A&E: Just come back from A&E after suffering really... - LUPUS UK

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Danielle2419 profile image
43 Replies

Just come back from A&E after suffering really bad chest pain that wasnt responding to any meds i have lots of chest pains but this was different and quite immense and just wasnt going away no matter what i took, so i phoned up the 111 number just for some advice didnt want to make a big deal but they insisted on an ambulance.

I had a chest x-ray, ECGS, bloods taken and that i got the results for the x-ray and the ECGS which were normal but the bloods i just couldnt wait for i was so tired and just needed to come home so i discharged myself, thelady put it down that i was tired oh well, i havent had any callback so the bloods must be normal too, however i still have the immense, extruciating pain around my chest which is sort of right above my breast and it still hasnt gone away i really dont no what this could be, but would like some advice on what i could do just to take the pain away even a bit please

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43 Replies

Really sorry you're in such pain I know it drains you pain makes you so tired you may have strained the muscle you could try volt aril gel it has anti inflammatory in it may help with pain hope its better soon good luck

Lupus has caused me many types of chest pains over the years. I have been to hospital with pneumonia, pleurisy and several suspected PE's.

Is the pain just in your chest or are you feeling effects anywhere else?

Does it make you breathless?

You really should have waited for the results at the hospital but I guess you know that.

If it doesnt get better you really should consider going back or at least seeking help

Hi how worrying. Look, I've hesitated about suggesting this as it seems silly but about 6 years ago I had really bad pain in my chest, it came on suddenly, but had lasted an hour by the time I got to work. A colleague suggested drinking something fizzy quickly, which I did. About 10 huge burps later the pain went. I have never felt that type of pain before or since actually. I felt stupid thinking I was possibly about to die, but it felt that bad. Hope something/one helps soon. :-)

daisyd profile image
daisyd

Hi, I would phone again either 111 or Gp out of hours. Or the Hospital A&E which would be probably be best

I am not saying it is this but some Heart attacks like mine only show up with a blood test taken 12 hours apart.

Explain why you left and hopefully they will reassure you

Good luck, please let us know how you get on

scoobydoo1 profile image
scoobydoo1

Hi as you probably all know been there, got the t-shirt, got the book.

speaking with patient head :- I have had the chest pain that is very typically cardiac in origin, pleuritic and also muscular and they do differ from being a nuisance to downright scaring the hell out of you. on this flare lupus said hello by giving me sudden onset central chest pain which radiated into my left arm and neck, made me dizzy, short of breath and kissing the bathroom floor, then had second episode which was worse 2 weeks later, long story short I have had all of the cardiac tests including ecg, bloods, chest xray, echocardiogram and stress ecg all fine ( did find out I had had ? pericarditis) still get weird chest symptoms but know when to go in to a/e.

now a/e nurse head on- chest pain needs to be investigated, especially if it radiates into your back/arms/jaw, makes you short of breath, clammy or you feel feint/ energy drained.

FACT:- not all heart attacks show up on ecg, hence why we take bloods, normally we check for blood clots at the same time so hit 2 causes of chest pain in 1 go.

metoyou my advice would be if this continues, even after pain killers get further medical advice will put money if you get in touch with 111 or out of hours gp you will be back to A/E, and if you do go back they should have some of your result already.

:) good luck

charm81 profile image
charm81

I suffer with chest pain on and off. Causes breathlessness and pain when i inhale. I even have to sleelp sitting up. It actually got so bad last year that after putting off going to a&e my mum eventually dragged me there. Turned out to be a pericardal effusion. A build up of fluid around heart and lungs. Hence the breathing and pain difficulties. Ended up in hospital for 5 weeks. They had to drain the fluid from my heart in theatre. Which eventually solved breathing but had a nasty infection too that needed to be treated. Recurred again this year so i took self to a&e to prevent another hospital stay. Had ecg heart and lung scan didnt show anything. Eventually wore off. Its scary though as you are so unsure as to what it could be. Hope you find out soon x

A pleural effusion is another one I have had. Unsure if its related to pleurisy.

If the pain has not cleared I am hoping that you are now back at A&E

wood profile image
wood

Hi,

So sorry you are so unwell please get it checked out soon if nothing else it set your mind at rest, chest pains are so frighteningit maybe something or nothing but please please get it checked.

But hope by now you are feeling better/ or are sorted let us know how you are.

God Bless Judithxx

Danielle2419 profile image
Danielle2419

I appreciate everyone whos replied and it is still there today it will go up or down pain wise but not go away i feel asleep sitting up, i thought that maybe i would of got a call anyway if there was something wrong with my bloods.

amandalilley profile image
amandalilley

Hello

I think you may have a serious case of costochondritis

Not sure of the spelling but I have this all the time and was ignored for many months until it become intolerable and ended up in hospital for 3 weeks. Same symptoms exactly.

