Hi all, just thought I should let you all know what happened if anyone is having similar symptoms. So I've been having intermittent chest pain for a while now and hasn't been getting any better, I had it at my last Rhuemy appointment in Dec but she said that she'd send me for CT scans and chest X-ray to rule out anything serious.
Yesterday morning my pain got much much worse felt like a crushing pain in the centre of my chest, I called my GP to ask for advice but they were so busy I put on a waiting list for the afternoon. Eventually it got so painful that It was interrupting my breathing so I went to A&E (which I hate doing!).
I was in for around 8 hours in total I had an ECG which was normal and was initially given some gaviscon and told it was gastritis which I didn't agree with as the symptoms didn't seem to match up, then I was told it was a reaction to the dye I had been given in my CT scan which was done the day before.
They put a cannula in and gave me two injections of a stomach lining medicine which made no difference at all. Pain was still awful at this point. As the stomach liner and gaviscon made no difference they determined that it wasn't stomach related.
They took some bloods and gave me some co-codomol which didn't seem to help either and then sent me for a chest X-ray again. Funnily enough I had the same radiographer I had yesterday he wasn't impressed to see me back so soon lol
Chest X-ray came back normal as did the bloods, except for high levels of inflammation, thank god for my Rhuemys notes on the system or I'm sure they would have dismissed me as a hypochondriac, it's the first time I've felt that I've been taken seriously since having a semi diagnosis!
The dr explained that she was concerned it could have been a clot due to my antipholosiphid antibodies but thankfully that wasn't the case as CT results were normal.
I was sent away with co-codomol a bit concerned that it won't just go away with some medicine and I hate taking painkillers I feel like I'm just covering up instead of addressing the cause of the problem, however
The Dr I had was lovely she was so thorough which was fab and assured me that if I had any more pains I could come straight back in and she also mentioned that I was seeing Rhuemy next in Feb and the MRI I had coming up, and that Rhuemy should be able to help me if I needed it.
Got to say as well, GP called me around 3:30pm and when I explained I was in hospital and apologised for forgetting to cancel they were so lovely and understanding even urging me to let them know asap if I needed any follow up at all.
I honestly feel blessed for having a Rhuemy because It seems that since I've been given the label of "Connective tissue disease" I've stopped being told I'm a hypochondriac (by Drs at least not my family but that's another story...)
So sorry I've rambled on for so long, has anyone else experienced this inflammation of the heart/chest/lungs?
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Hnewman2
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It does make a big difference having a recognised CTD doesn't it! So pleased that all the doctors are being so nice and thorough. Has anyone suggested Pericarditis or Chostochondritis to you yet? These can both cause the type of symptoms you have. Also, I have gastritis and it's part of my CTD/ Sjogren's and also Chostrochondritis - which is inflammation in the rib joints.
I never quite know whether my problems relate to these or I'm having a heart attack. So don't underestimate how bad gastritis can feel.
Are you taking a Proton Pump Inhibitor such as Omaprazole or Lansoperzole regularly and Ranitidine too (with your GP's authorisation of course!)? If not this could be an important to start asap because acid reflux isn't benign and Gaviscon isn't nearly enough for those with GERD and a connective tissue disease. Most people with Sjogren's and Scleroderma have chronic GERD as part of their disease. Take care and hope you feel better soon.
I'm sorry so didn't mean to say that gastritis isn't painful or anything like that I was just sure it wasn't stomach related in my case.
Nobody suggested either of those but I will look them up as Ive never heard of either of them myself, im not on any medication currently other than painkillers. I've been told I can't start treatment until all of my tests have been done so as not to skew the test results.
I haven't had acid reflux at all since my diagnos it's solely been chest pain and discomfort which is very different to the acid reflux I've had in the past (few years back) but yes that's awful too!
Hi Twitchytoes, I've suffered from acid reflux for years, and the chest pain, like to say it feels like heart attack. But recently I got my abdomen hernia done and I've had no chest pain since ( touch wood ) still got terrible acid reflux but Ranadin works . excuse spelling. But weird can a hernia cause chest pain. X
Yes, that's a familiar story to me. I had no indication of auto-immune problems when I first had crushing central chest pain following a serious accident about 3 1/2 years ago. In A&E nothing untoward was found, and it gradually resolved. I was healthy for the next 2 years, but now think that may have been some kind of trigger or warning of what was to follow.
18 months ago, I began having shortness of breath and was diagnosed with heart failure, and started on B blockers and ACE inhibitors. But this diagnosis was soon overturned in favour of an overlap syndrome with auto-immune features predominant (strongly positive ANA etc).
Since starting hydroxy and steroids, I have developed a fleeting, but daily, "pinching" sensation in my heart. Along with this goes tachycardia, nausea and a very hard to describe sensation of discomfort. At my last rheumy review, my rheumy - rather disconcertingly - said he didn't know what it was, but didn't think it was anything to do with my auto-immune disorder. He advised attending A&E if I had a bad episode. So I've now been into A&E twice. Both times, ECG, CXRay and bloods showed NAD except some inflammatory markers.
The "pinching" sensation remains a daily presence and I am thinking it is pericarditis? In any case, in view of my chronic tachycardia, my GP has restarted me on B blockers.
I am going to tackle my rheumy about it again next time i see him (in 3 weeks). Meantime, my GP has also referred me for a tilt table test with cardiology, to rule out a postural tachycardia or related dysautonomia.
In any case, its a frustrating and unsettling symptom. I hope yours gets sorted sharpish!
Mx
PS like twitchytoes, I also have chronic gastritis
Hi whisperit, oh wow that's sounds really scary! Heart issues are always scary to think about.
