Difficulty breathing with lupus?: There are times... - LUPUS UK


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Difficulty breathing with lupus?

jennawings profile image

There are times when I find it hard to catch my breath and I feel really puffed. This can happen when just sitting down or lying in bed as well as when doing activity. It isn't bad to the point where I struggle to breath, more of an inconvenience really. Also feels like I have heart palpitations with it too.

These are symptoms I used to get when I had a heart condition in 2009 which was corrected with surgery (since been discharged from cardiologist).

Could this be something lupus related?

16 Replies

Hi jennawings, you sound to be having very similar symptoms to those I've had recently....mine lasted a good six weeks or more this time tho I have had very similar episodes which resulted in thorough investigations in the past including coronary angiogram, chest xrays,blood tests, spirometry etc these were and always seem to have been completely normal despite convincing symptoms to the contrary..it has always been so frustrating as Gps then want to put it all down to stress or a possible virus because all tests are normal...However when I took my recent list of symptoms and results of tests by gp to my rheumatologist last week he said that it was typical of the way lupus behaves..he says it likes to play with the lungs and heart amongst other things and can present with all various symptoms of lung and/or heart conditions but quite often all the tests will come back normal...he said as I had been thoroughly checked out fairly recently...angio,echo etc then we ddnt need to worry that it had caused any damage as yet and it was just behaving in typical lupus fashion...It such a frustrating thing to have but understanding what it can do..especially in relation to it being such a mimic of other things...does help deal with the random symptoms it throws at us so much better and especially if we can be reassured that tests show the potentially serious things are ruled out..I now have to let my Rheumy know direct of any concerns and he will decide any future course of action but not to worry otherwise..I really hope your problems settle quickly it can be so tiring when you get out of puff so easily but I agree when you say it is more of an inconvenience than a real struggle I find the palpitations worse esp when they start to make you lightheaded...never a dull moment though!..take care xx

Hi Jennawings

I have sle lupus but for last 4 months also been suffering with newly diagnosed asthma - also had all the cardio and lung function tests!!! Still getting tested to see where asthma has come from, I personally feel it is related to the lupus. Presently have a chest infection so totally doped up with steroids and antibiotics to try and stop developing into pneumonia!!!! I am usually quite upbeat about all this, but I have to admit, here and here alone, not being able to get that deep breath and the palpitations because of the shallow breathing scares me

Shann07 profile image
Shann07 in reply to jacamac

Hi jacamac, i had to respond to your reply as your symptoms are so similar to mine! I read loads of posts on here but only a minority seem to have lung/chest issues with pain breathing etc and i do sometimes feel very alone with this. Like you i struggle just to get a deep breath at times & i have to really relax & be very calm before i can do it because my rib cage & airways are chronically painful & feel so tight & restricted. Its such a scary feeling but i have become so used to this i wouldn't know what normal is! Even though I'm on meds etc nothing can reverse the scarring & give me that relief which is horrible :( glad to know I'm not totally alone with this x.

jacamac profile image
jacamac in reply to Shann07

Thanx Sophieh, the best of it is, I had a new bathroom put in with a lovely jacuzzi bath!,!! This would help with my sore joints and be nice and relaxing - then lo and behold, asthma and I cannot lie back and relax, never mind add any smelly stuff because it triggers the asthma

Absolutely! I have lung issues caused by lupus, i suffer breathlessness & palpitations too. Ive scarring on lungs and have had percarditis in the past. Definately mention this to ur rheummy its def a lupus symptom. I did see a cardiologist too but thankfully was discharged but still a close eye kept on heart. Good luck :)

Hi Jennawings,

I have been diagnosed with Mixed Connective Tissue Disorder (SLE) which has damaged my lungs (Pulmonary Fibrosis) which started just like you, in 1987 when I was pregnant the shortness of breath started and of course my blood was checked to make sure I wasn't anemic but the doctor did discover I had a heart murmur and the cardiologist thought I had always had it so I would put down the shortness of breath to that (I wasn't diagnosed with lupus until 2006 even though I had all the symptoms of lupus years before and worst in the eighties).

Once I was diagnosed I was listened to and when I said I was breathless with a lot of pain I was investigated querying a blood clot in my lungs but the next day when the consultant saw me he immediately said the lupus has now damaged my lungs.

