Self Care Program
 

Anyone tried Sharon Butler's TOS self-care program? I got mine in the mail the other day and started on it. It felt really good the first time I did it. (Gentle stretching of the neck and shoulder muscles) I felt sore the next day, but I expected that. Did the exercises that morning and evening (yesterday) and today was in more pain.

The scary part was that I started feeling nerve pain in my "unaffected" arm this afternoon, while working. It was a light day for playing, which was a good thing, because Wednesday was a long, tough day.

I didn't do the exercises today because I was afraid. Any advice?

Sue

I have and still do use her program.

I have seen her replies to others with the same problem.

It seems we often get too carried away at the beginning and are stretching just a bit too much.

The secret is just to find the smallest sensation of a beginning of the stretch - and hold it there - do not go beyond that slight sensation.

You almost need to close your eyes and really focus on only finding and feeling that.

I admit I had to read her book a few times thru for it all to really sink in.
Plus reading her posts to myself & others on the web.
You can do a search of her name to find more info. I believe she takes questions on her site too.

I think she says if you are uncomfortable or increase of pain or symptoms - rest.
Even if you just do the laying on the floor and relaxing part many times a day
but don't put arms out to any uncomfortable angle- be comfortable and focus on the relaxing part and breathing properly

Then after it calms down
restart and go slow - think baby steps
find that smallest sensation of a tiny stretch only
and then slow go with it

Thanks, I didn't feel like I was pushing myself, but I must have been. I'll try to remember not to stretch beyond the first feeling. I'd already figured that week one would last much longer than a week, since I've had TOS for a couple of years.

Sue

Dear Sue,

Ever since I've had TOS (5 1/2 years now) I have NEVER been able to tolerate any physical therapy. Every time it just caused pain. It got to the point that the very reputable PT that I was seeing basically said they are only comfortable waving their hands over me...and feared just touching me. I was able to get in some lymph nodes drainage massage - that is where they have a specific path they move their fingers lightly and slowly across the head, neck and upper bod. If you haven't had it, check around as it is good I think to help avoid RSD / CRPS from starting in.

I now can have very, very light soft massage. But if the person goes a little too hard, then I will have heightened pain about 5 hours later, up to a week longer.

If you can do the Butler self care but do it lighter, it is so beneficial if you can somehow keep up some level of PT. Don't forget that you can also get by mail Edgelow (up in Berkeley, on our doc list) PT system, that is very highly recommended and has helped many people here.

I am really sorry you've developed TOS, and as is true for so many of us, (musicians, people who love arts and crafts, etc.), it's just so sad that it takes away what we love most, and for many of us, our careers, such as mine, that I loved.

So anyways, do the best you can, try to remain positive, and if you haven't seen one of our top docs about surgery yet, in all of the TOSers I've met, every single one has benefited to some degree (that's the key) by their rib removal and scalenectomy.

God bless.