Finding Support with Calf Twitches

Highlights Only
The bottom line is always:Once a doctor or a neuro has cleared you, theres is really nothing to worry about. All those rare cases, people are freeking out about, with twitching before weakness and so on, didnt pass a neuro and THEN turned into something evil. There is very few - if any - reported cases with ALS-sufferes who passed a clinical xm. The funny part is, that all uf us here have imagine the IFs and BUTs, but nobody - NOBODY - have ever reported the worst case scenario yet. And why? We all passed the clinical. Many even got their scannings - and are still in doubt. Thats why the bfs-thing is handled like a psyke-thing by the doctors. Its like questioning a HIV-test or a cancer-scanning. If you do that - woops - you are a mental-case. Dont question your doc on this one, believe me. The twitcing is there, but it aint gonna kill you
 
Agreed. But it is extremely frustrating because it is so relentless and nothing seems to help. Sometimes you feel like someone is controlling you with a voodoo doll - a jerk of the hand here; a movement of the leg there; non-stop twitching in the calves. One can't help but be anxious about it, even if you know in your mind that it is benign. It only seems to abate when exercising or working on something that takes full concentration (probably still there but you don't notice it). When you want to relax, that's when you notice the most. So you can't relax. It's a catch-22. Knowing that others are in the same boat is extremely helpful (misery loves company). But also finding out that nothing seems to help but time buts a bit of a damper on it for us relative "newbies" (I'm in month 4).
 
Thanks everyone for your post!!!!! Can you tell me a little more about this medicine that seems to help? I did not want to try sleep medication but went to the Dr. without getting a nights sleep for almost 2 weeks..(seriously) it was just awful.. I would lay and twitch, twitch, twitch and then my mind would start going crazy with all the bad thoughts:-( It's a bad cycle..... I am trying the magnesium and have significantly reduced caffeine to hardly any now.. I thought I had noticed a difference but the last 3 days the twitching has became just as bad....Does anyone else notice that excercise helps while you are excercising but afterwards the twitching is even worse?
 
I notice some major twitch outbreaks sometimes after heavy exercise. Yesterday I was having the rapid fire, buzzing twitches in my left hand and arms. I had done a lot of arm weights earlier. The thing is for me though, if I stop the exercise because of the increased twitching, I end up with my legs getting crampy, achy and feeling very stiff. I find the exercise helps these symptoms.
 
I take the magnesium and I quit caffeine (I had been drinking a pot of really good stuff I ground myself every day) and, like you, saw some improvement for a while only to see the twitching come back. Laying off the caffeine has definitely helped my anxiety levels though. I also sleep better w/o caffeine. I also find that exercise helps a lot for a while. I wouldn't say exercise necessarily makes mine any worse...in fact, I think it helps because it releases stress and takes my mind off things. I've found that when I start to feel stress or anger my twitching really gets worse.To sum up, my opinion is that stopping caffeine and exercise are both good things to do and will provide some short term relief, but they're not going to stop the twitching. Let us know if you come across a miracle cure.
 
Exercise is another catch-22, at least for me. It helps mentally fight the question that the twitching is something more sinister, but yes my twitching (mostly in my calves) seems to be worse after exercise (jogging). As to meds, it seems that everyone has tried different things and some have helped and some have not. I have tried dilantin and am now on neurontin. Neither has helped whatsoever. Klonopin seems to have helped others so that is what I am going to ask to try next. Anti-anxiety meds (SRRI's) seem to help some, at least in these first excruciating months. I am on lexapro and it has dampened the anxiety a bit, but I still have major problems on most days. The best med seems to be the passage of time, unfortunately for those of us in the early phases. Although others have disagreed, I think that anything that will help you get through the early periods of bfs should be tried. I am approaching my meds as a short term (less than a year anyway) "fix". As time wears on, the anxiety should start to abate (at least that is what I am hearing from the "old timers" - who have been wonderfully supportive by the way) and therefore I should be able to wean myself from any and all meds. At least in theory anyway. Good luck!
 
Hey Melanie,Hang in there girl... I am in your same boat and most people don't seem to understand but all of us here. Believe me I spend all day long thinking about this and trying to come up with a logical explanation as to why it's happening but just keep hitting walls. Did I get bit by a crazy mosquito, did I overexercise my body that caused some sort of issue in my spine? Is it purely stress related ? What the heck!!!! The doc gave me Ativan, but I still haven't taken one, although tempted. If this keeps happening, I hope, like many say, that I will learn to ignore it and live with it... It's just that question as to WHY it's happening has got me perplexed.The latest thing I am thinking about is seeing a Chiropractor.. Maybe there is something in my spine that is creating a short circuit to my calves.. I don't know... If someone can find a cure that works, please let us know!!Do you know what you did the days before the twitching started?Mike
 
Mike,My twitching started after 5 months of very bad stress/anxiety. Then my thyroid went overactive. I started medication and 2 weeks later the twitching started. I have no idea if any of it is related but I have to think it is cause there is no other explanation for it.Leslie
 
Hi Leslie,It makes you wonder if it was the medication? or do we all have separate and distinct triggers? was in a virus that caused it? Or was anxiety by itself the trigger?Prior to mine happening, I had done quite a bit of physical activity and had a bunch of stress going on. We do get mosquitoes around here.. now I haven't read anything about mosquitoes but thought I saw something that West Nile and Lyme disease can cause twitches.Nevertheless... I am glad we all have this outlet to support, vent, complain, etc... :D) Mikey
 
