Another heart issue scare: Welp! After pain on and... - LUPUS UK

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Another heart issue scare

Silvergilt profile image
8 Replies

Welp! After pain on and off in my left shoulder and chest for a few weeks now (yeah I know, but when the only advice I get from my GP is 'lose weight' I'm not really sure what else I can do), I had to call 999 last night. Thanks to cuts in the UK, the ambulance never arrived - they were queued up in both hospitals near my area, and the first responder only showed up 45 minutes later. Thankfully whatever-it-was eased off after gas+air, a spray under the tongue and an aspirin, and I opted not to go to hospital - all they'd do would be to give me a blood test and I can do that at the GP this morning.

Honestly not sure what else can/could/should be done. I can't tell if what's going on in my shoulder is due to a joint issue, or if there's something else going on. Also, considering if things had been serious I'd have been dead before any help arrived, I'm not sure bleating to 999 every time my chest gets locked in a vice will do any good. I know technically I should call in case there's an issue like that, but when I know there's one consultant on the other end more than happy to tell me I'm a waste of taxpayer money and resources (yep, that's been a thing), I'm very reticent to call again.

Not really sure what to do, really. I suppose this is how illness gets us in the end.

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Silvergilt
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8 Replies

How scary for you. So did the first responder have a scoobie what it could be, once they had ruled out a heart attack?

I don't like to worry you more but my late dad had a silent heart attack and the gp who responded eventually to my mum's call -tried to get him upstairs to bed 28 years ago. He was totally out of it and incoherent and vomiting with diarrhoea and yet the gp thought it was Noro virus or something. In the end my mum persuaded him to call the Ambulence - and this was in the middle of the famous 80s ambulence strike and they lived in London. Long and short of it - massive heart attack and the ambulence guys saved his life - although they had to break through a jeering picket line into the hospital! Later both my parents died from sudden cardiac arrest - both with early stages of vascular dementia as tell tale sign. Hence I expect a degree of confusion/ incoherence

I am horribly ignorant of what warrants an emergency but I suppose I would look out for incoherence and nausea etc as well as excruciating pain? Could yours be checked out now with a gp asap? When Hubby called gp out in 2015 twice in one week for first time vomiting bile and in excruciating pain in my left ribs and flank - they gave me diamorphine shot and antiemetic and put me back to bed saying cholecystis (it was the wrong side for Pete's sake?!). Then two days on another gp was called out by him for stroke like symptoms and they reluctantly sent me in with hubby to a&e. Turned out my crp was 160 and I had Pancreatitis from Aza - three times before anyone made the connection. My faith in medics identifying things like heart attacked and Pancreatitis isn't great either! I was admitted once with chest pain turned out to be costochondritis about four years ago. Could this be a contender?

TX

Silvergilt profile image
Silvergilt in reply to

I don't have a lot of faith in my current area, tbh - I've stated before that the current practice I'm in, the head GP is convinced everything is down to my obesity and though I've tried to get to the bottom of my weight issues (because no one asks how much - or how little, tbh - I eat), he believes I'm lying. My high blood pressure recorded at hospital? Well, he doesn't have a cuff big enough for me, so oh well and I'm sure if I just lose weight it will be fine, never mind about blood pressure medication. My main fear last night was being sent into the the A&E as there is one consultant (not any of the others, just one) who is convinced I'm a drug seeker. I've gone in with excruciating pain before, tried to tell him I had seroneg RA and he called me a liar, gave me over the counter paracetamol and told me to stop wasting taxpayer's money on non-emergencies...

Sooooo, yeah. I'm kind of resigned and sanguine. If I go, I guess I go. I'm doing my best to address things like the specialist appointment I have at the end of the month for vascular EDS, and if that diagnosis gets added onto my notes maybe it will be taken more seriously. But I am trying to move out of area and if I'm very very lucky I'll land up with a new team that might listen, and a living situation where I will be able to go to a clinic or whatever if I need to (I have my ASD son here at home and I had to call his father last night - whose grand plan was to either have neighbours I never speak to have my son overnight, or deposit my son at his school somewhere around midnight because my ex's 'job is important and he can't miss work' ....yeah, this is my life). If not...well, then I'm making the most out of life regardless.

in reply to Silvergilt

Sounds like a horrible and very unsupportive world you live in Silverglit. Why is anorexia helped by the NHS but obesity doesn't seem to qualify for anything but blame? It makes me mad - I'm not skinny either and my belly makes me very apple shaped which I know puts me at risk. Probably like you, I'm very careful about what I eat, but some of us are just badly designed! Our brains and minds are **** hot though and poor design has never held Stephen Hawkins back has it?!

So doctors should be endeavouring to help you address obesity by finding the cause rather than endlessly blame you for it - there's a great character there who needs protecting and nurturing and they should see it as their job to help not wash their hands of responsibility for your ongoing health problems - it's bizarre?!

Silvergilt profile image
Silvergilt in reply to

I've asked to even trial hypothyroid medication (every woman on my mum's side of the family for three generations is hypothyroid - my mum developed a goitre before any doctor finally picked up on it). Again, no can do. There's a distinct drive against 'overprescribing' of late (with a fair bit of sniffing about the 'American' tendency to investigate things) but if it hadn't been for a consultant in hospital who had done part of his practice time in the US, and was therefore willing to investigate my symptoms, no one would have picked up on my inflammation levels and blood circulation problems at all. I guess arguing for the right to treatment no matter what the scales say will just be part of the battle for me from henceforth.

Anyway, I'm doing what I can with the knowledge I have to try and bring my blood pressure down (increasing magnesium, doing yoga, etc), but the Dutchman is adamant to get me out of the rural area now more than ever. He could have tried to get me to a hospital himself last night if we lived together, and cover for my son would have been easier too.

in reply to Silvergilt

Have you been checked out by anyone today? Your story makes me feel positively lucky to have been diagnosed many years ago with Hypothyroidism and then misdiagnosed with RA and now Sjogrens and treated for hypertension. There have been many battles on the way as you probably know and I've found staying ahead of the game with fierce letters and sometimes being more knowledgeable than my doctors has really helped. Best of luck with getting to live with the Dutchman!

Silvergilt profile image
Silvergilt in reply to

No I haven't. Thanks for the well wishes though! I'm feeling better so I guess there's that, and I'll just see how I get on.

whisperit profile image
whisperit

Ugghh, sounds horrible. One explanation is that we don't fit easily into the structure of the system - we have a complex chronic illness punctuated with rather frequent crises.

Our specialist consultants can do the complexity but not the acute crises, and A & E can do the crises but not the chronic complexity.

Meanwhile, GPs can do a first response, but not the complexity.

Given the amount of time most of us put into understanding our condition, it's sad that so few medics seem able to simply say, "OK, what do you want me to do?"

So no answers from me, silvergilt, only sympathy x

weathervane profile image
weathervane

I agree with all of the above, you do need further medical tests by a specialist, I think you should also get your shoulder x-rayed to rule out any issues in the joint. If your gp is faffing out ask for a second opinion. Best wishes xx

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