I am now being treated with sublingual tablets, oral spray and fentonol lollipops.

The drs have said this is the worst case of lupous related costochondritis have seen in my area and have offered no cure as such, just the usual, this is part of lupus.

Ask them about this and ask for the treatment, it does not cure, I am still in pain all the time, but I can now manage it.

I hope this helps and best of luck.

cynamonspice profile image
cynamonspice

It may be something known as "devils grip" it's an infection in the breast bone, it's makes your chest wall inflamed and it can hurt like hell, hence the name "devils grip" Unfortunately It can last a long time if it is this, as an infection in the bone takes ages to go away. I had it for a long time and seem to get it back quite regularly.

Also this can make you get heart palpitations too, it can inflame around the heart.

I don't know if it is this, but my daughter had it for a long time too, and the Dr couldn't find anything until they did an xray and felt the area and confirmed swelling etc.

LucyLocket profile image
LucyLocket in reply tocynamonspice

Interesting to read this . . . my GP told me that she suspected I had this 'Devil's Grip' only yesterday! I've had the chest pain since the start of the year now and it's settled into a constant burning ache that sometimes radiates up into the shoulder and into the arm. The doctors have identified sore ribs and intercostal muscles but that's all after several x-rays. I've been prescribed amitryptyline and naproxen.

I've also had pericarditis in the past and ended up on the cardio ward in hospital - that was a much sharper pain though that got steadily worse. I would also say go back to A&E or at least call your GP to rule out anything serious - better to be a nuisance than to miss something!

sky1 profile image
sky1

i had the pain like you are experiencing and it was a build up of fluid around my heart so mybe u should go back to A&E

roobarb profile image
roobarb

I can totally understand why you checked yourself out of a&e, I did the same recently when I was sent in by my GP with suspected DVT & PE. We were waiting around for a blood test that we were told would be a least an hour & I just had to go home for a proper rest. If only the staff understood the effects of lupus.

My husband phoned a&e from home & although we got told off, in the nicest possible way, they told us the test result did need further investigations. So try phoning them yourself or I'm sure your GP can access the results for you.

I've had all sorts of mild to severe chest pain with lupus.It can literally feel like you are dying, can't it?! I guess a&e are only looking out for imminently dangerous causes, so it might take a trip to your rheumy to get to the bottom of it. But your GP should give you strong pain relief & get your appointment brought forward under these circumstances.

I hope you can get it sorted asap. X

Danielle2419 profile image
Danielle2419

Thanks again all for your underlying support only us lot know as we suffer we it some nurses dont even know what it is i do have a rhuemy appointment with the lupus unit this thursday so it should be brought up then its still there at the moment but has a tendency to go down abit then come back full blow a couple of mintues later but is still not responding to painkillers which a chest pain for me usually does.

gazorpf profile image
gazorpf

Lupus can cause chest pain in a variety of ways. Any of the layers of muscle in the heart (endocardium, myocardium, or pericardium) can get inflamed causing pain. The lining between the lungs and ribs can get inflamed (pleurisy) causing pain when you take a breath. Fluid can enter the lungs (pleural effusion) causing pain and difficulty breathing. The muscles between the ribs can also get inflamed (costochondritis). Or these things can occur in combination. You need to go back and insist not only on treatment, but your lab results.

Purpletop profile image
Purpletop in reply togazorpf

This is a great summary of what could result in chest pain due to lupus!

Dont just hope that the hospital will call if there is a problem. They are under serious pressure these days and are constantly dealing with a conveyor belt of new patients.

Seriously, either call to get your results or dont ignore the pain.

It could be serious. Its better to play safe.

Danielle2419 profile image
Danielle2419

Funny you say that but its been gone since a couple of hours now so not sure it might of been a muscle inflammation.

cynamonspice profile image
cynamonspice

They told my daughter to use an icepack on her chest and take ibuprofen, that's if your somach can handle them. Have some probiotics at the same time if you have any as that really helps me when I have to take them :o)

Danielle2419 profile image
Danielle2419 in reply tocynamonspice

I think i may try that its easier and i have those things in my bathroom cabinet. Thank you very much it has a habit of coming up then going down then full blown again i keep writing on here but then after opening my mouth seems to come back up again which is really annoying the pain has been there on and off since yesterday at 7am im kinda getting used to the fill.

scoobydoo1 profile image
scoobydoo1 in reply tocynamonspice

xx SERIOUS WORD OF WARNING xx PLEASE BE VERY, VERY CAREFULL PLACING ICEPACKS ON THE CHEST AS IT CAN CAUSE VASOCONSTRICTION AND GIVE YOU CHEST PAIN SIMMILAR TO ANGINA. thanks, and regards Mark.

