@kimcvi Hi Kim. I hear struggle and dispare through your words. You are completely justified in your frustration. I would not know how I'd feel if I could not talk to people who share my specific disease/diagnosis or find a knowledgable, local Dr. As you keep searching, and you will find a connection with someone eventually, please keep your chin up. Hope is something we must hold on to. You and I may not have an identical connection but, we can connect on common feelings such as pain and chronic illness. My neuropathy has weakened my muscles....they twitch, ache, burn, throb and prevent me from movement on many days. My quad and calf muscles give out with pain that leave me limping or flat out down for the count. I can not walk any normal distance and must use a wheelchair or electric scooter in stores. My back goes through the same. My arms experience their own version. If you dont mind, I'd appreciate hearing more about your disability. I'd like to help in any way I'm able, even though we dont share the same diagnosis.
Rachel

@kimcvi Good morning Kim I found a website maybe able to help you Myotonia Congenital / WebMd.com

Hi Kim, as Rachel says, don't lose heart. I know, easy and possibly a bit presumptuous to say that, not having any inkling of what you ar going through, but that is one of the good things about being human, there's always hope. The even better thing that I have found is you bad days come, and sometimes many in a row, but at some point the badness subsides. I have seen that in my own life, not regarding physical pain, which I don't have much of, but in regards to emotional pain, which I have had in my life at various points. One question, have you seen the book The Official Patient's Sourcebook on Myotonia Congenita: A Revised and Updated Directory for the Internet Age? I assume you have but just in case, I found it on Amazon and it sounds like a pretty definitive book for the MC sufferer. Also, something to try: I am sure you have googled yourself silly researching your disease. One thing I do when I am trying to get past all of the official sounding and clinical websites hoping to connect with real people who know about or have experienced something is to try to get much deeper into google by going to page 100 or even 1000 and looking for posts by actual people with direct experience in their lives. Please forgive me if I am telling you things you already have known for a long time. Just trying to brainstorm a little bit. If I can think of any other ideas I will pass them along. You take good care Kim! Best, Hank

Kim have you connected with a UK muscular dystrophy forum? I found one online:
https://www.musculardystrophyuk.org/talkmd/topic/please-allow-me-to-introduce-myself/
On this page someone introduces themself as having MC. It's old, but maybe you can find someone through a similar Muscular Dystrophy related blog or forum somewhere. Is Myotonia Congenita very closely related to Muscular Dystrophy? There's got to be a way to find other people who have it who could give you some pertinent advice. Hank

Hi Kim. I don't know if anyone has suggested myofascial release therapy. From your posts, it sounds like exercise makes your muscles worse and tighter. What MFR does is to stretch the fascia which is the connective tissue that envelopes muscles and everything else, and your therapist will do this as you lay on the table. It might be something to try to see if it helps loosen your muscles so they can move better. I have done a lot of MFR myself and it has helped me a lot. I don't share your diagnosis, but this came to mind. Here is our discussion on MFR that has a lot of information. There is a provider search on the MFR website. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/