twitching driving me nuts

Question

What is up with all the twitching?

I started having these after a few weeks of tingling.
Some days there are only a few twitches...today I felt like popcorn was exploding all over my body (legs, arms, stomach, jaw area, feet, hands).

What causes this? I there damage of the muscles when this happens?

-Sarah

renschwa · Answer

Wow- I also have this twitching and sometimes the popcorn, ripple feeling in my muscles usually in my arm/bicep area. I take magnesium twice a day as suggested by my LLMD and Jackie. It helps a little bit but I still get them maybe a couple to few times day. I just noticed reading through these posts about epsom salt baths- I will try that!

My twitches had calmed down a little recently... but last night as we live in PA where we were without power thanks to the latest blizzard (just came back on this morning). we were scrambling to figure out what to do for the night with 2 cats and as I lied down on the sofa to attempt to sleep, it was a twitch frenzy!!!!! Stress is def. a factor. I get them in my quads, calves and biceps. They come any time but lately I've noticed them espec coming as I try to sleep and as I awake- very odd. And they tend to occur in the exact same spots on my body. 

Wonko- I am so relieved yet feel badly for you that you had the shock like feeling in your neck. I too had that badly for about 3-4 days in December, over christmas and my b-day actually!  I almost went to the ER. I saw 2 neuro's who even after hearing that said they do not think I have MS, to my surprise ( I guess based on symptoms and normal MRI's). B/c from my reading I took it as that Lhermittes sign or whatver it is called that happens with MS and so I assumed and still wonder if I do in fact have MS. But I think that tends to happen when you put your head forward w/ Lhermittes? Well with my neck shock issues- it didn't matter what I did... I could turn my neck either direction or just sit still. In fact, I remember driving over to NJ to my sisters on christmas day and would cringe when we hit a bump in the road b/c it would cause that shock feeling in my neck that sometimes traveled up into my face or down my body. Just awful. I'd be interested to hear anybody's else's experience with that crazy neck feeling or the twitches.... I find it so helpful to hear others symptoms...And when my neck acts up, I notice it gets extra specially crackey. When I tell docs this they look at my like I'm nuts except my LLMD! 

My latest and newest symptom is sharp head pains- in random places. Luckily, they come and go quick. Like a quick bad headache.

littleox123 · Answer

Hi Surruh,

I also experience constant muscle twitching all over body. Even my face( below right eye and shin also twitched). Pins and needles on my hands,fingers,and foot. This happened after i contacted NGU and given some anto biotics. I have been and still carry to search a 
nero doctor that can help me. The doctors said I am depress, of course I am with all these twitching all over. If anyone know any neuro doctor that cna treat this in Singpaore. Pls
tell me.Thanks

wonko · Answer

Funny this post popped up again, or timely at least:  My legs have been twitching a lot the last few days.  Sometimes, it just feels like there are ripple going through the muscle.   Other times, I get stronger (but thankfully intermittent) full body jerks.

I think patsy10 has well described it before:  Often as one symptom lessens, another worsens.  So on a scale from 1-10 (10 being "normal and healthy") your score might stay the same, even though the most bothersome symptoms can be changing.

For me, my condition was much more stable before treatment.  Now, I am much more likely to experience big oscillations and changes in symptoms, even during a single day.

margypops · Answer

Yes I believe they come and go I put it down to taking anti biotics for other things, I have had some bad episodes and some good ones, I have symptoms at presant and am taking Supllments to build up my immune system, one is Silver, Couilad (dont know if I spelt it right) Liquid magnesium/calcium/ zinc all in one liquuid, BComplex  Vit C also 5HTP  I hate the lightheadedness and I feel very groggy most mornings, ..I think for me its just a feeling of not feeling well most days especially in the mornings.

patsy10 · Answer

Welcome.  Do you have lyme?  I'm not sure that there is a timeline for these symptoms.  They seem to come and go as they please.

sonjaking · Answer

Thank you all for your incredible information. It is people like you who will take time out, that will help someone else with this disease that the world for some reason turns a blind eye. I too am experiencing extreme twitching and it makes me crazy! I am on Tetracycline, 250mg 3 x times a day. Other then the twitching, I have extreme cramping in my hand and feet joints. Does anyone know how long these symptoms will last? It makes me so nervous!

