Upper chest pain when breathing while lying down. - LUPUS UK

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Upper chest pain when breathing while lying down.

Naladog profile image

Hello dear lupis,

Here my beautiful Nala 🐶. 14 wonderful years always next to me.

I am sure it has already been discussed in this group because I know that chest pain is very characteristic of these diseases. Sorry if it is the case.

I have had it previously and it has always been omnipresent for a few days and then gone. However, for the last month or so, I have noticed pain in the upper part of my chest when I take deep breaths and especially when I lie down in bed. That's why I notice it, because I don't normally take deep breaths during the day. However, when I get into bed, just by breathing the pain is there and what I do is put cushions under the pillow to be more inclined and not notice the pain.

Today I have written to my GP for medical advice. It has taken me a while because there comes a time when I feel bad for contacting so much for a thousand different reasons 😅🙃.

Has anyone else had the same thing happen to them and have they already got a diagnosis?

Thank you very much .

Have a wonderful evening 🦋💜🦋💚✨

20 Replies

Good to report to your GP. All chest pain needs reporting.

However if it’s only noticeable when lying down then quite likely to be acid reflux - if no burning or feeling of regurgitation then could be silent reflux. Propping with pillows isn’t good for your back/ neck - you need a wedge for under your mattress or bricks under your bed head to raise it so the acid doesn’t keep spilling back up. It has to be all the way down the bed so you’re at a tilt rather than just head, neck and oesophagus.

Naladog profile image
Naladog in reply to OldTed60

Thank you very much for your reply OldTed60 .I have no burning or regurgitating feeling. I notice it also when I take deep breaths during the day for some exertion or from time to time to see if I notice it. However, when I am lying down I don't need to exert myself to feel it. It's like a pressure on the left side and I don't know if it's something to do with the Covid19 or not...let's see what the GP thinks....

Thanks a million.

OldTed60 profile image
OldTed60 in reply to Naladog

Well this is what I thought about mine too - particularly bcos I’m max treated for reflux already.

But had a gastroscopy which showed new small hiatus hernia and other stuff wasn’t there before - told me chest pain is my overlapping CTD progressing in gut. Spoke to my rheumatologist 2 days ago on phone review they told me you can have silent reflux feels like heart or lung problems - same with mouth lesions/ ulcers. They told me the silent reflux can cause lung damage so very important to treat but I have early stage lung fibrosis due to it being silent.

Important to get checked though but maybe look up LPR see if it fits with your times of eating and what you’re eating. I have heart scans and ECGs regularly for my CTD and so far all good. Got my 2 yearly lung function tests in a couple of hours but sure nothing will show.

healthline.com/health/silen...

I have this all the time, sometimes I can't lie down. When I have a flare it attacks my heart and lungs. Long with other areas. I've had numerous scans and nothing showing, so no diagnosis. Just something I have.

Hi. I also have chest pain which I've had prior to diagnosis. For me it's lung involvement due to lupus. At the time I spoke to my rheumatologist and he referred me to respiratory and my treatment has been ongoing since

Naladog profile image
Naladog in reply to CarolMcl

Thank you very much for your reply CarolMcl What scans or tests did the doctors do to diagnose it, please?

CarolMcl profile image
CarolMcl in reply to Naladog

Once referred to respiratory I had spirometry tests followed by an x-ray and CT scan which showed some scarring. Appointments were 6 monthly after that, each one preceded by spirometry. A few years down the line I was admitted with pericarditis but thankfully have had no further episodes. Unfortunately even with regular respiratory appointments, my lungs have got worse, I now have fibrosis along with the pneumonitis. As well as taking methotrexate, I've now been commenced on retuximab infusions to hopefully prevent further deterioration.

Naladog profile image
Naladog in reply to CarolMcl

Thank you for all the detailed information. I am so sorry about your health issues 🥺.The good thing is that you are well monitored and treated. Hopefully it will go away or not progress any further.

My best wishes.

