Dr. Bateman answers IOM questions from the community: Part 2
Clark Ellis brings us Part 2 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community …
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Inner vibrations....what are they really?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by soxfan, Jun 27, 2013.

  1. peggy-sue

    peggy-sue

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    The only time I've ever felt something similar to what is being described, was going through (severe) alcohol withdrawal.
    (pre-ME).
    I don't think a nice dose of vitC and milk thistle would do any harm at all - and might well do some good.

    It's really, really horrible. Sorry to hear you're going through this.:cry:
     
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  2. EMilo

    EMilo Elizabethmilo.com

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    I find this so interesting. Before I was diagnosed and before I had done any research or knew of this site, I kept complaining to my doctor and husband about my "internal tremors." That's how I described them without ever having read anything. I will never forget the surreal feeling when I found the Daily Strength forum and there were threads discussing "internal shakes." That's when I knew for sure I had this evil disease. The tremors for me are a very clear indicator that I need to rest immediately.
     
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  3. Olena

    Olena

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    I think that the vibration causes - is nerve damage. I had a flaccid paralysis of the left side of the body during the early part of the Epstein-Barr virus. At the same time I had a vibration and tremor.

    Gradually, I took medication for nerves, anti-inflammatory treatment for joints and massage. Now it is much better.
     
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  4. Ruthie24

    Ruthie24 Senior Member

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    @Olena- Interesting what you said. As I was reading this thread I realized that I used to get this sensation quite frequently but have rarely had it, and only very briefly, since I've been on anti virals. I was already on anti-inflammatory meds so maybe the combo has helped.
     
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  5. Olena

    Olena

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    I have noticed another symptom: when I take anti-fungal treatment, reduced vibration.
     
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  6. roxie60

    roxie60 Senior Member

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    The vibrating has returned but I feel it in arms, legs, feet, I dont think I feel the vibrations in my head. When I first gof really sick the vibrations startedin my head then moved from head to body. Bizarro life
     
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  7. Richard7

    Richard7 Senior Member

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    I get this too, my memory is pretty messed up, but the first time I can remember talking to a doctor about it was in 2013, when I was seeing the doctor about some flu like virus. I cannot remember the details exactly but at the end he explained that he was going to refer me to another GP, who was better aquainted with CFS, and I asked but what about shivering - I think that is what I called it. I felt like my whole torso was vibrating very quickly and I thought that this was a symptom that could not wait for the 6 weeks it would take to see the other doctor, and he placed his hand on my chest and explained that he could not feel it, or see it and that it was just a migraine symptom. I am a migrainer, and new odd sensations tend to get tossed into the migraine basket. Anyway I realised that though the sensation was very clear internaly I too could feel no vibration in my hand when I applied it to my chest or abdomen.

    The sensation is often really strong, it seems to be worst when I am most fatigued, and I often find that all of my senses seem to be discontinuous when I am in this state. I have tinitus, bad visual disturbance etc. Its as if mt senses have gone from broadband to morse code. I can also feel it in my arms and shoulders, I have not noticed it in my legs or head.

    Does this sound like what you are experiencing to you?
     
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  8. Richard7

    Richard7 Senior Member

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    In a way this is like my fevers. Today my temperature is about 36.5C or thereabouts, it think it topped out at 36.71C (oral) I feel feverish and have for three days now, outside it was 15.3C last night and I needed two blankets, woollen socks and a jersey. Today I have been wearing thick woollen socks, jeans, a tshirt and a flannelett shirt, the day got to 24.5C - tshirt weather. So I feel that strange sort of cold and feverish thing we call flu, but am not warm enough to have a fever. Or what most would call a fever, I have no doubt my immune system is hard at work.
     
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  9. goodoutlook

    goodoutlook

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    I get this, for me it all started when i was taking 1000mg vitamin C (not sure if it was the course), for me it comes and goes only really at night time. its like a vibration or shaking in the chest area, i also note that i get like a flashing in the eyes also, on off on off shuttering. i cant sleep when i have it so to make it go away i get up and have a smoke and go back to sleep, if it dont i cant sleep because it gets worse. i also noted once it acutely affected my arms but i was so tired i cant be sure.
     
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  10. Olena

    Olena

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    try taking the usual dose of Magnesium and chlorella (1 gram per 30 minutes before a meal) = every day. Chlorella need to drink for a long time:)
     
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  11. crowquill

    crowquill

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    I get these sensations a lot and it seems to me to occur (in my case at least) when the muscles are fatigued and trying to relax but can't so shake. There may also be an element of adrenal hormones kicking in to try and keep the body going.

