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

I would look into SIRPA for support with your symptoms. Obviously continue with medical investigations but stress, past trauma and also fear about the symptoms themselves can exacerbate them and perpetuate them.

Really really struggling.

no I don’t live alone.

dh, 2 in law dds being helping me and my mum too. Don’t know what I’d do without them.

on bad days I don’t leave at all on good days I always try to get out the house and go for walks

i dont agree with this at all, everyone is always quick to dismiss us women with trauma and anxiety etc

how are your periods OP? do you have swelling issues in the abdomen? i only ask because fibroids can be the WORST and can cause all of the symptoms you have mentioned too.

they press on internal organs and can cause all sort of issues especially when eating and sitting and bending down etc

After eating

How old are you?

my periods are very bad. Excruciating pain. Tried many painkillers prescribed etc

my stomach looks distended and big constantly too

You have unexplained symptoms and your heart rate is too high. You need to go back to see your GP, preferably a different one if the current one is leaving you dangling without any potential diagnosis and has no planned tests or referrals. I’d make an appt with a new GP tomorrow and push for a referral for further investigation. Hope you get on ok x

Age is important

OP i would go to A&E with that heart rate and blood pressure.... I know you have seen the GP and they have found nothing, but it would help if they can get an ECG done while you are having one of these episodes! Hope you get some answers.

28

get a scan! i guarantee you theres a large fibroid in there causing all this. mine was ruining my life for YEARS 😩your symptoms make so much sense. and if it degenerating pain is unbearable. good news is fubroids are benign and when they take them out you get your life back!

Might be worth getting an MRI

You really can't live like this. As pp said demand answers. Women need to be listened to and not fobbed off.

You have had blood tests, what were they for and were the results borderline or just within the limits? Sometimes blood tests are deemed "fine" but are on the lower end of normal. Ask for a pelvic scan and whatever else might be needed for your period issues. And so on. Others might be able to give you a list of possible tests you could ask for, since your GP appears to be asleep at the wheel on this one.

Sounds awful, I hope you get some answers and treatment. Don't delay ring GP tomorrow.

So your blood pressure is very low and your heart rate is very high.

You actually might need to go to hospital.

is it always like tbjs?

Yes. Almost always

by the time I get to hospital I’m better they can’t find anything. Heart tests just said sinus tachycardia they don’t know why

My intention was not to dismiss at all so I apologize if it came across that way. I absolutely think that she should continue with investigations, but if the investigations keep coming back normal then its definitely worth considering if nervous system dysregulation could be contributing to or causing the symptoms. There are plenty of men and women who have inspiring recovery stories using the SIRPA approach for medically unexplained symptoms. The OP should check out their website and also Living Proof website if she wants to learn more.

Is your heart rate this high because you have said you drink 2-4 coffees when you eat a meal ?

whats your weight and height? (Numbers helpful here)

Maybe ask gp for a 7 day heart trace to track the variation across the day. Match in with regular BP reading before and after food

Have you had an early morning blood test for Cortisol to rule out Addisons Disease? Worth mentioning to GP if not had already.

It can be, some people are really disabled by it. Low blood pressure and high heart rate can happen after eating when you have pots due to low blood volume. It mostly only happens to me after a big meal but when my pots is flaring up it can happen after snacks too.

Obviously it might not be pots but a lot of what you are saying really is textbook abiet on the severe side. Have you tried any of the pots remedies like compression stockings and electrolytes/salt?

And your DDs are helping you? presume that was a typo!

I missed how long you’ve been like this? Surely you can be signed off?

Now This is the most bizarre thing!! It goes down after I drink the coffee. This is the only thing that relieves these symptoms. It goes back down to normal.

this was confirmed by in clinic test also

this lasts hours, hours of high heart rate and horrible symptoms if I don’t drink the coffee.

How is sleep?

Yes typo** sorry

For over a year.

im very lucky to be working from home so don’t need to be signed off

sleep is good

You have been living with zero quality of life, unable to parent, reliant on others - for a year?? How is your mental health?