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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Help, I need input. Feel lost.

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by kisekishiawase, Jul 22, 2013.

  1. Shell

    Shell Senior Member

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    England
    According to the research by Patrick Woods and others from Spain and Mexico (and I think somewhere else) there's a lot of evidence that fibro is a form of hyperadrenergic POTS. This means the HPO axis doesn't work properly so we have bizarre flight and fight responses to such dangerous things as standing up.
    Because of the adrenal effects we have difficulty making dopamine from Norepinephrine (noradrenaline) and then we might have problems with dopamine uptake or reuptake. It also effects catacholomenes.
    It's all complicated but the upshot is we get either POTS or like me IST (which many researchers think is a form of POTS) and other stuff like pain and tremor. My tremor is awful now.
    There was a very small scale study with 12 (I think it was 12) women with FMS taking Ldopa which showed some promise but there's been no follow up that I'm aware of.
    I've decided not to get the complicated tests done because a) there's no treatment and b) I don't believe there's enough experienced people in the NHS who can do these tests properly.
    It's also been considered that as the Pituitary runs the hormone show overall his might explain why so many more women than men get FMS.
     
  2. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Murcia, Spain
    I got this and have leaky gut. It is crazy. I thought you said magnesium defficiency was from the methylation block. One of my feet, my entire leg cramps like electrified, sometimes it feels as if I am falling over, like when you are walking and you stumble across something. But how the hell does someone get this when laying down, it is really an odd sensation. I mean, the twitch is so strong my whole body jumps a bit.

    The 4R I have seen it before, seems like a solid outline. Fixing leaky gut and methylation I feel will be very important for me, if not the complete recovery. But first I will need to convince my parents (they are still reading all my "evidence" for methylation). I wish I had a job that I could hold, but that is not likely, I think.
     
  3. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Left Coast
    I know someone has horrible numbness and tingling in her feet and hands. She uses Benfotiamine. She said within days she felt relief. I don't know if this is in the same realm of things but worth a shot since it's pretty cheap.
     

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