Lupus SLE and APS breathing issue: Hi I’m starting... - LUPUS UK


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Lupus SLE and APS breathing issue

Bobbydoodle profile image
12 Replies


I’m starting to piece together my lupus symptoms. I say piece together as with the fluctuations in levels and occurrences of symptoms I sometimes forget how it was the last time if that makes sense.

So I’ve had this issue with my breathing where I can’t catch a full breath if that makes sense.. I’ve kind of normalised it but recently I almost make a noise like a heavy sigh when I need to get the air. I’ve just remembered that this has happened before and seems to coincide with more aching, burning muscles and increased fatigue etc

I have had my heart checked and there is a slight mitrial valve issue but deemed so minor ai don’t need it checking again for 2 years so it can’t be that.

Brain fog I’m realising also means I might not give specialists the full picture or piece it together myself as although I was diagnosed a few years ago I think these type of illness are a long game learning experience.

Does anyone else have this issue with the breath?

12 Replies
Spanielmadlady profile image

Hi is possible you may have a dysfunctional breathing pattern.if you put 1 hand on your chest and 1 hand on your belly which moves most ? Dysfunctional breathing contributes muscles aches and fatigue amongst other things due to the amount of carbon dioxide altering the pH in the body.the feeling of not being able to get air in is called air hunger .it's abit complex .I've had breathing issues for over 8 years now and 2 weeks ago had my 2nd lung flare in 6 months and they are finally beginning to accept is maybe caused by my currently having respiratory physiotherapy to correct my breathing pattern.if you Google dysfunctional breathing and go to the potsuk site it has info on DB including signs you may find useful. Kind regards xSMLx

There is plenty of info on other sites but I've had it explained by a respiratory physio so understand it abit more. the pots site is the easiest to read and understand then if you think it may apply to you you can put it on a list to ask your Rheumatologist x

Bobbydoodle profile image
Bobbydoodle in reply to Spanielmadlady

Oh really? That’s really interesting and it’s why this group is invaluable as although obviously it might not be this for me if gives me something to research and to query with my specialist that even they might not know or have thought of.Thank you 😊

Spanielmadlady profile image
Spanielmadlady in reply to Bobbydoodle

Good luck I hope you get some answers x

Tiggywoos profile image
Tiggywoos in reply to Spanielmadlady

Thank you 🙏 as always for this reply so helpful and informative . 😘xx

Spanielmadlady profile image
Spanielmadlady in reply to Tiggywoos


CarolMcl profile image

Hi. As you've pointed out, it's not easy trying to remember everything. You should keep a list of questions and symptoms to discuss with your specialist, that should help. With regards to breathing issues, I too experienced difficulties. Fortunately my rheumatologist works closely with the respiratory team and it's been confirmed that SLE is the cause of my problems which have been identified as pneumonitis and fibrosis

Bobbydoodle profile image
Bobbydoodle in reply to CarolMcl

Thank you 😊 I will definitely start making a list and mention the respiratory team if it’s not mentioned by my specialist next time.

Tiggywoos profile image

Hi Bobbydoodle thanks for a good post 🤓.

So sorry to hear you’re struggling tho . It did resonate with me as I’ve been finding that even if I am just doing some polishing or walking up or down stairs the same thing happens. Its not like been out of breath it’s like you can’t catch your breath isn’t it ?

You’ve had great advice and definitely write it down which has prompted me to do the same !

Big hugs and take care xx

Bobbydoodle profile image
Bobbydoodle in reply to Tiggywoos

Thank you 😊

Krazykat26 profile image

Totally agree with the long game learning experience Bobby 🤗Ever changing faces of long term chronic conditions certainly keep us on our toes. This is why I find my symptom diary the best tool for me to track patterns n do my own detective work. Then I can ask pertinent questions at appts with specialists coz time is short!!

I do have problems with breathing at times..usually if I've overdone it which might be as simple as cleaning my teeth 😹When I'm in pain I tend to breathe quick shallow breaths n I try to focus on my breath more when I'm in that space or else I add anxiety to my problems. 💜🌈😽😽Xx

MusicalFurbaby profile image

Hi Bobbydoodle, good question! I’ve had breathlessness for the past 2 months, but mine might be a bit different to yours, mine was sudden onset with a flu, and it hasn’t gone back to normal since. All tests so far normal. I can’t help you too much yet, until I get it diagnosed! All I can suggest is to get yourself checked out, as you did with your heart, to rule out the obvious things. Be sure to tell your doctors about lupus, so they know to check for some not-so-obvious things—but you’ve probably already done that! Keep us posted and all the best ☺️

Minnie2000 profile image

Yes, I've had issues with my breathing for years now. I, like you, never feel like I've taken a full breath and then feel like I have to take a really big breath to compensate. I was also finding that my breathing was 'juddery'. The only way I can describe this is it is a bit like how a child breaths after they have been crying - sort of taking 3 quick breaths in at a time. I was referred to have my breathing assessed but the appointment came when I was being treated for something else so haven't been yet. I also get a dull heavy ache on top of my ribs sometimes. I take a steroid I haler every day as I have allergy induced asthma. Hope you get it sorted. Take care.

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