metabolic myopathy with rabdo myolisis
 

Hi my name is David and I suffer with Metabolic Myopathy with Recurrent Rhabdo Myolysis and have a really hard time with a lot of pain in my legs primarily and would be interested in other people who have this disease that may have some suggestions on how to minimize the pain.

David,
I know very little about Myopathy other than it has to with muscle spasms/pain. I have a mild case of Cervical Dystonia which affects the left side of my neck and shoulder. The muscle spasms can be quite painful. I did try botox injections; but they did not help.

Because of my peripheral neuropathy I have been using pain meds, along with Diazepam 5mg's twice a day. Every since I started using the Diazepam, the muscle spasms of the neck and shoulder are greatly reduced. Dizepam is not only for anxiety but muscle spasms as well.

Also; have you tried using some rubbing alcohol or a Mineral Ice rub which contains Menthol. Both of these have also help lessened the muscle pain.

What meds are you currently taking?


Gerry

Nice to meet you!!
 

Same Boat
 

Hi David,

I too have a metabolic myopathy and am extremely prone to rhabo. It s a tough thing to deal with. I get my care at The Mayo Clinic and as of this time there is no real medication that can help with pain. I ask all the time. Muscle relaxers work ok sometimes but not enough in my experience. Through trial and error and research I have learned some lifestyle changes that do seem to help.

First, avoid extreme cold and heat. The cold in particular is rough on us. I live in MN and haven't been outside for a week due to -35 temps. It sucks but the second I step into the cold my muscles seize and burn. And they don't stop for a while. Dress very warm if you have to go out but staying in helps me tremendously.

Second, take 500 mg of Riboflavin in the morning once a day. It is the #1 thing that makes me hurt less. It's a vitamin my Mayo doctor recommended. I noticed a huge improvement in my pain and a decrease in muscle fatigue and weakness. If I accidentally miss a dose I really feel it later. I am also on CoQ10 2x a day. 1000 mg each time.

Third, get in the sun. We are very prone to being severely vitamin D sufficent which can make cramping and pain worse. My doctors told me 20 mins in the sun a day with my arms outstretched and palms up is what to do. Don't wear sunscreen or sleeves. It is much more effective for us to get our Vitamin D from the sun. I asked about cancer and the doctor said I had bigger problems the rising skin cancer. It helps tremendously with pain. I take a vitamin because its so gray here. No sun. And it is not the same.

Finally, some massage can give temporary relief but not last very long. stay very hydrated because RHABDOMYOLYSIS is more likely to occur if your dehydrated. Also, make sure you're never "fasting." Meaning eat regularly at small intervals all day. Fasting is the #1 guarantee that rhabdo will "turn on" and cause pain.

Hope this helps!

Hello Tmkmurphy,

Welcome to the NeuroTalk Support Groups!

I was thinking you might be interested in checking a couple of other places as well as the main PN forum that Darlene has left in her post. I know there are posts regarding Metabolic Myopathy there.

Also...
Metabolic Diseases / Mitochondrial Forum

I'm not sure how applicable the Vit D thread will be if you're Vit D sufficient but I'll leave the link to an interesting thread anyway.

New medical information on Vitamin D + videos:

There is also a search feature. You can type in keywords and find other posts and threads. There are actually quite a few throughout different forums here.

http://neurotalk.psychcentral.com/search.php

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Welcome Higgi1964. :Tip-Hat:

Nice to meet you!!