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.

Stop the reflux medication!

If you don't have any signs of reflux why are you taking it? It's prescription medication and has side effects. If they want you to take it ask for a camera down your throat,

Why are you going to be sacked?

Some of those symptoms remind me of a relative who had long COVID, particularly the palpitations. The good news is that after 9 months they gradually recovered. The bad news is that 9 months is a long time. It is worth having a Google about long COVID and the research that is being done, there was a promising study about taking concentrated fruit nutrients that I remember reading.

I'm so sorry, it is awful and it doesn't help feeling like you are being dismissed. I hope you find answers.

It does sound like long covid and that can take a very long time to get over.

Breathing wise, if you sats are good but you are still breathless then you might have learnt bad breathing. It takes a while to consciously correct but it does work. Focus on belly breathing and telling yourself that you are not really out of breath and calm your breathing as much as possible. You can get better instructions online.

I read somewhere that covid can cause micro scaring of the lungs, too small to be seen on a regular CT scan, which might explain your symptoms, they do heal but take time.

If it is long covid - there is no quick fix.

Lots of it sounds peri menopause and you’re the right age:

palpitations
fatigue
Random non cardiac chest pains
dizziness

and about 50 more things. I never realised it could actually make you feel properly unwell. No point asking for a blood test to check as they’re useless in peri when hormones fluctuate by the hour!

I have had similar for 12 months, escalated after COVID vaccine. Lots of palpitations resulting in episodes of fast atrial fibrillation (which have been ablated) but now looking into investigations for inappropriate tachycardia.
Heart rate 126 brushing my hair, 110 walking slowly between rooms, 117 chopping food!. So bad last year I couldn't shower or get dressed without keep resting despite being on beta blockers.
Already on HRT.
I'm due to step down off my anti arrythmics next week so will be interesting to see what happens.

Thanks all.

i take the reflux meds because they felt the pain I experienced was stomach related and wanted to rule that out before doing more research.

I’m already on HRT for peri symptoms. I’d be surprised if they got worse on the HRT than they were off it.

I’m not looking for a quick fix for long covid or even answers as per my OP. I’m wanting reassurances that nobody here can provide that this isn’t going to get worse and I don’t end up with copd or heart disease that will kill me while I still have young children. They’re already suffering because of my constant ‘illness’.

Just an update - my breathing got more painful and I was breathless too easily and everything felt heavy so I was persuaded to go to a&e. They’ve done a load of blood tests and ecg and X-ray but I think im
just being sent home. I’m wondering if I have pleurisy - feels similar to last time. The young doctor was so bored he didn’t give a crap what I was saying. Had no interest in the fact I have quite a complex medical history that could affect what I have and why I have it. It’s really busy and I don’t want to waste their time and It’s good to know it’s not likely to be life threatening but what the hell is it? it burns to breathe, I’m so dizzy. I don’t want to kick off and stay here
longer than necessary but I don’t want to be left living like this for however long it takes to go away. It’s been about three weeks now. Always covid negative

I'm sorry to read this, OP, and hope you might be a bit better today.

I'm sorry to hear also about the bad experience you had with the hospital doctor. Don't ever think you're wasting their time. You're not. I hope you begin to get somewhere.

Sounds like post viral fatigue/ long covid to me - i have it
Diagnosed last month

Yoga ? Healthy eating .
Rest. Relax

I had 2 weeks of solid rest late June which helped

You do sound like you have anxiety, which manifests itself in physical symptoms. I remember in my 40s feeling very much like you. I also had needy kids, a high pressure job, perimenopause and little family support. I was convinced I was going to drop dead from a heart attack on a daily basis!
You’ve had loads of tests - if you’d got a dodgy heart, it would have been picked up.

How are your periods? Are they heavy? If so you might be anemic and a good multivitamin with iron and a high dose of B12 wouldn't hurt.

But to me this sounds like seasonal allergies, right down to the difficulty drawing breath. Covid made mine somewhat worse. I had mild asthma as a child and this might also contribute. I would try taking a daily antihistamine (also used as a treatment for long covid, probably fexofenadine) and maybe also a steroid nasal spray and see how you go while waiting for other results. If you don't sleep well then you could try Piriton instead at night or even Nytol (sold in other countries as an antihistamine primarily).

On Twitter have a look at @remissionbiome

The women running it post their progress with long Covid/ME-CFS.

remissionbiome.org/

Get HRT. Read the louise newson menopause book.

Read the OP's three posts before posting. She's on HRT.

@GardeningIdiot - sorry!!!!! Only trying to help.

It's not very helpful telling op to do something she's already doing .

I'm aware of that. I have apologised? FFS!!!

Hope you're ok @Wheezycheezeball did you get home last night?

Op, ignore those saying anxiety, I'm exactly as you describe, it's truly horrible. Long covid I'm afraid. First time I had this it took nearly 2 years. Now here we go again. 3 months and counting.

Why, if you have no reflux, are you taking medication? Why did you start statins if your cholesterol is ok? Stop them. Although, stopping statins abruptly is not the most pleasant thing in the world. But you must stop taking medication you don't need. GPs, who prescribed them to you are idiots.
Your symptoms of shortness of breath are v similar to my DM's after her second dose of vaccine. You had covid- so it might be connected. DM has ended with pacemaker. Other symptoms she had: tiredness and swollen legs (one much more than the other).

It could be hypertension, high blood pressure, anemia or peri menopause among a whole host of other thing. Insist on a proper examination OP

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

Can I ask what AI disorder it is that you have? My Rheumatologist also said this to me often and dismissed there being any concerns, as how could there possibly be when all my bloods were ok? Despite me feeling so unwell and repeatedly telling them that I knew all was not well. I eventually ended up very ill in hospital.

It does sound very similar to my husbands reoccurring long covid.

He has mostly recovered after 18 months.

After doing lots of reading we system giving him max dose of aspirin as an anti inflammatory (he can't have ibuphrophrn) and also a daily actimel (the immune support one) i had researched that there were a few things that had shown to help with long covid (vit d, zinc, Probiotics etc) and this actimel had most of them.

Obviously its possibly a coincidence but he hasn't had an episode since he started before Christmas. Its harmless if not.