Please help! Mystery illness/unexplained symptoms RUINING MY LIFE. SO scared

[maddiesmummy1]

1. i can’t sit!! Specifically sit up for more than 10 minutes. Feel extremely unwell when sitting/sitting up. Only able to sit if feet up/under me and leaning back/chair has back. Feet also turn like reddish purple and like swollen when I have them down sitting down. Im very luck to work from home and able to lie in bed or feet up leaning back with back support working. A few nurses years ago and one recently commented that my heart rate is high when I sit up. Not sit, but when sit up.
2. feel very unwell after eating. Cannot stand at all, can’t sit, and need to lie down. For hours confused, dizzy, faint, lightheaded, sometimes chest pain. Feel heart race. Even after small protein snack like one boiled egg. What’s weird is This is relieved by drinking 2-4 strong cups of coffee with every meal or snack. But this is not postpandrial hypotension. A few times when measuring my hr standing up after eating I noticed it would be very high. Up to 160 bpm
3. Often feel physically weak. Difficulty lifting something light, bending down etc
4. there were a few months when walking I would feel like I’m being pulled into ground with great force, like gravity was 10000 times stronger. Body felt super heavy and pulled down into ground. Went away as soon as I sat down. This now went away but im worried it might return.
5. dont know if its related but a few people commented that my face sometimes turns like red/flushing

im 28.
gp run some blood tests which are fine, he doesn’t know what this can be.

please help I’m very depressed and scared. What can this be

Do you work? Live alone?

POT’s? Have you had a tilt table?

A close family member pf mine has recently been diagnosed with PPPD and has similar symptoms. Hope you get some answers soon

Is this recent?

POTS?

Doesn’t pots cause symptoms standing up though? Mine is sitting down. I can’t sit for long

Overactive thyroid

What has your GP said? Have you been referred to a cardiologist?
POTS?

Doesn’t that cause symptoms standing up though. Mine is inability to sit for long

I had a tilt table, not pots

Some pics

What is your BMI, OP?
Before you became ill, how many minutes of exercise did you do each week?

Have you had antibiotics, when my mum had an undiagnosed infection she could not sit up, kept falling backwards when seated and it took ages for them to discover it was that. It took several rounds of really strong antibiotics to sort it.

normal weight.

I was very active.

also would be in the gym 5/6 days a week 45-1hr a day. This was sudden. Like one day woke up and couldn’t sit.

I continued pushing myself and going to gym and it worsened my symptoms

Pots can be sitting too, the heart rate shift. If your tilt table was negative though it seems unlikely

So standing is fine? Hope you get some answers, OP x

How are you managing day to day? Do you live alone?

Pots can cause blood pooling in your legs and feet. A lot of people with pots sit with their legs up under them rather than down on the floor if you know what I mean?

As someone with pots I would say that your symptoms are pretty textbook pots.

I would agree too, especially with the caffeine helping

I’m seeing him next week but he doesn’t seem to know.

had some heart tests they just said sinus tachycardia. They don’t know why.

tilt table was negative so I don’t think pots

i was going to say - sounds like dodgy blood pressure and 107/95 is not great. the closer the numbers get the worse you'll feel

I’m very often getting close numbers like this especially when I don’t feel good. Do you know what this could be

just seen about sinus tachycardia comments. get the dr to check your bloods for any clotting issues. i dont want you to panic but i had sinus tachycardia and couldnt wear a bra, couldnt even talk without effort. was coughing, couldnt eat sit or walk shower etc was always dizzy and felt faint.
turns out i had a clot on my lungs. i always imagined i would be having chest pain with it or breathing issues but it ended up being lots of random symptoms and back pain. all good now so very treatable if it gets caught

But can it be this severe/disabling though?

like you can’t sit normally at all, even for 10 minutes?

I spoke to pots specialist privately he said it should be this severe?

I don’t know what the hell id do if it wasn’t for my work from home job where I can sit back with feet under me or lay down.

Are you managing to leave the house?