Lunarr

52d

It seems I may have been misdiagnosed and therefore incorrectly treated for dysautonomia for the last 4 years, the new suspect (chronic fatigue syndrome) makes a lot more sense and the potential of it has answered a lot of unknowns and questions regarding my health and why I am such an unusual dysautonomic patient. I think because of my young age doctors in the past haven't brought CFS up but it can affect all ages, even children, so maybe my local doctors just suck lol

I'll be returning to Mayo in a few weeks for an evaluation at their chronic fatigue clinic and am feeling pretty good about it, I've never had a doctor listen to me so thoroughly and openly before without dismissal. Highly recommend their care if it's an option for you!

I'm feeling a little lost knowing the illness I've learned so much about and have attatched to my identity may not be accurate. I know that it was, for all I knew at the time, and that CFS feels like a much better fit, but it's strange. I'm elated but also in mourning a bit. Very strange feeling. There is, of course, the potential of me having both but right now I don't know, my symptoms fit the bill of both illnesses, so I'll just have to wait and see I suppose

Malaise & Fatigue

Disorder of Autonomic Nervous System

Dizziness

Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS)

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  • sleepyspice

    47d

    Hiya ! I have both dysautonomia (they’re not sure what kind) and M.E, theres definitely so much crossover between the two😵‍💫 If it wasn’t for my dysautonomia symptoms beginning in childhood wayyy before I developed ME after a virus I would probably think my tachycardia is just because of ME :,) it’s super confusing, I hope you find some answers! 💘

    • Lunarr

      47d

      Thank you!! I know, it's all so confusing ;7; After some reflection my family and I think I may have had mild CFS/ME my whole life, that it is genetic and undiagnosed in my dad's side, and that it just worsened for me. I don't respond to traditional dysautonomic treatment and testing like I probably should (have baffled many doctors with this lol) but I'm getting a full autonomic reflex screening done in a week or so so we'll see,,,

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