muscle dystrophy

I am interested in anyone who has myotonic dystrophy and what meds that give relief.

[littlelulu]

Hi. What are the symptoms that bother you the most? Do you have type I or type 2 myotonic dystrophy?, or some other form of it? Since there is no cure yet for myotonic dystrophy, and it is treated symptomatically, it's hard to say without knowing what type you have or what bothers you the most, but here goes!

I have type 2 myotonic dystrophy, sometimes have painful myotonia in my legs. It's very variable. At times it's really annoying. Then there are days when it hardly happens at all. Cold can make it worse, and warmth (even in warmish weather) can be very soothing. I sometimes wear tights, even if the temperature is in the 80s. Since in type I, people are more often affected in facial muscles, and forearms, and lower legs, I'm not sure everything exactly fits, but probably many if not all of the things that help one are worth trying for the other.

There is a medication some people take for myotonia, mexiletine, but I haven't taken it. I hope I never need to. There are side-effects, and so far I haven't even been tempted to try it. I have a kind of routine to go to if pain is bothering me.pain is bothering me.

The way I look at it is that I want to take the mildest thing I can get away with, because if I start out with a heavy-hitter medicine, there will be nowhere else to go if it get worse. If you have type I (or some other myotonic disorder), you may have been having the problem for a much longer time than I have.with, because if I start out with a heavy-hitter medicine, there will be nowhere else to go if it get worse. If you have type I (or some other myotonic disorder), you may have been having the problem for a much longer time than I have.

My routine for pain of myotonia is that first I usually will try red pepper flakes. I happened to read something written by a teacher/school administrator of young schoolkids. She had had some students who had myotonia (not from myotonic dystrophy, but from a non-dystrophic disease called paramyotonia congenita; which isn't progressive, though it is characterized by myotonia). She wrote a memo for other teachers/administrators, and suggested that the parents of kids who had myotonia, especially those who were made clumsy and thereby self-conscious by it (and therefore teased), could give the child a little packet of red pepper flakes, like you get with a take-out pizza. And eat some of the flakes for myotonia. It may sound impossible, but if you just swallow them quickly, you don't really notice anything. I put 8-15 or so on the palm of my hand, and pop them into my mouth, or lick them off (clean hands first!)

It was so surprising to me that I got relief from that, usually fairly quickly, or occasionally it takes as long as 20 minutes. Sometimes not 100% relief, but enough so that I feel OK. I googled the words "red pepper pain myotonia", and found that the capsaicin in hot peppers is a known pain-reliever. Apparently there is also capsaicin cream that you can rub on muscles that hurt, though I haven't tried it.

For mild-moderate myotonia, the pepper helps enough around 70% of the time. If I'm still bothered by myotonia, though, or don't want to do the pepper, I take an immediate-release Tylenol, or else ibuprofen or naproxen (Advil-type stuff).

Don't know if the myotonia/pain/stiffness is the symptom you mostly are bothered by, I'm just guessing. And not knowing how severe your symptoms are makes it difficult to know if I'm saying anything helpful.

Other off-and-on symptoms I have include daytime sleepiness, weak eye muscles (I sometimes have blurry close-up vision, like being nearsighted), and sometimes digestive problems. But it's such a weird disease, how these things come and go. For nearly 2 years, difficulty swallowing was a real annoyance. And then it just stopped. Don't know if it will come back again, but it hasn't been a symptom for more than a year.

Also, if you haven't already, contact a Myotonia Dystrophy charity. Ask them to send you their packet. It contains, among other things, pages of information about myotonic dystrophy (cautions about things like anesthesia are especially important to know); a small book written by a family doctor/specialist to explain myotonic dystrophy to people who often never heard of it before they were diagnosed with it (I'm one of them); a wallet or purse card with information in case someone needs to help you and you aren't able to communicate about it.

Good luck!

[Edited by MaddieHU]

[Hidden in reply to littlelulu]

Thank U 4 the info sorry 4 the delay. I am 68 male weight 55kilos (old scale 6ft/2) and I have type 2 nerve pain in left thigh only when I lay on my preferred right side in bed. I also have pain both sides of shoulders and (back of my neck) and in both thighs during the day and when I am sitting down.

which I use voltaren cream (osto gel) the doctor put me on Baclofen half 2 one tab a day which have side effects re constipation, blurred vison I took the pill 4 a month with no results and I stopped taking it. I have 2 say I also have P/N (peripheral neuropathy) I am not diabetic an obvious ha..lol (not overweight) born with osteoporosis (brittle bones) resulting from (XXY) Klinefelter syndrome (testosterone deficiency) and just 2B greedy ha lol MD (facio-scapular-humeral muscle dystrophy. For the pain I take Targin (oxycodone) low dose 10mg twice a day, but hopefully 2 increase to 20mgs twice a day. I am thinking of getting of a spar bath. I only got the myotonic pain in left thigh about 3 months ago.

[marketman]

Hi, I have type 2 MMD. Watched my Grandfather and Mom deal with the condition and now I am, so I've gathered some first-hand info. I've tried everything avail. for the pain and, suffice to say, most have no effect. Gabapentin, voltaren and the Antiarrhythmic's (Carbamazepine or mexiletine) did nothing for me. Opioids do help a little (6 on a scale of 10). However, CBD's, an ingredient in marijuana, is by far the most effective. CBD strands don't create any "high" feeling (that's THC) and are readily available in Colorado. A few puffs and my leg/hip pain is gone for 2-3 hours. Very effective for epilepsy as well. Of course, my neurologist would have never recommended it over a "traditional" pharmaceutical but she's seen my and other patients experience and is almost a believer. If medical marijuana is available where you are, try it. Or take a vacation in Colorado/California and give them a try. That's all I've found that works but it does work.

In addition to the pain is the fatigue. For this, I take modafinil. It's a med for narcolepsy and is also used by truck drivers, college students and the military to keep them awake and alert. I have not had any side effects but you do need to start with a small dose and increase it or you'll get nausea for a few hours. I only take 100mg in the AM and it keeps me alert until 4-5PM. It doesn't create a jittery feeling like caffeine, it just makes you alert.

Hope this helps.