Trouble breathing

[Sarah_H]

Hi 😊 Does anyone else have trouble breathing when they're laying down? Not in a breathless/panting kind of way, it's more like the air I'm taking in isn't inflating my lungs properly? My lungs are affected by my lupus, very sensitive to changes in my steroid dose (which hasn't changed for a few months), but are generally not too bad (I use a Qvar inhaler, max dose, morning & night). I don't have a cold or a cough, it's just like my lungs & ribs are too tired to make the effort? Having another lung function test next month, previous one was 3 years ago & function was fine then.

Worried it might be a heart problem as I'm extremely overweight? Doesn't happen when I'm up & about during the day although I'm not particularly active due to a back issue. Anyone else? Ta 😊

[Natura]

Sarah, yes. I have had breathing trouble on and off for awhile now. Breath test shows fine. I recently went to my GP, and he ordered an xray for me. Which I denied, because I asked him, does the xray show inflammation? He said no. So, I said, ok then.

I believe it is inflammation. I have had high CO2 in my blood sometimes, and believe it is lupus connected. I have found some relief in taking NAC (ask your doctor first if it is ok. I am not on meds for lupus, as I am low end and try to treat naturally). It is an amino acid. For some reason it is known to help with breathing, copd patients. It is actually for the liver, which I find interesting that it helps.

Chia seeds in smoothies supposed to help breathing as well. Again, ask your doctor if this is ok to take before trying. I get a lot of phlegm coming out of my lungs sometimes, so I do believe it is inflammation of some sort. Breathlessness, even hard to take deep breathes. But, as usual, it comes and goes. I hope this helps a little. You are not alone.

[Sarah_H in reply to Natura]

Thank you Natura, I've just looked NAC up & the benefits sound very interesting, I'm going to speak to my lupus nurse practitioner about taking it. I find that I can produce a lot of phlegm which means I then use my steroid inhaler more to help calm my lungs down; I'd much prefer to use a natural method.

I'll check about the chia seeds as well, I've got a nice recipe for a chia breakfast pot which I could try.

Thank you so much for your reply, it helps to know I'm not alone. Lupus can be so scary x

[Natura in reply to Sarah_H]

It certainly is scary to me. I rely on this site a lot for support, because family doesn't seem to get how scary it is. Sometimes I feel so alone.

[johare]

I have shortness of breathe but it is mainly due to anaemia. My lung function tests have been fine. Please remember if your Hb is ok your ferritin levels may still be low.

[Fennella02]

My breathing is particularly problematic when I am horizontal. I am quite slim and active and initially my spirometry looked a ceotable. However, I wasn't happy with hearing that my breathing was fine when I knew that it wasn't. My consultant ran tests for respiratory strength and this showed very low results indicating diaphragmatic weakness and significant small airways disease. Despite treatment, my lung function has dropped considerably and I am now treated much more aggressively.

Unfortunately your doctors will blame everything on your weight - just as they blamed everything on my low weight. They've moved on from that particular fixation now, thank goodness!

Persist with the docs if you believe you have needs that are not being addressed. Good luck x