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

Obviously mental health getting worse as a result.

thankfully I’m not a parent. (Maddie is our family dog)

So no dds? I’m confused!

I told you it was typo in previous post?

I thought the typo was that your daughters were looking after you.

How is your marriage holding up? Is your husband supportive?

I think you need a referral asap.

The tricky bit is knowing who to ask to be referred to. I would probably ask for a vascular specialist or cardiologist. They can always refer you to a colleague if they think it’s not their area.

The important thing is to get past the GP and seeing specialists.

PS Caffeine is a vasodilator - if it helps your symptoms then that suggests there is a problem with your arteries/veins being constricted or your heart not pumping strongly enough, which I why I suggested cardio or vascular

Why about nicotine? Do you smoke or vape?

No

and never have

You need to check all the mineral and vitamin for deficiencies. It sounds an awful lot like a sodium or potassium deficiency.

Can't offer any advice. But this sounds awful.

Please go to the GP and ask for a second opinion.

Autonomic nervous system dysfunction

This is a real long shot.. so pressure on spinal discs is highest when sitting… then less standing and less again when laying. I’ve looked up which nerve roots contribute to heart rate and apparently it’s T1-T5… so maybe a sitting mri to look for compression of the sympathetic nerves?
Would have to go private for it though I suspect. This is probably a shaky on the science but just trying to think why symptoms are worse when sitting…

Definitely sounds that way and vascular with the pooling, I asked re nicotine as it act similar to caffeine to constrict vessels and eases symptoms. Hope you get some answers OP sounds absolutely miserable for you

Get a 7-day ECG - I just had one - it’s no biggie as just one wire. Mine was through nhs but you can get one done through a private provider (you fit it at home - bit fiddly but ok).

Just reading quickly on a break but I would also suspect POTS with overlap of either long covid, MEcfs, or MCAS. Could be one or a combination of these but you need tests, if only to rule anything else out.

So sorry. Sounds awful.

It's nervous system disregulation in some form I would guess.

Do you have any hypermobility, OP?

Yes,

beighton scale 8

they recently gave me a 3 day one but I had unusually good few days without symptoms and they didn’t catch anything

after taking it off symptoms started again.

will ask for 7 day one

Have you looked into Ehlers Danlos Syndrome?

Although I think you need face to face testing and consultation I know that in many areas a.t.m the waiting lists are very long.

In the meantime it might be worth having a look at this website to try and determine whether any of the conditions Dr Gupta discusses fit with your symptoms.

Dr Gupta is excellent. He has been my Cardiologist for 8 years and was the only Consultant I saw (out of 4) who was able to diagnose and successfully treat my unusual heart condition.

He does see people privately, although even then he has a long waiting list. But actually he uses his website to share a great deal of useful information about various heart conditions.

It might be that something there can point you and your GP in the right direction.

https://drsanjayguptacardiologist.com/postural-tachycardia-syndrome-pots/

Honestly, I don't know, but years ago I had a friend with Ehlers-Danlos who suffered from dysautonomia and some of the symptoms seem similar to yours. Onset was late 20s / early 30s.

Sorry, sounds like a nightmare.

I would also push for a longer home ECG so that it hopefully catches it. Did they check your blood for d-dimer? I would check that as it’s used to rule out major blood clots.

have you looked up ME/CFS? If you think it might be that, you need to try and rest as much as possible as any exertion could be making it worse.

No it isn't. Caffeine is a vasoconstrictor.

OP, I'm also wondering if you've got some sort of dysautonomia? One of my DC has it. Do you have private healthcare? I can PM you the details of their cardiologist if you'd like it. He can also refer on for autonomic testing.

Yes please