to. 

I drive to work with my right arm (the most affected) in my lap so I’ll be able to write my progress notes that day. I can’t buy groceries weekly because I can’t carry them, so I go two to three times a week. Most days, I get home from work and lay down with my shoulders supported. It takes an hour or two for the throbbing to go down. But it does, and then I can tackle what I need to that evening. Reading, writing, cleaning the house.

Today, I’m packing to move. I gave away my dishes and the matching glasses I’ve had for twenty years because I had to change to Corelle. Thank gods for Corelle. I can now carry a bowl of fruit without having to use two hands.

Recently I started using muscle relaxers to calm the tension so I can type. I’ve gone through physical therapy exercises to ease the tightness. They help on days I need to edit or write for hours. Some days, I get so caught up in what I’m doing that I’ll forget to pause and stretch. Typing is actually easier than the fine motor movements required by the mouse.

Texting hurts worse. I have to grit my teeth to get through messages. The only way I do it now is by dictation. My friends understand that sometimes they’ll get crazy things because autocorrect and I don’t speak the same language. Add that to my middle age sight loss and my phone could be its own Autocorrect comedy routine.

Today hurts. So I’m going to get on the couch, put on comedy DVD’s to forget the pain, and let the tension ease up so I can edit more later.

Chronic pain sucks. Stopping what I love to do would suck more.

Graylin


Comments

On Thoracic Outlet Syndrome and living with Chronic Pain — 1 Comment

  1. Fellow TOSer here, and wanabe writer. Wishing you all the best and relief from your TOS pain! It is great that you shared your story, more people with TOS need to share so people do not feel alone dealing with TOS.

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