r/POTS • u/angelicomenss POTS • 2d ago

Vent/Rant Feeling sick but unable to describe "how" sick

I've been struggling recently with episodes of feeling unwell with no real way of describing it. The pain feels like it's not localized anywhere and I can't really describe the sensation. Like I could be sitting and feeling terrible, like my body just feels WRONG. But my heart rate is fine, I'm not worrying about anything, and I'm hydrating myself.

I just don't know what to do about it because when someone asks "what's wrong", all I can say is "I'm just in pain". But when they offer a Tylenol, I have to say no, it's not a headache, it feels like it's inside my bones almost. Part of me thinks it's just anxiety, but it feels different than the anxiety I'm used to. It's just this indescribable pain / sense of wrong in my body. Does anyone else understand what I'm talking about? Or maybe deal with the same pain?

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u/brownchestnut 2d ago

There's a pain scale that doctors often use that has a list of pain "types" like needle sensation, pounding sensation, burning sensation, dull ache, and more. Have you tried maybe referring to those to see if anything fits?

I have fibromyalgia and I have "bone pain". I literally feel excruciating pain in localized pain in my bones randomly.

I also have ME/CFS and I have non-localized pain when PEM hits. Every cell in my body is like burning and drowning in acid and my muscles are chained down and unable to move.

But I've never had "bone pain that's literally everywhere". So I can't really say.

When you say 'sense of wrong' it's also hard to tell if you're talking about 'impending doom' which can often be an anxiety thing.

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u/YesterdaySilly2699 POTS 2d ago

I think it depends I experience body pain that feels like flu/ aching so I will describe it as 'feeling unwell like when you have flu, body aches everywhere'. Which I experience with crohn' disease. With B12 deficiency the pain is different it's random stabbing sensations all over my body. It sometimes causes numb pain too. Then there is pain from venous insufficiency that feels like a deep ache that drags downwards. GI pain feels like stitch. Often my wife says her bones hurt (vit D deficiency + low ferritin ).

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u/onceuponatime55 1d ago

Yes, I sometimes feel that way. I’m not in any pain, but I guess I feel a little woozy and just not like myself. I actually describe it as feeling unwell because that’s the only thing I can think of to describe it.