Took Lyrica for 2 days. The dizziness is quite powerful. Unexplainable pain (first time in this area) occurred. In the middle of the left wrist severe pain that burned half way up the arm and shooting pain across the top of the right hand. These are the symptoms of nerve pain. Was it a reaction? Or, again just unexplainable pain that strikes MC. Should I give up this drug and see if the side effect will stop? Doctor called and 44 pages read on the internet about Lyrica. No definite answer. I have been searching like all of you - demanding!!! from Doctors to listen. I am strong in belief one day and weak the next.

Bruce and I and everyone else is just crying out for help.

Jan, may I print these words by Billy Graham. Today is Sunday. I do not wish for anyone to respond and argue over these words. I simply want to write them. We all have different beliefs. I have this on my refrigerator and I need to read it every day.

"Confidence and Peace"

You will keep him in perfect peace, whose mind is stayed on You. Isaiah 26:3

Peace carries with it the idea of unity, completeness, rest, ease, and security. Many times when I meet Jewish friends, I greet them with "Shalom," the Hebrew word for peace. And often, when I greet my Arab friends I use a similar term that they use for peace, "Salam."

Notice the key phrase in that verse: "whose mind is stayed on You." When troubles hit, our minds naturally focus on them. When suffering comes, all we can think about is the pain. It takes a deliberate act of the will to turn away from the problem and focus our minds on God.

When our minds are stayed on God, we won't be worried about the future, because we know it is in His hands. We won't tremble over what might happen, because our lives are built upon the solid rock of Christ.

When you and I yield to worry, we deny our Guide the right to lead us forward in confidence and peace. Don't cause Him to grieve over you by indulging in worry, but trust everything into His all-loving care.
By Billy Graham

I will never stop searching for help but I desire to have this peace. As we all know, anxiety worsens the pain.

Thanks for all the comments confirmed what I already
knew about MC

DM1,DM2 DMx are forms of myotonic muscular dystrophy
There are gene tests specific for DM1 and DM2 but not DMx

I am replying to bruce about pain. i suffer from Beckers myotonia and the most pain i go through is when i go to bed it takes me ages to relax and when i do finally relax the pain sometimes is intense.

Ian,

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

1: Clin Neurophysiol. 2003 Dec;114(12):2347-54.

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.

PMID: 14652094 [PubMed - indexed for MEDLINE

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.

We have hope, don't forget it.

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

I registered, too. Thanks----Judy