TOS Walking

I spent a few years being pretty inactive, using TOS as an excuse to not do much.
Seven months ago I began walking a half mile a day. I got increased aching and nervy zappers in my arms, neck, and head from walking, but I persisted and increased my distance slowly.
It felt good to accomplish something, one step at a time, an entire half-mile. It was an improvement. It was a start.

I decided I was going to have pain if I kept sitting on the couch, and I was going to have pain if I went for a walk. I might as well go walk- the fresh air would do me some good and walking might help in the long run.
So I've continued to walk.

The last few weeks I've been logging up to 20 miles per week on hilly dirt roads. With an earbud in one ear, mp3 player tuned to NPR or some peppy music, I take off and aim to complete my walking goal of the day. Around the block (3.5 miles)? To the end of the road and back (2.0 miles)? To visit a friend in town (3.0 miles). As I walk, I remember stories my grandma used to tell me (repeatedly) about walking to school 3 miles one way, uphill, in the snow. Does everyones grandmother tell that story?

Walking with my arms bent helps reduce the hand swelling a bit. I push myself to hit a 4 miles per hour pace. Nervy arm, neck, and head pain still increase after a mile or so, especially if it's colder or windy outside. I try to push through it, sometimes slow down for a bit, let my arms hang at my sides a while, then pick up the pace again.

I googled 'walking and hand swelling' and found it to be common and not just a TOS thing, due to restricted circuation. I open and close my fists a lot while I walk and grab a frozen o.j. can when I get back home.
I've found that if I push too much and walk too far I sometimes get more pain the next day, but if I'm inactive and skip walking a day or two I also get increased pain. Balance is key for me on my journey with TOS.
Some of the benefits of chosing to walk have been stress reduction, weight loss and connecting with a few neighbors I normally wouldn't.

So I'll keep walking, because even with TOS and it's glitches, I can.

*Stay tuned for a post about a walk I'm doing with a fellow TOSer soon, looking forward to that!
I'd love to walk a 5K Spring 2015 with a fellow TOSer...please email me if you're interested!!

Gentle hugs~

My assessment of physical therapy, so far.

My ear and jaw pain was gone for two days. I say 'was', because right after going to p.t. the other day, the pain was back. Seven hours later, the feeling of a knife in my ear, head, and upper trap is still there. Add to that a discussion about nerve gliding and working on the stiffness in my neck/spine leading up to eventually doing the arm bike (which I loathe from previous experience) and the rowing machine to gain strength. A wall went up in my mind as soon as p.t. mentioned this, even though he tried to talk me through it.
"I wouldn't take you through what we've been working on to calm and normalize things just to throw you on a machine for you to flareup, we're going easy. But still, we are headed that direction."
I'm so nervous about that. I'm sure it showed on my face.

He patted me, said the return of the pain was just temporary.

He talked to me about the pain cycle a bit.  Using E-stim is supposed to help temporarily break that pain cycle, hopefully long enough to give me a chance to be more active, gain some strength.

My assessment of p.t. at this point-
Sometimes I leave p.t. in more pain than I went in with, which is a downer.
Having that pain several hours later, and the next day- is a bummer.
Feeling like I'm at the mercy of the pain is depressing.
I want to believe things will get better.
Wondering if maybe it -"just is what it is", and I should stop torturing myself.
And then...I wake up one day without pain, and that is a good day!

Plus, I have to admit, my ear, jaw, head pain is not constant like it was for a long time. Since starting p.t., the pain comes and goes now-with no predictability, but its not all the time--a definite improvement.
So I'll keep doing all the exercises and stick with p.t.

I hope my experience with therapy will be helpful and give some hope to my fellow TOSers...because we TOSers need hope.

Gentle hugs~

Book Review - Explain Pain - Physical Therapist Recommended

Explain Pain, David Butler, G. Lorimer Moseley

I read this book twice, once to get through it, the second time to jot down notes of what resonated with me. I have six pages of notes. I needed to read this book. I was encouraged from reading it that change is possible, even with TOS pain issues.
Here are a  few notes I jotted from the book...(this book was loaned to me-it is a bit pricey).

Pg. 111 "Understand as much as you can about what causes your pain, not just what to do about it. Knowledge is the great pain liberator."

Pg.26  "All pain experiences are a normal response to what your brain thinks is a threat. The amount of pain you feel does not necessarily relate to the amount of tissue damage."

Pg. 11  "When pain persists and feels like it's ruining your life, it is difficult to see how it can be serving any useful purpose. But even when pain is chronic and nasty, it hurts because the brain thinks you are threatened and in danger-the trick is finding out why the brain has come to this conclusion."

  I highly recommend this book to my fellow TOSers. It covers alot of information and has been quite helpful to me. If you can swing the digital kindle version, or even just read the online free sample for starters. There are also youtube videos available by the authors that are informative.

Lidocaine patch - My review

I cut the Lidoderm patch in half  (to conserve and get a few more uses from them) and apply to the area that hurts most. I really need a bath towel size patch, but I digress.

It feels cool when I first apply it, warms to body temp quickly.
Then I wait to feel something. I keep mentally checking in to see if there has been a change in the pain level. I usually get preoccupied and forget I put it on.  Occasionally, I will feel a tiny bit of prickly feeling where the patch is.  Directions say to only leave the patch in place for 12 hours, leave off 12 hours.  I have saved the plastic backing and reapplied mine to use up as much of the lidocaine as possible (cheapskate). I've read its ok to do that, hope that is correct?

I can not say I have noticed much relief from the patch, but I keep putting them on hoping I will.
As it stands, I'm not thrilled with the lidocaine patch, it comes off fairly easy, curls up at the edges. I've even used surgical tape to make it stay on.
For me, it offers minimal pain relief. That's the scoop.

Gentle hugs~

Cringe

The other day, my son said to me- "My wife likes me to give her neck rubs, and I do, but I try to be so careful and she's like, "rub harder"!  I tell her I don't want to hurt her, and she says it feels *good*. 
I can't imagine that at all. It makes me cringe to just think about touching or rubbing the tops of my shoulders near my neck-especially if someone squeezes there."

TOS ~ Life XIX

A reason for TOSers to stay out of trouble

Did you see this in the news?
http://www.thetelegraph.com/news/owen-61491-deputy-mudd.html

"The resisting arrest charge was filed after Owen allegedly refused to put his arms behind him in order to be handcuffed.
Owen claimed that he is unable to put his arms behind him because of a birth defect called "neurogenic thoracic outlet compression syndrome."
~ ~ ~

I can imagine the pain that would cause.
So fellow TOSers out there...be good.