Hi Mikey,I was actually going to write to see how you were doing.. I joined this group after reading your post because your symptoms sounded exactly like mine!!!!!Mine started after a terrible sinus infection that I had.. I had it for around 7-8 months.. It would go away and then return over and over again.. They put me on several antibiotcs during that time to try and get rid of it... Probably 7 different kinds.. I remember my legs started first..... I first looked it up and thought maybe resltless leg syndrome and tried to ignore it.. I knew my body had been through a lot... Mine has been going on for well over a year.. I started excercising a few months ago.. Walking 5 miles a day and then it got really, really bad.. That's when I looked up twitching and found the "bad word".. I am not even going to say it... lol Mine is mostly in my legs.. It feels like popping... It is really, really bad in the morning.. I hate to know what is going on with my legs while I am asleep.... I definatley have it other places to though.. I think I have felt a twitch pretty much everywhere you can feel one.. I notice them all now that I am constantly thinking about it..My neuro did say Lymes disease can cause twitching.. I know that is something he is testing me for.. I think he is testing thyroid also...
 
I also forgot to mention that my neuro said that if it were something bad you would know it!!!!!! After doing my clinical exam he said you do not have the bad word.. That was before even doing my EMG.... After the EMG he just basically said don't worry about it and is just doing some bloodwork... I know the bloodwork consisted of lots of vitamin levels, thyroid, a glucose test and that's about it I think.... I still haven't got the results but am hoping all is well.. Most people on here are telling me with a clean EMG I shouldn't really worry about it being anyting really bad...
 
Hi Melanie,It's good to know we are not the only ones in the world with this!! I am glad you found my post. I just needed to vent and talk to someone who was going through what I was going through. I actually spoke to a guy on here named Chad who is going thru the same thing we are. If you ever need to talk to someone who understands, I am here as well as everyone on here!Mikey
 
Mike,That is the great thing about this board that you are not alone. Each and everyone one of us has gone through or is going through this right now. I'm 5 months in and I still get scared but this board has helped me in so many ways. Stick around here and you will get through it. It really does take time.~Leslie
 
Hi Mikey. I just joined so maybe this is coming to you a little late as you posted this last month.When I read your symptoms, it is exactly like mine. Eactly! My calves are the primary culprit. Its what I first noticed. They are 24/7. Multiple random spots one right after another on both calves. People have described this as looking like a bag of worms inside your leg, or piano keys on one of those pianos that plays themselves, and someone even described it as popping popcorn. They all pretty well describe it.When I first wake up in the morning, before I even get out of bed, I will check my calves sometimes and that is when they are at their best. Sometimes I think i am cured. Then I walk around a little bit, and by the time I get to work, sit down and check them, they are going like nuts. They do seem a little better in the evening.Also get the random pops everywhere else. Totally. And that CPK is nothing to worry about. Its only a little high and can easily be explained by your exercise before the test. I see it all the time. I am a physician as well (not a neurologist).After this much time if you are still well and not weak, you are fine.Keith
 
Hi Keith,Sorry it's taken me so long to reply. I am really sorry you have to go through this too.. I can say that in a few days it will be almost 4 months with no real changes that I can notice.. Although, it has seemed to get way more noticeable for me lately. I thought about a month ago it was getting better OR I was just getting better at tuning it out. For about the last 2 1/2 months I told myself not to look at my legs, because it was only making me feel depressed. I elected to try to ignore it the best I could. Well, yesterday, I decided to look at my legs, and they were popping off and doing those things that you just described in your post. I knew it was there all along, because I can feel them, it just made it much worse yesterday when I look at my legs. I find myself standing a lot, because that's the only way that I feel them less. This has really taken over my life and I HATE IT! I really wish there was something that could be done. By the way, I see in your profile that you like red wine... Well, so do I, in fact my personal doc says he drinks 2 glasses of wine every night for health reasons. Could the wine have been a trigger ? Sulfites or something ? Anyone else here with the same problems a red wine drinker ? Thanks,Mike
 
Hi Mike, Interesting theory about red wine being a trigger of sxs. I have a mild allergy to red wine and it is likely a reaction to sulfites. It manifests itself as sneezing, throat tightness and facial edema - this has been happening for years. I drink a glass of red wine a day on weekends - also for health reasons of course! ;) I started twitching about three months ago, and so far I haven't noticed wine drinking being a trigger but I continue to sneeze from it just the same. I'm curious what others have to say. Kat
 
Thanks for your input Mikey.We are pretty much the same. Twitching all the time. Last month I was doing really well also. I tuned it out, and actually thought things were going away. I even took a week or so and didnt visist this site. I thought I was kind of "moving on," and not obsessing over this. But I look at my calves and sure enough...There they go. Also my hamstrings and various other spots.But no weakness. I even moved to a new house two weeks ago and did a ton of lifting and pushing etc, and no problems whatsoever. I was so tired that I didnt even notice any twitching.I thought about the red wine as well. I even gave it up for a week, but I didnt think it made much of a difference. Maybe it wasnt long enough. Also, I really enjoy the wine, so maybe a little twitching, as long as that is all it is, is worth it.I am not sure, but I may try and quit it for two weeks and see if there is a change. let me know if you have any luck with this as well.Keith
 

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