    I find that massaging the affected muscle often helps but it may be that what I experience is not the same as what others describe. A mix of valerian and viburnum opulus (cramp bark) tinctures has been helpful too.

    Andy
     
    Last edited: Aug 20, 2015
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Feelings of vibration in the body and/or limbs can be due to electrolyte deficiency, which causes the nerves and muscles to become hyperexcitable.

    I had it very bad when I had severe hyponatraemia (low blood sodium) which many of us are prone to. All my muscles - external and internal - were in spasm. It included the urinary and anal sphincters, the heart, the respiratory muscles and the limbs. This page lists some symptoms and other info about electrolyte imbalance. Although it's on a website about cancer, most of it is relevant to non-cancer sufferers.

    I still have bouts where it feels as though my muscles are buzzing, especially in my legs. It's very unsettling and makes it impossible to rest properly. Twitching is common too.
     
    Last edited: Aug 22, 2015
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  13. crowquill

    crowquill

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    Thanks, MeSci. That makes a lot of sense.

    It is certainly one of the more unsettling symptoms.
     
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  14. out2lunch

    out2lunch Senior Member

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    Bingo. :thumbsup:

    Electrolytes are infamously out of whack for many of us, and these are precisely the same symptoms I get when my potassium and magnesium levels tank. I'm quite prone to deficiencies in these two minerals, and I'm a total wreck when either one gets too low.

    In addition to the internal tremor stuff, one thing I've also noticed about myself when my electrolytes dip is worsening constipation. And when my large bowel becomes overloaded, my vagus nerve takes a hit.

    My heart rate increases, my chest hurts, I develop severe nausea, and my sciatic nerves get very painful from my lower back down to my knees. Until I can get the crap out, literally, nothing calms my system down. And the only thing that works is putting back the potassium and magnesium that's lacking.

    Definitely heed MeSci's advice on this one. Check out your electrolytes and be ever so diligent about keeping them in balance. :cool:
     
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  15. out2lunch

    out2lunch Senior Member

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    parvofighter… I went to the link you referenced in your post, and found another link in that post to a thread on MedHelp.

    In the MedHelp thread, one of the posters mentioned also having these tremors, and that he/she had been diagnosed with mitochondrial myopathy. Wow. Another connection made to this disease.

    Staci Stevens has mentioned that the only disease other than ME/CFS they've seen the same results for on the 2-day CPET is mitochondrial myopathy. Patients with cardiovascular disease or clinical depression didn't produce similar results; only MM came close to our results.

    I know this is off-topic, but I now find myself asking this question again:

    Are we all suffering from some kind of mitochondrial myopathy variant? Especially those of us who've been ill for decades and continue to slowly worsen, no matter how aggressively we tackle our disease?
     
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  16. Richard7

    Richard7 Senior Member

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    Hi Andy, MeSci and Out2lunch,

    I am still not sure what is going on but have noticed that they seem to be related to potassium, sodium and perhaps metafolin and b12.

    A month ago or thereabouts, I seriously increased my sodium and potassium intake, taking enough to bring my urine to neutral in the evening, but not enough to make it neutral in the morning.

    Most of this was because I had a full body viral rash and having read that potassium was important for the immune system on the enterovirus foundation's site http://enterovirusfoundation.org/immuneboosters.shtml: reading the info at http://lpi.oregonstate.edu/mic/minerals/potassium.

    I found that 3-4 tsp potassium chloride was working well for me with about 2-3 tsp salt. Note that my immune system was probably pretty active: it was a really nasty rash, and my usual dietary potassium is high 6-11g.

    Last week my doctor asked me to reduce the amout of potassium I was taking, because some pathology I had done about 30-60 minutes after taking a tsp of potasssium chloride showed me at 5.2 and 5.4 is apparently a bad place to visit.

    so I decided to step back on potassium, salt and the metafolin that was probably also accelerating my need for potassium.

    I had palpitations, and vibrations strong enough to wake me over the next couple of days. I tried some experiments trying to see if it was the potassium or the salt that was most effective at stilling the vibrations, but it seemed that the vibrations only stopped when I added the metafolin.

    I susupect that the potassium is most important for palpitations; salt for POTS; magnesium for muscular spasms and perhaps the metafolin for the vibrations.

    I have noticed that B12, which seems to relax me when I need it, might be important for vibrations too.

    This B12 thing might fit in with Andy's observation about it striking when the mucles are tired. For me it tends to be afternoon/ evening when I am resting/ need to rest and early morning say 5am - 9am.

    But it is hard to know, the ideal experimental conditions occure at moments (or for hours or days) when I am least able to consider these things carefully.
     
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