Dantrolene Cured My Myofascial Pain Syndrome
I recently underwent some genetic testing for certain types of rare neuropathies. One of the mutations was in my RYR1 gene, which suggested that I may have some symptoms of Central Core Disease. Looking at some of the known symptoms I realized that I did indeed have some of those symptoms, and varying symptoms appeared to run in my family.
I have had the suspicion that at least some of my neurological conditions may be the result of genetic mutations where damage experienced during traumatic events resulted in an inability for certain areas of the body to heal efficiently. I had this suspicion after I began taking the drug Mexiletine, which not only eliminated my symptoms of chronic widespread burning nerve pain but after stopping the medication, the nerve pain never came back.
It was as though a traumatic event caused damage, but due to a mutation, something was short-circuiting rather than healing. Once the Mexiletine blocked my sodium ion channels long enough for the short-circuiting to stop, and some inflammation was alleviated, my body was able to successfully heal from that trauma.
I poured over the medical literature looking for medications that had been found to work well with those with Central Core Disease. While I knew I did not have the full blow condition, there was an indication that since I exhibited some symptoms of CCD, I may have better luck with those medications.
For years I have been on Flexeril and later Amrix (the extended-release form of Flexeril) as a muscle relaxer for my skeletal muscle pain and myofascial pain. However, my experience with the side effects of this medication has been horrifying including severe apathy, no libido, and at times dementia-like symptoms that nearly drove me into assisted living.
So, my first mission was to find a suitable replacement that I had not yet tried, which I had since hit a very dead end. Nothing helped like the Flexeril, not even close. Then I read a paper on the successful treatment of muscle spasms and stiffness with the drug Dantrolene for those with Central Core Disease. I informed my neurologist and soon after began taking the lowest dose available.
It caused massive headaches in the back of my head, massively increased light sensitivity, constant nausea, severe dehydration (due to excessive urination), intestinal irritation, and colitis. However, upon taking it, within only 30 minutes all of my myofascial pain was completely gone.
That same day I had an appointment with my physical therapist who has been treating me with manual trigger point massage for nearly 4 years. She said the change in the feel of my muscles was astounding. She could not believe the difference. She said for the first time my muscles felt “like a normal person muscles.” So, not only did I feel the result, it was physically identifiable by someone other than myself.
This led me to stay on the Dantrolene for 1 week in hopes that the side effects would fade enough for me to continue with the medication. However, these side effects only got so much worse and I discontinued the drug. However, the myofascial pain and tightness never returned. Like my experience with the Mexiletine, the Dantrolene shut something down long enough to heal properly, and yet another symptom was a thing of the past. It’s been over one month now since I stopped the Dantrolene, and the myofascial pain and stiffness has not yet returned.
If you suffer from myofascial stiffness and pain or have been diagnosed with Myofascial Pain Syndrome, I implore you to take a look at the following symptoms of Central Core Disease to see if any of the symptoms resonate with you. If they do, you may or may not have a mutation in the RYR1 gene. If you do, a very short course of Dantrolene might be worth mentioning to your doctor.
Some Symptoms of Central Core Disease:
- Congenital hip dislocation
- Easy fatiguability
- Joint laxity
- Sleep apnea