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Re: pain questions

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Kathleen,

I know the pain you talk about, and your right...it's not from sore

muscles. I have had that same pain...and yes Doctors really never know what it

is. Three weeks ago I hired a personal trainer to look at everything (physical,

mental, nutritional). He doesn't know anything about CMT so I have been

teaching him. It's nice to have an unbiased view, unlike some doctors or PT's

tend to have. The one thing he has done is increase my protein intake. I'm

very active, ride a mountain bike, hike, swim, and work out in the gym 5 days a

week. In the past I would work myself to hard because my brain would take over

and say I could do these things I used to do, but yet my body could not keep up.

I would suffer from what I call " the heebeegeebees " , otherwise the

pain. He started with my diet and had me right down everything I eat. We

realized that my body was eating away what little muscle I had because of a low

amount of daily protein. For the past three weeks I have been consuming large

amounts of prtein (120-140gm) per day. I went hiking yesterday with my DH and

he couldn't beleive I wasn't rathing in pain afterwards from the strenuous hike.

Protein helps build muscle. If we don't have enough protein, our bodies will

sacrifice itself in order to obtain what it needs. For those of us with CMT,

loosing muscle (what little we have) is not an option.

I really don't know if there is any scientic evidence out there that

backs this all up. But it's working for me...and beleive me...I know pain.

Jean

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J Hart,

Your daughter could be feeling the 'burning' nerve pain in her feet. I

felt this when I was 7, it's been with me on and off my entire life.

As a kid I'd take my shoes off whenever I could. At camp, I waded in

the cold streams (and of course fell in) At home in our yard, when my

father watered his flowers, I'd ask him to " water " my feet. lol, we

made it a game, but it sure felt good. One thing that absolutely made

my 'burning' feet burn more was socks. To this day I hate them, and

don't wear them.

I change shoes frequently during the day, use ice, sometimes

Biofreeze, and more recently the new suede covering of my in-shoe

orthoses limits the burn. Baby powder with aloe and Vitamin E helps

too. So does standing on the tiles for awhile. Foot massages while I

am completely prone also do wonders in minimizing the 'burn'.

~ Gretchen

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  • 1 year later...

Leigh

The back pain was the worst part for me. I think it must be because we lay in a

position we are not accustomed to during surgery. I never could lay on my back

without pain until I lost most of the weight.  Stay on top of your pain meds.  I

needed a chiropractor visit about a week out to get my back adjusted back in. It

wasn't band related, just the rest of my body not cooperating.

Kathy R in Walla Walla

10/13/2005

From: seattlegrrl36 <seattlegrrl36@...>

Subject: Pain questions

Date: Tuesday, September 2, 2008, 6:20 PM

I was banded this morning at NWWLS and am wondering if anyone else

had

back pain afterwards? My mid back has been aching all day and am

curious if this is normal. That hurts worse than the pain in the front

and am not sure if it referral pain or something else.

Advise?

Thank you,

Leigh

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Leigh,

I too had back pain, pretty severe to where I thought something was really

wrong.  I called Dr. Ortiz (cause he gave me his cell number!) and he told me to

take some Aleve.  It helped immediately.  He said that due to the flight down to

have my surgery, being on the hard surgery bed and then the flight back, that

this was pretty normal.  He said that if I didn't feel better, I should go to my

physician and get some muscle relaxers, which I didn't need to do.

The amazing thing to me was that I could never take Aleve before due to my acid

reflux but now I can!  Just one of many things that I am thankful for since

being banded.

in Everett

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