preface: I understand the concerns of “if you’re having chest pains go to A&E”, please see my previous posts for my experiences. The gaslighting, risks of C19, racial discrimination - unless I’m in obvious danger, it’s not worth it for me.
But I’ve had the GP threaten me today because I was trying to explain how I’m pain I was and was getting frustrated. He didn’t want me there and I’m obviously going to complain.
It’s been 3-4 months. I can’t walk for long. I have completely lost my appetite. I can’t sing or shower. And this is it. Im just supposed to be in pain according to the NHS.
I’ve gone private but I shouldn’t have to. Im so frustrated. And this isn’t a matter of being patient? I just need adequate pain management. I don’t care about the root cause right now. I want my life back.
There’s this quote that says “pain management is suicide prevention” and I see that now.
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Sleepybear987
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Totally understand your frustration, I stopped going to A&E as well as I was always sent away if my troponin levels were OK.
Unfortunately for pericarditis (going by your bio for pericardial effusion) , the pain can last months, and otc painkillers on their own don't cut it. The source of the pain needs to be tackled for the pain to be appropriately managed.
In my case I've been given colchicine, I know of others that have been prescribed steroids to tackle the inflammation.
But if there's more going on with you, it will need further tests maybe, or a different treatment. Did the cardiologist you saw in the private sector recommend anything for you?
I think you’re completely right! I’m starting to realise that nothing they prescribe is going to work straight away. The only thing that worked for me for now was dihydrocodeine and I think that’s because that actually was sorting the heart out, not masking the pain.
And the private cardiologist follow up appointment is tomorrow! So I’m going to try and be as forward as I can. Plus I made a diary of all my symptoms and interactions with healthcare so that it’s easier to relay. Fingers crossed - sending you so much love and thank you for checking in!
I always thought that if you were ill and in pain, the pain could be numbed with drugs, but no that's not the case I have two friends who suffer with severe pain. One is given morphine patches which only dull the pain slightly, another finds that nothing helps her pain. I was shocked because as I said I thought no one had to suffer pain these days. It seems like we just have to put up with it. Unbelievable in this day and age.
I really feel for you, all I can suggest is to see a lady GP, as I find them better listeners and more understanding.
Hey Jean! Thank you for checking in! You’re right, I guess what’s blowing my mind is it’s obvious that meds aren’t working. My GP is not even bothering to find another solution, they’re just waiting for a specialist to tell them what to prescribe. No mind maps, no like “let’s try to figure out what this is, or what’s causing this”. Or even “who are the best specialists to call!”.
Tbh, you’re bang on the money because all my GPs before this year have been woman.👀 so maybe that might be my next step (as well as change my GP as a whole because apart from the receptionist, they’ve really gone downhill!)
Pain Management is complex. Sadly about a third of adults live with chronic pain.
My coronary vasospasms are resistant to treatment.
As a result I live with chronic pain with acute episodes leading to my admissions to hospital from time to time.
My last admission was in February. I was in hospital for 12 days to bring my coronary vasospasms under control and hence reduce my chest pain.
I am treated with IV GTN and morphine.
This is the only time I take morphine.
Morphine is not a long term solution for various reasons. It is addictive and over time you become tolerant of the morphine and need increasingly higher doses of morphine.
I only take morphine when I am in hospital.
I attended a Pain management programme and use various strategies to help me manage my angina pain.
Unfortunately both my Vasospastic angina and Pain Management are not well understood by the healthcare professionals I encounter.
I have a very supportive male GP and Cardiologist.
I really feel for you Milkfairy that must be awful with your chronic pain. Do the pain management strategies you have learnt help a lot?
One of my friends has morphine patches which she places on her back where she had shingles quite a few years ago. People have to take care that they don't touch her there. Both have understanding GP's who are considerate and do all they can and they both also have atrial fibrillation.
you’re right there, I had a really nice lady GP talk to me last evening and actually asked my opinion! My make GP is arrogant, opinionated know all and shouts over me 😡
I use essential lavender oil on a tissue and you can use it in the bath, just make sure you only use 3 drops because it can over stimulate if too many drops. There’s camomile tea that can help too.
Dear You,
I am shocked at your treatment under the NHS, I cannot understand why you haven't been referred to a specialist pain clinic that just deal with pain management.
I am so sorry that you have had to go down the private route just for some answers.
In your main post you point out things that you feel are a negative in going to A&E, one pint of ' racial discrimination ' stood out, which really shocked me because you could not get a more mixed and diverse group of workers than we have in my local hospital.
Totally understand this ,my last visit to a&e I was told maybe I just need to relax ,think of people that are worse off than me ,maybe just go on a holiday & count myself lucky I have access to paracetamol, I've had a severe headache for 6 weeks & supposed to accept that as normal . I'm never believed about anything anymore ,I hope you get some meaningful help & pain relief soon xx
Oh dear. I too am terrified of A&E and won’t go unless absolutely necessary. I don’t want to catch C. Recently had an accident and the top of my thumb is not sticking out at an angle. GP did not want to know and told me to go to A&E. Would not give me an x-ray appointment cos he ‘did not want to get involved!’.