cindy903 · Answer

Twitching is so annoying. Stress exacerbates mine for sure. So be careful not to worry too much while it's happening!

patsy10 · Answer

I don't think it's damaging your muscles either like Jackie said.  I've had so much twitching I would have no muscles by now if it were.  The twitching is a constant or frequent, annoying  reminder that something is going on though.  I try not to let it bother me much anymore.  It used to cause me great stress though.

wonko · Answer

Well, saying "flu-LIKE" grants some creative license.  I've actually had very little experience with the flu in my life, maybe congestion/cough aren't common with it, but aching and soreness is, right?  I know in general Lyme patients can feel like they are "coming down with 'something' " at the onset of a flare, and I've head lots of ppl descirve that "something" as "flu-like." 

I was told for a long time that my persistent cough and phlegm were from acid reflux, even though my reflux responded to prilosec while the cough and phlegm did not.  

JackieCalifornia-I am chuckling at your co-infection terminology, "bonus diseases."

JackieCalifornia · Answer

I agree with Wonko as usual -- we really *aren't* the same person posting under two names -- 

Lyme is sometimes called 'the new great pretender' because of its strange talent for showing up in odd and amazing ways in each person.  (The old 'great pretender' was ... syphilis, which coincidentally is caused by a spirochetal bacterium, just like ... Lyme.)

Now that I am (I think, I hope) cured of Babesiosis (a bonus disease that sometimes comes with Lyme), the Lyme itself is not so bad -- I'm temporarily off medication, and I can see it creeping back, don't know how bad it will eventually get, but it truly is different in everyone and at different times in each one.   So for right now, I can see that a mild case might be tolerable.  But who knows for how long ...  I'll be going back on meds soon.

Don't be afraid of fighting the Lyme -- it's a worthy battle, and with a good LLMD, you can be well.

Surruh · Answer

I did not know that lyme can cause a sore throat..thanks for the information. I never considered congestion and sore thoats as flu-like symptoms. Shows how much I need to learn. :)

wonko · Answer

You probably know this, but Lyme can cause sore throat and congestion.  When I do get a cold, I experience a delay in realizing the onset or departure of it because of the off-and-on congestion I get from Lyme.

A lot of people with Lyme will notice "flu-like" symptoms periodically, including cough, congestion, achiness, and nausea.

Surruh · Answer

I had a cold a few weeks before the mri. It's strange because I had this cold (stuffy nose, bad sore throat) for a few weeks and then it came back a week later with the same stuffy nose and sore throat. As of right now, I have the same cold again with the same exact symptoms. All these colds feel like the same thing...once I get better, wham..I get it again. My mom was surprised I was sick again.

-Sarah

wonko · Answer

I forgot to say, in addition to non-specific white matter lesions, my brain MRI also said something in the report about mucosal thickening within the sinus, and I think I've read other Lyme patients who had this reported as well. So take it with a grain of salt, but that could be a significant finding. Did you actually have a sinus infection or a cold or something at the time of the scan?

wonko · Answer

Oh, not the "post viral" explanation!  I've read about people being told this all of the time by neuros, but I've NEVER read any instance of when it worked out.

The twitching you describe, and the non-local character of your symptoms, and the clear brain MRI should lower your concern about MS for now.  This is just my advice/opinion, but if you do have it, it is too early to diagnose/treat, and there's not much you can do.  But, if it is Lyme, then time is of the essence.  

Trust me, I faced the same situation.  As soon as my neuro said it could be MS and I saw it on my MRI report, I couldn't get rid of my worry over it.  But I kept falling short of enough evidence for a diagnosis, and was told to "wait and see" despite obvious (to me, anyway) deterioration through worsening and new symptoms.

I didn't know much about Lyme, other than that I was told that it had been ruled out.  It took a lot of time and me getting much more sick and frustrated before I came around and re-considered Lyme.  I actually saw 4 neuros in 2008!  All 4, plus a rheumatologist and my regular physician, were all in agreement (and very stern) that I did NOT have Lyme.  I don't recall a tick bite, didn't have a bull's eye rash, and didn't have a "classic" Lyme presentation.  Yet I've had an obvious, dramatic response to treatment.  

