Exercise

[Guest guest]

I've got to wade into the discussion about exercise!

I exercise alot! I'm male, 42 years of age, and was diagnosed about 4 or 5

years ago. At the time I was diagnosed I was paddling racing canoes 3 or 4

times a week (90 minutes per practice), lifting weights, riding my bike, and

a bit of jogging (though I'm not much of a runner!). I was quite concerned

when I read reports saying it was harder on CMT muscles to recover after

physical exertion. I worried that I might be doing my body more damage by

continuing to exercise.

I read as much as I could and interpreted, in my own way, that it might be

okay if I didn't change what I was already doing. I continued on with my

fitness regime with no major changes in the amount.

Then I went to a CMT specialist a couple years ago (Dr Gibson in Vancouver,

Canada) and after checking me over, including taking pictures of my feet

( " I'm going to use them as an example for my students " , she said, " They look

almost normal when you're standing on them, but they look like textbook CMT

feet when you relax them off the ground! " ), she eased my concerns by telling

me that my physical fitness, as a result of all the exercise, was the best

thing I could be doing to help battle the progression of the disease, and

how it would impact me.

I probably exercise more now, and I continue to follow mainstream fitness

thinking - aerobic workouts 3 - 5 times a week, minimum 20 minutes (more

likely 60 - 90 minutes); 72 hours rest after weight-lifting (anaerobic) -

working specific muscle groups each day allows my muscles to heal. Without

getting carried away, I try to eat proper amounts of carbohydrates/proteins

and fats (mainly I'm just winging it - I don't know the exact percentages of

each) . And when in doubt, I add more fruit or vegetables to whatever I'm

eating. Mainly, I eat ALOT! I take Vitamin C, CoQ10, Alpha Lipoic Acid, and

Omega 3(?) because I read they might help.

Sorry this was so long. I'm a swim coach, and a paddling coach, plus I work

with people with mental disabilities helping provide them with physical

fitness opportunities in the community. All this means I'm a bit of a

cheerleader for physical fitness. I could go on and on, but I should really

get off my soapbox.

Just remember, physical activity makes you feel good, and is good for you in

many ways. It doesn't have to be running a marathon, or playing football or

basketball. It could be walking (assisted or not) around your yard or house,

or moving around in the pool. If you've just started exercising, you will

feel tired. Listen to your body, but know it'll take some time and

commitment.

Hope I haven't offended anyone. My Mother is on this list and she'll back me

up - I'm quite yappy about exercise, but I mean well.

Don Mulhall

Penticton, Canada

[Guest guest]

In a message dated 4/12/2006 9:26:05 AM Central Standard Time,

natsmom823@... writes:

Are any of you able to run? I have been walking with the baby in a

stroller but it just isn;t the same as running.

i am able to run for very shot distances if needed. Usually getting my

daughter out of something. lol How old is your baby? If i am doing anything

physical outside i use a knee brace. Not sure if it helps that much, but its

better than going without. Start slow and dont push yourself or your joints

will get you for it. HUGS

http://www1.myspace.com/julz2kidz

[Guest guest]

In a message dated 4/12/2006 10:34:03 AM Central Standard Time,

natsmom823@... writes:

My daughter is 19 months old. I adopted her from China in

August. Yes I run after her too, she is curious and into everything.

The best decision I have ever made was going to China and bringing her

home. She brings a lot of joy, even on the most pain filled days.

My concerns are that my wrists will hurt from pushing the stroller

while pounding the pavement...but I REALLY NEED exercise!

Maybe soon I will try a short distance. like 10 feet lol

I know it is probably realistic that I won't be able to run longer

distances.

I would be happy if I could get to 3 miles sometime this summer, who

knows?

Congrats on becoming a mommy! is a pretty name sounds like she

keeps you going. My daughter is almost 3 and into everything.Maybe try fast

paced walking at first, then short distances. Let your body tell you what is

too much. hugs

http://www1.myspace.com/julz2kidz

[Guest guest]

Hi there,

I asked my Rheumy about running and she said absolutly not...that I

could walk or swim.....that running was very hard on the joints.

natsmom823 wrote:

> Hi everyone.

> I have a question about exercise.

> Now that the weather is getting nicer here in Syracuse NY(ie no

> snow!), I would like to be outdoors with my little girl.

>

> Before RA, I was into running, I am slow but it is great stress relief

> after a long day of work.

>

> My rheumy has discouraged running saying " we'll see " ...

>

> Are any of you able to run? I have been walking with the baby in a

> stroller but it just isn;t the same as running.

