I woke up last night with severe burning in my left hand. It felt like it was on fire. I have CMT, with fairly advanced disease process, but I never felt anything quite like this before. I really should wait to post until it happens again, maybe it won't, but I was curious. We talk a lot about burning feet but has anyone had it acutely affect their hands? I have other hand symptoms, clawing, formication (the ants crawling thing), weakness, numbness, but not burning until now.
Thank you
Susanne

When I was pregnant 33 yrs ago, I woke up one night with my hands on fire.... It was severe and very dramatic. The doctor sent me right away to a orthopedic specialist (this was long before computers and repetitive strain etc) and she did an EMG right there and told me I had only 20% nerve function left.

She said the hormones of pregnancy do this, so after delivery, it did go down. I had one steroid shot in my right hand only. She had me use carpal tunnel splints all the time for it. Now I only use them at night. (I sprained my right hand on vacation so now I am using a right hand one still at home only at night). The splints keep the hand from bending inwards and compressing more at the wrist. I also rub in the mag lotion at both wrists at night to improve circulation there.

There is a new more comfortable Futuro one available now that I bought a month ago on Amazon. It is made from more comfortable materials.
http://www.amazon.com/gp/product/B00...?ie=UTF8&psc=1
These are also at CVS...but for alot more $$...$37.00 +

You will have to probably get tested to see how bad it is. But that severe on fire feeling is very serious I think. When my hands are only acting up I never get that terrible feeling anymore. Only when I was pregnant. Now I just get numbness and some tingling to warn me to start wearing the night brace again.

Thank you for this, and for the link to the brace. I need new ones, stopped wearing them a while ago, just lazy. Maybe this is just a wake-up call to go back to them. My arms have been increasingly numb at night, I have to sleep on my back with them at my sides.
I have been tested pretty extensively and the arms and hands are a mess with entrapments and axonal deterioration. I have visible muscle loss, I used to have pretty beefy hands. Both neuros basically said they couldn't do anything and further testing is pointless. They did say to come back if anything changed, but I took that to mean if my leg fell off or something, since they expected progression. Not encouraging.
I have been doing more needlework in preparation for Christmas, which may have set something off. It was a scary experience.

I just ordered them. The right hand one is $5 more than the left. Amazon is so weird!

Their prices change too.... the right has been as low as $17 and as high as $19.50.

I went to CVS and tried them on, then came home and ordered from Amazon at 1/2 price! LOL I have large wrists..over 6.5in
and some braces are not big enough for me. There is a light gray type for women at WalMart, but when my hands swell from the angioedema the braces are too tight! These new Futuro ones have swelling room in them! I got the large size and it is very generous.

My left hand swelled up for over 2 mos earlier this year, I guess from the IV they used for the echocardiogram at the hospital. It was really a bummer. I've never had that happen before. It really bothered me. I couldn't wear my wedding band at all.

Hi Susanne, Because CMT causes damage to sensory nerves fibers (axons) there can be burning sensations in the hands and the feet. Usually causes only mild sensations but sometimes causing pain.

Susanne,

How is your left hand? I hope the burning never happened again.

Mary

Thank you Mary, so far just slight burning in the fingers, not the whole hand, and numbness lasting most of the day, but I did start wearing the braces. (Amazon prime student membership 2 day shipping!) Yesterday it was my elbows, both of which have pinched nerves but are usually tolerable.
I can't figure out if it is quilting, which requires that my right arm be in an arc resting on the frame, applying pressure through the middle finger to the thimble and needle or throwing the dog toy half the day. I was on my own this week most of the time, so had to exercise the enormous puppy on my own.
I now have a knot painful little knot at the base of my right thumb. Isn't this fun? I don't usually do it, because it isn't a challenge or anything, but you can really come up with a new symptom every day.

I have no business complaining to you! No one here has more on her plate or is as overdue for good news as you are. I think of you everyday.

Try some Salonpas patches....cut to fit... Use the original type with the methyl salicylate in them. They take down finger pain quickly for me. I cut them in half along the long dimension and wrap fingers, palm and toes when needed.

They really work. Sometimes within a day. About 4 bucks for a pack of 40. Will last a long time for finger use. I use these patches for everything and get them at Costco in 140 ct. boxes.

For what it is worth, my friend is a quilter and has mega hand
problems too.

Hi Susanne, Since you already have hand and finger problems, arms, etc. due to CMT (I believe you have said you do) then overusing them can exacerbate the problem; CMT in this case. Quilting, crocheting, knitting, using a keyboard, etc. for long periods of time, and sometimes it doesn't have to be a long time, is not good. Even non-CMTers can encounter the problem. A person needs to take a break.

I know you are absolutely right....but nothing else really makes me happy. I had to totally give up crocheting, i can't use a mouse, and I am amazed that I can quilt at all. I am an idiot but I have been doing this stuff since I was 5, and it has kept me sane. ( that may be an extravagant statement considering my mental state...)
It is a quality of life issue. I certainly wouldn't take narcotics just so I could cook and clean!
But you are quite correct Kitt, and I am overdoing with the holidays approaching. I have this Christmas bedquilt for my husband that I ignored all year and now I am trying to finish for our 31st anniversary on Christmas Eve. Never was good at moderation.