The Twitching Scale

[crotwich]

MJP, do you also have elevated creatinine? In my case they don't know the cause of this elevation, since my kidneys seem to work properly. Also, since my CK levels are normal, I suppose this should exclude significant muscle damage. However, I'm rather convinced this is somehow connected with my BFS/PNH.

[misterjuanperalta]

Normal Creatinine. CPK not checked at Mayo, deemed unnecessary.

[ToddE]

My twitching is pretty bad. I'm 24/7 from my mid-back down to my toes. I twitch everywhere else too, it's just not constant.

These are my calves: https://vimeo.com/139254390

My upper legs/glutes are about half as bad as my calves. My back is then probably half as bad as those are. I do get constant eye, inner ear, and scalp twitching but it seems to be on a few days on, few days off cycle; it feels like bugs are constantly crawling in my ears and under my hair.

I've tried to put a number to them before, but it's impossible. I'm over 1,000 per minute per calf alone... I think they're literally driving me insane

[crotwich]

Wow, that's impressive ToddE. Congratulations, you win! Do you get cramps and muscle pain with twitching? BTW, what's your current diagnosis?

[ToddE]

I've been diagnosed with Cramp Fasciculation Syndrome. I always assumed I had Isaac's Syndrome because of the severity of my symptoms, but nothing has turned up in blood tests. EMGs see lots of fasciculations, but no doublets or triplets which denote Isaac's. The Mayo clinic was able to induce cramping during their EMG test, hence the CFS diagnosis.

I definitely cramp, Also loads of:
Stiffness
Muscle jerks and general shakiness
Lots of pain. Burning nerve pain but also super deep aches.
Delayed muscle relaxation
Hyperhydrosis (excessive sweating, hot flashes, night sweats, etc)
Sleep walking/night terror type stuff
Loss of cooridnation

I used to get 50+ cramps per day but my Doc put me on Mexiletine which has taken 95% of the cramping away.

I've had it for around 20 years. It started as very light twitching and cramping in the calves when I was 13 and has steadily progressed to where it is now.

[Xina535]

OMG Todd! OMG!

That's happening all the time?!

I have the feeling like my calves and feet are doing that, but I only physically see half of it, and feel the other pops deeper within.

Have you ever had any weakness?

[veryworried123]

i get 500+ a day i think

my calves often look like Todd does

Todd - is there anything that you have tried over the years? medication? Diet? Gluten? etc that has helped reduce your twitching?
do you go for regular EMG's

what else can you share being a long term veteran

thanks

[ToddE]

Sorry it took me awhile to respond.

Xina, that video was right after I woke up in the morning. That is pretty close to the most severe they get. Throughout the day it can dip down to about half that bad for periods of time.
I have had weakness. I think the weakness comes from the muscles not working together as well as they used to. Meaning that I don't think my muscles themselves are much weaker, but they feel much weaker because they're not working properly. I definitely feel the deep interior pops and buzzes all the time; it's like a circus in there!

Veryworried, I've tried lots of things over the years. I've ruled out all heavy metal toxicities or mineral/vitamin deficiencies. I've tried all sorts of supplements and homeopathic stuff from naturalpathic doctors without any luck. I've tried modifying my diet quite a few times cutting out all the typical things, gluten and all sugars, etc. I've also been bloodtested for food allergies and removed those. Changes to the diet have never seemed to affect the symptoms at all.

For medication I first tried Gabapentin which took away 95% of all my symptoms with no side effects. It was amazing for about 4 weeks until it stopped working completely. We then tried Lyrica which was horrible; it made me so depressed. After that was Mexiletine which I'm still on. That has taken away almost all of my cramping. I was cramping 50+ times a day and now it's only a couple small ones per day. I'm just coming off Cymbalta now. That leveled out my mood but did nothing for the pain so I wanted to get off of it as quick as possible. I'm filling a prescription for Tegratol today and I'm hoping that will target the twitching.

I've had 3 EMGs so far, one in 2010, one in 2013 and one in 2014. The only change is that the number of twitches has been increasing.

One recommendation I can give is to not let things get too stiff and bound up. I get regular deep tissue massages and I do a lot of massaging on my own with tennis balls and foam rollers. If I let things go for too long without work and get bound up, I'm much more prone to injury. I think it's important to realize that if your calves are compromised in some way because of the twitching, your knee or ankle could be more likely to get injured. It doesn't seem to help with the twitching though.

For me, the twitching gets worse as I relax. It sucks because you're trying to rest and the twitching just ramps up dramatically. I think it's because the muscles can't twitch as much if they're contracted so the more residual tension you have in your muscles, the less they twitch. As that tension leaves when you relax, the twitching gets worse. That's my theory anyway. So I try to go into every "rest" knowing that the twitching is going to ramp up. I try to see it as a good thing as it means my muscles are relaxing a bit, but it can still drive you crazy sometimes.

Be conservative with your energy. The twitching saps it. When it comes to what you will and won't do, be a little selfish. Some people won't understand but that's their problem. I've had to learn how to say "no" more often and I've been much happier and healthier for it.

I wish I'd found something that will help the twitches but unfortunately, they just seem to have a life of their own. It's a mental game sometimes but I just try to accept them and find them interesting instead of aggravating. Sometimes I'll just lay down and "listen" to my body for a long time. Sometimes they make me mad, sometimes I cry, sometimes I smile, sometimes I laugh. It seems to help me accept that they're a part of me and not something that's happening to me, which makes me feel better for some reason.