posted
Recently finally diagnosed with neuroborreliosis and have had it for several years now.
I was qurious if anybody has suffered any of these weird muscle symptoms.
I have these constant muscle twitches and spasms. Its like they never go away.
They happen in every muscle and nerve in my body.
It seems like the more I excersize or move a muscle the more it tends to twitch n spasm. This is very bothersome to me.
Sometimes at night when I am lying in bed I can sit there and feel these damn twitches everywhere.
I also notice that my muscles are slowly getting smaller. Like I am losing weight in muscle tone.
Another weird symptom is that I cannot completely control my muscles, kinda like I have the shakes a little bit or tremors. These symptoms have never gotten any worse sense I have been ill, but I have noticed that the loss of nerve,muscle control does get worse when I get the extreme dizziness/brainfog attacks .
Does anybody else deal with these symptoms? I am soo sick of being scared. I hate this disease
Posts: 15 | From Tulsa | Registered: Oct 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Yep had all that after about 5 years of abx's I dont have tremors or twitching or hand shaking or numbness or shooting nerve pain. I have had this since 1988 treatment started in 2003 doing better.Brainfogs gone mostly still get ocasional joint pain achey but iam on minocin it seems to bring that out in me.
-------------------- 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.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YES had ALL that ALL GONE ALL GONE*)!*)!! With ABX!!!
-------------------- 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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posted
I had big muscle loss on my right side. And tons of twitching, not just at night, mostly in my lower back and trunk area.
It has almost gone away, after 2 years of constant abx.
gambler
Posts: 243 | From chicago | Registered: Dec 2005
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Yes, have been in treatmetn over a year and still have this. This is my worst symptom and makes it hard, really hard to work. Or actually do anything normal. I feel like I cant hold on to anything, even the steering wheel.
And if I do anything physical for too long my muscles twitch and then get numb. I cant even walk afterwards and my arms and hands shake really bad but feel almost numb. iTs so frustrating trying to explain to other people whats wrong with me.
posted
Have you been tested for Babesia also? This is another tickborne infection that many people with Lyme also have.
The fact that the tremors are worse when you have attacks of dizziness makes me think Babesia could be the culprit instead of Lyme.
According to hubby's LLMD Bartonella can also cause tremors/myoclonus.
Welcome to LymeNet!!!
I am glad you finally have a diagnosis. Now it is up to you to read all you can to help yourself on this long journey. If you have already been sick for several years it will most likely take 2 - 3 years of treatment to get you well.
Ask all the questions you want. We are here to help.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Yep, checkmark beside muscle spasms for me as well. They still come and go, but are a lot better with abx treatment, esp. ceftriaxone and flagyl. I relapsed on both, but staying continuously on something seems to help.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Long time twitcher here. I do not think of them so much as "muscle spasms" more as true twitching. Mine came on in 2000, after 3 very psychologically upsetting events. I considered this symptom of muscle twitching to be the onset of my Lyme disease as I knew it.
I was on abx for about 3-3.5 yrs total. Constant, no breaks. Full strength, no ramping up, or taking periodic abx breaks.
After that time, my muscle twitching was still there, so I asked my LLMD if I should consider being "all done" for the time being. I was tired of taking abx and dealing with side effects. I also had both my sons on abx for their lyme at the same time as myself, so it was a true 3 ring circus!
As we all stopped taking abx, I noticed that my muscle twitching began to subside in occurance, and to some degree, intensity.
After about a year of no abx, I noticed I'd have periods of maybe, 2 weeks straight, with NO twitching. I was so excited to finally notice that. What happened at the same time, was during those periods of NO muscle twitching, if I had a bout of stress related stuff come up, where I felt my adrenaline really kick in, I would notice my muscles start to twitch. I was SO DISHEARTENED to notice this happen. It almost broke my heart.
When you have periods where the twitching does go away, only to have it come back, you can get pretty depressed. It is so not normal, and very unsettling. I would also have periods where my muscles would twitch in a certain area (upper thigh, stomach area, thumb) for a week, to 3 weeks at a stretch--same muscle, constant, non-stop, and that was pretty upsetting to have happen. What I was always so thankful for, was when I would notice that that muscle group of twitching would just disappear! It was like a gift, Christmas morning type joy. . .
I have to say that I did try magnesium in various forms, with no results.
I have lost track of how long it's been since I have noticed a muscle twitch. Pretty long stretch of time, and since I am trying not to dwell on symptoms anymore, I can't pinpoint exactly how long it's been since I have had a twitch come up on me.
It is pretty depressing, I must say, when you realize that taking various abx for long periods of time does not make this symptom "go away". Only those of us who've had this particular brand of hell will know what I mean when I say this.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, seems fairly common with lyme, especially if you end up with fibromyalgia like so many of us.
