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Maddening Creepies in Nerves

Discussion in 'Peripheral Neuropathy' started by soulfeast, Apr 27, 2010.

  1. soulfeast

    soulfeast Senior Member

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    Anyone have maddening creepies in your nerves? Feels like tiny little creepy tingly zappy cluster bombs going off everwhere?

    I think I am pretty up on the magnesium. ?? Could sulfites cause this? Ammonia? B12 deficiency? I dont want to lump it all into "its lyme", which I supposedly have.

    Thanks!
  2. talkingfox

    talkingfox Senior Member

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    yup. Happens a lot with me. It calmed down a bit when I started using sublingual methyl b-12 and an active b complex. I didn't go completely away, but it did ease down to a tolerable level.
  3. sela

    sela Senior Member

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    i just have a maddening feeling of rawness. like my nerves have lost an esssential coating and now they are overstimulated by everything that is irritating. if i didn't have chronic fatigue i think i would stay in my room anyway, just to not feel annoyed and disgusted by the world.
    s
  4. soulfeast

    soulfeast Senior Member

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    That sounds familiar as well, sela. I took sublingual methyl b12 yesterday and today and do feel better, talkingfox. But my symptoms can come and go too, so we shall see. Thank you!
  5. Mark

    Mark Acting CEO

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    So hard to know if the maddening creepies in my nerves are the same sensation you're describing soulfeast! But sounds similarish...the best description I've come across was "like millions of tiny insects crawling around under your skin", but that was only around time of onset for me, and since then, it's more like random needle-like stabbing pains, or burning pains, or tingly itches, anywhere and everywhere. For me, over the years, I have discovered that the clothes and fabrics etc I'm in contact with are critical - even through layers of clothing, and the effect is non-local, ie. the 'itching' is all over my body and not particularly at the site of the contact provoking it. It took me 10 years and plenty of detox first, to get to the point of working out this pattern. It was incredibly subtle to detect, and impossible until I'd cleaned out a lot of other confounding factors first.

    Cleaning mold out of my environment (air filter etc), detox, and radically replacing all clothing until I found some stuff I was less sensitive to, all helped me get to the point of being able to manage it. But for many years, it was so constant and so impossible to ever find relief from, that it was incredibly difficult to determine what the triggers were, and what was safe. Now, I can feel when it comes and goes, and manage it by avoiding things that set it off.

    B12 plus loads of other supplements, over the course of a year, did seem to help break the back of it, but I still have to radically avoid all the triggers or it all comes back again.

    This whole symptom pattern probably isn't ME, but it could be a large part of CFS, and I've met a few people on here with simlar experiences; personally I think mold/fungus is critically important to all this; I'm sure it is for me, and for some others, and I suspect it's significant for most of us but that's just my guess...and at the end of the day I'm still incredibly sensitive to these triggers, whatever they are, so there's still a permanent underlying immune vulnerability there.

    Interested to hear from anyone who has the itching type symptoms I just described, together with mold/fungus sensitivity and "never catch colds" symptom pattern. Also keen to encourage everyone to explore and look for subgroups of people with very similar patterns to yourself - and to list/describe main symptoms (on our blogs, for example) in such a way that we can all seek out people most similar to ourselves...a kind of bottom-up cluster analysis, wouldn't that be cool?...
  6. soulfeast

    soulfeast Senior Member

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    We had a high mold count exposure due to remediator not completing job properly and moving back in for a few days before inspector report came back. I had a lot of itching and inflammation under my skin esp in upper chest area.

    I have tested neg for fungus in sinuses and neg on Shoemakers Visual Sensitivity Contrast Test for biotoxin illness, so I dont know if mold is an issue here or not. Im guessing mold sensitivity would be a diff matter. I have been helped some by antihistimines..sometimes, they help.

    Im not sure I can say its my skin as much as under my skin and in my muscles. I would think magnesium deficiency or b12 make sense for twitches, creepies, tremors.. mold toxins as well.. ??? I know they went away in the past with myers cocktails and glutathione...which addresses magnesium, b12 and I guess could help detox mold toxins though not sure about the mold toxins.
  7. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Lyme and toxic molds are both highly neurotoxic. Sadly many folks with Lyme have difficulties detnxing. Also continuing detox is usually required as the source of toxins is still there. For me mold avoidance, sequestrant detox, treatment of toxin producing Staph, multi b12 + active folate, adequate rest, clean clothing and body all help. Peace, S
  8. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    Btw another thing that is known to contribute to itching and maybe even other annoying sensations is a partial blockage in the flow of bile. Dont know if i am spelling it correctly but try looking up cholestasis. S
  9. soulfeast

    soulfeast Senior Member

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    I think the methyl b12 is helping. I am taking 1mg jarow sublingual 3 times a day. Went to sleep with one in my cheek last night, woke up to smidge still there this am and no morning creepies. I've tried things that seemed to work for a whlie and then stopped. So we shall see. Arms still feel a little shaky.

