JoshElliott
New member
Hi all.Where to start... sorry if I ramble a bit. Oh, I had my ALS/MS scare about 6 years ago, so I'm past that.I'm 30 years old. I first noticed my calves twitching when I was a kid, I think I was about 14. I've had back pain issues and tight, cramping legs since I was a freshman in high school and I believe that's when I first noticed the twitches. I'm glad to have found this board. Since I've twitched for so long, I've gotten pretty good at ignoring it but there are definitely times where I feel like I'm going crazy. It's been interesting to read some topics on this board and realize that other people are suffering with the same issue. I couldn't feel the twitches back then; they were firing 24/7 but I would only notice them if I looked at my calves. The cramping issues started around the same time as the twitches. I used to play a game where I'd see how little effort it took to make different muscles cramp.Back then it was fun and interesting, nowadays it's not so fun.Symptoms when I was 14Calves twitched 24/7. I couldn't feel them but they were constantly moving.Cramping issues in my legs. My calves would cramp all the time and my feet would sometimes cramp as well.Bad back pain. It kept me from being very active in my teen years.Over the last 16 years, my symptoms have gotten progressively worse.Symptoms now at 30The twitching has spread to my entire lower body and I feel almost every twitch. I laid back, closed my eyes and decided to count the twitches that I could feel about a year ago. I did different minutes for each body part as it'd be overwhelming to try to count them all at the same time. In 1 minute I felt 30 twitches in my foot, 112 in my calf, and 56 in my thigh (quad/hamstring). It's the same on the other side and I'm sure it would be worse if I counted today. These are my calves from 2 years ago. It's worse now: The constant twitching is only in my lower body but I do get hotspots of twitching in my upper body throughout the day. It can hit anywhere but usually stays away from my face.I have bad cramping issues in my entire lower body and mild cramping issues in my upper body (back and hands mostly). I stretch out dozens of cramps each day. Some occur on their own although usually they are caused by some sort of movement. The most common cramps are in the feet and calves. Luckily, given my experience with cramps, I'm very good at catching them before they get bad.My lower back has issues. I have built up scar tissue there over the years somehow. I work the lower back muscles and getting them stronger has definitely reduced back pain, but I still suffer through occasional injuries there. Theories are that the leg issues/over tight muscles are putting strain on the lower back.I have a hard time being on my feet for more than a couple of hours. This has also greatly improved through exercise but all of my muscles start to stiffen up quickly. The more familiar I get with my body and with different stretching methods seems to help increase the amount of time that I can be active.Things I've triedI had an EMG test about 6 years ago to rule out ALS. They noticed the fasciculations but said that they were benign.I've been tested for every mineral/vitamin/heavy metal/etc. I fixed all my deficiencies but the twitching has stuck around.I came up negative for the Isaac's Syndrome antibody.I've had X-rays and MRI done of my back to rule out disc, spine damage.I've tried dietary changes. Cutting out gluten, caffeine, etc. Nothing has helped. Found out I was allergic to eggs, cut that out but no change to twitches.I've tried multiple chiropractors/acupuncturists/massage therapists/body work (rolf, myofascial release, etc) with only some benefit.I've tried homeopathic remedies from my naturopath.Things I've learnedStretching helps the stiffness. Not much, mind you, but it does make a positive difference for me.The twitching seems to have an effect on the muscle tissue and fascia. Every bodywork specialist that I've seen has been stunned by the state of my lower body muscles. I'm always the "worst they've ever seen". Our theory is that the constant contractions are causing knots/trigger points to form in the muscles and then they just compound over time. Working out these trigger points will bring some relief. It won't stop the twitching at all, but it will help the stiffness/mobility. The trigger points will come back, mind you.I highly recommend that fellow sufferers start researching self massage a bit. I use tennis balls, lacrosse balls, a Thera-cane, etc. It's a learning process. It won't cure anything, but it has made life a bit easier to deal with.After 16 years of twitching, I don't have any muscle wasting. I'm active, strong, and able to get stronger/put on muscle. I box, grapple, and lift weights often. Exercise definitely makes the symptoms worse though. Long periods of inactivity have coincided with less symptoms but I refuse to stop exercising. Given how beat up I am after working out, I assume that I have some degree of "exercise intolerance" but I've had these physical issues for so long that it's hard for me to remember what "normal" feels like.What now?Well, I'm researching things a bit more and posting this because I'm getting worn out. I go through dark periods a couple of times per year and I'm in the middle of one now. Sleeping is difficult. Relaxing is difficult. I work at a computer and I can't focus on things. Both of my calves are twitching over 5 times per second as I type this and it makes it very hard to concentrate. It makes me want to beat them with a stick (I've tried that by the way... doesn't help.)I worry about the future. My wife is worried. In the last 2 years, my hamstrings and quads have gotten really bad. In the last 6 months, the twitching has started moving up into my lower back and I have visions of a wheelchair in my future. I try not to dwell on it but sometimes it just gets to be too much.I've never been on any pills for it. When things get really bad I have a couple scotches, put my headphones on and just try to fall asleep. I'm not hot to try pills because of the potential side effects, but I may have to soon.I want to go see more doctors but I've had such lack of results in the past that I'm not very motivated.*sigh*Well, that's me and that's where I'm at. Sorry for the long post. I remind myself everyday to count the blessings and that it could be worse. These days with friends dying of cancer and whatnot, it seems silly to complain about some benign twitches and cramps... so I usually don't. Sometimes you've just gotta vent though, lest the demon worms under your skin drive you insane.Thanks all.-Todd
I have only been twitching since Jan of this year & I can't imagine for 16 years... But I may have to. They never seem to go away from what I hear but I guess as long as its nothing that will end my life I can deal.. I have an EMG in Nov (first one) so I'm very nervous to get it done. I don't seem to have any cramps but I have aching in my legs that increases with exercise. I really just wish I could be normal again.. 
welcome to the twitchers corner at least!!