Calves twitching, burning, tingling and sore 24/7

Hello all,
Thanks to some members I finally went to a LLMD. For about 4 months now I have been getting the symptoms mentioned above. Some days are worst than others and it makes me so nervous that I have trouble sleeping. I only notice them when I am still (sitting, in bed, etc). Don't notice when I am walking, exercising. Has anyone here had these symptoms before? 80% only in my calves, but I also get tingling and twitching in other parts. I tried magnesium, Vit D, Vit B, but no relief. Thanks for your help.

I had the twitching (fasciculations) in many areas of my body, also burning nerve pain - mostly in my thoracic back area and left arm, but sometimes on my shins as well.

I still have the burning nerve pain most days, but the twitching is pretty much gone since treatment.

I am sore a lot...most days I have pain - not 24/7 but enough that it's always on my mind.

So treatment is what helped me.

Are you treating lyme currently? What are you taking?

Girlie said...
I had the twitching (fasciculations) in many areas of my body, also burning nerve pain - mostly in my thoracic back area and left arm, but sometimes on my shins as well.

I still have the burning nerve pain most days, but the twitching is pretty much gone since treatment.

I am sore a lot...most days I have pain - not 24/7 but enough that it's always on my mind.

So treatment is what helped me.

Are you treating lyme currently? What are you taking?

My doc just prescribed some antibiotics, will pick them up tomorrow. He's putting me on two different meds, don't know off the top of my head. Just hope they will help. Thanks for the response.

Welcome to my world. I've had a litany of symptoms but these have by far been the worst and most un-relenting.

I have had 24x7 muscle twitching, cramping, nerve pain and 'heavy' feeling legs for almost 2 years now. It's about 75% in my left calf/left foot and 25% all over the rest of my body: feet, legs, arms, hands, neck, face, back, chest, intestines, buttocks, anus, roof of mouth - no place is off limits apparently. Literally every single muscle, even places you didn't know you have muscles have twitched at some point. It's disturbing and they go from painful to annoying to somewhat ticklish. They also amp up on some days to the point where I can't take it and some days I feel comfortable and don't notice them as much. They seem to travel to an area and then move on after a period of time, except in my left leg/foot which is nearly constant.

I've been on every med you can imagine over the last 15 months or so and they have improved about 75% but have not gone away.

I wish you the best but don't get frustrated when a round of meds doesn't help at all. I keep asking my LL if he thinks it's perm. nerve damage or active infection and she's under the impression that it's active infection.

Good luck and please let me know what works (if anything)!!

Sorry to hear that oddity. I feel like I'm in the same boat only slightly less progressed since I started a pretty heavy series of different meds over the last 15 months. I do feel like the progression has slowed but that the spread of it hasn't even though it's gotten better if that makes sense. Initially this was only in my left leg/foot. Then spread all over and got to a tipping point where I was losing my mind. Now they have gotten better (in duration/pain level) but I still feel like they have spread to other areas they weren't in before, such as certain places in my face, neck, back. It's just weird.

I was prescribed gabapentin/lyrica at some point by a neuro before starting abx and it wasn't helping much anyway.

I refuse to take anything that 'masks' the pain now, besides marijuana before bed - it relaxes me and I sleep like a baby. Luckily I'm in MA and it's completely legal, even for recreational purposes. I want to heal it, not mask it.

TymeToKillLyme said...
Welcome to my world. I've had a litany of symptoms but these have by far been the worst and most un-relenting.

I have had 24x7 muscle twitching, cramping, nerve pain and 'heavy' feeling legs for almost 2 years now. It's about 75% in my left calf/left foot and 25% all over the rest of my body: feet, legs, arms, hands, neck, face, back, chest, intestines, buttocks, anus, roof of mouth - no place is off limits apparently. Literally every single muscle, even places you didn't know you have muscles have twitched at some point. It's disturbing and they go from painful to annoying to somewhat ticklish. They also amp up on some days to the point where I can't take it and some days I feel comfortable and don't notice them as much. They seem to travel to an area and then move on after a period of time, except in my left leg/foot which is nearly constant.

I've been on every med you can imagine over the last 15 months or so and they have improved about 75% but have not gone away.

I wish you the best but don't get frustrated when a round of meds doesn't help at all. I keep asking my LL if he thinks it's perm. nerve damage or active infection and she's under the impression that it's active infection.

Good luck and please let me know what works (if anything)!!

Thank you. I have noticed that sometimes it's worse than others. I actually started with full body twitching about 2 yrs ago. Now it's mostly gone except for my calves, along with the burning, pain, buzzing and tingly feeling. Also anxiety makes it much worse. Will keep this forum updated on my progress.

TymeToKillLyme said...
Sorry to hear that oddity. I feel like I'm in the same boat only slightly less progressed since I started a pretty heavy series of different meds over the last 15 months. I do feel like the progression has slowed but that the spread of it hasn't even though it's gotten better if that makes sense. Initially this was only in my left leg/foot. Then spread all over and got to a tipping point where I was losing my mind. Now they have gotten better (in duration/pain level) but I still feel like they have spread to other areas they weren't in before, such as certain places in my face, neck, back. It's just weird.

