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Constant nerve tingling ,hands legs ,head..

Discussion in 'Peripheral Neuropathy' started by Righthammer, Oct 28, 2009.

  1. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Righthammer,

    I agree with the others who say to check out Freddd's threads and protocols. Most docs use serum B12 test - not very useful (just like blood tests are not very useful for magnesium testing). You should ask your doc for an MMA urine test for B-12.

    Also, if you can get a copy of the book "Could it Be B-12" from your library, it might be useful to check it out.

    Good Luck!

    HW
  2. Hysterical Woman

    Hysterical Woman Senior Member

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    Also, righthammer

    The book that I mentioned above lists the following neurological signs and symptoms of B12 deficiency:

    *abnormal sensations (pain, tingling and/or numbness of legs, arms, trunk, or other area)
    *diminished sense of touch, pain, and/or temperature
    *loss of position sense (awareness of body position)
    *weakness (legs, arms, trunk, or other area)
    *clumsiness (stiff or awkward movements)
    *tremor
    *symptoms mimicking Parkinson's disease or multiple sclerosis
    *spasticity of muscles
    *incontinence (urine and/or stool)
    *paralysis
    *vision changes (decreased vision of loss of vision)
    *damage to the optic nerve (optic neuritis, inflammation, or atrophy of the optic nerve.

    Those are just the neurological signs, there are others.

    Good Luck,

    HW
  3. Nina

    Nina Senior Member

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    Hi Maxine,

    it was me who pushed Righthammer's thread back up as I didn't want to start a new one on the same subject. (See last post on page 2)

    I definitely have no B12 deficiency. Besides the tingling and vibrating sensations only in my legs I also have muscle weakness and muscle twitching.

    If anybody has had this or knows what might help I'd be incredibly grateful!

    Thanks
    Nina
  4. coxy

    coxy Senior Member

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    i had bad tingling of hands and feet at the beginning of my illness. Once i got a diagnosis i started taking enada and vegepa(omega 3 & 6) x 8 per day, the tingling stopped quite quickly and i haven't had it since. Like many symptoms though we never know if it's coincidence or not. I don't know which of those 2 items it was though.
  5. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Nina,

    Thanks!! I am so sorry, I had not read this thread at all before started and the beginning, but missed your post where you said that you bumped it up. Duh.

    Sorry that the problem isn't a B-12 deficiency since that would give you a path forward for treatment. Since I am just now learning about all the problems that B-12 deficiency can cause, may I ask what kind of testing you might have had to done to rule out the deficiency? I just asked my doc for the MMA urine test today and he was interested in having me get it and getting more information about it so he could test other patients. I have had numb arms in the morning when I wake up for about the last year.

    I hope that more people will respond to you regarding this. I am also interested in the VO2 max. I believe coxy had some suggestions in a post, too.

    I have a small amount of tingling in my legs but mostly pain and lots of twitching. This has gone away for me with magnesium supplementation.

    Please let us know how you are doing and what you decide to try.

    Take care,

    HW
  6. Nina

    Nina Senior Member

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    Hi coxy, thanks for the input. I took Vegepa for about 4 months and as with so many other supplements, didn't notice any improvement. Never tried the Enada, though, but I'll give that a shot! I would try anything right now!

    Maxine, please don't worry, my post was the last on the page and easy to overlook!

    As for my B12 status: I had a deficiency in B12 when I first got sick. Since then I have taken endless shots and tablets and my labwork now shows I have really high B12 levels. I am still injecting 1,000mcg of B12 a week, sometimes more.

    The usuall test is the B12 serum test. I tested low for that one, but if you don't that doesn't mean you are not deficient. The better tests are methylmalonic acid (urine), homocysteine and holo transcobalamine.

    High MMA and homocysteine indicate lack of B12 or folic acid.

    Hope this helps!

    Nina
  7. dmholmes

    dmholmes Senior Member

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    Which B12 didn't help at all?
  8. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Nina,

    Thanks for ignoring my thread reading ineptitude and thanks for the great information on B-12 tests. I started out trying to provide information to someone and ended up having someone provide more information for me! I love this forum.

