posted
I was wondering if anyone that has experienced fasciculations as a symptom of your Lyme disease could provide some details as to how they manifested? I realize that no two cases of Lyme or the symptoms it produces are exactly the same but I'd still like to hear from some others. These things are freaking me out. I am wondering about: Where do they occur on your body? Are they widespread, localized? Are there any hot spots where they are more focused? How long do they last? Are they just quick blips or are they sustained bursts (or both)? Are there any hot spots where they tend to focus? Is there a particular time(s) of day that they are worse? (evening, moddle of the night, morning, etc) Any input would be greatly appreciated.
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
Kenny, I get them all over,face back,calves,fingers,i am a twitching machine.Mine are pretty constant
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
yep
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Twitches are one of my most prolific and stubborn symptoms. I've had them for over two years.
I take tons of Magnesium but cannot seem to ever get a break from them. However they have gotten somewhat less intense.
I have them all over and have hot spots that act up for a couple of days (bursts of twitching on and off throughout the day)
These spots include tri-ceps, bi-ceps, thighs, calves, shoulder, back and abdominal muscles, eyes, thumb, even my tongue (which is a really weird feeling).
I also have sensations on the left side of my face and in my chin that feel like twitches, but you cannot see anything moving.
It's like a gentle percolation under the skin.
This symptom I've had throughout the duration of my illness - never get a day off from it.
When my fatigue is really bad- twitching is more intense.
I've read on this board that some people have fasciculations for a while even after they are well!
Also when I've taken xanax in the past for bad anxiety it quells the twitches a bit.
Hang in there!
Posts: 116 | From Pennsylvania | Registered: Mar 2005
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posted
Kenny, I get them and they scare the begeebees out of me. I tend to get the twitches on the right side most often, inside of foot, calf, quad, bicep, tricep, ab... even chin. I also get the myoclonic movements where my arm or finger or leg or even ab muscle will jolt a bit like when people are falling asleep. Between the twitches, the myoclonic movements and the tremors at times I fight hard not to fall into the "I have ALS" trap. Are you seeing Dr. J in Mercer Co? Hopefully all will resolve iteself in time. I am only on 400mg of Doxy/day at this point. I am thinking that once I see the LLMD I will be on IV abx. Hopefully that will help lesson htis stuff. Good luck with your symptoms. Michelle
Posts: 64 | From Pittsburgh | Registered: Sep 2005
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David95928
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Member # 3521
posted
I still get them even though though the disease is well managed. Taking enough magnesium to help with them can be a problem and, according to Dr. B's treatment guidelines 2002, may not work at all.
Magnesium sulfate has helped people here whose fasiculations have been a problem. It is injectable and can be taken IV or IM. One gram (2 ml.) IM about every four days keeps them away. If I stop, they start in under a week.
It's inexpensive at about one dollar a dose. I get it at CostCo in boxes of twenty-five vials.
David
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
adreesing co-infections like babeisa and bartonella helped me to get rid of them. I used to have them on my legs, face and parts of the abdominal-back area. Very few in my arms though.
Posts: 983 | From The sky | Registered: Feb 2005
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posted
I've had these from about 1-2 months of disease onset (Feb 2004) until present. They have gotten much better, but I still twitch alot. In the beginning it would make my limbs jerk and sometimes my head shake...like parkinson's.
As I use my rife machine, they increase. And I get them along with small muscle cramps.
Also, I seem to sometimes get "swarms" of them. For instance, I can be sitting for hours with just get one or two every 10 minutes, but there are times when I'll feel them in my left calf, then a second later in my right calf then just above one knee, in my thigh, then arm, hand, then back to the calf and randomly over the next few minutes, but in rapid succession.
Also, when I first began treatment, if I'd do anything that would bring on a really strong herx (like from a hot bath), I would have a non-stop twitch in say my hand for a couple days.
As is common with lyme, I sometimes wake up in the morning with numbness somewhere, either hands/fingers, feet, shoulder. Anyways, wherever I get this numbness is where I will have the majority of twitching/fascillations for that day.
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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Andie333
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posted
This is a symptom I only seem to have when I'm herxing. Then, it's primarily my arms and just under my eyes.
