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kimcvi (@kimcvi)

Myotonia Congenita

Neuropathy | Last Active: Nov 1 7:19am | Replies (149)

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@kimcvi

Hello, yes it’s like a Charlie horse. MC is not suppose cause much pain and it’s suppose to be relieved with walking or exercising but the more I do the harder my muscles work and I have pain. My foot is all messed up due to the MC and if I do any substantial walking I wear AFO’s. I was hoping to connect with someone who is going through this but it is rare and none of my Dr.’s here at home can help me, I do a lot of non urgent messaging to my Dr. at the Mayo (he is Awesome along with his nurse)

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Replies to "Hello, yes it’s like a Charlie horse. MC is not suppose cause much pain and it’s..."

Hmmmm, yeah that does not sound like much fun. I can relate to charlie horses, Like many people I have experienced a number of them in a lifetime. Your specific illness may be rare. But you experience pain, right, so from that standpoint you do have a lot in common with a lot of people. Perhaps it's not exactly the same cause of pain but surely many can relate to the fact that you re living through a nightmare. If you want to utilize Mayo Connect I'd suggest to just look for groups and discussions among the many that are here that most closely relate to the issues that you are dealing with, even though they aren't precisely about MC, such as the groups "Chronic Pain", "Bones Joints, and Muscles", etc.. One thing I have been learning since I started posting in January is that there are a lot of very intelligent and compassionate people who are willing to lend an ear to what you have to say and will give you the best feedback they have to give. Also I'd like to make one suggestion: perhaps do a short write up of your disease as it relates to you and put it on your profile page. I like to read those when people include them and it would help you from having to explain your disease to a lot of people, you can just refer them to that. Like others, you are a Pain Warrior @kimcvi and that makes you another member of the club here. My very best to you and keep up the good fight! Best, Hank

@kimcvi Is your diagnosis correct? We’re you diagnosed and a young age with this? I ask because myofascial pain is often misdiagnosed. There is a book called “Healing through Trigger Point Therapy: A Guide to Fibromyalgia, Myofascial Pain and Dysfunction” by Devin Starlanyl and John Sharkey. It is a bit technical and on the harder to read side. Devin is a physical therapist and runs a Facebook group called “Fibromyalgia, myofascial pain and dysfunction”. She has many downloadable files in links from that website with suggestions. If your diagnosis is accurate, some of her suggestions might still help you relieve pain, although the main focus of the group is evident from the title of the group. She has resource for bodyworkers, etc., too. I personally have some chronic myofascial pain and I’ve posted very specific suggestions in the chronic pain threads such as “pudendal nerve” thread and “pain in the butt – can’t sit down” thread about using exercise and certain dietary supplements to lessen pain and tension (at one time I had great hypermyotonic tension in both legs and all manner of myofascial pain and accompanying nerve pain in the hips and legs, too). The exercise and supplements were able to get me off nortriptyline for nerve pain and things are much better now. What I’m saying is that certain supplements and approaches you come across might help you – even though your condition is rather rare and unique. Good luck.