Re: Does standing for a prolonged amount of time make CMT worse?

[Guest guest]

I have noticed also that I am in more pain when I stand for long periods of

time. My right hip especially bothers me when I am cooking or ironing and am

on my feet for extended periods of time.

I try and wear comfortable shoes with support but even that does not

prevent me from getting so tired. I do keep going, though, since pain is

beginning to be a permanent part of my life. I just try to grin and bear it but

sometimes it gets to me.

Does anyone else feel that others might view us as hypochondriacs? I feel I

have put up with tons of medical issues and I keep it to myself and my husband

for the most part, but it seems like there

are so many symptoms that other family members think that I always have

something going on.

I haven't been to my neuro in three years, I rarely take pain pills unless I am

in horrible pain, etc. but I still feel that others judge because they don't

know what's going on. People with CMT look great on the outside so it is

really confusing for others to understand why we are in pain or get tired so

easily.

I just find it frustrating at times when others voice opinions about CMT, or

issues they know nothing about, while we are suffering

from this weird disease. UGH!!!!

Karon

[Guest guest]

,

Yes and no. Depends if you are standing and moving around (like walking) or if

you are standing in only one position for hours. The walking is good. The

standing on one place is not only a killer on the feet oh how I remember my

early days in retail) but it can also cause joint/back problems later on, not

necessarily CMT related however. If you can take breaks every 10-15 minutes that

might help the pain. And make sure to wear some very comfortable and supportive

shoes.

Gretchen

[Guest guest]

:

Standing for long periods of time is not good for anyone even if you are not

diagnosed. If you can stand for longer periods of time just make sure you move

your hips or push up and down your knees and lift your feet at times...this

keeps the blood moving and prevents clots. Anything that one does too much of

is never a good thing.

[Guest guest]

Hi ,

The amount of excersize or standing that you can do with CMT is individual. If

you feel really tired afterwords or if you get pain from your muscles (not nerve

pain) than it is too much. Otherwise, I would not recommend that you stop

standing. Personally, I can stand for hours too, if I have something to hold

onto. Standing is not worse than sitting for me. Actually I like standing, and

my desk at my work is moveable, so that I can chose if I want to sit or stand.

There is also the alternative to stand-sit, using a high chair. There are

foldable high chairs that you can bring to your volunteer job maybe.

Good luck,

Beata

[Guest guest]

Karon:

You have to communicate with your family about your CMT. Don't assume anything

of what your family thinks. It will drive you crazy...as it sounds like it in

your post. When standing you need to move your legs; hips, knees, feet. This

keeps your blood moving and helps you prevent pain. If all else fails you need

to sit so you will not fall or hurt yourself.

[Guest guest]

Karon,

I found that if I take a five to ten minute break sitting down and putting

my feet up when I start to get tired I am good to go for a while again. I

used to push myself for the same reason you described. I don't worry what

people hink anymore. If they don't like the way I do things they can get

over it or help or do it themselves because they aren't going to make me feel

like I'm less of a person. And if they can't at least try to understand and

have just a little compassion for their fellow human then I don't need

them. Stress is a killer and I'm not just going to roll over and die.

[Guest guest]

Amen, Cindi!!! Thanks for responding...it lifted my spirits!

Karon

[Guest guest]

I avoid standing in one place too long for that reason. I'm in more pain if I

stand in the same place for too long. I iron sitting down. I use a stool in the

kitchen when I bake or cook. I don't take pills unless I'm in severe pain

because I'm afraid I'll build a tolerance to the medications.

I use to worry about what other people thought about my CMT. I agree with the

person who said it " takes up too much rent " in your head. The bottom line is

worrying about what others thinks leads to your stress levels raising and your

symptoms increasing... it's a vicious cycle. I try not to worry about others'

views anymore. Their views are their problem - not mine.

Love your comment below about people with CMT looking great on the outside. So

true!! The bottom line is the people who care about you will try to

understand and those that don't aren't worth worrying about.

Take care,

T.

[Guest guest]

Looking great on the outside is so misleading.  I tend to wear workout type

clothing because it goes with the shoes I have to wear.  I get so many comments

from people who say, you are in such good shape, you must workout alot. They

actually see me as " Athletic "   Ha!  Then I pick up my cane and walk away and

they are so surprised. 

Cyndi

[Guest guest]

Good for you Cyndi! Don't you love it when you surprise others?!

Karon

Looking great on the outside is so misleading.  I tend to wear workout type

clothing because it goes with the shoes I have to wear.  I get so many comments

from people who say, you are in such good shape, you must workout alot. They

actually see me as " Athletic "   Ha!  Then I pick up my cane and walk away and

they are so surprised. 

Cyndi

[Guest guest]

Last Saturday, the annual Mille Miglia tour passed by my building. The Mille

Miglia was an automobile endurance race that started in Brescia in North Italy,

looped around Rome and returned to Brescia -- a distance of about 1000 miles.

The last true race was held in 1957. It was stopped because 11 spectators were

killed along with the driver and navigator in the unfortunate car. Had 11

drivers and 2 spectators been killed instead, probably the race would still be

raced today.

http://en.wikipedia.org/wiki/Mille_Miglia

Today, the Mille Miglia is a rally using as much of the classic route as

possible. This year 375 entries were chosen from the 600+ applications received.

To enter, a car must have raced in one of the 24 original races.

The rally left Piazza San Pietro (St. 's Square) at 6:30 A.M. and passed by

on the Lungho Tevere (translates as Along the Tiber) about 30 minutes later. The

cars started by age -- the oldest first, with a parade of Mercedes Benz 300SLR

-- the Gull Wing beauty -- riding drag.

Along with support cars, police escorts, normal Rome traffic, and a single

garbage truck making collections, it took about 3 1/2 hours to complete. I stood

the whole time.

I walked home -- about 150 yards -- and slept for 2 hours.

At least for me, standing is much more fatiguing than walking. In fact, the

inability to stand forced me into disability/retirement. I was teaching high

school math and couldn't take all the standing.

I think the fatigue is due to decreased blood circulation while standing still,

and the constant involuntary leg muscle activity caused by the proprioceptive

requirements of standing.

By balance is much stronger when I am walking, sort of like a gyroscope

spinning.

Now if I can only find routes that are downhill in both directions, life would

be so much easier!

Regards,

--Larry.

P.S. I have pictures of some of the cars. Unfortunately, I tossed more than I

saved learning how to best capture a moving car. I will upload them the members

wish to see them.