Re: Shoulder Weakness, CMT or secondary problem?

[Guest guest]

Hello Mandy,

Yes, I too have shoulder weakness on both sides. I thank God every morning

that I am able to sit up and get out of bed each day. I had a massage last

night for that exact problem. One thing I found out... it's important not

to over exercise those muscles.

Kay

[Guest guest]

Hi Mandy,

I have been having trouble with my shoulders for a long time..all I have been

told to do is exercise. Mine are kind of like frozen, having a hard time rising

my arms above my head or brushing the back of my hair.

My dad's were bad too...he had trouble feed in self , shaving..so forth! He was

a truck driver, over use of his shoulders..I don't know. He had CMT real bad.

Also diabetics have what they call frozen shoulders..

Interesting would like to know others with shoulders problems and CMT.

Geri

[Guest guest]

When I went to ...PT ..I was wondering if the exercising was that good for

me.They didn't act like the new that much about CMT..but then who does!

Geri

[Guest guest]

Mandy,

I too have had shoulder problems, weakness and pain as well as neck problems. I

had a bulging disc (C5-6) removed and the disc fused together. Lots of pain in

that area.

Dr.s (if you can get them to pay attention at all) seem to focus on what CMT is

and it stops there. They need to consider the repurcussions of the falling that

causes so many other issues. I have had the bulging disc, shoulder pain as well

as knee and ankle problems all stemming from continually falling.

CMT has long reaching tenticles that includes everything from joint problems

from falling to depression. Dr.s need to look beyond the clinical diagnosis and

see the whole package. Of course this has been discussed in many ways on this

forum and seems to be a source of frustration for many.

As far as waiting months after an injury to see a Dr., I too wait in hopes that

the pain will stop and things will heal without having to run to the Dr. every

time I fall. Sometimes things do heal and sometimes they don't. Most of the

time I go to the Dr. and say it hurts here, they do an xray and if it does not

show up on the xray they feel it is not real. Dr.s are very visual so if they

don't see it they can't seem to wrap their visual brain around it!

Good luck with the MDA Dr. I hope they hear you!

Cyndi

[Guest guest]

Joann,

Do you do stretching excercise???

Geri

[Guest guest]

JoAnne,

I can relate. My upper body is very strong, shoulders, etc. but my foot drop

makes it like I have two different abilities completely. If everything did was

upper body, I would be fine. Like I mentioned before, I just moved from Buffalo

and even though I had very cold hands and feet while shoveling snow, I sure felt

invigorated afterwards. Hope it does the same for you!

Dawn

[Guest guest]

Hi Geri -- No " formal " exercise. I just kinda move my shoulder in a circle

frontwards and backwards. Then do the same thing with my arm out (make circles).

JoAnn N.

Newfoundland, Canada (originally from NJ)

[Guest guest]

Thanks JoAnn...I'll try that...

[Guest guest]

Mandy,

I can very well be a CMT thing, especially if you find yourself sleeping on that

shoulder in order to breathe properly. I've had that problem for over a year

now, also numbness in my right arm and loss of function in my right hand. To a

certain extent I've solved the problem by propping myself up to and almost

sitting position with pillows and sleeping with a pillow under my torso, (

suspending my shoulder in the air) while laying on my side. That seems to have

solved the pain and reversed some of the weakness.

Ed

[Guest guest]

Thank you, Dawn, and everyone who posted responses to my shoulder

question. It is very helpful to find it is a fairly common issue

with other CMT'ers. I have been reading about SLAP tears of the

labrum of the shoulder joints. SLAP tears occur often when people

fall forward on their hands. This can tear the labrum which helps

keep the humeral head in the joint since the shoulder joint is very

shallow. However, that area of the labrum has very little to no

vasculature, so it does not heal well on its own. Repairs require

surgery, and I wonder how well they work? Anyone had one before?

Mandy

[Guest guest]

Funny you should ask! My son tore his labrum very badly years ago. He has had 2

surgeries and his shoulder still dislocates and even the simplest of tasks. In 2

weeks, he is having another surgery where they are actually taking a bone from

his shoulder to secure the labrum and this will limit his mobility, but ensure

that it will not keep coming out of socket. My brother-in-law had the surgery

also about 1 year ago and it has been very successful. Both of their injuries

came from sports, not due to falling.

Jackie

[Guest guest]

I have torn both my rotator cuffs. The right one in 1982 in a car

accident, that healed fairly well but is still a bit loose and

bothersome compared to before. The left one was in 1984 during a bike

accident -- hit by a car. That one has chronically dislocated over

the years. At first badly (several times per week). At that time they

had no good repairs to offer. Later surgical repair was better and

recommended but my children were small and I couldn't make the time.

Also they said if I tore it again during recovery it would be much

worse. So I waited. Now that I'm in my 40s it rarely pops out, seems

that everything is stiffening up a bit, which is positive for the

shoulders. The last time was Christmas day playing tennis on the Wii.

Both shoulders are often achy. PT seems to always make things worse

not better. I think that the extra " give " and slide that exists in my

shoulders add to the pinching of nerves making my wrists and hands a

problem in the last few years.

I can't say it was due to CMT, or because of my loose joints or just

because I was unlucky enough to have two accidents. I do think it has

exacerbated the CMT symptoms, though.

Holli

[Guest guest]

Wish my shoulders weren't so stiff..have hard time fixing my hair...

Geri

[Guest guest]

Jackie

This is very interesting, I also have a shoulder problem and I never

had any injury on them.

Yenny