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Internal Tremors


mmg21

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mmg21 Newbie

I was dx with celiac disease a year ago by biopsy and blood test.  I have been very faithful with eating gluten-free.  And was doing really well until 4 months ago when I started getting "internal tremors" It feels like my body is vibrating but nothing can be seen on the outside.  I've been to the Dr and had a MRI of the brain and spine and everything came back normal. The Dr has tried different medications and they just make me feel  bad and do not help the tremors. So now I'm wondering if this is related to  my celiac and if there is something I'm missing.  Could shampoo, body wash, clothes detergent do this? I use Head & Shoulders, Olay body wash and Arm & Hammer clothes detergent. Maybe after using day after day it has gotten into my system? Or maybe a vitamin or mineral deficiency? I would be grateful for any ideas or thoughts.

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greenbeanie Enthusiast

Has your magnesium level been checked? I had this kind of internal shaky feeling, and also hand cramps, for years. Another forum member recommended magnesium, and it made all the difference in the world. Come to find out, a blood test from when I was in the hospital years ago had showed magnesium deficiency, and the doctor hadn't even told me about it. I only found out because I requested copies of my all my old lab records because I was trying to figure other stuff out. After six months of supplements my level was back into the normal range, and I cut the supplements back to every few days instead of daily. Whenever I try to stop it totally, though, the shaky feeling comes back in less than a week.

Edited to add: Oh, I see that this was your first post. Welcome to the forum!

Edited by greenbeanie
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across Contributor

Thank you, thank you, thank you for asking about this! I have these, too, and they are very distressing! Magnesium and sublingual B-12 seem to help with this for me. I also tested low in vitamin D, and it's possible that my supplementation with that has helped, as well.

 

Just my experience...hope you find something in it helpful.

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GFAnnie Explorer

I have no idea idea if celiac can cause this, but my husband experienced the same thing you describe when tapering off of his antidepressant, and also a benzodiazepine.  Any chance you have discontinued or starting taking these in the past year?  I'm sure there are other reasons, but I thought I'd comment since he experinced the exact same sensation, and doctors are maybe even more clueless to these a/d side effects than they are about celiac!

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mmg21 Newbie

Thank you so much for everyones response.  I will definitely have my Dr test for magnesium.  What kind of magnesium do you take?  There are so many different kinds. And no I have not been on any kind of medication at all. My aunt is seeing an accupuncturist and happened to ask her about my tremors and she seemed to think it had to do with the celiac and that I should think about seeing a naturepathic Dr.  This will probably be my next step if the magnesium doesn't help.  I figure it's not going to hurt me to take it before getting a blood test :).

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across Contributor

I take 250 mg of magnesium oxide daily, although I probably need to increase this, as I've been having a little more trouble with the tremor feeling lately.

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greenbeanie Enthusiast

The one I have now is a cal-mag-zinc vitamin with 500mg of magnesium oxide chelate. I don't know much about the ins and outs of different kinds, but I've tried several different magnesium supplements and they've all seemed to help.

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  • 2 years later...
Buckarett Newbie

Hi,

I am new to the group. Diagnosed Celiacs in August of this year.   I have had tremors or vibrations. It really kind of freaked me out, but everything seems to lately. I have. Upped up magnesium no help, b vit too, no help. My acupuncturist, Dr and natural chiropractor think it is stress. I am ready for it to stop. My anxiety has gone through the roof. Things that never bothered me do now. Add in allot of stressful situations lately too. 

I am just hoping they go away on their own. 

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ironictruth Proficient
On 6/25/2014 at 0:47 PM, mmg21 said:

I was dx with celiac disease a year ago by biopsy and blood test.  I have been very faithful with eating gluten-free.  And was doing really well until 4 months ago when I started getting "internal tremors" It feels like my body is vibrating but nothing can be seen on the outside.  I've been to the Dr and had a MRI of the brain and spine and everything came back normal. The Dr has tried different medications and they just make me feel  bad and do not help the tremors. So now I'm wondering if this is related to  my celiac and if there is something I'm missing.  Could shampoo, body wash, clothes detergent do this? I use Head & Shoulders, Olay body wash and Arm & Hammer clothes detergent. Maybe after using day after day it has gotten into my system? Or maybe a vitamin or mineral deficiency? I would be grateful for any ideas or thoughts.

I wish I had the answer. My left leg has been hurting and is now vibrating. I of course worry about a clot, but have a hunch it us nerve related. Is it your extremeties? If I find anything out I will keep you posted. I already take Mag too. 

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cristiana Veteran

Hi Buckarett

Can you describe where these tremors/vibrations are? 