I was prescribed gabapentin/lyrica at some point by a neuro before starting abx and it wasn't helping much anyway.

I refuse to take anything that 'masks' the pain now, besides marijuana before bed - it relaxes me and I sleep like a baby. Luckily I'm in MA and it's completely legal, even for recreational purposes. I want to heal it, not mask it.

I notice when I take anxiety medication it helps somewhat. I guess some of it comes from anxiety and the rest from Lyme. Why are some days better than others, and different symptoms coming and going. Doc thinks it's Bart and some other infection. Will be getting blood work next week and see what type of infection he will be treating.

KB69 said...
I have all of those neuro symptoms as well. I had the tingling right away, but the twitches (also in my calves) came later. I also have burning in the soles of my feet and palms of hands, and sometimes even my entire scalp feels ablaze.

I have been treating Babesia and making a lot of progress with that, but it's amplified my neuro symtpoms, which my LLMD believes are Bart and Lyme. I started treating Lyme and made progress with that, but then co-infections hit.

When we have Bart and Lyme our neuro symptoms are through the roof. You are not alone, and should find relief when your LLMD places you on the right medications.

And, please don't let your MD solely determine treatment based on diagnostic tests. My test for Babesia was negative, but I had all of the symptoms. And, it's treatment for that co-infection that's really helped me turn a corner. A good LLMD may test, but will make sure s/he is not ignoring obvious symptoms.

Hang in there!

Thank you. I've had 3 test for Lyme and they all came back negative. I told my primary doc and neuro about hiking in a Lyme area and seeing a warning sign about ticks. And 3 days later waking up with a bullseye rash on my inner forearm. The symptoms started about 6-7 yrs later. First with really bad brain fog, dizziness, head pressure, detachment, etc. I guess I find reassurance in knowing I have Lyme and not knowing what the heck is going on.

After 20 years of calve tightness, trying to "Fix" them again for the last month, and its finally working. The muscles were somewhat stuck to the bone, stuck to each other too which was pulling /pinching nerves. This is two years after ABX.

Before ABX, Phys Therapy did not work. Then ABX stopped the progression, then I was able to rebuild. I was pretty aggressive with muscle restructuring on top of triggerpoint release, active release then weights (calve raises). Hurt at first, now they are getting stronger without pain.

Post Edited (astroman) : 7/13/2017 12:05:20 PM (GMT-6)

astroman said...
After 20 years of calve tightness, trying to "Fix" them again for the last month, and its finally working. The muscles were somewhat stuck to the bone, stuck to each other too which was pulling /pinching nerves. This is two years after ABX.

Before ABX, Phys Therapy did not work. Then ABX stopped the progression, then I was able to rebuild. I was pretty aggressive with muscle restructuring on top of triggerpoint release, active release then weights (calve raises). Hurt at first, now they are getting stronger without pain.

Definitely, I go to the gym often and every time I go I always make time to work on my calves and legs. Make sure the strength is still there. I helps and I feel better afterwards.

Girlie said...

serruyo said...

Girlie said...
Will you update us when you get the meds?

Will do, just started one dose. Doc wants to make sure I can tolerate the medication. Will keep you guys posted.

What antibiotic are you taking? (if you want to share with us)

Azithromycin and Rifampin. Right now taking Azi first then will start Rif after. Told doc I had terrible nausea before, so he wants me to start slow.

serruyo,

These are common symptoms. And yes it seems to only happen when you are idle and resting. As I'm laying here typing this my right thigh twitched. You get "use to" it.

Don't be nervous in the sense that it is "common".

The things you listed treat the symptoms not the root cause. But it sounds like you are taking ABX so you are addressing the root cause of the issue so that's good.

I use to let it freak me out when I first got lyme. But it's going to happen and continue to happen until you are in remission, so don't let it get to you. Just stay on your treatments and supplements and detoxing and learn how to "ignore" it for the most part.

If you are watching tv or relaxing reading a book and it happens just keep doing what you are doing.

dacarte3 said...
serruyo,

These are common symptoms. And yes it seems to only happen when you are idle and resting. As I'm laying here typing this my right thigh twitched. You get "use to" it.

Don't be nervous in the sense that it is "common".

The things you listed treat the symptoms not the root cause. But it sounds like you are taking ABX so you are addressing the root cause of the issue so that's good.

I use to let it freak me out when I first got lyme. But it's going to happen and continue to happen until you are in remission, so don't let it get to you. Just stay on your treatments and supplements and detoxing and learn how to "ignore" it for the most part.

If you are watching tv or relaxing reading a book and it happens just keep doing what you are doing.

Thanks for the response. I do notice when I'm busy or doing other activities I don't feel the symptoms. I know anxiety definitely makes the problems worse. Also exercising makes me feel like Superman, I know my body can and will defeat this infection.