    I am also interested in David's question of what kind of B12 & dosage you are taking.

    Let us know is you try the Enada.

    Take care,

    HW
  9. KC22

    KC22 Senior Member

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    Have you taken prevacid or nexium for your gastric problems? Just recently, my sister gave me some nexium for my gastric problems. I woke up for several days with your symptoms. I found that this can be a side effect with some people. I stopped it and the tingling went away. Just a thought.
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Wow - KC, thanks interesting - I wonder why?
  11. Righthammer, are you sure you might not have Multiple Sclerosis? Have you seen a Neurologist or had an MRI scan? (Probably yes, but it doesn't hurt to ask I thought...)
  12. Nina

    Nina Senior Member

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    I've been taking Methylcobalamine (sublingual, up to 10,000 mcg per day), Cyanocobalamine and Hydroxycobalamine (i.m. shots, 1,000 mcg once a day then once a week) and now I'm giving Adenosylcobalamine shots a go. Unfortunately the variety of forms and brands that I can order from Germany is limited, I have no access to the "good brands" from Freddd's B12 thread, nor to MB ampoules.

    Thanks, good thought! No, I didn't take any of these. At the time the tingling started I wasn't taking anything except B12.


    I have been tested for MS and other neurological disorders several times but all of it has been ruled out. Apart from that I fit the Canadian CFS criteria, almost textbook.
  13. fds66

    fds66 Senior Member

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    I have had strange sensations in my feet - it feels like I'm standing on electricity and getting shocks on the soles of my foot. Luckily, for me it didnt' last too long but it was very strange. I have strange sensations elsewhere like little insects are crawling on my skin. That is more annoying that worrying. I also get numbness in my fingers sometimes.

    Hope you find something to help.
  14. talkingfox

    talkingfox Senior Member

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    I had a whole lot of that sort of thing going on until very recently. This prompted my GP to send me to a Neuro to rule out MS.

    I still get some tinglies, zaps and crawlies , but it has improved radically after I started the methyl-b protocol and further when I started anti-viral stuff. I'm pretty sure mine was caused by downstream co-infections, but then again I've no proof of that as far as labs. I'm another one that's darned near textbook Canadian Criteria, albeit not as severely as some.

    I really hope that you can find something that works for you. That whole thing is just as annoying as all get out isn't it?
  15. Hysterical Woman

    Hysterical Woman Senior Member

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    Nina/numbness-tingling

    Hi Nina,

    When I was seaching for something elsle, I did come across this blurp on magnesium in relationship to numbness and tingling.

    It is in the bottom paragraph.

    http://outsideinlife.com/upload/PDF/magnesium.pdf

    Please let us know how you are doing with your search to fix this frustrating problem.

    Take care,

    HW
  16. Mithriel

    Mithriel Senior Member

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    ME is classed as a neurological illness and these sorts of neurological symptoms are common. I have had some relief with gabapentin which I think is neurontin.

    I have dystonia and paroxysmal dyskinesia - twisting and abnormal movements.Also get formication the feeling of insects under the skin and electric shock pains. I think some aspects of ME overlap with some types of MS though it is possible that I have both diseases. (Thanks to having ME I have been written off by the medical profession, though my GP, family doctor treats me symptomatically and we don't mention my ME)

    I get hyperbaric oxygen therapy every week which has put a brake on my neurological deterioration. I also take B12 sublingually every day. Mehtylcobalamin was recommended for MS as you can take it every day so getting a more even dose.

    Spinal taps of people with ME did not contain any B12. It was hypothesised that we couldn't use it, rather than we don't have it in our blood stream.

    One thing though, I get a pain under my middle toes. I kept thinking I had stood on a lego brick or something, but it turns out this is called Morton's Neuroma. It is a nerve degeneration found in middle aged women (huh!). I have to wear flat supportive shoes like cross trainers or birkendale sandals to stop it getting worse. Heels make the pain much worse.