I was getting worst and on one of the admission to hospital I asked the consultant on the heart and lung unit if I couldn't have ambulatory oxygen. I was then tested to see how much oxygen is in my blood when I move about and of course not much so now I have oxygen, which helps a lot.

Thanks guys. I'm starting to question every single thing that goes wrong with me thinking is it related to the lupus?! Think I'm turning into a hyperchondriac!

I'm not scheduled an appointment until May so I guess I'll have to sit it out and wait until then before I get it looked at?

What is it that causes the shortness of breath? I feel really cheated... I feel like I smoke 20 a day at times. Never smoked in my life.

I don't know what's real anymore.

daisyd profile image
daisyd in reply to jennawings

Please don't wait until May make an appointment with your Gp,there are lots of tests you can have which may diagnose the problem. Don't leave it we can't diagnose ourselves

I have had Chronic Bronchitis and Asthma related to Lupus. The symptoms come and go with flares.

But sometimes even doctors will group things with Lupus that aren't necessarily related.

I have a heart condition that can cause the types of symptoms you describe, totally separate from the Lupus. Considering you have had this in the past it is possible that it is related, and that you should check with your doctor that you aren't having a recurring heart problem.

hello jennawings, I also suffer from shortness of breath and have been told its interstitial lung disease or lupus connective tissue lung disease. I have salbutamol nebulisers 3 times daily, and this helps the dry cough I have ,and relaxes the tightness in my lungs, and I just started on Rituximab which seems to have helped my cough a lot. I realise these might not work for everyone but its worth asking for a referral to a chest specialist. I have a job keeping my oxygen levels normal especially when walking, sometimes in bed I feel breathless and have oxygen at home now. I have also bought myself a pulse oximeter, like the things the hospitals stick on your finger to monitor myself. sorry but I could waffle on for ages, but please ask for a specialist referral as its horrid constantly being short of breath. Good luck.

Shortness of breath or difficulty breathing with lupus is not usually an occasional thing. It lasts for a while. The causes of chest pain on deep breathing in lupus are typically the result of pleurisy (inflammation of the lining of the lungs) or inflammation of the heart (usually pericarditis, but other layers of the heart can be affected as well).

hey, i get palpitations because of lupus for absolutly no reason at all. I could be sitting and its just an onset (sometimes may have to deal with things that i have to get done during the day- anxiety) therfore i do feel breathless resulting in this. just let your rhemy informed of these symptoms, they may be able to help. take care.

I am worried also..as i have the same symptoms. Shallow breathing. Huff and puff and cant seem to take in enough oxygen. Pain and discomfort in lungs.

get in and see your gp as soon as. I had the same thing, turned out to be nothing but it better to be safe than sorryyy xxxx

It might be Pleurisy, also called pleuritis, is an inflammation of the pleura, which is the moist, double-layered membrane that surrounds the lungs and lines the rib cage. The condition can make breathing extremely painful. Sometimes it is associated with another condition called pleural effusion, in which excess fluid fills the area between the membrane's layers.

The double-layered pleura protects and lubricates the surface of the lungs as they inflate and deflate within the rib cage. Normally, a thin, fluid-filled gap -- the pleural space -- allows the two layers of the pleural membrane to slide gently past each other. But when these layers become inflamed, with every breath, sneeze, or cough, their roughened surfaces rub painfully together like two pieces of sandpaper.

In some cases of pleurisy, excess fluid seeps into the pleural space, resulting in pleural effusion. This fluid buildup usually has a lubricating effect, relieving the pain associated with pleurisy as it reduces friction between the membrane's layers. But at the same time, the added fluid puts pressure on the lungs, reducing their ability to move freely. A large amount of fluid may cause shortness of breath. In some cases of pleural effusion, this excess liquid can become infected.

If it is it nothing to get too worried about as their is medication you can take to cure it.

Hi I'm glad I've seen your post. For some time now on and off I get episodes where I feel like I can't take in enough breath and have the feeling of palpertations. I feel like I can't breath properly which can be quite panicking.

I've seen the docs and I'm had blood tests a chest x-ray and I'm having an ECG tomorrow.

Doc has told me to mention this to my reumatology consultant when I next see them. I'm worrying about it which makes it worse.

I can get breathless even when sitting.

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