It's so incredibly frustrating how tests don't show the pain that we are going through! I wish there was a test that made Drs see what the pain was like wouldn't that be a miracle and stop all the doubting! I've had a look at the pericarditis and chostoconditis and they both look like posibilites in my case, I'm leaning towards it being Myocardtis just because I had a viral infection which seemed to set this whole thing off.
Really hope that your Rhuemy has some answers for you!
Too too true! Every time I try, I cannot find the words to describe why it is that i *know* that this is not heartburn, say, or - the usual favourite - "anxiety". I recently had a long discussion with my sister - who is a doctor - and she too struggled to accept my subjective experience. If it doesn't show up on an ECG, it can't be happening!
"Strange sensations" of various sorts seem to be quite common here on the forum - we know something is going wrong, but how difficult it is to persuade "outside" folk of that!
Hope things quickly move in a good direction for you too
So sorry to hear your latest news. I can't say that we definitely get the same but I do get chest pain that is worse than childbirth. I can't talk or breathe through it. It is generally put down to inflammatory/pleuritic pain although sometimes I wonder if it is costochondritis and my ESR rises high. I start the co-codamol within minutes of the onset of pain these days - if I don't, it will escalate to unmanageable. At least you can feel reassured that you have been thoroughly checked out. Hope the pain settles a bit today. Thinking of you xx
It seems like this chest pain is very common in autoimmune conditions, what fun!
I just hate the thought of taking strong painkillers because I'm terrified that it could be a heart attack or something causing damage and I wouldn't know.
Guess it's just another one of these things I have to get used to for now 😔 Xx
I have had what the heart doctors are assuming was an episode of pericarditis. I had never had it before, so somehow I thought if I laid flat on my back it would get better. I also had codeine which was if I was taking a sugar pill. Finally, the pain started to improve a bit, so I got up. I saw something on the floor and picked it up. I felt my heart shift and the pain improved. (Apparently, all of these are symptoms of pericarditis). You may be wondering why I didn't call 911. Well, it started in my doctors office where it was pretty mild and he had done an EEG. I guess there was something a bit off, since he ordered a ultrasound of my heart. Also, I didn't feel short of breath (although I have other people who have it say they have). So, I didn't think I was having a heart attack. (My rheumy told me, I could have been heart attack.) When I called the GP the next day, his nurse said he said take gaviscon. (I was upset since I was pretty sure it wasn't heartburn). I had asked for a stronger pain pill, so I could make it to the ultrasound. He wouldn't give it to me, so I upped my dose of prednisone. Anyway, they are looking for a rub, and also fluid around the heart, which wasn't found. But three cardiologist told me that sometimes they don't see that. I ended up that night, trying to sleep as much on my stomach as possible with a pillow on my chest, which helped. Lying flat increases pain with pericarditis, and leaning over or holding the chest with a pillow relieves the pain.
Anyway, with costocondritis leaning slightly forward can relieve the pain as well, but pain relievers will work with costro. Not much with pericarditis. I had to see actual heart doctors for a diagnosis, since GPs may assume you are exaggerating, but heart doctors understand the symptoms of pericarditis, and also what can be seen and may not be seen.
Hi hnewman2..so glad to read your post. I have been having a terrible time with my breathing for awhile now. GP did breathing test, that stupid thing they put on your finger indicating oxygen levels. An inhaler to see if I breathe better. OMG! I dont go to the doctor anymore. I have high C02 in my bloodwork. I should be seeing a rheumatologist. I have been deemed a hypochondriac. I actually had one GP dr (from the Korean War...finally retired) call me bipolar and want me to go on zoloft. I even had a bad ER visit. I hare drs and hospitals. I dont think they have any clue about this disease . And family can be just as bad. If you fnd something natural beside chia seeds, please share. Take care
I know a little of this. 🤕 I have had costochondritis, got recurrent pericarditis and have had serositis. In fact whenever I drop below 14mg pred which I take daily I start to get the symptoms back and yes it's horrifically painful. I take colchicine daily for the pericarditis (a drug also used for gout, which I don't have) and that does seem to help.
Costochondritis can respond well to non-steroidal anti-inflammatory drugs (NSAIDS) like ibuprofen, naproxen or diclofenac but these drugs have to be considered with caution with lupus patients if taken regularly, especially if there is kidney involvement.
It can be really scary getting the chest pain. A typical feature of costochondritis is that if it hurts when you palpate the chest wall, i.e., press on the rib area just to the side of the sternum and it reproduces the pain, it is likely to be inflammation/costochondritis. This is just info sharing....not advice about diagnosing yourself. Chest pain should always be taken seriously.
Now for some advice. Once the inflammation in your chest/ribs/muscles is diagnosed and has kicked in it can be difficult, actually a real challenge to get rid of especially if you don't rest. My inflammation was even triggered by lifting stuff, coughing, even washing up. (Got out of that one 😉)! So ensure that you rest but equally mobilise gently.
Inflammation of the heart muscle can be seen on changes on an ECG or an echo (ultra sound of the heart). Inflammation of the lungs can be picked up on CT, chest X-ray or having your lungs listened to with a stethoscope
Inflammation of the chest muscle and connective tissue can be picked up by physical examination (poke it and it hurts) and blood results. I'd say that all are equally as painful and can make breathing very painful and uncomfortable. The key is to get adequate pain relief so if you are struggling and really think that the meds you have been given aren't strong enough or the right ones then see a GP because if you're in pain, your body makes you breath faster and then you land up overworking connective tissue that is already inflamed, and then it's a vicious cycle.
Either way, good luck. I don't envy you. I've had this on and off for two and a half years but mine was undiagnosed for over a year so the inflammation has become chronic. Just make sure you rest up!
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