    Mithriel
  17. Mark

    Mark Acting CEO

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    The Itching

    This is all massively relevant to me, so I hope my detailed story will shed some light; there is definitely a subset of posters on this thread who have the same phenomenon as me, although the majority may or may not be describing something different. I often call my own illness "The Itching", wondering whether Stephen King would be interested in a real horror story...

    Relevant history: I date my onset to a year during which I began to experience night sweats; these weren't a response to being too hot, and were quite unusual episodes of waking up drenched in sweat despite having been rather cold, if anything, all night. Happened sporadically, quite a few times. The even more memorable incident - and even more significant - was when I stayed at a friend's house and experienced a phenomenon that people describe as "like insects crawling around under my skin" - that's the only way to describe it, and it's an unmistakeable experience: when I first read that described a few weeks ago I knew I was reading about this aspect of my condition for the first time...

    So what did I read about the 'crawling-insects' phenomenon? Surprise surprise - it's another psychosomatic disorder - ie. something else that loads of people claim is happening to them which can't be tested for and therefore must be all in their imagination. Funnily enough, all these people report the same experiences of itching and a sensation like insects crawling under their skin, and we tend to have CFS symptomology as well. So this 'imaginary' condition at least has a consistent pattern...

    My own 'itching' is 'impossible', apparently, because I don't get a rash. Long, long ago, I naively believed that this real but impossible phenomenon would one day spark the curiousity of some consultant or researcher or other - after all, if something impossible is happening, there's clearly new knowledge to be had. But that was back in the days when I believed them when they told me I was the only person in the world with this symptomology and the whole things was unheard of - before I discovered there are tens or hundreds of thousands of us and before it even occurred to me that they would all find it much easier to conclude that if it was impossible, it was a case for the psychologists...those guys seem to be able to explain just about anything...

    15 years, and yes I've been through every anti-allergy and anti-dust-mite product known to man, and as my symptoms wax and wane, 'the itching' is never more than a day away. If I so much as sit on a chair in a public place, or try to put my head on a pillow (haven't slept on one for over 3 years now), it starts as a tickle, develops as a series of tickly itches randomly around my body, and grows within less than an hour to a series of sharp stabbing pains like needles being jabbed into me. After a day or two without relief from something that provokes the itching (almost all new clothing and bedding provokes it, for example), I have settled into a state where I can no longer feel the itching directly most of the time - now I feel what others have described on this thread; a sort of fuzzy odd sensation, a kind of mixture of extreme sensitivity and benumbedness; I become incredibly tired and my skin seems to be permanently tingling all over; I get burning pains wherever my clothes touch my skin, and the sensation no longer feels like 'itching' as such; now I just have something more like the basic, classic CFS symptoms.

    It took me perhaps 10 years of experimentation, supplements, trying everything under the sun before I could even get to the stage of identifying when I was in contact with something that made me itch. Until then, I was permanently exposed, and permanently symptomatic, and I couldn't perceive the subtle effects basically because I was never free of it. But now that I am, through extreme avoidance measures it seems I can keep the beginnings of decline at bay.

    I don't know what relation my condition has to that of others, but from other posts on this thread it's clear there are others here who have this same itching phenomenon.

    It might not be CFS/ME, but it has at least one thing in common with it - it's "medically impossible" and dismissed as psychosomatic, and there ends the story. CBT is, of course, always available...

    I haven't got very far, over the years, with finding any accounts at all of this phenomena that I experience, so I'm excited that there are some others with the same on this board. I don't know whether those who describe it as 'neurological' symptoms are talking about the same thing, it seems really hard to be sure whether this is the same thing or not because all we have is our words describing the experience, and we describe things in different ways according to our own mental model of how we understand what we're feeling.

    In my case, it's clearly related to multiple allergy-like sensitivities to foods and environmental toxins, particularly mold, but also any dust can provoke it. These sensitivities are all of a type that shows up under 'alternative' testing but not under NHS testing (ie not 'true' allergies).

