Chest pain.

[1963]

Hi everyone, was wondering if anyone else has been having problems with their heart, had a heart attack long time ago, due to SLE and APS. Im getting awful chest pain keep having to go a@e, (GPS keeps sending me by ambulance because of ecg , something shows up) had all different types of tests, blood test to see if you're having heart attack,shows something wrong every timeI have to go. Had anagram which showed no block of arteries, due to another visit(a@e) Had some other tests using dye and nuclear this time, showed a part of the heart muscle had died (due to mi) this I'm told is causing the problem, as it's blocking the smaller vessels of the heart, been given gtn spray, different heart pills to open vessels, and have been told to go to a/e to check for heart attack, I try to ignore the pain and just try to distract from it, don't want to be going down there all the time, beginning to feel like a fraud. But must admit it scares the hell out of me.when I wake in middle of night. Does anyone else have this problem due to SLE and APS. Sorry for long post and I hope that it makes sense, x

[Flourenco]

Hi my mum have the same problem the same pain but she doesn't have SLE and they give her precisely the same medication did all the tests like you and no veins with blockage but the muscles of the heart was with dysfunctional so she took the spray and the pills and ending have an cardiac arrest because was the veins on the legs that goes directly to the heart now she's more sick than before and they have to put pacemaker connect on 3 sides,I really think that you should have all seen by the doctor,all the best(I'm the one have SLE)

[daisyd]

If you have chest pain like that you must go to A&E no one can diagnose you without all the blood tests ECG etc

You say you have been diagnosed with Aps are you on any blood thinners

If you still having pain call ambulance now

I would still see a doctor as soon as possible today if not, you need to be checked out as soon as possible don't drive yourself, never ignore chest pain it really isn't worth it

I had a heart attack caused by blood clot that's why I asked about blood thinners I was on Asprin it wasn't enough to stop it now I am on Warfarin

Please let us know how you get on

[cuttysark in reply to daisyd]

Hi,

I have Sjogrens and suspect Lupus and have had those awful sessions with angina and breathlessness for years. I was rushed in six times to the A&E as they thought heart attack but no it was a coronary artery spasm which is like Reynauds of the heart circulation. The symptoms are identical to a heart attack so they say I must always come in if I have it. You can actually have a heart attack from it if the spasm goes on for long.

I have nitrate patches which I put on to reduce the spasm and remove if they give me too much of a headache and was put on Beta blockers and a blood thinner.

I had all the tests and there was a slight blockage problem at the Apex of my heart but they said it would be OK longterm and needed no treatment.The rest of the heart looked fine.

I did notice that about a year after it began I was started on low dose steroids for other autoimmune symptoms and have been on them since ,and the problem has been so much better since then.

We had a very cold and windy winter this year in Scotland and it all came back really badly evry time I went out in the cold.

I think my problem must be mostly connected with the Reynauds but I know other people who have it all year round.

I would not hesitate to go to A&E if you are having that chest pain especially when you have had a heart attack in the past. They told me that they and their tests are the only things to rule out a serious heart event. Try not to feel bad about going, that is what they are there for and paid for!!!! Your life could depend on it

Hope you get progress, a miserable thing to cope with, and so alarming.

C x

[1963 in reply to cuttysark]

Hi cuttysurk ,your problem sounds very much like mine, I've noticed that the cold don't help, I also have raynards s s. I am taking 3different heart tablets and use GTN spray,for this problem,I find it quiet scary at times,don't want to cause a fuss, just feel bad going to A/E ,every one goes mad at me for not calling ambulance out. I Will take pain meds and hope it will go away, doesn't, I am wandering around the flat, don't know what to do with myself. Just don't want anymore tests. I think that I had every test there is to have, over the last 36 years, madness I know. I will call ambulance next time, thank you for replying and the support, x

[1963 in reply to daisyd]

Hi daisyd , thank you for your reply and support, been on warfarin now for over 20years, this problem with the pain started about two years ago, had the heart attack about 25 years ago,this has caused the problem of small part has died, what I'm being told is it's the smaller vessels coming of that area, every time I get sent to a/e blood and ECG indicate a heart attack, heart Dr don't seem to concerned about it, think it's because the main arteries are ok. Saw GPS today, said I feel like I'm wasting their time and feel guilty for going to a/e. Especially by ambulance.(which I haven't called) I wait until I see gp. Madness I know, sorry for not replying sooner. Only just turned it on. Hope your heart was not damage due to your heart attack.wish you well.x

[MargaretGail]

One of the biggest problems with SLE is that you always feel like a fraud, no matter what. Always always go to the doc

[1963 in reply to MargaretGail]

Thank you for your reply and support, I think it's the look everyone gives you, i.e. there can't be anything wrong as you look fine, we are to good at hiding it. Becomes second nature .x

[daisyd]

Hi just a thought what is the range have they given you for your INR mine has to be around 3.5 as do a lot of people with APS

[1963 in reply to daisyd]

Hi daisy. I have to keep my inr between 1'8_ 2, as I've had 3 internal bleeds, I've got a ( think they call it a bird's nest, filter) in my stomach, to help catch the clots. Had it for over ten years now. The one thing I find annoying is the APS making the inr all over the place. Take care.

[daisyd]

That's a pity as most people with a higher INR seem to be better but understand you can't

Have you got your own coagucheck machine I find it really useful and I am sure has probably saved me from clots in the past, guess you are still under the Haematlologist, hope you manage to feel better soon