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I have been tested for Myotonic Dystrophy type 2 (DM2), and the test came back negative.
I'm glad that this disease is now ruled out in my case, and I wish to look for other genetic or acquired diseases with delayed muscle relaxation.
You describe your symptoms as "burning muscles" not burning skin. Can you describe it in more detail? I know it's hard to describe something vague like pain. But it sounds similar to my symptom, but don't want to assume. Is it a chronic dull burn all over, deep in the muscle (not surface/skin pain)? Is it like a lactic acid build up, exercise burn pain? Do your muscles feel very hot?
yes, I have burning muscle if I exercise to strongly. You call it lactic acid build up, but i prefer not to call it that way.
I also have muscle burning pain during several days after an intensive contraction.
When I described my muscle burning that feels like lactic acid build up to my Fibro expert (does research in Fibro) who's a pain/anesthesiology doctor, I was very insistent it was NOT neuropathy pain as I know what that feels like.
But she said that some fibromyalgia patients have described their muscle pain the same was I had. But I doubt it was the same(could have been poor wood choice, difficulty describing the pain, etc.)
"Central Sensitivity Syndrome" might be a good search term to use. But I'm sure you have looked into it already. It's newish to me, in that it's much broader that I thought includes a lot of other pain conditions.
Central core disease is an inherited myopathy, it can show up on muscle biospy.
Like you I would like to rule out genetic myopathies and muscle dystrophies as well!
Burning muscle doesn't mean you have a genetic muscle disease, I agree with you fibro specialist, and I also agree with her that the burning muscles are very often the result of central hyperalgesia.
I know I am affected with Central hyperalgesia (I prefer to call it this way than central sensitivity).
I know it because every time I had electrical/tingling or burning pain somewhere in my body, I found a real cause behind (nerve contact from cervical herniated disc, oxalate crystals in my urine for example are some events that occurred in my life and that confirmed my hyperalgesia. The central origin is just a supposition that correlate with my daytime sleepiness that is likely of central origin)
Muscle burning pain does not mean you have necessarily a genetic myopathy/muscle dystrophy.
If you have concomitant elevated CPK, (creatin kinase), in that case only you can be sure that your muscle burning sensation is linked to a muscle disease, otherwise you are not.
So if like me, you never show any CPK elevation, you are not likely to have this kind of genetic disease.
On the other hand if you have some Percussion Myotonia (i have it), or if you have Hyperlactatemia (I have it), if you have some muscle weakness symptoms (eyelids ptosis, mandibule ptosis, I do have them),
if you have hypoventilation (high blood PCO2 and high blood bicarbonates like I have),
then it makes sense to look deeper in genetic muscle diseases. (but also metabolic genetic diseases)
Muscle biopsy and genetic testing are the way I wish to go now.
After doing deep dive / search in the PR archives, I see you have investigated Ambroxol. I'll ask and post my questions about that drug there. I'm also interested in Dantrolene, as it too is a ion channel bocker and has given muscle pain relief (not just muscle relaxation).
Have you heard of or considered "
Central Core Disease"? Genetic defect on RYR1 gene. Presents with scoliosis, joint laxity/dislocation/instability, muscle weakness/fatigueability, hypotonia, and stiffness.
This patient had a genetic defect on the same gene but had stiffness, muscle knots, and muscle pain (slightly different symptoms). She was cured with Dantrolene, which works on these ryanodine receptors (Ca channels).
Central core disease can be ruled out by a muscle biopsy , I wish i could have this kind of test.
Any Way, I did a short trial with Dandrolene and couldn't tolerate it, I got diplopia...
I tried Ambroxol with some transient positive effect, I tried Mexiletine but didn't see any effect.