>

> I would hate to be in more pain, but like others feel the need to

> exercise for stress relief as well as the cardio aspects and weight

> control. Is this something I am really going to need to give up?

>

> Hope you are having a painless day!

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Thanks.

My daughter is 19 months old. I adopted her from China in

August. Yes I run after her too, she is curious and into everything.

The best decision I have ever made was going to China and bringing her

home. She brings a lot of joy, even on the most pain filled days.

My concerns are that my wrists will hurt from pushing the stroller

while pounding the pavement...but I REALLY NEED exercise!

Maybe soon I will try a short distance. like 10 feet lol

I know it is probably realistic that I won't be able to run longer

distances.

I would be happy if I could get to 3 miles sometime this summer, who

knows?

>

>

>

>

> In a message dated 4/12/2006 9:26:05 AM Central Standard Time,

> natsmom823@... writes:

>

> Are any of you able to run? I have been walking with the baby in a

> stroller but it just isn;t the same as running.

>

>

>

> i am able to run for very shot distances if needed. Usually

getting my

> daughter out of something. lol How old is your baby? If i am doing

anything

> physical outside i use a knee brace. Not sure if it helps that

much, but its

> better than going without. Start slow and dont push yourself or

your joints

> will get you for it. HUGS

>

>

>

> http://www1.myspace.com/julz2kidz

>

>

>

>

>

[Guest guest]

sounds like a good idea.

my body always lets me know what I have done to make it hurt, I need

to set new limits on everything.

honestly, is what keeps me going a lot of days. I need to be

able to take care of the little girl that I have waited so long to have!!

>

>

>

>

>

> In a message dated 4/12/2006 10:34:03 AM Central Standard Time,

> natsmom823@... writes:

>

> My daughter is 19 months old. I adopted her from China in

> August. Yes I run after her too, she is curious and into everything.

> The best decision I have ever made was going to China and bringing her

> home. She brings a lot of joy, even on the most pain filled days.

>

> My concerns are that my wrists will hurt from pushing the stroller

> while pounding the pavement...but I REALLY NEED exercise!

>

> Maybe soon I will try a short distance. like 10 feet lol

> I know it is probably realistic that I won't be able to run longer

> distances.

> I would be happy if I could get to 3 miles sometime this summer, who

> knows?

>

>

>

> Congrats on becoming a mommy! is a pretty name sounds

like she

> keeps you going. My daughter is almost 3 and into everything.Maybe

try fast

> paced walking at first, then short distances. Let your body tell

you what is

> too much. hugs

>

>

>

> http://www1.myspace.com/julz2kidz

>

>

>

>

>

[Guest guest]

,greetings

A sweet daughter and a greatest mom!

, have you wondered maybe wearing wrist bands

or gloves (cut the fingers off them) Just a thought

Sharon ribbon54sews@...

natsmom823 <natsmom823@...> wrote:

Hi ,

Thanks.

My daughter is 19 months old. I adopted her from China in

August. Yes I run after her too, she is curious and into everything.

The best decision I have ever made was going to China and bringing her

home. She brings a lot of joy, even on the most pain filled days.

My concerns are that my wrists will hurt from pushing the stroller

while pounding the pavement...but I REALLY NEED exercise!

Maybe soon I will try a short distance. like 10 feet lol

I know it is probably realistic that I won't be able to run longer

distances.

I would be happy if I could get to 3 miles sometime this summer, who

knows?

>

>

>

>

> In a message dated 4/12/2006 9:26:05 AM Central Standard Time,

> natsmom823@... writes:

>

> Are any of you able to run? I have been walking with the baby in a

> stroller but it just isn;t the same as running.

>

>

>

> i am able to run for very shot distances if needed. Usually

getting my

> daughter out of something. lol How old is your baby? If i am doing

anything

> physical outside i use a knee brace. Not sure if it helps that

much, but its

> better than going without. Start slow and dont push yourself or

your joints

> will get you for it. HUGS

>

>

>

> http://www1.myspace.com/julz2kidz

>

>

>

>

>

[Guest guest]

Hi,

I absolutly agree that every day exercising is of great importance but

going as far as faigue seems to me a risky business. CMT's muscles

don't like to be overworked! I exercise every morning, while still in

bed: stretching, contracting and releasing mostly leg muscles - but

rather gently. If I insist to much I may suffer later on. The same for

walking: brisk walk is not always possible - especially when you limp

or have numb legs … And I'd rather play darts then do push ups.

Now a question to everybody: does anyone has CMT plus pyramid syndrom?

