Doctors cannot diagnose me (Pericarditis - Costoc... - LUPUS UK


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Doctors cannot diagnose me (Pericarditis - Costocondritis - Pleurisy)

N1994 profile image

Hi all

I was diagnosed with Lupus last December due to severe chest pain and I was admitted to the hospital soon after. My doctors never really told me what I had and never explained what that chest pain was and I was only told that I have water around the lining of the heart. I was prescribed 30mg of prednisone and was discharged. The pain lessened the first couple weeks but then came back. I spoke to my doctor and he decided to keep me on the prednisone alongside with 200mg hydrox and 75mg azathioprine. I spent months trying to explain to my doctor that I am in pain but he keeps on telling me that my chest xrays and ECG scans are completely fine. Whenever I tell him i'm in pain he always suggests prednisone but it only stops the pain for a week or two. I am really confused and I don't know where is this pain coming from. I couldn't even start university this year because I can't go anywhere without feeling pain afterwards. I have pain in the middle of my chest and it spreads to my shoulders. I often feel breathless and my pulse goes up to 140bpm when I am in pain. I can't bend down or put on my shoes without feeling pain and hearing my heart beat so fast. I also feel pain in my rib cage area. Pain killers help a lot but the pain in the centre of my chest never goes away (doesn't hurt when I am on painkillers but I can feel it when I breathe in). It feels like I have been stabbed from the back. I am hoping that I can find someone who experiences/experienced the same thing as me. Sorry for rambling! Thank you :)

15 Replies

Hi there, I've had pain in ribcage area (left sided) for over two years now, I too take prednisolone, azathioprine and hydroxychloroquine, also take 12hr slow release tramadol twice daily and cope using co-codamol daily as and when needed.

I know exactly how you feel, GP has on occasion queried costochondroitis, I've had several chest x-rays which show nothing of concern, some days this is manageable and other days it's unbearable!I too suffer with breathlessness and pains in chest, although the ribcage area is the worse, since last week the pain has extended to the right side of my ribs, If this is to continue I don't now how I'll cope.

My consultant examines me thoroughly when I attend and has not come up with any other diagnosis, other than to say it's probably the lupus.

I really wish I had answers for you, but hang in there I'm sure they'll figure out what is causing this eventually.

Take care.

N1994 profile image
N1994 in reply to Slowmo


I take Co-codamol too but the side effects worry me. I try not to take it three days straight and replace it with Nurofen if I can.

Thank you very much, hope it gets better for all of us :)

I have also had problems with my ribs fro 2 years and no explanation from DR's other then in so much pain from ribs especially left side which are protruding quite prominently it makes it difficult to sleep. more recently have had pain in centre of chest and collar and browbones feel the same way.i assumed it is costochondritis as others have mentioned on here.have not had a chest xray.i believe it to be lupus as before I got rib pain etc my fibromyalgia was fairly stable.

N1994 profile image
N1994 in reply to anbuma

I suffer from the exact same symptoms, I also have pain around the collar bone area!

Hope you get well soon and thank you for your reply :)

Hi there,

It's a horrible & scary feeling.......kinda know what your going through!!! I have right sided chest pain......constant for 3+ years, with shoulder, neck pain and something pain down arm!! Difficulty taking a deep breath and when it's bad I get increased heart rate (like palpitations!) Also have a stabbing back pain, worse when it's really bad. Find that when I,ve a flare, tired or stressed symptoms get worse. Doc says its pleurisy and normal (!!!!) and it has settled somewhat since the weather change (photosensitive). Not sure if this is similar to what your experiencing. Hope your feeling better soon.

N1994 profile image
N1994 in reply to KeiraMcC

Yes I actually realised that my pain gets worse when I am stressed or when I am sad. I thought I was imagining the pain down my arm this whole time! the arm pain sometimes go down my thumb and I usually put a pillow under my arm to make it go away. Thank you so much and hope you get well soon too :)

Sounds like pericarditis. The trouble with pericarditis is that it should only be treated with steroids if in a critical stage, otherwise they can cause it to recur. Antiinflammatories should be prescribed in the first place, although they might take longer to resolve the pericarditis but at least they minimise the chance of recurrence. As you've been treated with steroids as first line, it may be that once they are stopped the pericarditis returns.

Another thing to bear in mind is that although the ECG and ultrasound show no scarring to the heart due to the pericarditis (which is great), a heart MRI is better at measuring the amount of residual fluid left around your heart that could still cause the chest pain. So although you're told all is ok, you could still have residual fluid there that will probably go away in time to some extent, or some remains there for good, it depends on each person.

The third thing I would bear in mind is the treatment with steroids and the withdrawal from them, either of which can cause breathlessness and chest pains.

To my mind, once you have the all clear for heart and lungs, you will need to let your lupus to settle down without steroids and for the antiinflammatories to work for few more weeks. Eventually all will calm down.