Also, do you know what your B12 levels are? Sometimes a clinic will say you have normal B12 but by other countries' standards they would not be considered normal. It could be you are still deficient.

That said, I would say it is just possible it is connected to anxiety.

I had severe anxiety at the time of my diagnosis in April 2013 which persisted for some time.  The anxiety was due to deficiences, I believe, of B12 and iron, and once these were remedied I felt a whole lot better for a while.  But anxiety is an odd thing, it almost seems to me that once you have learned it and you think you have dealt with it it can come back in another guise.   In my case I became very attuned to any new symptoms  - whether it was joint pain, tingling, a feeling of buzzing, whatever it was, it was greatly magnified.  These are probably all things that 'normal' people get from time to time and wouldn't pay any attention to but I really focussed on them.  They seemd to get worse and worse.  Anyway, I took magnesium for some months, some good quality B12 sublinguals, and to be honest I really can't exactly recall why but it did all wear off.

 I thought I had left all this behind but in August this year when on holiday I had time to think about a deadline that I have coming up for a project.  I think possibly I got glutened, too,  because we ate out a lot and my legs and arms were fizzing a lot.   I then found  myself really focussing on these symptoms and they just got worse and worse.   And I then got a new one - it felt like there was a cell phone vibrating in my neck at one point!

Again, when the anxiety wore off, so did the vibrating.  This site obviously can't take the place of medical tests etc but at least in my case I can say that stress has been a factor.

Also, if you are able to get out and exercise that is a great way to deal with any adrenaline that might be in your system, making things worse.

 

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cristiana Veteran
9 minutes ago, ironictruth said:

I wish I had the answer. My left leg has been hurting and is now vibrating. I of course worry about a clot, but have a hunch it us nerve related. Is it your extremeties? If I find anything out I will keep you posted. I already take Mag too. 

Hi Ironictruth

I'm just wondering if this is nerve impingement?  Any pain in your hip/back area?

 

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cstark Enthusiast

What people have describing is seems to be happening my left leg.  It's almost a pulsating buzz and it varies in severity.  It is such a weird feeling.  This has been fairly recent.  Like maybe three to four weeks.

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ironictruth Proficient

Lower back pain in the am when I first get up. And I did notice some in the left hip today. Thinking about ditching the heels for awhile to see if that helps. 

Also my left leg. Dealt with a ton of ulnar nerve issues on that side as well. 

I bruised the left leg pretty badly awhile ago, but also noticed some pain back when I was running (stopped that in July). 

Chiro doc is on my list next. 

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cristiana Veteran

Ironictruth, I think you could be onto something.  Get him/her to check your sacroiliac joints too, they cause all sorts of referred pain.

Cstark - I have had this sort of pulsating buzzing in my face in the past, it waxes and wanes.  Doc thinks I have mild neuralgia.  Triggers seem to be poor neck position and also cold wind on my face. Caffeine too.  It plays up when I am anxious.  I also get buzzing in my left leg that seems to come and go. All very odd.  I think it could all be nerve damage caused by years of undiagnosed celiac disease.  

When it strikes I try to eliminate the triggers. Also, I have found taking a good vitamin B supplement helpful, as well as zinc and vitamin C.

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ironictruth Proficient
On 11/10/2016 at 7:18 PM, cristiana said:

Ironictruth, I think you could be onto something.  Get him/her to check your sacroiliac joints too, they cause all sorts of referred pain.

Cstark - I have had this sort of pulsating buzzing in my face in the past, it waxes and wanes.  Doc thinks I have mild neuralgia.  Triggers seem to be poor neck position and also cold wind on my face. Caffeine too.  It plays up when I am anxious.  I also get buzzing in my left leg that seems to come and go. All very odd.  I think it could all be nerve damage caused by years of undiagnosed celiac disease.  

When it strikes I try to eliminate the triggers. Also, I have found taking a good vitamin B supplement helpful, as well as zinc and vitamin C.

I will look this up. When the ulnar nerve was happening I found some exercises on line that helped. Would be nice tobget my leg back!

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cristiana Veteran
12 hours ago, ironictruth said:

I will look this up. When the ulnar nerve was happening I found some exercises on line that helped. Would be nice tobget my leg back!

It is interesting you have ulnar nerve issues.  Me too, left and right.  Starting really playing up just before diagnosis - I was always waking up with numb fingers, hands or lower arms.  So I think gluten had a bearing.  I had the tests and have a confirmed diagnosis for that one.

