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Diagnosis by exclusion?

Discussion in 'Support Subforum' started by pilepiper, Jul 29, 2018.

  1. pilepiper

    pilepiper Newcomer

    Although I am still reluctant to believe I don't have an underlying physiological issue, what I am read about TMS and its associated syndromes, I can't help but feel this is a rock worth turning over.

    Here is my story:

    Male 22

    History of anxiety in my teens (undiagnosed) but held me back from many things I wanted to do. Small group of friends, never spent much time socializing (other than sports), never even been on date or spent time with a girl, but I'd like to.
    Attending local college, doing reasonably well, but my friends went away to school (as did my brother). Haven't made any friends/girls or socialized.

    June 2017 - Bitten by tick (babesiosis) treated (negative results 3/6/9 months post infection, negative for Lyme/etc. as well). Fatigue and other symptoms lagged into August, went and saw ID doctor without any positive tests assumed Lyme and was going to put me 30 days IV antibiotic, got a second opinion with a top Lyme guy said that was crazy. Still fatigued so pulled of of school in fall. Basically homebound myself, with short walks a few times a week and otherwise noodling on my computer/xbox. Symptoms "waves" of fatigue daily, strange cold chills, temperature and exercise intolerant, exaggerated startle response, no pain ever. Must confess I was mentally thrown for a loop by this, even to the point of every time I went outdoors I had to come back and check for ticks for months!

    January 2018 - improved a bit every month, managed to get back to school part time for the winter semester. Actually felt "better" when I went to school and "worse" when I was home. Managed to start a 15 minute back workout (hurt my back weightlifting before all this), never made me fatigued.

    May 2018 - after class on a hot day, woke up next day short of breath and worse fatigue, palpitations. Saw PCP, pulmonary, negative on all blood and pulmonary tests. On way back from doctors, severe SOB heart racing father took me to ER, blood tests, CT, Echo, EKG heart/lungs all negative. Saw cardio a week later and noticed my heart was racing when I was standing up. Suggests tilt table for autonomic dysfunction, negative, 24-hour heart monitor, negative. Also, since I was having temperature intolerance, endocrinologist did every workup under the sun, negative.

    June 2018 - one morning I was having trouble with keeping my body temperature up and was alternating between hot and cold. Father was taking me to ER had panic attack (almost passed out, fingers curled under, low CO2), more tests CT/MRI head and neck negative. Neurologist says he will do other testing and sent me to Boston for further autonomic testing, all negative.

    July 2018 - Saw an autonomic expert, says I don't have autonomic dysfunction, but autonomic over-excitation (PTSD-like) hyper arousal. Suggests SSRI. PCP puts me on Lexapro (one week so far). Saw a psychologist who says unlikely in my current state I am suffering from anxiety/depression more likely something with brain chemistry, refers me to psychiatrist (pending).

    If you have stayed with me so far, here is the rub...I've spent a great deal of time running through this and I don't really think I have found the issue yet, which leads me here.

    My theory is that my fatigue is my brains way of keeping the body's protection mechanisms alive even though there is no threat/infection. When I am active and engaged I don't "feel" sick/fatigue, when I am "passive" I do. Like when my mind has open "air space" it is filled with ""fatigue".
    Consider these strange things:

    1. I drive in the left lane I "feel" better when I drive in the center lane or worse yet when I am passenger I "feel" worse.
    2. I drive to school by myself, go class I "feel" better, when I come home I crash and "feel" worse.
    3. I have started my back workout I am never tired doing it and never feel fatigued. I stop exercising I "feel" worse.
    4. I eat a meal I "feel" great, I stop eating I "feel" waves of fatigue.
    5. On a boring day at home, I "feel" waves of fatigue, if I am engaged in a intense (say) video game I "feel" better.
    6. I've traveled long distances to a doctor or test, never "feel" fatigue at all, hop in the car to come home I "feel" fatigue.
    7. Doing something mundane like shaving, or (god forbid) read a book for an hour I "feel" worse.
    8. Of course the physical symptoms other than these waves of fatigue are temperature intolerance (chills and hot flashes), and a horrible startle response (drop a book I literally will start crying).

    I could go on and on, but the essence of this is that I don't feel anxious but there is clearly an underlying anxiety. My body doesn't send me signals that I have a real illness, but I "feel" fatigue nonetheless.

    So mind-body diagnosis....by exclusion????
    Thanks for reading.
    Last edited: Jul 29, 2018
    Lizzy likes this.
  2. Ellen

    Ellen Beloved Grand Eagle


    What stood out for me as I read your numbered list is that you are feeling symptoms when your mindbody isn't engaged. Have you read any of Sarno's books? His theory is that our TMS symptoms serve as a distraction from thoughts/emotions that our unconscious doesn't want us to feel or think about. You could possibly benefit from exploring what those thoughts/emotions are. Have you tried the Structured Education Program which is free on this site? It would support you in doing this.

    I think most of us have come to a mindbody diagnosis after we have excluded all other diagnoses. So you are not alone there.

    Welcome to the Forum! Keep sharing and asking questions. We're all here to support one another.

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