Chest pain help 😢: Wondering if any fellow lupus... - LUPUS UK

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Chest pain help 😢

stephaniejpm profile image
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Wondering if any fellow lupus sufferers had suggestions on how to deal with chest pain and an explanation of why i might be getting them? Been coming and going for months and got it at the moment, been to the doctors and waiting to see a rheumatologist but it’s really bothering me at the moment, feel I am suffering from loads of symptoms right now and don’t want to feel completely helpless in managing them 🙈

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stephaniejpm
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LalSD profile image
LalSD

Stephan, hello, I had a chest pain in early stages of systemic lupus. The interesting thing is never been able to identify the cause. I think you should be cautious of any underlying cause but please do not let it take over your mind. It seems each lupus patient is different but mine was better after 3 years of pain. I do get chest pain every now and again but not constant anymore. It is more sharp and sudden rather than constant as it used to be. The key to lupus in my view is not to let it take over your mind if you can. Because it already takes over your body. I live as if there is no lupus, and take one day at a time. Lupus has my body but not my soul and mind!

whisperit profile image
whisperit

Hello Stephaniejpm,

When I first fell ill, I had shortness of breath and after an echocardiogram, was diagnosed with and treated for heart failure. However, I had no chest pain and a follow-up cardiac MRI showed no abnormalities (!). Unfortunately the story does no end there, as after being diagnosed with UCTD etc and treated with hydroxy and prednisilone, I developed chest pains which - as far as I am concerned - are definitely cardiac in origin. Over the past year and a half, I've been blue-lighted into A&E when the pain has gotten severe (even though I have explained to the on-call medic that I didn't think it was a heart attack, his view on both occasions was "better safe than sorry", so off I went!) Both times, nothing abnormal was found. I've subsequently has a cardiac perfusion test which apparently also showed no issues.

But the pain persists. It's variable, and definitely worsens on those days when I have episodes of flushing and nausea.

My rheumy says he cannot account for these symptoms, but my own sense is that they are linked to a dysfunctional adrenal/thyroid system (I have recently had blood tests showing high anti-thyroid antibody levels and TSH and low cortisol). I wonder if this is causing micro-vascular damage to my heart muscle. After a lot of nagging, I have been able to persuade my rheumy to refer me for a endocrinology assessment, so I am hoping this may help.

Obviously, I don't know if this is anything like your own situation. But my advice would be to keep raising it and don't hesitate to press for cardiac investigations if you are at all worried. x

Joy_1 profile image
Joy_1

Hi

I too have UCTD. I don't have chest pain. So cannot be of much help from a personal point of view.

Folk often talk about having Costochondritis? Could it be that. And/or stress/anxiety?

Michiganpbc profile image
Michiganpbc

I have chest pain on and off and shortness of breath. After having many tests done for lungs and heart all normal I think it’s inflammation from the flares of my Lupus/Sjogrens. I did the research and from what I am reading its very common in autoimmune diseases to have flares of the disease with inflammation causing these symptoms. If your tests and doctor says everything looks normal then I would move on and expect that’s what it may be stemming from. I know it doesn’t make living with it any easier .

johare profile image
johare

Hi I have mainly lupus and sjorgrens. I get chest pain on and off. At first I thought it was part of the AF I get with cardiac problems or the shortness of breath. However, I believe that most of the time it is Costochondritis which has been mentioned. It can feel like a sudden and sometimes persistant sharp pain. I mainly get it on the right side. You are right to get it checked out.

Cann profile image
Cann

When I get chest pain, I am sure it is just another flare-up or inflammation in a different part of my body. Cold weather and not breathing properly can be one cause for me. I have to remember to breathe through my nose and not my mouth - the air warms as it has to go further down to the lungs - also prevents germs entering the lungs due to protection from this in the nose.

Heavy lifting can be another cause for me especially if I don't breathe into the lift.

Posture, too, is important - when we are tired we let our posture drop and keeping the shoulders back to breathe properly is one thing I attend to with chest pain.

Dairy always causes chest pain for me even a drop of milk in a coffee - probably because I can't take dairy, but sometimes I just like a change! I suffered much more when I was eating dairy foods routinely with bad chest pain and bronchitis/asthma. It much improved when I stopped eating dairy and found alternatives.

I do my best not to let it rule my life, too, as others have said, but if it is really bad, it may be that I need to rest for a while or even get outside. I find EMFs can give me chest pain - such as WiFi and masts if I am near them.

Try to work out when your pain arises and see if there is any connection to anything around you or even stress in your life generally. Doing relaxation exercises helps me and breathing deeply into the abdomen while totally relaxing.

Nikki246 profile image
Nikki246

I get chest pains on and off. I was told it's inflammation of the sternum, where the ribs join. Quite painful.

sarahsch profile image
sarahsch

Hi Stephaniejpm,

If it is costochondritis you could try these exercises. They are designed to gently stretch the connective tissues of the rid cage and thus relieve the pain.

If you don't feel the stretch, like me, then at least you have ruled out costochondritis

healdove.com/disease-illnes...

Take care,

Sarah

Unf4bul0us profile image
Unf4bul0us

Hey, I suffer with bad chest pain when I’m flaring and my GP said it’s costochondritis which is inflammation of the connective tissue between the ribs and around the sternum. It can be pretty painful and sometimes lasts for a long time but thankfully it’s manageable if I keep topped up with painkillers!! Xxx

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