Hi Lynxgal and Kitt -

Thanks for your notes. I am actually heading out to my health food store to ask some questions. My ferritin is low so I have to keep that up (I've gone from 10 in Feb. to 27 two weeks ago ... still too low). I'm going to ask about a good multi, a B complex, SAMe and Co-Q-10. Then I shall ponder some more.

I get the cramps everywhere on my body only when the CMT symptoms are awake. Mainly thighs, lower legs (strangely not calves but the front of my shins), toes and feet. To a lesser degree, hands and abdomen. I have checked everything out re: electrolytes, calcium and potassium levels, thyroid, and everything always shows up nice and healthy on the bloodwork.

Kitt, I just might try the Advil a few times a day for a few days and see if that will get me over my current little hump. At least that won't knock me out!

Hope everyone has a great day .....

Di

shin cramps are wicked, you can only stretch those muscles so much to try to stop the cramp

I get the cramps everywhere too. More so in my lower legs feet toes and hands though. Curious how long yours last Di? Usually mine pass in a short time but have had them as long as 6 hours with a relaxant.

All my bloods are normal too. I don't find that OTC pain meds help with much of anything anymore neither does the flexeril.

When I got those muscle cramps in my back that wouldn't leave - they were excruciating. They were worse than labor pains. I couldn't sit, stand or anything. I got them from twisting wrong when I layed down. I will never do that again if I can help it. That happened years ago and my CMT symptoms weren't that bad. The Advil helped greatly then.

Since then, I have had muscles cramping some like on one side of my back but nothing at all like back then when the cramping stayed on both sides of my back. The first chiropractor I ever saw was back in town in May. He lives out of state. (I believe he is moving back in a couple of years. That would be great!) Both my husband and I had been having troubles with our backs at times. The current chiropractor I had to see was something else. I'm not certain that he ever got me adjusted right in the year I saw him. And my husband doesn't like his either who bought out our first chiropractor.

So back to the story. That first one I saw showed my husband and I how to do a passive exercise. You lay on your back on the floor with your feet and lower legs on a chair or the couch - not hanging - just so your back is flat on the floor and your legs are laying on the chair or couch. We now lay there for 13 minutes. It took about 6 weeks for me - it is slow and passive - but I could tell the difference. It slowly helps keep the back in alignment and also relieves any muscle cramps I might have in my back. It works wonders. Sounds funny perhaps but it does work. My husband's hips don't bother him either anymore. We do this exercise every night. I wouldn't be without it now. I have not had to go back to any chiropractor either. I think most are out there for the money and to keep you coming back. I was fortunate with the other ones I had but not this guy. He won't be seeing me anytime soon.

As far as my feet cramping at times, that happens if I've been on my feet too long or walked too much. I soak my feet in very lukewarm water with Epsom Salts in it. That helps a lot. I don't have to soak very long either.

If my calves feel crampy, I rub a little Biofreeze on them and that does the trick. I cannot stand Biofreeze on my feet. Drives them up a wall. I know some people can use it on their feet but not me. I rub a little Biofreeze on my lower back at night and sometimes during the day. It only takes a little. It helps me.

I take one Advil at night. It seems to help keep things in check. I hate medications but I do take one. I'm never really without some pain all the time. I also could have some osteoarthritis, the wear and tear one. That is normal for the general population as well as we get older.

Anyway, that's where I'm at now. And remember, there is no magic bullet for CMT. It is progressive no matter what you do and everyone's symptoms are different even within the same family.

Hi Lynxgal ... had written a nice long reply and then boom! My finger twitched and I lost it all!

Anyway, the longest cramp was about twenty minutes on my inner thigh. It was so aggressive that my leg was sore and tender for two weeks afterward, and it was constantly threatening to cramp for that first week. I tourniquette my leg (NOT recommended) but it's the only thing that works to stop the cramp.

I have been really careful with my diet and fluid intake, and it seems to have helped with the severity. My potassium, calcium and electrolytes all come back "perfect". I still get them, but if I get to it really fast and stop it from fully engaging, they only last about 10 - 15 seconds. There was a time it went from zero to fully engaged with no chance for me to get to it .... those were the worst in pain level and longevity!

I can't identify a reason why. There doesn't appear to be a pattern such as the one described by Kitt.

I had one in front of my physio therapist once, and she went white just watching me. My sympathic system kicks in afterward and I tremble for a good ten minutes (your body basically going into / out of shock as she explained to me).

I get sick to my stomach just thinking about it! There's my "thing" to be grateful for today .... they are fewer, further between and manageable.

Wishing you all a healthy day tomorrow!

Di

Mrs D is the one who taught me about this all. But take some calcium that also include the Vit D AND Magnesium. I've found it helps the cramping immensely, AND IF you are approaching that deliteful "M" You also have to get checked out with a full thyroid panel... Once the hormones quit? Lots of thyroid things tend to happen. But thyroid is easily treated without damage IF it's detected in time. Besides you are still gonna need a calcium boost from now on. Why do you think there are all those 'ads' on TV for supplements?
If you are put on thyroid meds? Don't chomp them down in the AM with your calcium pills tho... I learned that the hard way. Gotta take them about/least an hour apart.
BTW? I'm well past menopause? But the last few years I've been on cancer meds that keep whatever estrogens I've left from working [theory is the cancers feed on the 'e's]. Had BC, and it's not back yet! Believe me, Once I started on this stuffs I started to get night sweats squared all over again! Don't automatically suspect the big 'C' tho! That's what annual check ups are for! Got my cancer early on and I thank those check ups every day!
BTW? Thyroid depletions can and do cause some neuropathies, so, ask if it can be checked out. Try the calcium combos and don't forget the B-12! Both are really useful in the long run, tho you mite not 'feel' anything rite away. Get tests and ask questions! Learn and be your own advocate! 's - j

For those of us who have CMT, and there are a few of us on here, our bodies cannot regulate temperature and therefore we are prone to night sweats, some in the day, etc. These are not at all due to menopause. There is nothing you can do for that. Men with CMT also have them.

We also suffer from cold feet and hands. They can be cold in the summer as well as the winter. Sometimes that can cause cramps in some of us who have CMT. We are all different. Sometimes no amount of trying to warm them helps very much. We have to be very careful as to how warm our showers/baths are as some of us cannot feel the temperature of the water that well.

Standing for a period of time can give you cramps in your calves and make your hips hurt and your lower back. It just happened to me yesterday. A little Biofreeze helped that. I know better than to do the standing for very long but it happened.

CMTers have to be very vigilant. And eating a healthy diet is helpful. And exercise within reason - your body will tell you. Not everyone is low on calcium either. As far as osteoporosis, it can also be inherited. Both men and women can have that. The general population as well.

Anyway, CMTers just be vigilant and take good care of your body. And remember, CMT is slowly progressive no matter what you do.