Were it not for peer-to-peer forums on MedHelp and a few key people in my life pulling me aside and confiding their own Lyme stories to me, I would have never gotten to an LLMD.  If I never saw my LLMD, I don't want to think of where I would be now.  

I don't mean to rant, but if there is even a chance that you can catch this relatively early and avoid the pain and frustration, then please consider taking that chance!  I'm sure one of the great folks here have already suggested it, but look up the book "Cure Unknown" by P. Weintraub and film "Under Our Skin."  Both have easy-to-find website with lots of good info.  And keep us posted, too.

Surruh · Answer

I went to a neurologist who told me based on my symptoms which were at the time: all over twitching, tingling in feet and visual disturbances, that it didn't sound like anything serious. He mentioned a virus and that he wouldn't be surprised when I see him in May if all my symptoms went away. They haven't. My eye disturbances are the same (starbursting/halos/floaters/eye pain/static),i still have tingling although more in the legs now and the twitching is still random.

I had a brain mri w/wo contrast (normal except for sinus infection of some sort)
I had VEP, nerve tests, muscle tests, lots of bloodwork (no lyme),eeg, and a complete neuro exam with everything normal except by ankle reflex was a little slow. He told me to come back in may for a follow up but he doensn't expect something like ms (I do!). Opthamologist says eyes look good and EKG was normal for my heart.

My other symtpms which come and go are: chills/goosebumps, vertigo when tilting my head a certain way or turning over in bed, random heart palpatations/pounding wich were really bad a month ago, some chest pain, shortness of breath and I get drunk from alcohol really fast now. I used to have a high tolerance of alcohol. I also get a couple headaches a week but nothing too bad.

The first thing that really scared me was I experienced a bad panic attack before all my symptoms. My dad and brother also suffer from anxiety so I just thought I was getting it from them. haha

Anyways thanks for all the wonderful responses..I appreciate it.

-Sarah

wonko · Answer

Yes, you can feel alright and still have Lyme.  I waited more than 6 months to initially see a doctor about strange symptoms, both because they were not interfering and because they were so strange!  (Like my cheeks would tingle when I drank coffee or other hot beverages, and my neck would feel like it was given a small electric shock at random times...Small stuff!)

It was only when these weird symptoms escalated to the point of distracting me all of the time that I first went looking into it, and even then it wasn't disabling, just annoying/concerning.

It is great that whatever this is, it's not hitting you that hard yet.  If it is Lyme, you are likely in a more treatable stage.  

I do get twitching.  I break it into two kinds:  I have big jerks, sort of like the kind you can get as you are falling asleep, but I can get them anytime.  They are usually isolated and make my whole body jump, and hit randomly.  Then I also get I think what is more like what you describe, only less severe in my case:  One muscle group will sort of bounce/partially flex around by itself.  I get it more in my legs, but have had it in my arms and in my back, too.  In me, it wouldn't show through a jacket, it's more subtle.

Please do look into Lyme testing.  Push for a Western blot, the ELISA is worthless (I was negative on it twice).  The mainstream docs follow the two-tier testing, where only a positive ELISA goes on to get a Western blot.  But if you have neuro symptoms (like tingling!) and live in an endemic area, they should still do the Western blot even if the ELISA is negative.  (Not sure where you live, or where you have traveled/visited, but hopefully you can push for the W. blot...)  And get the full results on the blot.  Don't settle for "negative" or "positive," ask for the detailed results for the bands.  Igenex is the best lab, but they are private and don't take insurance.

Lots of "us" (Lyme patients) get dead-ended in mainstream medicine.  My PCP refused to order a Western blot, or to do a trial of antibiotics.  So I had to find an LLMD.  Most do not take insurance and it's a difficult step to take off of the beaten path.

How extensive a work-up have you been through?  What other diagnoses are your doctors looking into?  (You may have posted all of that before, I just don't recall.)  If you've had a lots of tests and few answers, then I'd move Lyme up on the list of suspects.    