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ironictruth Proficient
8 hours ago, cristiana said:

It is interesting you have ulnar nerve issues.  Me too, left and right.  Starting really playing up just before diagnosis - I was always waking up with numb fingers, hands or lower arms.  So I think gluten had a bearing.  I had the tests and have a confirmed diagnosis for that one.

That is exactly how mine started! At the tail end of eating gluten again before an endoscopy last year. Same way, waking up in the middle of the night at first. Then it worsened, now better but I get some transient stuff in that arm. 

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cristiana Veteran
15 hours ago, ironictruth said:

That is exactly how mine started! At the tail end of eating gluten again before an endoscopy last year. Same way, waking up in the middle of the night at first. Then it worsened, now better but I get some transient stuff in that arm. 

It's always nice to meet a fellow suffer - although I am sorry you have this problem!  Also  I used to get, when it was at its worse, wierd feelings in my fingers when I unscrewed a jam jar top, for example.  Kind of pins and needles.  That doesn't happen anymore.  Now occasionally I find when I am washing my hands under hot water and wringing my fingers instead I get weird although mild sensory changes, a bit like there is a long hair caught on my fingers, or a cobweb. I've googled it an it seems this can happen with ulnar nerve problems.   Apparently ulnar nerve and carpal tunnel are something we celiacs are prone to.

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  • 2 years later...
rbar70 Newbie

Wanted to throw in my 2 cents.

Some months ago I began to get tingling/pins and needles in hands and feet.

I felt like there was a hair/string on my arm. None there. My arm/skin felt like it was wet- when it was not. I had crawling feelings on my scalp. Itchiness. Skin felt way more sensitive to touch. Also temp changes. I would also get sudden feeling of being very tired- in the legs. Im a runner- so this was weird. It felt like I had ran 20 miles. (without the pain).  I went to Dr and he checked a few spots in my back and feet and said- maybe a pinched nerve- but that there was nothing that worried him. If it got worse- to return or email him. Really?  Thats its?

As for feelings of vibrations......

1st one - I thought my phone was vibrating in my pocket. I went to grab it- nothing there.  But once it started happening on and off the 1st day--- It literally felt like the left side- of the head of my penis had a phone/beeper vibrating on it. AND it was  cyclic.

It would vibrate for a little, then stop, then return... just like a cellphone/pager.

This would happen over and over during the day. 1st few days I kept looking for a cell phone in my pocket.

The following week, I was sitting on my chair at work- and thought to myself- someone is calling me..... and I got up to get the phone on my chair-- as I thought I sat on it.... but my phone was on my desk. The vibration had now moved to the anus. This continued for several weeks.

Of course I hit the internet. As you all know- things like MS and other diseases come up. I also found that I was not the only guy getting the sensation of a vibrating penis.

As you all know- I was getting stressed with all these nerve issues. Waking up to a numb hand.

The vibration then moved to the area on my left leg right above the knee. It felt like it was vibrating.

Reading and reading- I saw some people comment on trying to go gluten free.

Thats what I did. The vibrating stopped. the tingling in feet stopped. The crawling on scalp stopped. over several weeks to a month- everything began to lessen.

I Know the test is to return to gluten containing foods... but im actually 'scared' to try it. Last week I think I ate some food with gluten- as several days later- I got a light increase of tingling in my fingertips. Some mild headaches and my feets skin felt a little more sensitive.

But the vibrating feelings have not returned.

At the peak of nerve issues- Id say were 100 (0-100). Now with removing gluten- Id rate the nerve issues a 10.

Gluten removal- is by looking at ingredients.

I have not gone to the extreme of 'cross' contamination gluten. For example- prepping food where my kids had just prepped a sandwich.

My wife talked a neighbor and mentioned that I was going gluten free- and she asked.... Was he feeling vibrations in this body?

 

 

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cyclinglady Grand Master

@rbar70— have you ever taken a fluoroquinolone (e.g. CIPRO) antibiotic?  This drug now has a black box warning that warns about snapping tendons, neuropathies, aneurysms, blood sugar drops etc.

https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm612995.htm

I had them after gallbladder surgery a decade ago.  I got a buzzing in my foot (imagine a bee inside your foot like something out of a B-rated horror flick).  I would get electrical jolts.  I will never take this drug again unless I was dying.  Who would want to get out of bed an spontaneously rupture my tendons.  Not this runner!  

 

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rbar70 Newbie

Quick answer. No antibiotics.

I never liked taking meds. Not even for headaches.