N1994 profile image
N1994 in reply to Purpletop

Yes! I don't know why my rheumatologist is insisting on treating me with steroids and I know that my condition is not life threatening at the moment as I have been worse before. I read on a website that steroids is the only treatment available for when there's so much fluid around the heart but mine is very minimal and as my rheumatologist said not life threatening at all. She even told me that steroids are the only medication she can offer for my condition and when I went to my GP he told me that mine should only be treated with strong pain killers. I did an MRI back in April and it actually showed that I had a small amount of fluid when my ECG and xray results were clear!

Thank you so so much for your reply, I will definitely discuss this with my rheumatologist because I am positive that steroids isn't the the right treatment for me!

Purpletop profile image
Purpletop in reply to N1994

It is not pain killers that will sort it but NSAIDs (which are also used as painkillers). I wasn't under apt he care of a rheumatologist when I had the pericarditis and my GP recommended ibuprofen but after 6 weeks of it and not much improvement I did my own research and came up with Colchicine, so my GP prescribed that and I took it for few more weeks and it cleared in the end. But - meanwhile I got referred to a rheumatologist for the lupus symptoms, I got diagnosed and he started me on steroids. I think those caused breathlessness and chest pain and many months after finishing them I still suffered but indthe end everything settled down. My MRI also shows a small amount of fluid and my cardiologist is of the view that that fluid will remain there and not resorb into the body anymore. But as long as there is no pressure on the heart that causes it to struggle, cardiologists won't do anything other than monitor. The alternative is to get that fluid out with a syringe in the chest and I don't fancy that unless absolutely necessary.

I think your pain comes from a combination of steroids, residual fluid and lupus flare - once you stop the steroids and get those out of the system and clear the flare, the chest pain will go away.

Snap! I experience exactly the same chest pain like i am being stabbed in my back through to my chest. Just last night i was awake the whole night with it i cant lie on my side or flat on my back without yelling in pain. I take naproxen which does ease it for a while but it always comes back. I also am breathless with it but i think this is to do with my lungs - ive scarring from previous bout of pericarditis (fluid around lungs). Ever since this i have this pain and my ecg etc are normal too? Rheummy says maybe just neuralgic pain from damage caused by pericardits or mixed connective tissue dusease. Im more settled now i know its not a heart attack but its so unbearable my rheummy/gp just dosent get it? Im glad im not alone with this :)

N1994 profile image
N1994 in reply to Shann07

Same here! I was up last night writing this post because I couldn't sleep and eventually gave up and took Nurofen. Naproxen helped me a lot and I almost felt no pain when I was taking it, I used to take it 3 times a day for a month but then my body started to get used to it and I stopped it. Have you had an MRI scan? my ECG and xray results were clear but the MRI scan showed a little bit of fluid around the heart. It really bothers me that doctors don't take this seriously. Just because the results are clear doesn't mind that the pain isn't there I mean that's how Lupus is. Hope you get well soon and thank you for replying! :)

Shann07 profile image
Shann07 in reply to N1994

Hiya, yes i did have an MRI and xrays and a echocardiogram 2 weeks ago - i told the screener how bad my chest pain is and she says she couldn't see anything significant which is good but still doesn't resolve the source of pain. My rheummy also thought it could be acid reflux but i don't have heartburn - thats been ruled out now because the pain eases with antiinflammotories! Like you i have still a little bit of inflammation and fluid around my heart and lungs from a severe pericarditis 2 years ago! The pain of this has never went so i think the chest pain must be from damage caused by this :( i do have scarring now on my lungs and rheummy says this can cause pain and discomfort too- its horrible, it feels like a belt around my chest all the time. Ive posted a few times on here but you seem to be totally similar with the heart/lung involvement! I hope you get answers - I'm due to see rheummy in 2 weeks for scan results so i will keep you posted xx.

Hi N1994

I've been having chest pain symptoms for over 3 years now and it's a nightmare. Best treatment for me is the NSAID Celebrex varying the dose from 300mgto 400mg when needed.If that doesn't work I can double my steroid dose for one day and go back to original dose and that works well. I've been told it's pericarditis or can be pleurisy depending on symptoms.Hope that's helpful and you feel better soon.I've got it at the mo.

After reading all these post, I just want to cry with relief. I also have severe pain in my chest, the middle of my back, pain my neck and left arm; Lupus is my culprit. This past wekend I was in the ER and had a stay in the hospital. Everything came back normal too. I failed my stress test; did not finish it because the pain was so bad in my chest. The heart dr. told me I was the worst out of shape person he had ever seen. I was dam mad because I also have severe leg pain day and night; it's hard to walk let alone run or walk. After that stay I was unable to get any answers, chest pian still here. This all makes sense,once you are labled they stop listening. I do have nurse practioner I am working with; better than the GP or the rheummy. Thanks for all the information!!!!

Hope all will feel better! I am not alone, and not insane!!!!!!!!!!! :)

Nothing worse than a Dr that does not listen or explore other options. At least explain ot. If you have pain upon Breathing in that would either be the lungs or possibly the muscles between the ribs. But why? Perhaps you could seek out a lung specialist or new lupus Dr.

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