CarolMcl profile image
CarolMcl in reply to Naladog

Thank you for that. Hoping the pneumonitis will get better but the fibrosis won't. As you say, hopefully it won't progress any further 🤞

Thank you very much for your reply Teanau22 That must be very frustrating for you. They haven't given you any explanation, what tests have they done?

I thought it might be some inflammation of the pleura or pericardium due to an infection (like Covid19 for example) or some autoimmune issue...that comes and goes but the truth is that I've had it for quite some time now.

I get something similar - I really related to your description. I think I have a pain due to (i) pneumonitis, (ii) maybe sometimes inflammation of pleural membrane and (ii) also inflammation of joints between the breastbone and ribs.

Then I sometimes also worry about my heart and referred pain, particularly with pain on left side.

My GP was good last time I contacted surgery. I phoned and had to reassure receptionist that I had connective tissue disease and my pain in chest may not warrant me calling 999, that in my case I just needed a GP appointment.

The GP then phoned and asked me to pop over for ECG in next half hour. He then called me into the office and listened to heart and to breathing etc. I could discuss everything too.

All the best contacting your GP. Hope all goes really well 🙏

Thank you very much for your reply StriatedCaracara . I am sorry to hear you get something similar. Take care you too.

Sounds very familiar. My consultant believes it to be costrochondritis that causes that pain for me

Thanks SnowSeeker19 . We already have a few issues to point out: silent reflux, costrochondritis, pericarditis, pleuritis, etc...

News: A GP has called me and he says that pain doesn't sound cardiac. A nurse is going to do a TCI for ECF tomorrow.

OMG! Nala is beautiful. Thank you for sharing her with us. You have been given some good advice. I hope you get some answers soon. Anything that even seems like it could be heart related is stressful.

Healing hugs.

I had this on and off for years. I couldn't lie down and taking deep breaths hurt. I had to lie still and take the strongest painkillers I had until it passed. I could not walk around. The Consultant thought it was either inflammation of the intercostal muscles or inflammation of the lining of the lungs. They never really knew. My notes show that I suffered from pleurisy and although the symptoms are not quite the same, it could be connected. It came and went for many years and was the main problem for me causing me to be off sick from work at times. It definitely wasn't acid reflux. Hope you get better soon.

I also have this. It first started after being diagnosed with lobar pneumonia and has never stopped. Certain things can aggravate it, I've found. Unfortunately, by the time I've been seen by a rheumatologist, the worse has subsided and I'm constantly fobbed off. So far, only A&E have observed when it occurs. My body temperature drops and my peak flow reading is very low. The chest pains wake me up at night and when it's really bad, the boney area of my upper chest feels as though it's going to crack any minute.

As I've been left to manage it by myself, when I'm able to, I have a hot bath and try and splash some of the water on the chest area. I find the warmth of the water helps alleviate the pain somewhat but not entirely. It takes the edge off. I'm sure the uncomplicated version would be a hot water bottle applied to this area.

A&E provided a nebuliser but the effect is temporary - only lasts for one hour but this is only used as my last resort because there have been times when I am unable to walk with it and the pain becomes unbearable.

In a nutshell, they still don't know what's causing it. It's definitely not gastro/acid reflux - for me, it wasn't. Although, it was mentioned to me that a lot of lupus patients get this but nobody has been able to identify the cause.

It's horrible and quite frightening as well.

Thank you Amakura for sharing your experience. I hope you can manage it as well as possible.

I've been feeling like this since I had Covid19, I've told the GP many times.

The nurse did an electrocardiogram last Friday and said everything was fine.

I was told it was musculoskeletal and to take Ibuprofen or codeine for a few weeks.

When it hurts to breathe too much again, I'll go straight to A&E and that's it.

hi Naladog , is this pain on your right or central or back ? does it radiate to your arm ? if it on your right is it under your ribs?

It is in the upper chest on the left side when breathing. It radiates to the same side at the back. Thank you very much for your interest KnitSewPurl

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