Bizarre illness, doesn't make any sense to me — Scope | Disability forum
Please read our updated community house rules and community guidelines.

Bizarre illness, doesn't make any sense to me

Options
unexplained281
unexplained281 Community member Posts: 3 Listener
in Rare, invisible, and undiagnosed conditions
I have this strange illness I don't know how to explain. I go back and forth between thinking it must be physical, and thinking it must be psychological. It doesn't really seem to 'fit' either model of illness. It shouldn't exist.

The main feature of this illness is that I experience stomach pain, nausea, shortness of breath, feelings of being overwhelmed, and an absolute need to stop whenever I attempt or even think about doing something I don't completely, 100% want to do. This means I can't even do work of my own choosing, that I'm motivated to do and want to accomplish for the rewards, such as studying a foreign language, if there's any part of me that doesn't want to do the work.

On the other hand, if I do find some kind of task where I truly enjoy the process and fully want to do it, I enter a state of 'hyperfocus' and it's like my mind latches onto it and squeezes tighter and tighter and it's really hard to slow down and stop or do something else. It can be pleasant at first, but then it becomes too much and gets unpleasant.

If I try to push through the physical pain that I get when doing something I don't completely want to do, my illness gets worse for days or weeks (and possibly permanently). Worse meaning I can be symptomatic even at rest, the symptoms are more easily triggered, are more intense, and last longer. My illness also has been getting worse over time.

I also have general fatigue and weakness, along with brain fog, orthostatic intolerance, overactive bladder, fasting hypoglycemia, and nasal congestion. I've seen so many doctors and specialists and had many tests done, but they haven't found anything significant.
But my illness is so severe that I can't work, can't enjoy hobbies, and can't have a social life.

Has anyone ever heard of something like this? Because I haven't. It doesn't sound like a real illness. Does anyone have what I have? Or have some idea of what it could be? Some way to explain it either medically or psychologically? If it's psychological, I can't even think of a reasonable explanation.
· Share on FacebookShare on Twitter

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Options
    Hello @unexplained281

    Welcome to the community, it's good to see you join us. 

    I'm sorry to hear of the symptoms you've been going through, it's unfortunate that doctors haven't been able to help you at all when I imagine you just want some answers at this point.

    When was the most recent occasion that you visited a GP or specialist? Were they able to provide some advice about how you could manage your condition, despite not being able to diagnose anything?
    Online Community Coordinator

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Did you receive a helpful reply to your discussion? Fill out our feedback form and let us know about it.
    · Share on FacebookShare on Twitter
  • unexplained281
    unexplained281 Community member Posts: 3 Listener
    Options
    Username_removed said:
    We’re not medical experts and cannot give medical advice. However, I’ve heard worse descriptions of anxiety.

    Thank you for responding. I agree that it sounds like anxiety in a way. But the specific pattern of it is odd, even for anxiety. I've never heard of anyone having anxiety like this in response to doing things they don't completely, 100% want to do. Also, anxiety that is disproportionate and has a specific trigger has to come from somewhere. There would have to be some kind of past trauma that it's linked to. But that doesn't seem to be the case here. It's also unusual for trauma triggers to take such a vague form, it's usually something more concrete like a song that was playing at the time of the traumatic event.
    · Share on FacebookShare on Twitter
  • unexplained281
    unexplained281 Community member Posts: 3 Listener
    Options
    Ross_Scope said:
    Hello @unexplained281

    Welcome to the community, it's good to see you join us. 

    I'm sorry to hear of the symptoms you've been going through, it's unfortunate that doctors haven't been able to help you at all when I imagine you just want some answers at this point.

    When was the most recent occasion that you visited a GP or specialist? Were they able to provide some advice about how you could manage your condition, despite not being able to diagnose anything?
    Thanks. I visited a specialist yesterday. They just referred me to another specialist. I'm also seeing a therapist, but it doesn't seem to be going anywhere.

    · Share on FacebookShare on Twitter

Brightness

Categories