cynamonspice profile image
cynamonspice in reply toscoobydoo1

Hi Scooby thanks for the words of warning :o) I am alarmed then that the hospital peadiatrician, the heart department and our GP said that ice packs were a good idea :o/

scoobydoo1 profile image
scoobydoo1 in reply tocynamonspice

its basic anatomy place ice pack on hand for example and you can feel the blood "drain/ slow down" from that part and that's how you reduce the swelling so with that in mind if you place an ice pack on the chest it will cause less blood to that area, hence pain. may not come across as I would have hoped but didn't want to start going on medical terms etc but I hope you get the jist THIS ADVICE IS FOR WHERE THERE IS NO KNOWN INJURY, ICE PACKS CAN BE USED IF THERE HAS BEEN INJURY IE PULLED MUSCLE BUT ONLY UNDER MEDICAL ADVICE, just wanted to clear that up, thanks Mark.

cynamonspice profile image
cynamonspice in reply toscoobydoo1

That makes sense as my daughter had costrochrondtis at the time. Thanks for letting us know :o) as I wouldn't want anyone to get more poorly from something I said.

cynamonspice profile image
cynamonspice

Glad I could be of any help :o) Both me and my daughter get this and we have the same coming and going problem you have. It can be really quite painful and according to the Dr can feel like a heart attack :o( I wonder if yours started when the weather started getting warmer and sunnier, as that's when mine started up again, about a month or so ago? I have bronchitis at the moment too, from it.

It's a nightmare and quite often people treat you like a loon, as they think since they cant see any heart issues, you must be making it up or something.

Feel better soon :o)

donna profile image
donna

L also have been through the a&e and was eventually diagnosed with costrochrondtis. .it gets worse each time it comes back )..suffering this time four weeks and in terrible pain..follows under my bra ( which I can't wear) round to the back .have had more X-rays on lungs but nothing showing for a change..short if breath usually have it on left side and back but at the mo is a full circle and also middle ribs..was advised it was connective tissue problem..ligaments and muscle that hold ribs together and becomes inflamed..l do react badly to the sun..which l think has caused this flare as well as the costrochrondtis...

Hope this helps x

cynamonspice profile image
cynamonspice in reply todonna

My daughter was diagnosed with that after 6 months of tests and almost bi weekly trips by ambulance to the hospital. They took forever to make their minds up and kept changing it. My daughter still gets it, but it's not as bad now.

Sorry for your pain, and distress I remember watching my daughter and thinking how much pain she was in :o(

donna profile image
donna in reply tocynamonspice

Hi cynamonspice, lm sorry that your daughter has it it as well.it is really painful and one of those pains you can't try and ignore like a lot of the pain we get! I can' t take any pain meds as l react badly to all and they make me sicker than the problem l am taking them for! If that makes sense! I am ok on prednisalone but trying to keep that in hand for REALLY bad times..!waiting for a hosp app at the mo ..l wish you and your daughter well ,she is luckyntomhave you understand her pain and be a support to her xbestwishes

cynamonspice profile image
cynamonspice in reply todonna

I wonder if you could try pregabalin it's actually a med for epilepsy, but they use it for pain too. It does work quite well, so maybe ask about that the next time you're there? take care x

donna profile image
donna in reply tocynamonspice

Hi Thankyou for your suggestion .l was prescribed pregabalin with no success just a host of new problems .pregabalin is the stronger relative to Gabapentin which l took some years ago ,l started having uncontrollable spasms and was diagnosed ( by. A very good London hospital) with MS..when l stopped the tablets the spasms and other effects stopped ! And 2 years later they said l didn't have MS! which at the time was a result! they think it was our friend Lupus In one its disguises! proper allergic to codeine and aspirin so at the pain clinic they give me opioids to try..and try loads l have !l was on tramadol for some years which l am unable to take now..it seems my Lupus is made worse by Drugs and MANY foods! I read some more answers on this page and discovered that you to have the gift that keeps on giving! A wellSo though its nice for your daughter to have your support NOT that great for you xxx

cynamonspice profile image
cynamonspice in reply todonna

I'm so sorry you have to go through this with no help from pain meds :o( I can sympathise to some extent as there are a bunch of meds I can't take either, all I can take without a trip to the hospital (agonising pain) is paracetamol, ibuprofen (still gives me tummy ache) and Volterol (works best when you first start taking it) as I have lots of stomach problems. I absolutely feeling your pain, sometimes literally lol.

You sound like you've had the run around, i'm currently going through that and I know how much that sucks!

Can they not give you the morphin patch that you stick on your arm, for slow release pain meds? have you tried it? although the sticky stuff will probably itch like mad and give you a rash (it did me) but it did work other than that lol.

