Calves twitching, burning, tingling and sore 24/7

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serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/7/2017 9:19 PM (GMT -6)   
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.

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3827
   Posted 7/7/2017 10:12 PM (GMT -6)   
I have had that, plus very painful muscle fasciculations. I have gotten some relief from them since starting Potassium, but the Potassium is a co-script I take with Lasix for Congestive heart failure.

Have you tried bananas, other foods rich in potassium or otc Potassium supplement?
Research taking Potassium to make sure you aren't neglecting a companion nutrient for best absorption.
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme (false?)positive '92,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, CHF, osteoarthritis. No LLMD. Used Doxy, Zithro and Flagyl s2015-16, mono each time. Useless. Current treatment JK, Milk Thistle, kudzu for head fullness/pressure, avena sativa for nerves, Lion's mane, Green Tea caps, Bragg's ACV, lemon water, chartab

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32611
   Posted 7/7/2017 10:31 PM (GMT -6)   
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?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/8/2017 12:00 AM (GMT -6)   
julymorning said...
I have had that, plus very painful muscle fasciculations. I have gotten some relief from them since starting Potassium, but the Potassium is a co-script I take with Lasix for Congestive heart failure.

Have you tried bananas, other foods rich in potassium or otc Potassium supplement?
Research taking Potassium to make sure you aren't neglecting a companion nutrient for best absorption.


Thanks for the reply, I actually just ordered some potassium supplements and started eating more potassium rich foods. Hopefully this will help.

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/8/2017 12:05 AM (GMT -6)   
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.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32611
   Posted 7/8/2017 12:13 AM (GMT -6)   
Will you update us when you get the meds?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

TymeToKillLyme
Regular Member


Date Joined May 2016
Total Posts : 33
   Posted 7/12/2017 11:59 AM (GMT -6)   
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)!!

oddity
Regular Member


Date Joined Dec 2015
Total Posts : 146
   Posted 7/12/2017 12:11 PM (GMT -6)   
My symptoms were/are very similar to yours. The twitching and crawling feeling in my calves was the first sign that something was seriously wrong and that this was not just in my head as a few of the "MD's" I saw tried to tell me. I am going on two years now of the calf twitching. It has slowed down somewhat since I have started treatment. It makes it very hard to relax without being on some type of medication. Gabapentin helps along with vaping medical marijuana right before bed.

It's good you have found a doc to start treating you now. I waited to long to see an LLMD and my issues have progressed into Small Fiber Neuropathy which is probably permanent. DON'T MAKE THIS MISTAKE!

One neurologist prescribed me Klonopin which worked great, but that was right when this nightmare started and I was against medicating. Now I will try anything to get some relief.

TymeToKillLyme
Regular Member


Date Joined May 2016
Total Posts : 33
   Posted 7/12/2017 12:41 PM (GMT -6)   
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.

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/12/2017 4:27 PM (GMT -6)   
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.

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/12/2017 4:34 PM (GMT -6)   
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.

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/12/2017 4:41 PM (GMT -6)   
oddity said...
My symptoms were/are very similar to yours. The twitching and crawling feeling in my calves was the first sign that something was seriously wrong and that this was not just in my head as a few of the "MD's" I saw tried to tell me. I am going on two years now of the calf twitching. It has slowed down somewhat since I have started treatment. It makes it very hard to relax without being on some type of medication. Gabapentin helps along with vaping medical marijuana right before bed.

It's good you have found a doc to start treating you now. I waited to long to see an LLMD and my issues have progressed into Small Fiber Neuropathy which is probably permanent. DON'T MAKE THIS MISTAKE!

One neurologist prescribed me Klonopin which worked great, but that was right when this nightmare started and I was against medicating. Now I will try anything to get some relief.


Thanks for the advice. It is really hard trying to relax when as soon as I sit or stay still the twitching, crawling sensation begins. Don't know why some days it's worse than others. Worse when I'm anxious, and the only relief comes with me having to constantly move my legs, feet.

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/12/2017 4:48 PM (GMT -6)   
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
Regular Member


Date Joined Jan 2017
Total Posts : 236
   Posted 7/12/2017 5:58 PM (GMT -6)   
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!

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/12/2017 8:15 PM (GMT -6)   
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.

oddity
Regular Member


Date Joined Dec 2015
Total Posts : 146
   Posted 7/12/2017 9:14 PM (GMT -6)   
Lyme and Bart for me. I've come a long way in the two years since this started. It just takes time to figure out what works and to accept the fact that one may never be the way they were.
I hate masking the symptoms with neurontin, but one can only grin and bare it for so long with the pain sfn brings to the table.
We will ll be stronger once we make it through this.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 7/13/2017 8:39 AM (GMT -6)   
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)


serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/15/2017 11:25 AM (GMT -6)   
oddity said...
Lyme and Bart for me. I've come a long way in the two years since this started. It just takes time to figure out what works and to accept the fact that one may never be the way they were.
I hate masking the symptoms with neurontin, but one can only grin and bare it for so long with the pain sfn brings to the table.
We will ll be stronger once we make it through this.



Agree 100%. Our bodies are made to heal. I have noticed eating healthy (avoiding sugar, processed foods, dairy and gluten) help with the symptoms. Also light to moderate exercise.

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/15/2017 11:29 AM (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
Forum Moderator


Date Joined May 2014
Total Posts : 32611
   Posted 7/15/2017 11:31 AM (GMT -6)   
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)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/16/2017 1:27 PM (GMT -6)   
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.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32611
   Posted 7/16/2017 1:40 PM (GMT -6)   
Your Dr must think you have Bartonella.

What dose of riffy were you prescribed?

Good to start with the Zithromax first for a week or two (or even longer)
You might want to consider starting the Riffy at half dose (300 mg) once daily - for a few weeks before going to the 600 mg daily dose.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 7/16/2017 3:01 PM (GMT -6)   
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.
Positive for Lyme (Igenex), Ehrlichia (Igenex), and Mycoplasma (Labcorp)

ABX Treatment: 03/2016-04/2016
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016

95% Symptom Free. Now repairing the body: Thyroid health and physical therapy

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/17/2017 10:20 AM (GMT -6)   
Girlie said...
Your Dr must think you have Bartonella.

What dose of riffy were you prescribed?

Good to start with the Zithromax first for a week or two (or even longer)
You might want to consider starting the Riffy at half dose (300 mg) once daily - for a few weeks before going to the 600 mg daily dose.


Yeah that's what he said. Riffy 300mg twice a day. But I might start with one since already getting stomach issues.

serruyo
Regular Member


Date Joined Jun 2017
Total Posts : 21
   Posted 7/17/2017 10:27 AM (GMT -6)   
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.
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