For me, it's really troubling, but since I've increased my magnesium, the symptoms seem to be diminishing.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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SForsgren
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posted
I get them all over but moreso in the lower part of my body. Legs, calves, etc. Sometimes in my head/face, hands, etc. but less often.
I originally thought it was related to magnesium but now I am less confident. My LLMD suggested that it is caused by the keets, and not the mag deficiency.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Thanks again for all of the input. I still have yet to be re-diagnosed with Lyme but after 5 times in 14 years I think it's s foregone conclusion. So, mine started with a twitch in the right triceps (which I've had once every month or few weeks for years), spread to the biceps, shoulder, then on to both quads, hamstrings, stomach, chest, neck, back, eyelids, etc. They sporadically pop in during the day but get worse at night, especially in teh wee hours. Also aggravated a bit (for an hour or so) by excercise. I guess the little bast**rds don't like endorphins. I started taking some magnesium and it seems to make them less intense. Hopefully proper meds will change all this. Thanks again...
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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ticked in ri
Unregistered
posted
Fasciculations started in late May 2005 with some slight twitching in the calves and feet. Then noticed some fascs in the upper legs, upper arms and back. Prior to this my primary symptoms were muscles aches and cramps. Saw a neurologist and neuromuscular specialist. Had 2 EMGs which were normal. Neouromuscular doc said I was a variant of cramp fasciculation syndrome.
I started researching that which lead me to another forum called aboutbfs.com. I saw some discussions about lyme disease and decided to research it myself. I found a lyme knowledgeable doctor and am now being treated with 2 abx for lyme for about 8 weeks.
The fasiculations are not completely gone but are much better especially the calves and feet. I occasionally will get a twitch in a new place. The latest is the back of my neck/base of my head and on the my sides near my ribs.
I'm hoping that with abx and time, I can be rid of this fascs completely. They scare me a bit.
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posted
Oh yeah, and for me, stress/anxiety seems to greatly aggitate the fasciculations, as well as muscle/tendon pain, cramps, etc.
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
Hi- My first symptom was fasciculations and I got them every where - my chin, bicep, quad, even where I didn't know I had muscles. There are hot spots sometimes. My right quad and right tricep seem to be the most hot. I get whole body jolts also, and woke one night biting my tongue from a body jolt. Beware because about a month after my fasciculations started, shooting pain started. I know not every one is the same but that symptom was really unnerving because it really hurt and I never knew when it would happen. Everything has gotten better but I think I am just in remission for now. Still pushing for the lyme diagnosis.
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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posted
Thanks for all of your feedback. I really appreciate it. Does anyone else care to chime in with their stories of twitching/fasciculations? Thought I'd give it one more bump up to the top. Peace...
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
The Fasics,,differ in every case,it depends on the BB. strain that you have.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
Hey jsnyde2, I've gotten that whole body jolt at night a bunch of times over the past few years. WIth the tongue bite as well. I had been having that and the triceps twitch off and on for a few years before this flare up in September. I wonder if those were actually my first mid/late stage Lyme symptoms? I think so.
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
those full body jolts- I used to get them- and the ripplings- and all of that- Biaxin actually helped my twitching a lot- but 9 omnths of IV Rocephin stopped everything- those body jolts were scary- lifted me into the air- I would jerk like a fish on a line-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I had twitching for years pre diagnosis. My old boyfriend told me that it was my body relaxing. He had the same thing.
He was a tree surgeon and I think that part of my infection came from him.
The worst ones were my eyelids and my thumbs. I'd be having a conversation at work with my boss and my eyelid would start fluttering. It's very distracting. My thumbs took turns twitching from side to side. Totally uncontrollable.
I now am much better and can gauge how I'm doing by whether I have twitching or not. When I start twitching, I know it's time to step up the program again.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
My daughter does have twitching problems. I have the "body jolts", usually at night when falling asleep - it even wakes up my husband.
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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trails
Frequent Contributor (1K+ posts)
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posted
been getting them since re-infection by black biting flies in 2000. Think it is babs, not the lyme, but not sure. Nothing makes them go away. Gets worse with stress and exertion. I get them in every muscle possible. No kidding.
