LUPUS UK
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Frustrated pericarditis versus inflammation of esophagus

I was diagnosed with pericarditis on April 11th . It started out as palpitations and then progressed to sternal chest tightness . On my first cardiologist visit my ekg showed st elevation and I also had a high sensitivity of crp 9.2. I wasn’t told to rest so I continued my 12 hour shift job ( 3 days a week) . I can’t take nsaids because I get severe gastritis . I was prescribed colchicine but had to get off of it because it was making my feet numb ( dr request) . Which leads me to April 26th. I was at work abd started having worsening chest tightness and back pain. Ekg normal no pleural effusion cardiac tamponade . They gave me morphine , it helped with the back pain but not chest tightness . 30 minutes after the morphine I got severe sharp shooting pains up my sternum and burning pain under my ribs. Excruciating pain. My heart was fine other than my heart rate was 156 and blood pressure 190/130. It went away after about 15 minutes although it felt like eternity .the Er dr stated I needed do predinisine. So I did , however I had to stop prematurely because I was on the rode to possible psychosis . I haven’t been able to work since. I feel like the chest tightness is worse. I feel like each time I take a breath something is pulling inside of my chest . It hurts terribly . I had to go to Er again on may 4th , ambulance was called for chest pain abd numbness ( I was not hyperventilating) I ended up being in hypertensive crisis but from a pericarditis standpoint I was stable my ekg was normal which has the docturs at the Er scratching their heads and don’t believe the diagnosis again of pericarditis. I ended up staying overnight for observation . Also that same day my doctor does want to get a cardiac mri but have to wait for insurance to approve it. Then last night I got sudden severe shoulder/ back pain and sudden severe left side chest pain crushing spasming pain with jaw pain. Of course my heart was in 150’s abd bp systolic over 200’s. Again ekg normal the emt didn’t believe the diagnosis of pericarditis and kept saying I was having a panic attack ( which I’ve had before and never ever have I had excruciating pain like that associated with a panic attack) they gave me versed which helped me be able to breath better ( yes I was hyperventilating because I was in severe pain) abd I think my muscle relaxant that I had taken 30 minutes prior to this happening finally kicked in. Another cardiac work up fine . I’m just so sick of this . I cry myself to sleep at night because Of the chest tightness abs cry when I wake up when I realize the chest tightness is still there. I want to live but I don’t want to live like this . To top it off, my boss is not getting why I can’t come to work and my cardiologist nurse acted like I was crazy asking to take fmla for pericarditis. I am super fatigued, weak , have loss of appetite , chest tightness is there most of the time and now on muscle relaxers round the clock. Are my symptoms unusual , do most people go to work?

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Hello nickel38

That sounds terribly frightening as well as very painful. I wouldn't be going to work if I were in your shoes. More generally, I'm sure there are quite a lot of people on this forum who have had either to modify their work duties, cut their hours or take early retirement as a result of their auto-immune disease. I went from full time work to having to take ill health retirement in less than 18 months. I don't want to sound pessimistic, because there are also lots of others who manage - but either way, no-one should expect you to just carry on as if nothing was wrong.

I do hope you manage to get this properly investigated and treated really soon x

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VERY unsettling to say the least..So awful to go through what you are dealing with....Xx

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About six years ago I had episodes similar to what you are describing but heart looked OK though heart rate soaring and also BP. I was back in and out of hospital and kept over night half a dozen times. I had all the usual tests plus angiogram and they concluded it was Coronary Artery Spasm also called Variant angina.

Just after that I was suspected as having some kind of connective tissue disease but no firm diagnosis. I was put on steroids and the mysterious and alarming heart episodes stopped.

Fast forward to last year and I am still on the steroids but have now developed pericarditis especially if I try to reduce the steroids. The pericarditis was different to the CAS pain and improved if I sat up and leaned forward.

Even all the medics agreed it is not gastritis though I do have that too. For that I have to glug a bottle of gaviscon pronto but it is quite different from the CAS pain which was crushing and made you breathless. At episodes I would appear grey and very ill, then they would do an ECG and it would be fine.

If you have a Lupus type disease maybe your immunesuppression is too low at the moment. I see you were unable to cope with the steroids due to side effects. I was originally put on hydrocortisone as I also had adrenal insufficiency. You might be able to tolerate that instead of Prednisalone as it is a bit milder but needs taken more frequently. My heart episodes actually settled on the hydrocortisone alone, but I am now on the Pred also.

With the pericarditis they tell me to up the dose of steroids which always works.

I totally understand how awful this is and especially when they can't tell you what is wrong. I was retired when this all occurred ,but I really dont think you should be working at all until they get to the root of what is going on.

Hope you get some answers soon, XX

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