I developed pain at night. I could only lay on my back and sides for about 1-2 hours and then had pain on the side I was laying on. I brought a Memory Foam Mattress and pillow and use a heating blanket year round. This helps most of the time. Jan told me about Comfort House that sells heated mattress pads. I have Thomsen Myotonia. Everyone's pain is different. You may want to try it (if you haven't already. Judy
A rare form of painful nondystrophic myotonia.
Torbergsen T, Hødnebø A, Brautaset NJ, Løseth S, Stålberg E.
Department of Neurology, Tromsø University Hospital, Tromsø, Norway. torberg.torbergsen@umn.no
OBJECTIVE: In this paper we report a painful nondystrophic myotonia which has not been previously described. Pain is a rare symptom in myotonia. We report a myotonic disorder in a 34-year-old woman and her 14-year-old daughter. Painful cramps occur during and after exercise in the mother, and both patients can demonstrate unusual contractions in the tongue. In the present study we try to evaluate the mechanisms behind the unique finding of trains of high amplitude of positive waves, not seen in the earlier known myotonic conditions. METHODS: Clinical investigations and electromyography with single and dual channel recordings and muscle morphometry were performed. RESULTS: The electromyographic recordings reveal positive waves, fibrillation potentials and myotonic discharges. In addition, extraordinary findings were made of trains of high frequency positive potentials with very high amplitudes and with conduction block along the muscle fibres. CONCLUSIONS: In this new form of myotonia with likely dominant heredity, the specific finding of trains of high amplitude positive waves indicates ephaptic transmission within bundles of neighbouring muscle fibres.
Here's my "clinical" nursing take on all these myotonia-related studies. While many of them state unequivocally that there is no pain associated with MC, or that "pain is rare", they do NOT appear to classify the pain, to specify the type, the causes, the etiologies and catalysts, etc... so, to my way of thinking, and from both my rehab and hospice clinical backgrounds, and my case management/pain management experience, the studies are worthless to us, because our pain is generally NOT caused by the condition itself, but rather, from the problems that the condition causes through both use and non-use of our muscles. My muscles can make me rigid with spastic pain, or doubled over with soreness, or exceedingly tender and inflamed, etc. However, it's not the myotonia doing that. If I sit very quietly, move very slowly, etc., I usually have minimal myotonic pain. Pain is usually the result of the myotonia, when I do physical work, exercise, am startled, or other exacerbations of the problem. I don't think the researchers ask the right questions, or actually are interested in the pain issue. What they are looking to confirm is that the myotonia itself is not painful. They need vocal people who contest their assertions, and demand a more "actual", less hypothetical approach. Pain is pain, and our pains are very real, and are because of the MC, even if "indirectly"... but for the MC, most of us probably would not have those pains! That's why we have to keep sending the info letter to every doctor, lab, researcher, school, therapist we encounter - to get them to listen, and to validate us, not shame or belittle us. Lois
I have worked on a cancer floor and been a Hospice Nurse. Pain - Pain - Pain. I have seen enough people suffering. And, I have seen enough doctors' orders to KNOW that many do not know how to treat pain.
I truly believe that MC is the cause of all my pain. That MC induces Myofasical pain and minics Fibromyalgia and any other type of pain I may suffer.
Until there is more research and Doctors are told how to treat MC, then we will hopefully get some relief.
In the mean-time, we have each other to talk to. And this is how we will learn (from each other) what may relieve our pain.
We have a well-informed moderator, freely giving us her time and knowledge. At this moment, she is in need of all our prayers.
Advocacy; getting the word out; bring attention to MC
researchers the plight of MC patients. Thats the key to
addressing the lack of treatment options and understanding the potential relationship of any symptom to MC, like muscle pain.
Besides the letter another beneficial way to participate
would be to join the National registry that is targeted for neurological channelopathies, CINCH
http://rarediseasesnetwork.epi.usf.edu/cinch/index.htm
Thanks, Bruce - I registered. We have to be proactive, and the best way we can insure better information about our conditions is to participate at every available opportunity! Lois