While you are not desperately ill at this time, if you've already been thoroughly tested for other diseases, then I would encourage you to consider seeing an LLMD.  Especially if your regular doctors don't take Lyme testing seriously.  If it is Lyme, the earlier you treat, the faster, more complete, and less complicated your recovery will be!

Surruh · Answer

Thanks for the response..i will try magnesium supplements.

Do you have to be really ill to have lyme?  I feel pretty good and I can go about my daily life pretty well. I'm just fusterated with all my strange symptoms. My tingling, twitching, and eye issues are pretty constant and my heart pounding/palpatations come and go with chills. Working out has been harder because I get out of breath really fast and my calf muslces feel tight. I can't seem to get to fall asleep unless its pass midnight. Those are the only things in my daily activites that have been afftected but otherwise I feel pretty good although a bit lazy.

I hear a lot of people saying how sick they were and how they couldnt get out of bed and do things...this is not me. Can I have lyme even if I feel alright?

-Sarah

gorbybelle · Answer

I have been taking magnesium 600mg. a day for about 5 months now - it does seem I get more 'muscley' aches if I forget to take it for a couple of day's.

I also find Epsom Salts beneficial .

JackieCalifornia · Answer

Oh, yes, my muscles do that rippling thing too, and I'm so totally NOT buff.  I was watching my bicep jump around the other day and thought it would be amusing to paint a hula dancer on my arm and watch her dance.  :)

I have read that Lyme 'bugs' (bacteria) use magnesium in their reproduction activities.  So they use up what's available in your blood stream, and then your body goes to its secret stores of magnesium inside your cells and starts hauling that out into the blood stream to keep the level up appropriately there.  The problem is when the cellular 'warehouse' is being emptied faster than your diet can refill the warehouse -- then the blood stream doesn't have enough magnesium, and then your muscles can't communicate their little electrical signals like they are supposed to.  Result:  twitching, cramps, and [since your heart is a big muscle] irregular heart beat.

Did my doctor tell me this?  No.  I had to piece it together myself.  Even my dear LLMD doesn't seem to believe that magnesium can be run down to such a low level.  However, I did a little research online and found among other things an interesting medical study done on South American people with bad cases of tuberculosis who were being treated with longterm antibiotics that gradually depleted their magnesium stores, and they ended up with, yes, heart irregularities.  When my LLMD tested my blood for magnesium and told me it was all right, I asked how to test for the intracellular levels, and was told it can't be done.  So I tracked down a place in Oregon (?) where they have a special test they can do for just that:  intracellular magnesium levels.  But he didn't bite, so I didn't get tested.

Why does this matter to me?  Because when I got really, really ill with Lyme and babesia 3 years ago after a trip to Connecticut, I felt lousy and exhausted and in muscle and bone pain for about 6 to 8 weeks, but the thing that finally really got my attention was my heart:  racing, pounding, you name it.  I staggered into the local (and quite excellent) hospital Emergency Room, and the nurse/tech responsible for cardiac admission pounced on me immediately and hooked me up to the EKG.  They thought I was having a heart attack, and so did I.  I was freaking terrified, and I don't scare easily.  They hung some IV fluids (electrolytes, which happens to include ... magnesium!) and in two hours I felt just FINE, if a bit tired.  I asked the ER doc what he thought it was that caused all the ruckus, so I would know what kind of dr to follow up with, and he said, "Maybe endocrine."  He handed me a little bottle of metoprolol, which calms down a frantically beating heart but does nothing to explain or fix why it's happening, and sent me home, with a suggestion that I get a Holter monitor (one of those little computers they strap to your waist with leads attached to your chest so they can catch and record tracings of heart irregularities in real time, for later analysis.)

I went to see my regular dr (an internist) the next day or so, and he (1) doubled my hormone pills and (2) told me to stop drinking so much water, try some Gatorade instead -- never bothering to consider that my raging thirst was due to the electrolyte imbalance in my body caused by magnesium depletion.  And this guy is really smart and well respected, a former chief of staff at a fine hospital here...but he doesn't do Lyme.    