I've been on aggresive abx treatment for 16 months and still have a lot of muscle problems. At times, the knots and cramps are worse than when I started treatment.
As cave said, magnesium helps. Be careful with calcium. It makes my muscle fasciculations so much worse. I've had hypercalcemia a few times but I don't know if others with lyme are predisposed to that problem or not. I suspect each of us have to find out how to balance our minerals for optimum results.
I've found BCAA's (Branched Chain Amino Acids) helpful to some degree, especially with muscle knots and the severe cramping. I also take magnesium and various minerals.
Hope you get over them quickly. I expect it will take some time for me since I've been sick for a very long time.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Interesting. I have fibromyalgia, with all the muscle pain/spasm biz, but no twitching.
To follow up on what Terry was discussing about minerals, here's one idea: to check out the idea of trying a multi-mineral product, like the liquid Trace Minerals type, to see if absorbing 70 seabed minerals might help.
Posts: 13116 | From San Francisco | Registered: May 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I found BCAA's via muscle testing and don't know if they will help others here but apparently they have been shown to be useful for muscle cramping.
I think that Valine is important - it helps muscle metabolism.
I got an error when I tried to post the whole article so I'm only posting the part that is important.
These data suggest that BCAA supplements in the late evening are of benefit to malnourished patients with hepatic cirrhosis. Relief of muscle cramping is an important outcome of BCAA supplements in the late evening.
I don't have hepatic cirrhosis and I don't think I am malnourished or at least you wouldn't think so by looking at me. LOL
Look around for other info about BCAA and muscle cramping. They work well for me. I keep the dose low and only increase it temporarily if I get cramping.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
My very first symptom was muscle weakness in my legs....felt like my legs were going to give way with me when I walked.
Then the twitches started. I got them at random and all over, but the worst seemed to be the bottom of my feet, where I also had burning.
It was also worse in the evenings. I could sit and watch the bottoms of my feet "dance". Darned annoying!
I will say that my twitches and burning has slowly gotten better. I've been on abx constantly since 9/2006.
They drastically got better when I quit taking Remeron (an anti-depressant). Hmm, makes me wonder!
I take both calcium and magnesium...just one pill each per day. I do think the magnesium helps and for me I haven't noticed the calcium making it any worse.
-------------------- Susan T. Posts: 28 | From Austin, TX | Registered: Oct 2006
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posted
I forgot to add that I also get the muscle "tremors". For me, tremor is really too strong a description, because you can't see any visible movement. It's more of an internal feeling. For me, the description "internal vibration" seems to fit better.
I get it mostly in my arms, chest area,and around my mouth. I notice it most when I'm in bed trying to go to sleep, or when I wake up from a sound sleep.
-------------------- Susan T. Posts: 28 | From Austin, TX | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
QUOTE Did your muscles or muscle tone come back after treatment and after the twitching cleared up? Does the muscle tone come back? UNQUOTE
YES YES BUT for me it took a whole year of continued effort and progress to get near normal again, to be able to walk a block easily for instance. I had become SO WEAK and had lost muscle/tone completely... I was weaker than a kitten.
It took a full year of muscle training to be able to get near normal and then I kept on until I was in the best shape of my life, not one extra ounce on me, ALL muscle*)!!! used to run 8 flights of stairs at Seacliff 3 times a week a few tims in a row!!! I was in GREAT shape, better than ever before in my life!!!
I htink I was so intent on getting that way BECAUSE I had been so debilitated. Then I had another baby and have not gotten back there yet but that's okay!*)!)! Take care, Sincerely, Sarah
-------------------- 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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posted
YEP, Now also back to very severe RLS begins 2am.
I have not had wink sleep in 2 days. YAWN, tried all my tricks but last few weeks been that way then I crash. Just when I thought was going to sleep at decent hr. for change...DANG
Pain,nausea/stinging & stabbing, neuropathy +++/ does not help....sigh
Since most have dopamine problem. As recently finding RLS is linked to milder form Parkinson`s. I said that yrs. back..
It may be taking that branch of tree where your neurotransmitters are a flare.
Sure not easy?? Are you in 24/7 pain???
Remember Michael Fox, had Lyme 1st..??? It just got into brain where it can.
No diff. than 100 diff. types cancer, we all carry cancer cells. Our Lyme has also many what is called co-infections. Soooo many side effects when settles in brain & messes with the neurons,neurotransmitters,etc. They say there over 100neurotransmitters.
Few found not that long ago, med. prof. has long way to go, depending on how chronic +++ all other variables.
Good Luck, Hang in there talk if you need to... Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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