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Struggling to Get a Proper Diagnosis for My Chronic Illness

rylesmcgyles

461d

i’ve dealt with POTS and chronic fatigue symptoms since i was 13 years old, and for reference, i’m 20 now. i’ve seen all kinds of doctors who used to preach about my eating and exercise habits, even after i explained that i used to be a very active kid until this all started to set in. and now, as i’m still trying to find a doctor who will listen to me, they skirt around the word POTS and instead just describe it and give me all recommendations POTS patients are given (compression socks, increase salt intake…), but it’s discouraging that they won’t give me a proper diagnosis. without a proper diagnosis, i have trouble using mobility aids when i need to because i feel like i “shouldn’t” be. i have trouble talking to others about it because i don’t want to come across as faking it. and overall makes accommodating myself extremely difficult because of self-doubt. this post is mainly ranting, and sharing my experience hoping maybe someone else is feeling the same thing.

4

6

6

Recurrent Syncope

Abdominal Distention

acute lethargy

Postural Orthostatic Tachycardia Syndrome (POTS)

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Top reply
    • goldstar

      461d

      I'm in a similar situation. Though I haven't been dealing with it as long as you have. I constantly feel like I'm just faking it, but then I push myself to far and definitely feel it. I haven't passed out, but I feel the fatigue, the brain fog, the digestive issues, dizziness, and weakness. My Dr says to loose weight to help symptoms.. I have thyroid issues, PCOS, and orthostatic hypotension as well as POTS. I can't exercise without my vision going black. So loosing weight feels impossible. And when I do manage to loose 10lbs, my symptoms seem to be worse.. I had to quit my job, because stress, good or bad, also triggers episodes and that was dangerous as an EMT. I don't know what I'm supposed to do to feel better

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    • Heatherbee

      461d

      I told a doctor I believe I have POTS because I match all the symptoms including heart rate jumping by 40 bpm when I stand, and she goes, "You know that's a syndrome right?" Like, yes. You know people have it right?

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      Reply
      • LixiKat

        460d

        @Heatherbee some dr thinks it’s made up I have one dr tell me my fibromyalgia diagnosis is just something my original doctor made up because she couldn’t decide what it was that was causing me pain I left that dr immediately

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    • LixiKat

      461d

      It will get better keep vouching for yourself don’t let those dr tell you anything

      0

      Reply
    • LixiKat

      461d

      Can’t say I don’t understand It’s a struggle

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      Reply
    • CoffeeAndDogs

      461d

      Being young and ill is challenging. Doctors really aren't very helpful or supportive. It took me 3 years and literally taking my insurance company to court to get an official diagnosis and authorization to see an autonomic specialist. I track my BP and HR at home. See if you can get them to agree to a 14-21 day heart monitor that will at least get your foot in the door as to recording symptoms. Then look for autonomic specialists in your area. Dysautonomia International has good resources.

      1

      Reply
    • goldstar

      461d

      I'm in a similar situation. Though I haven't been dealing with it as long as you have. I constantly feel like I'm just faking it, but then I push myself to far and definitely feel it. I haven't passed out, but I feel the fatigue, the brain fog, the digestive issues, dizziness, and weakness. My Dr says to loose weight to help symptoms.. I have thyroid issues, PCOS, and orthostatic hypotension as well as POTS. I can't exercise without my vision going black. So loosing weight feels impossible. And when I do manage to loose 10lbs, my symptoms seem to be worse.. I had to quit my job, because stress, good or bad, also triggers episodes and that was dangerous as an EMT. I don't know what I'm supposed to do to feel better

      2

      Reply

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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