I'd like to hear more about the injectable mag.
Going to see my new LLMD here in crowdedfornia tomorrow! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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WildCondor
Unregistered
posted
I used to get them all the time, and especially during a herx. Mine were helped greatly by magnesium injections (mag sulfate) and mag tab pills, I also took b complex and b12 injections.
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Just Julie
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posted
I'm a twitcher too, my first symptom in May 2000, thought it was ALS or MS, until I got on this site and found my LLMD.
My twitching never subsided-even while on all sorts of abx combos, for over 2-3 yrs straight. Some of the time, a muscle group would start twitching, and not stop (same muscle group, like my stomach muscles) for weeks. That would drive me nuts-usually my twitching resembled a pinball binging around from muscle to muscle.
When my stomach muscles twitched for 3 weeks straight while on vacation in Lake Tahoe, I knew I'd never get to sleep at night, so I started the merry-go-round of sleep pills, ending up with Restoril 15mg being the thing that would finally let me get to sleep and sleep thru the stomach muscles looking much like they did when I had a 9 lb. baby in there!
For the kicker (ha) let me finally comment on the surreal landscape of a butt twitch . . . there is nothing like a really good butt twitch to make your day. Muscles that twitch where you thought no muscle could ever be is something only a lymie would understand.
My muscles finally stopped their dance almost 5 years to the day of their first starting up. That is AFTER I had stopped taking all abx, too. I think I'd been off all abx for months before I noticed that my muscles were not twitching anymore, and even then, I wasn't sure they were really quiet for good. In fact, I had about 6 months of no twitches, and then boom, they were back.
But, they were not non-stop twitching. they would come and go, and be more likely to come on when I was having an adrenaline rush (like being stressed out). I also tried the magnesium, and none of it stopped the twitching, which is also something I noticed reading about here on lymenet some years ago-about mag supplements NOT stopping the twitching.
butt twitchers unite!
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
Dear Julie, Thanks soooo much for injecting a little bit of levity into my day. I laughed out loud when I read your butt twitching comment. You rock. Be well... Peace, Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
In all parts of the body I can get twitchesm but the preferred site is definitely the bottoms of my feet.
I have been taking mag tab SE from Niche for about 4 monthgs i do not think it helps the twitching. It has improved lately though but i tend to atribute this to general recent improvements on abx.
posted
I've also been getting these sort of dull burning muscle cramps in or around some of the areas I get twitching in. Anyone else get that?
Also, originally I mostly got single twitches here or sort of rhytmic pulsations in a muscle. I still get those but now I am getting these creepy little flurries of activity where the muscle feels almost like it's crawling/undulating under my skin. Anyone else get that? It is REALLY a wierd sensation. They seem to only last a minute or so. But they are really creepy.
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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Just Julie
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posted
quote:Originally posted by Kenny from PA: I've also been getting these sort of dull burning muscle cramps in or around some of the areas I get twitching in. Anyone else get that?
Also, originally I mostly got single twitches here or sort of rhytmic pulsations in a muscle. I still get those but now I am getting these creepy little flurries of activity where the muscle feels almost like it's crawling/undulating under my skin. Anyone else get that? It is REALLY a wierd sensation. They seem to only last a minute or so. But they are really creepy.
Yes, Kenny, I do remember getting those undulating type sensations under my skin, but I just lumped that under "twitching in general". I didn't want to pay too close attention to the minutae descriptions of the twitching, because gosh darn it, it was and is my most disturbing symptom! I think that is because w/ my medical background, my subconscious still goes back to "could this really be ALS or MS?".
Stupid, I know, but the fasculations are so upsetting to me, if I let myself think too hard on them. Took me some time, probably YEARS to be able to half ignore them, or put them in the background of my mind, so to speak.
But once I did that, I was able to relax a bit with them always being around.
Now, I've got 5+ years under my belt with having them, and I can clearly see that I am not disabled with MS, or haven't died in the 5 yr time frame that most people with ALS get with their diagnosis.
And, I"m truly thankful for those months, I think about 6, of not having any at all. I can really put them in the background now, only having muscles pop up occasionally with the twitching, and no butt twitching yet in this round of them!
