Re: Double joints and walking difficulties

[Guest guest]

Joana,

My hips are affected. Sometimes I can feel one of them click, like it is out of

joint, but it is not. Someone once described seeing me walk from behind saying

that I walk like a mermaid. I raise my hips a lot to overcome the dropfoot (I

guess). I am lucky that I do not feel any pain, though.

Jackie

[Guest guest]

Two of my boys with CMT have very flexible joints. I am not sure if it's double

jointed though.

[Guest guest]

Hi Joana,

I know exactly how you feel.I am 65 and diagnosed with cmt1a when I was 55.I

have been having a lot of pain in my hip also.Dr suggested a back brace,which

only made things worse,I went for injections yesterday which seems to help with

the pain.When it comes to walking,I feel like I weigh a ton! Legs feel very

heavy all the time.I now use a scooter if I have any distance to go.Swimming is

my only exercise.

Donna L.

[Guest guest]

Dear Jackie,

God, This it it...Just like that...I have foot drop too...I too, walk like that

and I do feel the awful pain on the top of that...I do have a click in my right

side of my hip and also my right foot is the weaker one...In fact my rigt side

is the weaker one..

Now, can you walk long distance Jackie??? How long you have those problems? I

have mine for 2 years now... Thanks a lot for sharing with me Jackie. Take

Care!!!!!!

Joana in London

[Guest guest]

DEAR JOANNA:

ALL OF US WITH CMT GO THROUGH MOST OR ALL AND SOME DIFFERENT SYMTOMS THAT YOU

HAVE DESCRIBED. I WISH YOU FELT BETTER BUT SOMETIMES IT CAN BE FUNNY, LAST NIGHT

MY 59 YEAR OLD SISTER AND I WENT TO A CHURCH FUNCTION AND ON THE WAY HOME I SAW

SOME FRIENDS OUT IN THIER FRONT YARD SO WE STOPPED.

WELL AS WE WERE STANDING THERE I FELT WHAT WE HAVE ALL FELT BEFORE, THAT IS THE

FEELING LIKE YOU HAD BEEN SPINNING AROUND LIKE WE DID WHEN WE WERE KIDS TO GET

DIZZY. MY SISTER SAW THAT I WAS GETTING KIND OF UNSTEADY AND STARTED TOWARDS ME

AND AT THE SAME TIME I DID THAT RIGHT SIDE STEP LIKE I WAS REACHING FOR

SOMETHING TO HOLD ON TO.

I WENT ABOUT HALF WAY ACROSS THE YARD BEFORE I HIT THE GROUND. WELL, THEY ASK ME

IF I'D HAD TOO MUCH BOOZE AND HELPED ME UP AND MY SISTER GOT MY CANE.

YOU SEE THEY KNEW I HAD SOME KIND OF DISEASE BUT HAD NEVER SEEN WHAT YOU GO

THROUGH 24/7. SOME PEOPLE THINK I AM LAZY BECAUSE IT IS SO HARD TO GET AROUND

SOME DAYS THAT I JUST SIT AND READ ALL DAY.

I HOPE YOU HAD A GREAT DAY BECAUSE IT WAS 104 DEGREES HERE TODAY.

YA'LL TAKE CARE AND REMEMBER US TEXANS LOVE YA.

MICHAEL IN SAN ANGELO, TEXAS!

[Guest guest]

DEAR MICHEL,

THANK YOU SO MUCH FOR YOUR EMAIL. OH, DEAR...I REALLY HOPE YOU ARE OK ..ARE YOU?

DID YOU HURT YOURSELF MICHEL?

SO SORRY TO HEAR THAT YOU FALL DOWN ... DO KNOW THE FEELING, AND YOU ARE RIGHT

THERE...WE JUST HAVE TO KEEP GOING AND PRAYING TO HAVE DETERMINATION AND BE

STRONG IN YOURSELVES. SOMETIMES IT IS NOT EASY...

I REALY HOPE YOU ARE BETTER TODAY AND RELAXED... HAVE A GOOD SUNDAY.

PLEASE, FEEL FREE TO EMAIL ME ANY TIME...BY THE WAY, I DO HAVE RELATIVES IN

ALBUQUERQUE..USA!!!

I HOPE THE WEATHER IS A BIT COOLER THERE...HERE HAS BEEN TOO HOT!

TAKE CARE

JOANA IN LONDON

> DEAR JOANNA:

>

> ALL OF US WITH CMT GO THROUGH MOST OR ALL AND SOME DIFFERENT

SYMTOMS THAT YOU HAVE DESCRIBED. I WISH YOU FELT BETTER BUT

SOMETIMES IT CAN BE FUNNY, LAST NIGHT MY 59 YEAR OLD SISTER AND I

WENT TO A CHURCH FUNCTION AND ON THE WAY HOME I SAW SOME FRIENDS OUT

IN THIER FRONT YARD SO WE STOPPED.

>

> WELL AS WE WERE STANDING THERE I FELT WHAT WE HAVE ALL FELT

BEFORE, THAT IS THE FEELING LIKE YOU HAD BEEN SPINNING AROUND LIKE

WE DID WHEN WE WERE KIDS TO GET DIZZY. MY SISTER SAW THAT I WAS

GETTING KIND OF UNSTEADY AND STARTED TOWARDS ME AND AT THE SAME TIME

I DID THAT RIGHT SIDE STEP LIKE I WAS REACHING FOR SOMETHING TO HOLD

ON TO.

>

> I WENT ABOUT HALF WAY ACROSS THE YARD BEFORE I HIT THE GROUND.

WELL, THEY ASK ME IF I'D HAD TOO MUCH BOOZE AND HELPED ME UP AND MY

SISTER GOT MY CANE.

>

> YOU SEE THEY KNEW I HAD SOME KIND OF DISEASE BUT HAD NEVER SEEN

WHAT YOU GO THROUGH 24/7. SOME PEOPLE THINK I AM LAZY BECAUSE IT IS

SO HARD TO GET AROUND SOME DAYS THAT I JUST SIT AND READ ALL DAY.

>

> I HOPE YOU HAD A GREAT DAY BECAUSE IT WAS 104 DEGREES HERE TODAY.

> YA'LL TAKE CARE AND REMEMBER US TEXANS LOVE YA.

>

> MICHAEL IN SAN ANGELO, TEXAS!

[Guest guest]

Joana,

I have these symptoms. I know for sure stress makes them worse. Meditation

helps relax me as does theraputic massages. I have learned to pace myself and if

I over do I am learning to take naps. Also the more I walk the more stress I

have and the more stress the more pain and the less I sleep. Tt is viscious

circle and I am working harder in my mind to go with the flow of my daily life.

Laughter is absolutely the best way I handle my life with CMT. You are not alone

with these symptoms.

Cathleen in Arkansas

keep smiling it makes people wonder what you have been up to...