    One thing I came across that really intrigued me is the bizarre and controversial condition of "Morgellon's Disease". As far as I can tell, this seems to be CFS with the 'crawling-insect' itching (the best description of my own 'itching' symptoms I've read), plus one other totally bizarre phenomenon: 'fibres' emerging from the skin!

    Based on my early experiences, where my first sensitivities and strongest sensitivities were to washing powders, particularly to biological washing powders, and based on the confirmation that the bedding where I experienced the 'crawling insects under the skin' was washed in biological powders, I suspect there's a connection with biological washing powders. I've read a theory that these enzymes have the biological capability to carry pathogens right to the heart of the immune system where they normally couldn't reach. And if there really is a phenomenon going on where people have mysterious fibres emerging from their skin, enzymes designed to distinguish between the fibres of clothing and the biological dirt on them would seem like they might have the relevant properties to explain it all...

    One final thought. I often wonder whether I'm actually lucky to have this 'itching'. I can now directly sense when I'm exposed to anything that sets me off this way, although if I were permanently exposed for as long as a week I would lose that perception. If I remained exposed for a matter of weeks or months, I would be back to where I was for several years, 5-10 years ago - bedridden 12-14 hours a day and barely able to move from my unrefreshing bed, yet unable to discern that it was a reaction to something - still unknown - in and on my bed and clothes that was maintaining my condition. If I could not directly perceive the environmental provocations, I would have absolutely no hope of managing my condition; I would definitely have pretty severe CFS.

    I'm very wary of generalising my own experience to that of others because it's so likely we have several subset conditions under the CFS/ME umbrella. My condition might easily have little or nothing to do with ME. But I do often wonder about the people who are bedridden and deteriorating, because I think back to the years I spent not realising that my bed and clothing themselves were making me worse in an unimaginably subtle way. On the downward trajectory I was deteriorating along during that time, I can easily see myself then as heading towards the more severe end of CFS/ME symptoms.
  18. citybug

    citybug Senior Member

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    I recently spoke to another patient who had seen a restless leg specialist. They said one of the causes was low iron. I've been suspecting my iron was low and haven't been able to get it tested. I'm mostly vegetarian and my recommended supplements are all without iron. The magnesium paragraph sounds like me too.
    My legs were totally driving me crazy last week, then it lessened, it was a couple days after a magnesium b vitamin push (and one day after first neural therapy).
  19. Nina

    Nina Senior Member

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    Hi kdp,

    maintaining an adequate iron status is definitely a problem for me.

    Can I ask what kind of neural therapy you had? The one using a locan anaesthetic or Mike's version with homeopathic remedies?

    Thanks
    Nina
  20. JAS

    JAS

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    I too have had tingling in the lower legs and feet and hands from the onset on the illness, once I did wake up in the middle of the night and my whole entire body was tingling strongly, like bees buzzing all over, then it seemed go but came back that afternoon as before, ie the tingling in my lower legs/feet etc and has been with me ever since. The worse I feel the worse it is. For the first couple of months I did have a patch on the top left towards the front of my head which felt it too. I also have electric shock pains, do not last very long but don't half make you jump! Sometimes when I am laid with my ankles crossed I cannot feel which one is which, they feel like they have merged into one, mostly it happened at the beginning of the illness and I had forgotten about it until last week when it happened again. I do have twitching that can happen in any muscle in my body...just random and sporadic, doesn't happen all the time but I get a few most days. I take a good vitamin B supplement every day so don't think it can be that. I have been checked out by a neurologist for MS and I don't have that either. Parkinsons provokes a different kind of shake, if you look at a person with Parkinsons they usually rub their thumb on their forefingers together which is a sign so the neurologist told me. If I lean on my elbow my elbow shakes and twitches, they are very week and no matter how hard I try to build them up they just won't build....and I do get nightsweats where I don't even feel hot, I just wake up wet! I do have temperature problems too. To me I just thought it was part of the illness, in with all the other symptoms. Please tell me everyone else feels this! jx

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