Though last year- I had an allergic reaction to something. Started with severe hives. Urgent care gave me a shot and prescribed Prednisone for a week. Well it have some weird side effects. Severe night sweats. Trembling hands. Racing heart. Numbness in the jaw. It also caused sudden mood changes- One minute im nice and kind--- then say a fly buzzed by-- and I was a raging bull.  Yeah- online search- theyre called Satans Tic Tacs. The day after my last dose- I was getting a haircut and the barber told me- my head was very hot. I then began to feel like I was going sideways, my right cheek/jaw went numb, trembling hands, sweaty palms, racing heart like I had just sprinted the last segment of a 10K race, stutter in voice, I thought I was having a stroke. Headed straight to urgent care- where they checked me out- and they told me all my vitals were fine. I was having no emergency.  Online search I saw that someone else had a similar side effect where they thought they were also having a stroke and headed to ER, only to be told the same thing.

If the Dr had told me of those side effects- I would have declined the meds.

I had an allergy test for shrimp, lobster, crab, and a few other items and they were negative.  No idea what caused the hives- so I bought myself a pair of EPI Pens just to be safe.

For a couple of months after that- I would get some light swelling in my lips... after eating Thai Food.  What was interesting is that Ive eaten Thai for years. Same dishes same restaurant.

The hives lasted about 2 weeks. Have not returned. No more swollen lips.

Sometimes I wonder if this was my bodys 1st reaction to gluten?

But the tingling/etc started maybe 6-8 months later roughly.

So Prednisone for 5 days. and no more meds.

I did start Magnesium and some B Complex once I went on the Gluten free.

 

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  • 4 months later...
Kittin Newbie
On 6/26/2014 at 2:47 AM, GFAnnie said:

I have no idea idea if celiac can cause this, but my husband experienced the same thing you describe when tapering off of his antidepressant, and also a benzodiazepine.  Any chance you have discontinued or starting taking these in the past year?  I'm sure there are other reasons, but I thought I'd comment since he experinced the exact same sensation, and doctors are maybe even more clueless to these a/d side effects than they are about celiac!

Hi. I hope this message can reach you. This is what I am feeling now. I am shaking from the inside my entire body. I was in Lexapro and Xanax for 9 years. Went cold turkey last january. Due to some stress had to restart last May. I then started feeling them like my whole body. How long before they disappeared for your husband? Appreciate the response. Thank you

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  • 10 months later...
JannaMo Newbie

Hi MMG21, I have the internal vibrations you describe (which I had over a year ago too). Last time they lasted about three months. I struggle to sleep and I feel like I’m dying or at least going crazy!  I thought maybe this was anxiety because of the Covid-19 virus and my husband’s pancreatic cancer but I’m not currently feeling so stressed and I still have the vibrations. I too have. Sharp nerve pain and numbness that moves around in my body but are pretty regularly in my feet and legs. I know I have food allergies but I have so many it’s really hard to avoid my allergens so I have about stopped trying!  But lately I start feeling weak and shaky and my head feels really full and my heart races and I feel quite exhausted within 20 minutes after eating most anything so I guess I better pay closer attention to food allergies. It almost feels like miniature anaphylaxis reaction that lasts for hours and hours.  

I am also wondering if those of you who have felt that magnesium and B vitamins help is because you normally don’t take enough in or maybe they aren’t absorbed correctly?? I wouldn’t be surprised if that is the case with me! 

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  • 4 months later...
Valerief Newbie
On 6/25/2014 at 10:47 AM, mmg21 said:

I was dx with celiac disease a year ago by biopsy and blood test.  I have been very faithful with eating gluten-free.  And was doing really well until 4 months ago when I started getting "internal tremors" It feels like my body is vibrating but nothing can be seen on the outside.  I've been to the Dr and had a MRI of the brain and spine and everything came back normal. The Dr has tried different medications and they just make me feel  bad and do not help the tremors. So now I'm wondering if this is related to  my celiac and if there is something I'm missing.  Could shampoo, body wash, clothes detergent do this? I use Head & Shoulders, Olay body wash and Arm & Hammer clothes detergent. Maybe after using day after day it has gotten into my system? Or maybe a vitamin or mineral deficiency? I would be grateful for any ideas or thoughts.

I suffer from internal shakes and have celiac. Have discovered that it happens when I eat something that is not gluten free. So now I am more careful with my diet. 

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  • 4 months later...
Ryan McD Newbie

Hi - I have stumbled across this forum a couple of times. My mother was diagnosed as coeliac in 2016. Now she has aggressive internal vibrations; struggles to walk, sleeps only 1-2 hours per night (for last two years). We haven’t been able to find any solutions/effective treatments.

 

I wondered if you have been able to make any progress?

I hope you are feeling better,

 

Thanks for any pointers,

 

Ryan

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