pain, heaviness, jelly legs

[Guest guest]

Joana,

There are many symptoms in the " CMT syndrome " and not all of us have

the same ones. Even people in the same family can have different

symptoms.

I do not have the bad pain, heaviness or jelly legs like you mention. Possibly,

my right side is weaker than left, but the right is dominant and gets more use

sometimes, making the muscles work more, so I just feel this is fatigue from

doing too much - like gardening for example. Lately I feel much more balanced,

and I feel that is due to some of my balance exercises in aquatics.

But I am wondering something, since your pain is in the morning, this

sounds like it could be arthritis pain. Arthritis pain is generally

worse in the morning and gets better as the day goes on. In the US

there are different medications to help with this, anti-

inflammatories, or others.

I once had bursitis in a shoulder and was given these anti-inflammatory

medications for that, plus the use of heat to help. Look up Naprosyn or Naproxen

and see if you have it or the equivalent in your country. Diet and nutrition are

known to help arthritis, as well as some aspects of CMT. There are different

types of arthritis as well with new advanced medications.

For your legs, are you wearing any type of brace support, AFOs, or

something? These help CMT people with footdrop and weak calf muscles to walk

better. It could be that since you have footdrop, your peroneal muscles are weak

(this is the muscle down the front of your leg)

Are you still going to hydrotherapy? At the gym do you feel OK or do you tire

easily? You might want to lessen your activity a bit, or not work out as hard

and see if that helps too.

~ Gretchen

[Guest guest]

Hi Jo- the rightside of my body is worse than my left. And I'm right handed. My

right foot drops and dangles much more than my left foot too. I've been wearing

AFOs fulltime since around 1988. My balance is MUCH better when wearing my

" legs " as I call them. I'm rarely barefoot anymore. My confidence level is also

way up there when wearing them.

I've been very lucky in the pain department. The pain I have is in my hips and

it's due to osteosporosis(sp). Vitamin D and calcium are VERY important.

My daughter has no pain with her CMT and my late son had MAJOR pain. Go

figure. It is amazing how differently family members are affected. Oh, I do get

jelly legs too, especially when I've over used them.

Barb Fl.

[Guest guest]

Hi Joana,

My name is and am 45. It's funny you should talk about being double

jointed. When I was a child, I thought it was so neat to be able to walk on my

tiptoes like a ballerina, I can do (or used to) be able to double joint my

thumbs and pop my hips out whenever I wanted to. Not so cool anymore.

Now I understand why I was able to do this. I rarely use Xanax anymore because

it makes me tired in the morning especially. It does help when I start to

hyperventilate and my lips get tingly and I can't breath. It seems everyone is

a little different with their symtoms. It's very comforting to know someone is

out there with something we have and can relate to, whether it is pain in the

hands, feet whatever. I always seem to find someone when I can say, " Gee,

that's what happens to me!! " .

Have a great day,

[Guest guest]

I have lots of pain from the nerves yet I can step on a nail and never feel it.

When I walk it feels like I have ten pound weights on each calf. EMG test are

easy for me because I can't feel them at all. I am presently taking creatine and

it seems to have helped that jelly leg feeling. My feet both drop if I walk to

far unless I wear my braces. My arms are beginning to feel heavy and I burn

myself if I am not careful cooking because I can't feel much. For pain Elavil

and Neurontin help, I also take vitamin C and E for my CMT. I have cousins who

have pain but no other symptoms, no drop feet or loss of feeling at

all.

I hurt more at bedtime when I finally slow down for the day. I do

water exercises and I go to a place called Curves when a trainer helps me

through a routine that makes me feel good just to do it. When I am at curves all

the ladies cheer when I finish my routine they are very nice and caring there

and a little encouragement helps my mental state a lot.

Cathleen in Arkansas