I do have and it complicates the picture.

Roman

[Guest guest]

Yes, I am still experiencing the gb pains after exercise. I wonder why? If

you find out anything please let me know. I haven't been running, but I

have been walking several miles - a sort of kicked up walking with arms and

weights.

Traci

-----Original Message-----

From: gallstones [mailto:gallstones ] On

Behalf Of cbaker92975

Sent: Tuesday, September 05, 2006 8:25 AM

gallstones

Subject: exercise

Hello, I must have deleted the message, but just the other day

someone was asking if maybe exercise could bring on a gallstone

attack. They had experienced attacks after running. I have recently

been diagnosed with gallstones, my first attack after having run 6

miles. I have since had 4 attacks, each one after some form of

exercise, the most recent was last night, I jumped on the trampoline

with my kids. I also found that a hot bath helped me to better handle

the pain, especially when my husband poured hot water over my back.

Hope this helps someone.

[Guest guest]

exercises shake the whole body including gallbladder and the stones settled at

bottom start floating in the bile. strike with gallbladder walls and stuck into

the opening of the gallbladder. thus causing pain

kishan singh

delhi

Traci <tracic@...> wrote:

Yes, I am still experiencing the gb pains after exercise. I wonder

why? If

you find out anything please let me know. I haven't been running, but I

have been walking several miles - a sort of kicked up walking with arms and

weights.

Traci

-----Original Message-----

From: gallstones [mailto:gallstones ] On

Behalf Of cbaker92975

Sent: Tuesday, September 05, 2006 8:25 AM

gallstones

Subject: exercise

Hello, I must have deleted the message, but just the other day

someone was asking if maybe exercise could bring on a gallstone

attack. They had experienced attacks after running. I have recently

been diagnosed with gallstones, my first attack after having run 6

miles. I have since had 4 attacks, each one after some form of

exercise, the most recent was last night, I jumped on the trampoline

with my kids. I also found that a hot bath helped me to better handle

the pain, especially when my husband poured hot water over my back.

Hope this helps someone.

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Gretchen,

Yesterday I was feeling pretty good and did some housework and all in all, had a

great day. This morning all my muscles felt like piano strings ready to pop. I

do stretch in the mornings, but I'll be damned if I could barely get out of bed

at all. Why do they tense up so much during sleep? It's now almost 3 p.m. and

I'm still trying to get my palms to the floor which I usually can. Do I have to

do MORE or less exercise? I'm walking on the beach with my cat every night, I'm

thinking it's the sand.

[Guest guest]

Hi ,

Perhaps your muscles got overworked with the sand walking AND

housecleaning. Walking in sand will REALLY work the muscles. How far

are you walking, is it a flat walk (meaning no mounds of sand) or are

you walking up and down mounds of sand? You may really need to pace

yourself, a little bit of walking, a little housecleaning, etc. Start

out slow, very slow. You may be doing too much, keep trying to *

gently * stretch your muscles. Are you in a yoga or pilates or tai chi

class? A beginner's class for you might be an idea. Here the newest

tai chi classes are on the beach

Your muscles may be contracting during sleep because they are

overworked. I used to have bad contractions, evenings, so bad I

couldn't get to sleep. It takes awhile for us to learn that we don't

have to do it all, nor do we have to do it all at once

~ Gretchen

P.S. They are not " hot flashes " , but are instead " power surges " ! lol

[Guest guest]

Hi Gretchen,

The sand is only the size of 2 family lots and is flat. I do walk back and

forth though, usually before the sun sets or until my cat gets pooped out. He

found a crab hole and it's so funny watching him put his paw in all the way to

his shoulder and then gets nipped on by the crab!! After that he goes crazy

running in circles around the hole (I don't think he can figure out what's in

the bottom of it that keeps nipping him) and does it all over again.

I'm going to take it easier like you said. Did you see on GMA the other day

they said regular housework is a better workout than biking, running, etc. Even

the reporters had a hard time swallowing that info, but when you think of

it....all the stretching, bending, scrubbing (I like to do the floors the old

fashion way, on my hands and knees) it kind of makes sense. WOW, now I can

scrub and in the back of my mind know I'm getting something out of it..lol....

The classes you are talking about, yes they have them, and no I can't afford

them. There you go...I'll just keep cleaning. I'm laughing out loud right now,

which is a good thing OR I'm crazy!!

