At my wits end being dismissed

[Wheezycheezeball]

I’d really appreciate some advice, support or just a handhold. Sorry it’s long.

tldr: heart and lungs being weird and nobody knows why.

I’m 47 with two young kids, was
fairly fit until last September when I had covid and it’s all gone downhill since then. I’m in Scotland so no long covid clinic and no one knows how to treat it. Not wealthy enough to afford private healthcare.

I’m at my wits end. I’ve been having mild chest pains on and off. I’ve been in and had X-rays and ecgs (all fine) I’ve had blood tests (all fine), sats are between 95-99%, lung function good. I take so much reflux medication im surprised my body can digest anything (I don’t really have bad reflux symptoms but they wanted to rule that out). My gallbladder is fine and I’m guessing liver too as I had an ultrasound. My lungs and bronchial tubes are clear but I forever feel like I can’t get enough air in, like there’s pressure low down towards bottom of my lungs between my breasts. This happens for a while then I’ll get a few hours where it’s not happening and then it’s back to the pressure. It happens in my sleep (wakes
me) as well as while awake during the day. I get breathless with very little exertion and my heart rate shoots up to exercise levels doing basic things like getting out of my chair or walking up the stairs. The thing is i can slowly walk up the stairs and have a heart rate of 145 then 85 next tîme. I get lightheaded quite a lot but not full on dizzy. Resting heart rate has increased from approx 54 to 64 once the past year. Blood pressure usually ok but was slightly raised last visit but the dr put that down to white coat syndrome.

i have terrible fatigue all the time.

I do small periods of meditation during the day and it almost seems to get worse when im relaxed.

I showed all the above to the last two GPs and put on statins (my cholesterol is normal I’m told). I’m now just waiting for what’s next.

I’ve been going to the GP quite a bit recently as it’s gotten worse (and have been in a&e twice) and they just sent me away & told me to get a smartwatch.

Something isn’t right. I have no idea what isn’t right but I know it’s not right. It doesn’t feel right but I get the feeling now the dr doesn’t believe me.

I don’t have health anxiety or even regular anxiety although this past week I’m starting to get wound up at being ignored and not knowing what’s going on. I wish it was bloody anxiety.

I do have an autoimmune inflammatory disorder but I have zero inflammation showing in my bloods so rheumatology say I’m technically in remission and this problem nothing to do with them.

I’m not sure there are answers mumsnet can provide i just needed to get it off my chest (ha) and who knows maybe someone will have some ideas on what I can do to improve the situation.

It’s very rare and I don’t want to name it in case it’s outing. It’s a form of vasculitis

Thanks. I can’t boost my immune system as I have an autoimmune disorder that requires suppression. Catch 22

Love iron/ferritin? The “normal” ranges are far from optimal!

I would be going back to your Rheumatologist and making a fuss (easier said than done I know!) and get them to investigate further. The thing with autoimmune is that symptoms can often be present for a long time before tests show the issue, as I know from my own experience - also have a very rare autoimmune condition.

Have you had a 24hr ECG?

Bit of a left field suggestion, but have you had a test for sleep apnoea? I have a complex medical history + surgical menopause + fibromyalgia. I felt like my heart was going like the clappers constantly & felt so breathless & like I couldn't get a deep breath.
My husband noted I was not breathing properly in my sleep.
Diagnosed with severe obstructive sleep apnoea & my life has been totally transformed using a CPAP machine at night. Lots of people struggle with CPAP but I bloody love it!
Might be worth asking for a sleep study ( they just give you a machine & breathing monitor & then give you results.)

So I should have come back to update. Apologies leaving it so late.

Turns out it was just plain old covid. Not one person thought to test and when I did at first back at home, it was negative. I didn’t test positive for 3-4 days after the a&e event when I must have been merrily spreading my germs with all the sick people in there. I received anti-virals and have been unwell since with various bits of my body in meltdown but the chest pains have gone.

It wasn’t anxiety. I’m not an anxious person. It’s not peri-Menopause, my HRT has that well under control. It was Covid that not one doctor thought to suggest or ask me to test for.

The prolonged symptoms they say are long covid

It's what long covid is like for me. First time it took 14 months to recover. About 4.5 months in the second time, don't know how long it'll take to resolve.

Really sorry to hear that OP, long covid is bad enough without AI issues too, but at least you now know what you’re dealing with.

I suspect my vasculitis was caused by covid - also a rare type and when I had covid again even with anti viral iv it definitely exacerbated my symptoms like I was flaring but without massively raised crp. Can you ask to be referred to a long covid clinic?

How are you feeling now? I am having a similar issue but with prolonged v sore throat and lack of energy and getting passed from pillar to post