That's terrible and certainly not helpful in any way. Yes, I would have to think I was dying before going to A&E. Mind you if you can get there early morning it's often quieter I'm told.
i have no confidence in my local GPs surgery any more and our A&E is always v crowded. 111 takes forever to phone back. These strikes make things ten times worse. How can waiting lists be shortened with people out on strike and the tick box mentality which appears to prevail. So much makes no sense in the running of our hospitals. Patients not being discharged through lack of porters to take them to the front door, or waiting for the pharmacist to hand over the meds so that the patients can be discharged with them. Rant over (for now)
Many of these complaints need to be taken up with the practice manager-you have to make the complaint to the people who CAN do something about it! GP's are only working a % of the week now, maybe 4,6 or 8 'sessions', thats 2,3 or 4 days a week at most! TBH if we don't complain enough, nothing will be done! In the past before C A&E was visited by people with minor issues, often accompanied by whole families! We are now being told only use it for life and death emergencies-that is what it ALWAYS was for! My surgery states on the website it has a minor emergencies clinic each day, but when I asked about it was told "We are not an emergency service". No-one goes to the GP or surgery unless something is needed, so it IS an emergency of sorts, it's just getting beyond!
Our little local town hospital had a daily A&E surgery, until it was closed down. Most of these smaller hospitals have been closed, so it's no wonder A&E's at main hospitals are so busy!
I've lived with chronic pain for 30 years taking stronger and stronger pain killers until they no longer work. I eventually found a wonderful pain consultant in Manchester but he's now retired so next week I have a first appointment elsewhere. I really don't feel like going as I Know all they will throw at me is gabapentin and amitriptyline which is all I've been offered for 30 years. It took me 10 years to get my first diagnosis by which time the damage was so bad it couldn't be fixed even though I had known exactly what was wrong for all those years. No one would listen- it was quite a rare condition they hadn't heard of. I was treated as if it was all in my head; ignored, called a liar etc. Even when I had an almost correct diagnosis from a neuro surgeon, the pain clinic wouldn't believe him. My GP sent me to 5 different pain clinics and I went to three privately. Now the clinic I saw 20 years ago , I know will lecture me on taking opiates and try to get me off the only thing that helps- in fact it was they who put me on them. It will be a total waste of time. Your GP shoudl be sending you to a pain clinic of your choice, however I doubt it would help much. Pain management hasn't improved at all in the past 30 years.
I completely agree, I mean after being in pain for 4 months and noticing that nobody was even trying to be concerned - I'm starting to gather that it's normal for this to sort of happen. It's sad because it's starting to interfere with my day to day and honestly, I'm determined to try and get better (even if it's not to figure out what is happening, I want to be able to shower and get out of bed).
I think the NHS really needs an overhaul with how they deal with pain because throwing gabapentin at everything isn't always going to help. And they idea of what pain should look like is another thing.
I had chest pain for 1.5 years before my NSTEMI last year. I was consistently told just to take painkillers for it and there was no specific reasons for the pain. Minimal investigations were carried out and needless to say, the painkillers didn’t help and they still don’t. I was later diagnosed with vasospastic angina/coronary artery spasms after my NSTEMI. This perhaps explains the pain I was experiencing prior to my diagnosis.
I hope you can get the correct medical treatment soon ❤️
Thank you so much, and I am sorry it took you a year and a bit to get diagnosed. I am going to start looking into vasospastic angina because the symptoms look bang on the money. It's just hard because like you said, doctors don't want to hear that there is a problem for anyone who is "too young".
I have lived with vasospastic angina for over 10 years.My vasospastic angina was confirmed by an angiogram using acetylcholine which induced my coronary vasospasms. It took a while to find a Cardiologist who understood vasospastic angina and could help.
I now have a very supportive and empathetic Cardiologist.
Originally I was told I was too fit, too young and being a woman I couldn't have a heart attack or angina. The term Myocardial Infarction non obstructive coronary arteries MINOCA, now tends to be used, if you have had a heart attack without blocked coronary arteries.
Despite the input from world leading experts in the condition, my vasospastic angina is sadly resistant to treatment.
It can take time to find the best combination of medication that will work best for you as an individual.
I am top doses of calcium channel blockers, nicorandil and isosorbide mononitrate.
I end up in hospital at least once or twice a year for treatment with IV GTN and morphine to stabilise my coronary vasospasms. I also experience ice pick heads and sensitivity to light and sound with my coronary vasospasms. The only time I am completely pain free and have no other symptoms is when I am on high doses of IV GTN .
I have had some awful experiences of care over the years, however the awareness of microvascular and vasospastic angina has improved.
I attended a Pain Management Programme which for me was very helpful. I still have pain, but I have learned to respond to my pain differently.
The ' volume' of my pain is reduced.
I also pace my activities too.
Pain killer is a misnomer. Pain relief perhaps more appropriate. How we emotionally respond to our pain is important.
My coronary vasospasms feel like being in labour to me.
You might find Vidymala Burch's book helpful.
'Living Well with Pain and Illness '
There is this website created by 4 patients with over 50 years combined experience of living with microvascular and vasospastic. They are supported by 30 expert Cardiologists. It has lots of information and coping strategies.
I think vasospasms is the perfect word for what I’m feeling now. I think this for me sucks because I really think I could do with an angiography however they are refusing to give me any similar tests or calcium blockers which when I was on the dihydrocodeine - it really helped.
I am hoping for the future that if I can get this diagnosis and honestly I don’t mind being in pain. I always used to hurt myself as a kid. It’s more hoping that I can find a base point you know! ❤️
Thank you for the website as well, I’ve just finished work so 100% checking that out!
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