Hi everyone. It's my first time on. I am experiencing much pain in my fingers and hands, my left more than right and my fingers are contracting and painful.
I am wondering if anyone has found something that helps? I have CMT, wear bilateral AFO's and also have arm splints to wear at night. But in the mornings when I wake up, they are on the floor. haha. They do provide support for my wrists that contract during sleep and for my fingers. I am more in need of something for hands/fingers for during the day.
My grip/grasp is almost gone and hands are very weak. I drop dishes all the time and it is no longer safe for me to use knives in the kitchen. I was looking into some finger tip-less gloves for support like some people wear for arthritis but I don't know if I would be able to get them on and off. They are compression gloves and while the sound of this is appealing to me for pain relief, I have no experience with this type of thing.
Sorry you are experiencing pain; I can relate; My hands had that kind of pain for years before I knew what was wrong and before diagnosis! Finding out what I was battling helped me to adjust my level of activity and to learn to change my activity often so I did not over work any one set of muscle groups.
I've lost my thumbs useage. No buttoning clothes, doing zippers, no pinch of any kind; I cannot put on earrings, necklaces etc. Have difficult time in kitchen with knives and burn myself but don't know til I see the result of blisters. I tried the arm splints but they did not help and I found I conked myself and hubby with them in my sleep. I have used wrist bands for strength and support but don't use them all the time. adjusting my level of usage and changing activity often is so far the only real help.
Many things I've given up doing but try to find new things to accomplish what I can. The doctor told me back in 1997 at diagnosis, I had the worst case of carpal tunnel he'd ever seen, but it was due to the hand weakness and over use from the CMT. I was 40 before I knew what caused my difficulties, so I learned to adjust and manage it rather than "fix" it.
I'm sorry I don't have anything more to share from my own experience, to help, but I know I'd be a whole lot worse if I hadn't quickly learned to accept my limitations and learned to live within them.
Glad you've joined us and hope we can at least offer encouragement. You are not alone!
Thank you CM. I was diagnosed when I was 10 and have also lost most function of fine motor. I was never able to wear ear rings, button shirts, necklaces etc. My hubby has also gotten smacked during sleep by the wrist splint.
I imagine I have carpel tunnel as well. I am looking into an O.T. specializing in hands. Thanks a lot
CM said:
Valleygal;
Sorry you are experiencing pain; I can relate; My hands had that kind of pain for years before I knew what was wrong and before diagnosis! Finding out what I was battling helped me to adjust my level of activity and to learn to change my activity often so I did not over work any one set of muscle groups.
I've lost my thumbs useage. No buttoning clothes, doing zippers, no pinch of any kind; I cannot put on earrings, necklaces etc. Have difficult time in kitchen with knives and burn myself but don't know til I see the result of blisters. I tried the arm splints but they did not help and I found I conked myself and hubby with them in my sleep. I have used wrist bands for strength and support but don't use them all the time. adjusting my level of usage and changing activity often is so far the only real help.
Many things I've given up doing but try to find new things to accomplish what I can. The doctor told me back in 1997 at diagnosis, I had the worst case of carpal tunnel he'd ever seen, but it was due to the hand weakness and over use from the CMT. I was 40 before I knew what caused my difficulties, so I learned to adjust and manage it rather than "fix" it.
I'm sorry I don't have anything more to share from my own experience, to help, but I know I'd be a whole lot worse if I hadn't quickly learned to accept my limitations and learned to live within them.
Glad you've joined us and hope we can at least offer encouragement. You are not alone!
O.T.can be helpful I'm sure. We can change how we do things and how often we do them it does help our weaknesses be manageable. I'd learned to adapt just b/c of necessity but didn't know why I did things different than others, but I DID get things done in my own way. LOL When my husband and I married, (I was age,17 yrs) he said "you don't walk right" LOL But, I just thought he was being analytical as he is about everything. His parents noticed how I held things to work in the kitchen, and wondered why I did things oddly, but again I thought, they think anyone who doesn't do things their way, is odd. LOL
After diagnosis, it sure explained allot of things. Then, I became a "hero" as they realized I'd done things when I honestly was not able. Things are not always as they seem.
So, I'm learning to change my ways and do things the way I CAN, rather than try to be like everyone else. One thing I DO know, my CMT has made me strong in character, working against forces I had no control of. It's our strong character and WILL that helps us become ABLE and remain productive in our own right!
O.T.can be helpful I'm sure. We can change how we do things and how often we do them it does help our weaknesses be manageable. I'd learned to adapt just b/c of necessity but didn't know why I did things different than others, but I DID get things done in my own way. LOL When my husband and I married, (I was age,17 yrs) he said "you don't walk right" LOL But, I just thought he was being analytical as he is about everything. His parents noticed how I held things to work in the kitchen, and wondered why I did things oddly, but again I thought, they think anyone who doesn't do things their way, is odd. LOL
After diagnosis, it sure explained allot of things. Then, I became a "hero" as they realized I'd done things when I honestly was not able. Things are not always as they seem.
So, I'm learning to change my ways and do things the way I CAN, rather than try to be like everyone else. One thing I DO know, my CMT has made me strong in character, working against forces I had no control of. It's our strong character and WILL that helps us become ABLE and remain productive in our own right!