Bizarre illness, doesn't make any sense to me — Scope | Disability forum
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Bizarre illness, doesn't make any sense to me

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.

Comments

  • mikehughescq
    mikehughescq Member Posts: 7,538 Disability Gamechanger
    We’re not medical experts and cannot give medical advice. However, I’ve heard worse descriptions of anxiety.
  • Ross_Scope
    Ross_Scope Posts: 5,005

    Scope community team

    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?
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  • unexplained281
    unexplained281 Member Posts: 3 Listener
    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.
  • unexplained281
    unexplained281 Member Posts: 3 Listener
    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.

  • mikehughescq
    mikehughescq Member Posts: 7,538 Disability Gamechanger
    I posted as I did because for reasons I won’t specify here I had exactly these symptoms and had all manner of worries about them. Ultimately it was anxiety. Your post reeks of exactly the kind of overthinking which got me briefly into that mess. 

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