Just wanted to add that I've had them all-every variety of them, except for true myoclonus-AND FOR THAT I'M TRULY THANKFUL! Because when I read the descriptions of that, man, I doubt I would be able to keep on going.
I got my Ativan, I got my Restoril, and those are the 2 drugs that help me if/when I have twitching that continues on beyond a sporatic, bam, bam, bam, like a pinball binging from muscle to muscle.
I'm fairly desciplined too, about taking the Ativan, or Restoril, because addiction (even pyschological) is not something I want to let myself fall into.
But if you need the drug, I say, take the drug. We're not a bunch of stoners here, or zombies last time I checked!
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
Oh yah. I get all this stuff too. Grin and bear it. I get small-muscle cramps too. Actually, its more like muscle tightening of the small muscles which lasts a few hours. At the moment, I have a cramp in my face just under my cheekbone...been there an hour or so. Muscles have twitched on me in places that I didn't even know I have muscles ....hmmm... I better just leave it at that.
- Mike
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
quote:Originally posted by quic: Oh yah. I get all this stuff too. Grin and bear it. I get small-muscle cramps too. Actually, its more like muscle tightening of the small muscles which lasts a few hours. At the moment, I have a cramp in my face just under my cheekbone...been there an hour or so. Muscles have twitched on me in places that I didn't even know I have muscles ....hmmm... I better just leave it at that.
- Mike
Mike, I believe I have some variation of the muscle cramp you describe, in that, I think mine are more muscle tightening---my best example is if I'm sitting on the top stair of my garage stairway to put my tennis shoes on in the morning, and I'm bending over to tie the laces, I get a very very sudden "muscle tightening" cramp like sensation.
I IMMEDIATELY, because it's very alarming and also a bit painful sit up straight. I do not jump up to a stand, but sit upright, with my back straight, and the stomach muscle "tightening" goes away immediately.
To me, a muscle cramp is something that you have to work to get rid of, like if you had a calf muscle cramp, or foot/toe cramp, and you have to stretch that muscle group out to get it to go away, and it often takes a few minutes to do.
I don't have any other muscle group that does this "tightening" thing, like my stomach muscles do.
I'm glad I don't, but I think that the tightening, or cramping that some people feel is also a close relative to the twitching thing the muscles do-and I bet it's either neurological (because magnesium supps of any kind did not make my twitching go away, or even subside) or there is really a magnesium relationship to the twitching, but oral mag supps do not do anything to alleviate the twitches.
I read somewhere (like I could even remember where now, oy vey)that only mag injections work on the twitching. That I never tried, because my LLMD, in the years of seeing him monthly, and hearing about my twitching, never suggested I try this.
I don't know why, but he was not much into supplementation of any kind. I wonder if his LLNP that works out of his office would be more amenable to this route? the mag injection route?
Since I no longer go in for monthly visits, and really haven't been in to see him in well over a year, I am not feeling much up to seeing him just to try this, or get an answer to if this route even works for people. He charges an arm and a leg, not only for a in person visit, but phone consults/quesitons as well, and now there isn't even a live person answering his phone, you have to leave a message, and I doubt that this type question would get much of a response, other than to say, "we need you to come in for a visit" and at 400-650 a pop, I can't do that right now.
Well, that's it for now, I'm sleepy from some benadryl, and sure wish I could drop off for a nap to satisfy my benadryl cocktail/hangover.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
Very common in Lyme! I've had them for a few years, all over my body including my tongue. Sometimes I get hotspots in certain spots from over use or if I have weakness when I am herxing I'll seem to have more twitching in that limb which is also a sign of ALS so it's scary, but it's a temporary thing these hotspots. They can last weeks then let up, then with a herx they get worse or if I over use my muscles. I feel them a lot when I am laying down at night but probably bc I am laying still and noticing it more.
Bottom line - don't worry about it a bit. Totally common with Lyme and it won't hurt you. I've learned to completely ignore it and eventually it gets better. Might come back on and off but it certainly doesn't hurt you. The only thing is you may want to have your mineral levels checked like magnesium.
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