By the way, I had my neighbor, age 7, over the other day and we were going

through my shells. I let her take whatever she wanted BUT she came across a

conch shell I've had for awhile now and I had to tell her it was for a friend of

mine. So, I'll look through my address book again, OR you can e-mail me on my

line and tell me your address again and I promise I'll get it out this week with

some other shells. Sorry it's only taken how many years??

Love to All,

[Guest guest]

I agree with Adah. Exercise has taken the pounds off me too. Just

like her, I had to slowly work myself up 5 minutes at a time.

After 2 years, I am up to 45 minutes a 3.5 speed. Doing this and

watching my diet, I lost 35 pounds. My diet plan is in the files

section of this group.

My waist size went from a 40 to a 38, coat size from a 46 to 44 and

neck size from an 18 to a 17. Yes, there is weight loss and LIFE after

Evil Candy

Doug

Group founder

co/owner/moderator

[Guest guest]

Hello Everyone,

I live in Miami, Florida and have CMT 2, which I have had as long as I can

remember. I had many surgeries on my heal cord, toes being fused, and one

trying to correct my high arch. I am 39 I have 4 kids with only one confirmed

CMT son who has many problems with CMT, Hip Dysplesia, knee knock, etc.... but

is very bright so GOD gave him a very high IQ when he inherited this disease.

I have not been to any doctor about my CMT for a very long time. I have started

falling guite a bit, so I think it is time to look into braces. I am about 20

pounds overweight and my husband swears I can exercise. But does not understand

when I ride the stationary bike even for 15 mins by the end of the day after

working, 8 to 9 hours and doing the all the taxing for the kids everywhere my

muscles are even weaker and I just don't the any energy to walk to bed.

My question is, is it the CMT or is it me trying to want to exercise? My

husband says I should be able to ride the stationary bike with no problems, and

my body tells me other wise, is it just me or the CMT?

Thank You

Anne Katz

[Guest guest]

Anne,

Could be your due to check in with a Neurologist and orthotist -

just a suggestion, but if I was falling alot, I'd do that.

Extra weight makes 'normal' exercise more difficult. Plus in your daily life

with the kids, work, your muscles could be getting used up too fast.

Could be exercising after your day is over is too much. Is there a way you can

try exercise in the morning, just a bit, to see how your muscles react? I have

experimented with exercising at different times for about 25 years and the best

time for me is in the mornings.

As for exercise, start real slow, gentle. Is there anywhere there you can find

an good cardio Aquatics program? This is good for CMT, takes the stress off

joints, and depending on the intensity you can work up, will also help weight

loss.

You might want to look over our File Folder on " Exercise " .

Remember, CMT persons muscles have to work twice as hard to do half

the work as a non-affected person. Maybe read that to your husband.

~ Gretchen

[Guest guest]

Hi. I don't know if this is any help or not but long ago my doctor told me that

exercising to the point where your muscles are tired (which isn't much) just

destroys the nerves faster. The more tired your legs get the faster the CMT

progresses.

Susi

[Guest guest]

Anne,

I had all that foot surgery in '76 and needed orthotics in '94 when I was 39.

I'd go to a neurologist and look into getting AFOs. You could hurt yourself in

one of those falls; the AFOs could

prevent that.

I say your hubby is just flat out wrong.

Ephraim

[Guest guest]

I've read this somewhere also where if you exercise to the point where your

muscles begin to tic and spasm you are causing nerve damage. Unfortunately one

often finds themselves in a position where they must keep going despite the need

for rest.

I also know that if you over exercise, the muscles will simply stop working. I

had that happen once. I climbed the shot tower on I-77 in Virgina,(it's only

70ft high) I made it up and down again but I was shaky, I got back to the car

and drove to a motel. I couldn't get out of the car, my left leg just wouldn't

work. I took about 3 hours of rest before I could walk again. I've been careful

since.

[Guest guest]

Anne,

I can't ride the stationary bike one cycle, so it not unusual. When I was first

having symptoms, I remember my father had me ride the bike and I did 10 miles

and he said, well, then there must be nothing wrong with you!

After I exercise, my legs are very tired and sometimes I have to come home and

get into bed to let them rest. I try to push myself, and it is my husband who

makes me stop exercising before I want to stop. Listen to your body and maybe

try a different type of exercise. I have started doing strength training on

upper and mid body and when the pool opens, I will start with aquatics.

Jackie

[Guest guest]

Anne,

It sounds like your husband really doesn't understand the fatigue that

can come with CMT. There was a previous post recently where this was

discussed. Perhaps showing that post to your husband would help him to

understand. The post was titled Ways to describe our hidden

disability.

