Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Need help-Dysautonomia and fatigue

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Misfit Toy, Apr 2, 2018.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Can anyone tell me, does Dysautonomia cause severe fatigue? I slept from 3 am last night until 4 pm today. I would get up, get breakfast and go back to bed. I am exhausted, dizzy, can't stand for long. I am weak. Does anyone else know if Dysautonomia can do this?

    I see a neurologist tomorrow. I am scared as after 30 years of having what is CFS, I have never had this. It's a fatigue that I can't even describe and it's more like severe inability to be "up." as in sitting up, etc.

    I have POTS so I know that is part of it, but I was not diagnosed by TTT. I was diagnosed by just standing up and sitting down and due to the fact that my BP is 90/54 and sometimes lower.

    I am just crushingly exhausted and all I want to do is sleep. My MCAS is severe at the moment also.
     
    lafarfelue, Gingergrrl, zzz and 2 others like this.
  2. Cort

    Cort Phoenix Rising Founder

    Absolutely it can cause severe fatigue. I don't know that it's the cause of your new fatigue but the autonomic nervous system can affect many things. Of course dizziness is common - that's probably the POTS cutting in.

    The immune system can cause enormous fatigue as well. Problems in the brain as well.

    Good luck with the neurologist - please report back.

    https://clinicalposters.com/blogs/health/dysautonomia-not-laziness

    Dysautonomia Can Affect Digestive, Skeletal, Respiratory and Cardiovascular Systems
    SOMETHING IS OBVIOUSLY WRONG. You know you’re sick but family, friends and perhaps even physicians disagree. Your eyes may be dry; vision is blurred. You have headaches, dizziness (vertigo), fatigue, excessive thirst (polydipsia), intestinal issues (reflux, nausea, constipation, diarrhea), slow or rapid heartbeat (tachycardia), excessive sweating (hyperhidrosis), perspiration depletion (anhidrosis), nerve pain or numbness (paresthesia or neuropathy), and joint pain (arthralgia or myalgia).

    So why might a physician fail to put the debilitating symptoms together and diagnose dysautonomia?
     
    Gingergrrl, zzz, Mel9 and 1 other person like this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    I will Cort. TY!!
     
    Gingergrrl likes this.
  4. Sing

    Sing Senior Member

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    I have a lot of dysautonomic problems with ME, but as they have worsened, my fatigue level has not. My fatigue level is no more than it was at the beginning of this illness decades ago when I had no hypotension at all, for instance. However, if I am in a crash due to P.E.M. or going into or fighting a viral infection, I will definitely be much more fatigued. What you describe sounds like a “flare” or a “crash”, but those terms are general. I think you are smart to try to get this checked out and hope you can get some answers. I am also interested in what you learn!
     
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  5. Misfit Toy

    Misfit Toy Senior Member

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    Will let you know!
     
    Mel9 likes this.
  6. gabriella17

    gabriella17 Senior Member

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    If you're still experiencing this, I'd suggest getting your iron level checked. Or just start taking iron (a highly absorbable kind). This sounds exactly like what happens to me when I start getting low on iron. Iron deficiency is common, but especially wreaks havoc for me because of ME. Climbing stairs, even standing up from sitting makes my thigh muscles burn so intensely that I can hardly stand it, I get cold sweats, I get more air-hunger than usual, get shaky and feel like I'm going to pass out when standing (more so than usual, I mean, lol).

    Hope you're doing better.
     
    JadeD likes this.
  7. Wayne

    Wayne Senior Member

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    Hi @Sing

    Just a quick note: I recently discovered that wearing a compression belt around my waist helps considerably with my dysautonomia. I also recently started wearing compression socks, and the two of them combined have probably lessened my symptoms by around 50% or so. -- Hope you're doing well... :)
     
    Sing likes this.
  8. Sing

    Sing Senior Member

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    Thanks for the note @Wayne ! have noticed too that a compression belt can help, as well as the socks, but I can’t wear them more than say an hour for the belt and two for the socks. My body reacts with a muscle spasm if I were the belt too long. I guess I am contracting something whiile I wear it, because my abdominal muscles do this if I do repetitive contractions for any reason (no abdominal exercise as a result). As for the socks, my sensitivity to the type of fabric gradually kicks in and gets the aching going in my lower legs. I have small fiber neuropathy so this aching response is either part of that or some part of a central sensitization because I get this increasing aching if I were most kinds of fabrics, earrings, elastic in underwear—anything irritating to the nerves on my skin.
     
    Wayne likes this.

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