What It Feels Like To Live With Neuro-Fatigue

Chronic Illness

  1. Karen says:

    Thank you so much for writing the words that represent so much of my life. I’m going to share this with my family and friends. – Karen

  2. Natalie, thank you for sharing this lovely, poetic, and all so real explanation of your personal symptoms. And, for putting into words what so many of us fighting illness (Lyme in particular) experience. The term “neuro-fatigue” is so fitting. Your description is truly spot on and beautiful written. I’m sharing this post all throughout my social media channels. May you be blessed with fewer neuro-fatigue days — and soon. Healing wishes.
    —Terry xxoo
    http://www.terrymmayfield.com

    • Natalie Sayre says:

      Thank you, Terry! ❤️ This means the world to hear. It is such a "mixed bag" of symptoms that can be so hard to fully explain, I’m so happy to hear that you feel like it encapsulates the lyme experience well. Sending lots of love + healing to you!

  3. Katharine Keeling Spann says:

    There is something therapeutic about knowing that I am not alone in this. I feel, in my body and brain, every word you wrote. I sometimes think that there is no one who would understand my strange and many symptoms. But I see that you do. My doctors have mistaken my’ brain overload’ symptoms as anxiety. Maybe. Buy the anxiety drugs don’t help with this. Only zero stimuli for lengthy periods of time. Thank you so much for sharing your symptoms in such a way that it can’t be mistaken for hypochondria-but clearly real if not tangible ways. I am here to tell you that I know your illness. 20 years of ME/CFS. No hope yet for cause or cure.

  4. Katharine Keeling Spann says:

    There is something therapeutic about knowing that I am not alone in this. I feel, in my body and brain, every word you wrote. I sometimes think that there is no one who would understand my strange and many symptoms. But I see that you do. My doctors have mistaken my’ brain overload’ symptoms as anxiety. Maybe. Buy the anxiety drugs don’t help with this. Only zero stimuli for lengthy periods of time. Thank you so much for sharing your symptoms in such a way that it can’t be mistaken for hypochondria-but clearly real if not tangible ways. I am here to tell you that I know your illness. 20 years of ME/CFS. No hope yet for cause or cure.

  5. Rafael says:

    Thank you so much for sharing your experience! Sometimes it is really comforting to known that we are not alone in this journeys.

    By your description, I believe my neuro-fatigue is much less severe than yours, but my medical team managed to downscale the sensory overload with SSRIs. The other symptoms are still very hard to manage separated from the migraine attacks itself (mines are without aura).

    Pro tip: when the hyper sensory was too strong that I simply couldn’t even fall at sleep they prescribed Zolpidem, it was very effective.

    Best of luck!

  6. Thank you thank you thank you!! Have been struggling to explain what my past year has felt like and always feel I come up short. This is the perfect explanation, I’ll keep it on hand to share with friends and family. Sending healing vibes your way. -Christina

  7. Crystal says:

    Trying to put into words what I experience for my Dr’s appointment tomorrow & this truly hit the nail on the head. I’ve lived with fatigue for decades now, but the neuro component began over the span of this past year or so. It TRULY is debilitating. Thank you for finding words to define this & putting this out there.

  8. Annie says:

    Wow. Wonderfully said. I am suffering with “all the above”. 5 years ago My husband and I contracted Brucellosis (coinfections of Lyme) and a rare form of Bartonella. His case was more severe and alarming and as such he went through 13 rounds of antibiotics that did nothing to change the infection (as evidenced by bloodwork). My version was “light” and being pregnant it meant I couldn’t treat it properly. After he was hospitalized many times, we had had enough of modern medicine and tried supplements that cleared it up and is no longer showing on bloodwork. I didn’t treat myself similarly, counting my antibiotics as having worked and always attributing my lingering symptoms to being pregnant, raising kids or precious car accident flare ups. Anyhow here I am all this time later, showing as chronic brucellosis. I have all the things you’ve mentioned. When I’m done with this pregnancy I’m going to start up my supplements. Oregano oil capsules, coq10, glutathione, lymphtonic and turmeric. I also want to try hyperbaric oxygen therapy as I’ve heard many positive things about clearing infections/ Lyme. I’m sorry for all those dealing with these issues. It seems so easy to just be overlooked for feeling tired. But it’s massive. It’s our “all the time” feeling.

  9. Judy says:

    Wow. You have finally given words and validation to all I have been feeling for so many years. Thank you! And God bless

  10. Thank you for writing this. I suffered a hemorrhagic stroke a few months ago and I, amongst some other things, I’m finding neuro-fatigue really challenging. It’s hard to communicate it to people in a way that they’ll truly understand; so often people just reply with "Oh yeh I get that too; I get tired;" … :/

  11. L Marshall says:

    I suffered a Hemorrhagic stroke a year ago and I still struggle with neuro-fatigue. It is sad but reassuring to read things like this as it shows I am not alone, I am not making it up but I can not always find the words to describe what I am feeling. I am sorry others are going through the same thing but we are not alone.
    Thank you for writing this.

  12. Beau says:

    My wife is currently having the neurofatigues due to the TBI, she is doing inpatient rehab, we communicate to each other by email, and everyday she only could send me few set aces to tell me that she just want to be alone and stay quite, she sleep and eat well, so I don’t need to worry. After I read your article, I feel very upset, I don’t know if my wife can overcome this.

    How’s you doing? Natalie. Have you overcame this symptom?

  13. BethAnn Shoenfeld says:

    Thank you for sharing. I can’t hardly complete a sentence, at this time. I was diagnosed with Neuro-Lyme in 2009. I also just completed a long and arduous prescribed Benzodiazepine taper. Neuro fatigue is my main concern. I hope this moment finds you rested

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