On the exersize - I know I should, but don't, so don't have any

suggestions to offer.

Tonya

[Guest guest]

Hi,

Just wanted to put in my two cents......on the exercise issue. From my

experience of ten years ago, I'm now much worse than I possibly would be.

I have always been fat and I decided to join WW and a local ladies only gym with

my sister (doesn't have CMT). We worked out 2-3 hours 5-6 days a

week...........you know it isn't working unless it hurts. VERY, VERY BAD FOR US

CMTers. At that time I did not know that I had CMT, knew I had same thing as

father and grandfather.........but was not as well educated as now.

Well long story short I lost 147#, and then had to start wearing AFOs because of

loss of ability to walk without tripping and falling. Between not able to work

out like I had been and the fact of learning about my disease and depression, I

have since gained back my weight..............stupid, stupid, stupid.

So if I had to do over, which is what I am currently doing, Work out only as

much as your body will allow and eat healthy. I've joined WW again and have

lost nearly 20#. I would never tell a person with CMT to overdo, because it

could really do more damage than you could possibly realize.

Today is a beautiful day, enjoy.

Connie,

P'burg, OH

[Guest guest]

I am not sure I agree - exercise surely cannot destroy nerves or muscles but

clearly we must respect our limitations while at the same time testing them.

Best wishes from London,

Donna

Please consider supporting my 2007 fundraising activities - click through to

learn more - http://home.earthlink.net/~sponsordonna

[Guest guest]

Donna & group:

I basically agree with you, except that, with CMT, I have

experienced that a lot of how we react to exercise relates to HOW we

exercise, not just in terms of overdoing it. For example, about

eight or nine years ago when I was in Grad school, I decided that I

should get over my vanity and wear my AFOs as directed; I had not

been falling a lot or anything but I had been told they may help.

They did help some, but I also started a fairly intense exercise

regime and exercised WITH the AFOs on.

My exercise included several miles of walking, treadmill and stairstepper.

Months later I found that my CMT had rapidly WORSENED, that I had lost a lot of

balance and had some major atrophy in my calves.

Later I figured out, and my doctor verified, that my intense exercise was

accelerating the problems mostly because while I was exercising the tops of my

legs were getting stronger but the part with the AFO was not having to work at

the same intensity and thus the imbalance and atrophy increased.

Since that time I stopped wearing the AFOs but do exercise

quite a bit. I have regained a lot of strength, balance and

endurance from water aerobics, use of the eliptical machine and

treadmill, a bit of pilates and, most recently, a lot of dog

walking. Since I resumed the exercise, I can honestly say that,

while my CMT is not cured, I can walk faster and further than at any

time in my entire adult life!!! (I am 37,CMT Type 2, CMT dx'd in my

teens but noticed symptoms earlier). I have lost weight, my balance

is better and I feel better. I am a HUGE advocate of exercise.

However, exercise is not all that I do: I also take a LOT of vitamins and go to

healing touch sessions fairly regularly. Unfortunately, though, I have not been

able to regain my atrophied calf muscles.

I am not suggesting that folks who need AFOs throw them out.

I am saying, though, that it is important to do whatever kind of

exercise you can without the AFOs (even if it is minimal stretching

or water work) so as to maintain as much muscle and use as possible. As others

have said, it is also important not to overdo it.

Hope this helps.

Peace,

- Marti

[Guest guest]

Hi Marti,

I could not have better expressed this myself. I do not wear AFOs but I do know

that I need to pay attention to certain points when exercising.

For example, I have to remind myself when on a stationary bike and my toes are

in the toe straps that means pull up with my quads, not just push with my

hamstrings. That way I am not causing any muscle loss by not using the right

muscles - it is easy for us to forget what muscles do what as we tend to

re-train ourselves according to what is easier to do. Which is what ultimately

leads to the muscle loss - a lack of use and a clear problem transmitting the

signals to be used.

I have also found that for each day of doing any exercise I MUST remember to

stretch out really well. Otherwise I feel like enstein legs walking around

after. I take about 20 minutes after exercise to do this. And this is for me

just as important after a day of simple walking around as a concentrated 30

minutes at the gym. I also try to remember to stretch out in the morning right

when I wake up - it sets me up well for the day - but a lot of times I do not

have the time in the morning as it is easier to stay

in bed and enjoy 15 extra minutes of sleep - night is just as well though.

It is all linked together in my opinion - good health means good habits with

food, exercise and stress management - adequate sleep, not getting too worn out

or overdoing any one thing - and listening to my own personal limits.

All the best from windy England,

Donna