Two days later, I was back in the ER again, with the same problems.  Two bags of IV electrolytes later, I was feeling so good that I walked home a dozen city blocks, all uphill.  I was in the early stages of a very bad neuro-Lyme and babesia infection and so not thinking very clearly, but I made it home okay, by the grace of god.

Months and months of pilgrimages to endocrinologists and other MDs, and no diagnosis.  I finally talked a neurologist into running a non-Igenex Lyme test, and it showed weakly positive, but since the neurologist had told his receptionist not to book me any follow up appointments, I took the results to one of my several serial endocrinologists, who said "Hmmm, looks like maybe Lyme, but I don't think you have Lyme, because..." (and these words haunt me still) "...I have patients with Lyme, and they are all near death."  All. Near. Death. 

I took those Lyme positive tests and got myself in to see an LLMD, who then set about testing, diagnosing and treating me.  This wizard LLMD however does not pay attention to electrolyte levels, and maybe I'm just real sensitive that way, but I finally began taking magnesium supplements on my own and within a couple of days began to feel noticeably better.

The antibiotics I have been on began to rip up my stomach, however, so I had to go off them AND off the magnesium.  Now I am instead using very warm footbaths with Epsom salts for about 15 minutes once (better twice) a week, and it noticeably perks me up mentally and totally stops the muscles from dancing the hula, and my heart is a happy camper. Epsom salts are a form of magnesium, and just like people in Europe who take the mineral baths, it's a way of getting magnesium into your body through your skin.  It also takes away aches and pains generally, which is why people use Epsom salts, so it would make sense that it works for your muscles ravaged by Lyme too.

I am sorry to run on like this, but wanted to tell you the whole story of Magnesium & Me -- try the footbaths and see if it helps you overall -- both biceps and other muscles, but most importantly, your heart.  

I think I got a low level Lyme infection 5 years ago, which resulted in fatigue and feeling really creepy sometimes like something really bad was going on in my body.  Then 3 years ago, I think I got another tick bite, and this one was what sent me to the Emergency Room with the severe symptoms.  Perhaps it was the addition of Babesia in the second (also unseen) tick, perhaps just getting another dose of bug juice, but I was terribly ill.  Please do not be passive about this -- if you know you are sick, find an LLMD who will diagnose and treat you properly -- it will change your life.  It saved mine.

Neurologists have a bad reputation among Lymies, because they don't see the body as a whole somehow.  The first drs to notice Lyme were rheumatologists, so they required a bite and swollen knees to make a positive Lyme diagnosis; the next drs to take notice of Lyme were the neurologists, but somehow they couldn't see past their own prejudices about the disease, and have generally (in things I read) not been effective at diagnosing and treating people with Lyme.

My best non-medical advice to you is to find yourself an LLMD quickly.  You don't have to tell your neurologist you are doing that -- one big advantage to the current medical system we have is that you can pack up and go see another doctor while you're between visits with another.  Kind of like cheating on a boyfriend, only not.  HMOs are harder to do this with, but I just pay out of pocket:  what price my health?

If you don't know of an LLMD near you, please post and say so, and we'll try to locate someone in your area.  What have you got to lose?

Best wishes and happy Epsom salts (available at your local pharmacy but cheaper at the supermarket) to you --

Surruh · Answer

Well I guess its not really a popping...more rippling I think. I was wearing a jacket the other day and my friend asked me why my muslce was moving on my bicep. haha

No, I am not on any medication for lyme. I'm going to ask my neurologist to test me for lyme when I see him next month. I'm still very worried and anxiuos that what I have is ms even though all testing has been normal. My symptoms don't seem to wax and wane and some symptoms like heart palpataions/pounding and chills don't really sound like ms. But I still can't get it out of my mind.

I'm thinking ms is more likely than lyme but who knows.
Anyways thanks!

-Sarah

JackieCalifornia · Answer

I don't think your muscles are being damaged, instead I think (but don't know for sure) that the Lyme bacteria are irritating the muscle fibers -- the twitching happens to a lot of people, but I've nevere heard it described as 'popping'.  

Something you might try is a foot soak or bath in Epsom salts -- it's magnesium and it soaks into your pores.  That is supposed to help with twitching, I think.

Someone else here could provide some more data, perhaps.  Are you on medication for Lyme?