    I'm with you on the lyme an mold toxins lostinthedesert. Reading a new book called Healing Lyme Naturally by anthorpologist, Wolf Storl. Love the spiritual/natural/anthorpological perspective. He gets into natural lipid sequestrants... which will be interesting to explore. I didnt think about staph toxin being a potential issue.
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi soulfeast,

    Hope you are doing better with the creepies :-( In the book "Could it Be B12" this kind of symptom is described as a possible B12 deficiency. As far as being "pretty up on magnesium", it is sometimes hard to tell without having a tissue magnesium test (the blood test for mg is pretty much useless). I had succes with getting creepies, spams, muslce twitches in legs and eyes to go away with magnesium glycinate supplements, but it can take a long time to correct an imbalance. After 11 months on the magnesium I was tested with EXAtest and still showed to be slightly low in magnesium. In addition, my calcium to magnesium ratio was still too high even tho I take no calcium supplements at all.

    I know that Drs. Myhill, Klimas, and Cheney all use magnesium supplements with their cfs patients.

    Good luck with this annoying problem whatever you decide to try!

    Take care,

    Hysterical
  11. Sherby

    Sherby Sherby

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    I have suffered the exact symptoms for over twenty years before i changed doctor and have finally been taken seriously. I believe that its quiet common in many conditions, so your not alone. the pain and discomfort is totally unbearable.
    I'm from the UK and i take Mirapexin (pramipexole tabs) 2x 0.18mg per day along with a very small dose of Zimovane(zopiclone) which is a sleeping tab. It does not make me feel sleepy because my nervous system is on fire all the time. But combining the two types of pills has a great effect for short periods of time. Giving me some relief
    during the day. Funny thing is that although i use Zimovane during the day the discomfort at night is so bad that i have to take antidepressants to knock me out.
    I would suggest you talk to your Doc about Mirapexin as it has helped me somewhat to reduce the symptoms.
    How does it work?
    Mirapexin tablets and mirapexin prolonged-release tablets both contain the active ingredient pramipexole, which is a type of medicine called a dopamine agonist. It works by mimicking the activity of a substance in the brain called dopamine.
    Dopamine is a substance known as a neurotransmitter. Neurotransmitters are present in the brain and nervous system and are involved in transmitting messages between nerves. These messages allow the normal functioning of the body. The neurotransmitter dopamine is known to be reduced or absent in the brains of people with Parkinson's disease, and this is thought to be the cause of the disease symptoms.
    Dopamine normally transmits messages by stimulating specific receptor sites in the brain. Pramipexole works by stimulating these same receptor sites. This produces the same effects as dopamine, and acts as a dopamine substitute. In this way pramipexole helps to restore the dopamine activity in the brain, which helps reduce the symptoms of Parkinson's disease.
    Best of luck
  12. jooles

    jooles Guest

    hi, i too have suffered with the same symptoms for over 30 years.... its in my legs arms and sometimes my chest... i too am on premipixole and like magic my symptoms have reduced remarkably i had to beg my Dr to let me try them out and have never looked back ....at least that bit of my problems is sorted x J x
  13. Sherby

    Sherby Sherby

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    Wow jooles, i only suffer waist down but to have it practically all over and for thirty years, i bet your glad to have found the magic properties of pramipexole. Funny, its nice to know your not alone.
    Id like to hope that others who suffer with the same problem have access to this drug when it can improve your health so much. Apart for all the symptoms.
  14. soulfeast

    soulfeast Senior Member

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    Thank you, Hysterical.

    I had an intracellular mag test years ago that was low. I had hyper reflexes which are no longer so hyper so I had figured the mag issue was balanced out, but this is interesting to hear about the cal mag ratio.. is this an intracellular test for the calcium mag ratio?
  15. soulfeast

    soulfeast Senior Member

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    Thanks, Jooles and Sherby. If the MB12 and mag dont take care of this, I may need to consider this. It is maddening for sure. I dont want to speak too soon, but I think the MB12 is helping until evening when I am flaring for some reason. I also am getting brain fog and gait issues at the same time. Its like all my symptoms are flaring at once and I am wondering if its the MB12 wearing off before my next dose.. maybe daily activity burns up more b12.. ??? or detox.. or if its working.
  16. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi soulfeast,

    The EXAtest measures magnesium, calcium, phosphorous, sodium, potassium, chloride and intracellular electrolyte ratios of magnesium/calcium, phosphorus/calcium, magnesium/phosphorus, potassium/calcium, potassium/mangesium, and potassium/sodium.

    The test uses sublingual buccal epitherlial cells and analytical scanning electron microscopy. It is performed by IntraCellular Diagnostics, Inc. You can get more info at exatest.com. Medicare paid for my test and other insurance companies pay for it too. The people at IntraCellular can help answer questions about coverage.

    There are many symptoms of magnesium deficiency. I outlined my own symptoms and improvement from magnesium in this thread: http://www.forums.aboutmecfs.org/sh...nsomnia-heart-palpitations-muscle-cramps-pain

    Hope you find some help there.

    Good Luck,

    Hysterical
  17. soulfeast

    soulfeast Senior Member

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    Oh.. thats the test I had. Thank you for the reminder and for pointing me to the thread.
  18. Hysterical Woman

    Hysterical Woman Senior Member

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    YW, soulfeast.

    If you have the test done again, please share the results with us.

    Good Luck!

    Hysterical
  19. soulfeast

    soulfeast Senior Member

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    So many tests so little money. If the B12 and mag (taking glycinate and malate and trandermal that I need to be more persistant with) does not help me, then I am requesting this test. Thanks so much.:)
  20. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi soulfeast,

    Good luck with your treatment. You are right, unfortunately, about so many tests and so little money. Which transdermal mag are you using?

    Take care,

    Hysterical

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