Yep unfortunately the gift you mentioned is one i'd really like to return lol. Yes it is a bit of a suck fest here, as both me and both my kids and quite a few health problems, they go through an awful lot, and I wish I could do better for them, but sometimes just moving is exhausting and takes every ounce of energy I have.

Would you if you don't mind let me know which foods to vaoid as I'm having so many problems with food and an basically only eating sweets, as they don't make me ill, unlike everything else :o( I'll probably get diabetes from it too knowing my luck lol.

Hope you have someone to help you through all this? I only have my kids, but at least they give me a reason to get up each day, which I don't think I would if weren't for them lol.

Reason you should not chance things is that it COULD have been a pulmonary embolism. Thats a blood clot in your lungs.

If it was something like that it could break up/dissolve of its own accord and cause no further problems but it could potentially move and cause problems elsewhere.

Did you ring the hospital for your results?

Danielle2419 profile image
Danielle2419 in reply toovernighthearingloss

Yeah, and they said they couldnt find any info that id even had a blood test i was taken round in circles on the phone line which was getting on my nerves i gave up after a while.

Thanks for your kind help it doesnt seem to be to bad but i dont want to jump the gun because it could come back after i send this lol.

Shann07 profile image
Shann07

Hi im going through this at the mo. Ive been to a&e, out of hrs, own gp and all bloods, xrays, ecg normal? My inflammatory markers were up a bit, but nothing huge? Im taking Naproxen for it thus helps but when i stop pain gradually comes back. Mine is in through right side of lung area and intense pain in chest? Im baffled hope both of us get some answers soon, better still that it goes away! Still feel worried when it comes it feels like heart attack! But cant keep going to hosp, wasting time!

LucyLocket profile image
LucyLocket in reply toShann07

I was made to feel a complete time waster when I went to A&E with this problem last week. My problem sounds so similar - I've also had to stop wearing a bra. My ECG apparently wasn't normal but then they didn't follow that up - just had very cross A&E doctor who told me I shouldn't be there. It is worrying when you have a pain that doesn't go away properly and keeps on coming back. I've just started taking naproxen and also amitryptyline - since I've been taking anti-inflammatories for the past week regularly it has reduced in intensity and is not giving me so much referred pain into the shoulder. It's still there though - especially at night-time. I now think that I won't get a proper answer - just guesswork. It does appear to be a common issue for many of us here doesn't it.

Shann07 profile image
Shann07 in reply toLucyLocket

Hi lucylocket thats so weird your symptoms are so similiar to mine? Also the pain is worse at night right behind breast bone, ive had to take Naproxen in middle of night to get some sleep! My gp mentioned amitryptyline too but he did say only take if pain persists which it has. its so interesting that other lupuies seem to get this i wonder is it just a general symptom? Very scary and painful though, im gonna mention it to Rheummy, although had heart scan and chest/lung CT in January - no result yet so hopefully that means its all ok! Weird thing had these tests done when i had no pain, it was just routine!

cynamonspice profile image
cynamonspice in reply toShann07

Do you guys get at phelgmy with it? maybe not at the same time but kind of afterwards? I always get a chest infection from it too :o(

Purpletop profile image
Purpletop in reply toLucyLocket

In what way your ECG wasn't normal, did they tell you? It could be pericarditis, that shows up on the ECG in a particular shape and gives you sharp chest pains and breathlessness.

scoobydoo1 profile image
scoobydoo1 in reply toPurpletop

you can get st segment saddling on the ecg trace, normally only confirmed with echo though. ecg can signpost.

LucyLocket profile image
LucyLocket in reply toscoobydoo1

I have no idea what was actually wrong as the doctor was just keen to get me out of the department. I had a dodgy ECG reading 2 years ago when I did have pericarditis (this latest episode is NOT pericarditis) - at the time the cardiologist told me that my ECG looked like that of an 80-year-old man! Nothing has been followed up though - I do have an irregular heartbeat but since that doesn't seem to have been followed up on I just have toput that down to stress and/or perimenopause symptoms. :(

Mumoftwin17 profile image
Mumoftwin17

Phew!!....so pleased to read all you peeps with chest pains !! (well not literally cos I know it flipping hurts )...I've had no diagnosis seeing rheumy 8/7/2013....but have already had two trips to A & E with chest pains!! very scarey....

This whole RA / Lupus thing is soo scarey....n feel soo bad, but at last someone else with similar symptoms...I really thought I was about to die!!!!!!.....(I know what a woosh!!)

I've had blood test RF positive....with joint pains and feet that dont wanna go!!

Wish you all well

wendy..x

cynamonspice profile image
cynamonspice

All the immune system problems seem to be an complete enigma to the medical profession, but that sure doesn't help us :o(

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