Chest pain

[Sophia]

Hi guys!

Was just wondering what your experience with chest pain is. I have made quite a few trips to A&E with terrible crushing chest pain, nausea and breathlessness but was sent away every single time with the comment "It wasn't PE or MI. We would be more worried if you weren't on warfarin. Take some painkillers and off you go...". Is it a feature of APS? Cardiac Syndrome X maybe? And what do you do about the pain? I feel like a paranoid hypochondriac every time I leave A&E but the chest pain is so bad that you can't risk not going in case it is something serious. Have you had similar experience? Thanks.

[MaryF Administrator]

Hi there, you must certainly keep going to casualty, and as well as this, who is looking after your APS, do you ahve a specific consultant with knowledge of this, as they may need to be involved and fine tune your care. If you can't get hold of them, ring their personal secretary and ask for her email address and then write to her with the letter urgently and clearly marked for the consultant. It may well be that casualty does not understand the disease and may need to come up to speed - or maybe there is some other explanation that the consultant can explain. Whatever, you need to be urgently re assessed by somebody who understands your full medical history, rather than perhaps not up to speed casualty doctors who may not understand the behaviour of the disease in it's entire form. Let us know how you get on please, it may well be that you will have to try another hospital, but certainly stick any letters you have in your bag! Mary F x

Ps: You need to also take with you a friend or a family member who can fight your corner with integrity, it woudl help to know where you are located!

[Sophia]

Hi MaryF,

Thank you so much for your prompt response. I am located in London and I am under the care of a consultant at St. Thomas' because I also have Lupus in addition to APS - it is a bit fuzzy where exactly I fall into. From what I have been told (even by my specialist) it seems to be part of a lupus flare and the only way to go about it is painkillers. I have had pericarditis in the past before I was diagnosed and my first thought when I get chest pains is that. However, last time I went to A&E the doctors there were great and got in touch with my consultant who told them it was a flare and they should give me painkillers. That's why I was wondering whether it is just another symptom of APS that comes and goes or whether I ought to ask for a referral to a chest clinic. I feel really silly going away "resultless" every time and am put off from investigating it further. It seems that problems continue even after we are diagnosed...

[MaryF Administrator in reply to Sophia]

Lucky for you that St Thomas' is your local port of call. However if this is not calming down I would still ring the secretary and relay an urgent message to consultant. If it is not calming down it still need monitoring. I get pericarditis and it is indeed very painful. There is no harm in sending a brief email to the secretary marked for the consultant if this really is not going away - and just be firm with them if you have to go back, you really can't help it.

lupusinternational.com/Abou...

Mary F

ps keep us posted x

[CanaryDiamond10]

Hi Sophia: Those symptoms sound to my ear to be more of the "elephant on the chest" pain that nobody likes to hear. It is usually a symptom of heart problems. I would get an appointment with a cadiologist, just to be sure, since it has happened more than once. Also ask whomever is managing your APS if it is a symptom of that. Perhaps not common, but a symptom for YOU nonetheless. I think hearing a cardiologist's opinion would ease your very valid concerns. Most importantly, I agree you have cause for concern. You are not crazy. This may be an uncommon symptom for APS, but common for another disease. There are too many questions. Get that cardiologist appointment and get up the courage to call the doctor treating your APS. Perhaps ask the APS MD if he could refer you to a cardiologist that he has worked with before. Those are pretty severe symptoms and I hope they subside and never come back, but I sure wouldn't chance it. I send you warm wishes, Sophia, and hope you feel better soon. Listen to your body. It's trying to tell you something.

Big hugs,

Canary Diamond

[Sophia]

You are all very sweet. Thank you so much for your support! I have an appointment to see the nurse this week at the Lupus Unit so I might also grab my specialist and ask him about it. It is the "elephant on the chest" pain as Canary Diamond so eloquently put it and I do agree doctors are not at all happy when they hear it. it is so frustrating because you know there is something wrong but since they can't find anything you end up attributing it to APS or Lupus. So you have to live with it just like all the other symptoms. But since it doesn't seem to be the case with others I might need to consider chasing it up. Will keep you posted! Thanks again! :-))

Love Sophiaxx

[Jade]

Hi Sophia I have had the same problem. My GP arranged an ECG which was not normal but apparently not to be worried about.The GP dare not put me on a treadmill so sent me to a cardiologist, who said it was inconclusive but then added GTN spray to my list of drugs with the GP but did not tell me. I assumed he thought it may be angina. It calmed for a long time but has recently come back.

I believe asking to see a cardiologist is the best thing to be sure. I understand syndrome x and angina are common with APS.

[daftdog]

hello i have had 3 subclavical dvt,s( right arm chest ) i also used to get crushing chest pains (usualy wen tired after doing to much ) also wasent good at taking warfarin at the time so inr s up n down, i always though it was the internal scaring of my vein or just my blood going from thick to thin , so never questioned it but not had them in a while (thankfully) and now take my warfarin same time every day. but if they return i will now seek advice from doc,

[Annslack]

This has been my major symptoms and I felt the same embarrassed to keep going and afraid not to in case itis something serious. I have now found that cayenne extract reliably alleviates the pain and I no longer fear it coming on and trips to casualty My consultant thought it could be coronanary syndrome x. Which I think in aps patients is caused by clotting in the very smaLl arteries of the heart which causes areas of muscle to go into spasm iwhich is so painful. This why diazepan would help by relaxing the muscles. The cayenne is certainly worth a try I take a dropperful in cocoa and all my family know to get it for me when I have pain I also caqrry a droPper bottle in my handbag You can make your own recipes on the internet or buy a tincture which is quite cheap and lasts ages. Oif course it is important to get any investigations you can to check its not anything else. I allso found that oxygen relieves the pain and that air quality affects the pain. So it can come on in a crowded room with poor ventilation. So getting some air can relieve it. Learning the things that affect it can help you feel safer and more in control. Hope all goes well Ann

[Sophia]

Thank you for your support and help all got some news today. I saw the lupus nurse and she re-did a potassium level blood test that was a bit high and said she'd speak to the consultant so they can refer me for an echo to see what is going on. And if nothing comes back then they will probably refer me too a cardiologist to check whether the problem is not related to the lupus but to the heart. All in all I'd say that is progress!!! I see though that a few of you do have chest trouble so my suspicion is that it might be APS-related and just another thing to live with ah well...Bless everyone! Keep smiling!

Sophiaxx