bronchiectasis, asthma and long covid

[Emily-G]

Hi, I’m about 3 months into my bronchiectasis journey since my diagnosis earlier this year. My 3 month azithromycin trial went well and is now on my repeat prescription list (with it feels like a million other things )

I went for assessment for pulmonary rehab and the physio decided I’m too affected by long covid for pulmonary rehab right now. It’s well over a year since I had covid so I am a bit disappointed.

I am really struggling with 2 things still. 1 is holding my breath for the cycle breathing for chest clearing - my physio has me doing in for 2 hold for 2 take a little gasp in and breathe out which has made things easier

The other is tiredness. Doing the smallest thing sends my heart rate sky high, my colour goes and I’m breathless and dizzy. I always thought it was asthma related but my physio says it’s long covid. Has anyone any tips for managing energy levels/rest with asthma, bronchiectasis and long covid. This has me so completely floored and doesnt seem to be improving at all which is v frustrating.

sorry for being moany, I know I am lucky to be as well as I am otherwise, hugs to anyone who needs one , Emily xx

[Alberta56]

Tiredness is my great bugbear too. I haven't really found a way to deal with it; I just have to go with the flow when it's really bad- can't do anything else when I fall asleep in the middle of doing something. I do try to do regular exercise to try to boost my energy levels- I go to Pilates and a Balance class. Don't know if these are helping or not. The amount and type of exercise depends on how well or ill I feel. I shall be interested in the ideas other people come up with.

PS. Improvement after illness does come so slowly that sometimes it doesn't seem to be coming at all. I hope you find you're feeling better SOON. See if you can find NatWright's posts on this forum about her journey to recover from long covid. Best wishes, Chris xxx

[rosco59]

It sounds like you’ve been through a difficult time. I just wondered if you’ve had your iron levels checked? I feel tired a lot of the time - I think it’s part and parcel of our condition - but I have benefitted a little from using iron and b vitamin supplements.

[Emily-G in reply to rosco59]

Good idea, last time mine was checked (before covid) I was low in iron and vitD. I’m supposed to be taking vit D and calcium for my bones from all my steroids for my asthma but I have stopped. I ll get started again and see if I can get an iron check. It really is an uphill struggle when iron is low.

Thank you xxx

[Izb1]

I suffer from fatigue which I think is connected to my rheumatoid arthritis and bronchiectasis and now my hip has gone and I'm not sleeping I feel like a zombie most days. I have added zinc to my daily meds along with magnesium at night time and hoping this helps a little. I sometimes use an iron tablet which I think might help. Hope you find something that works for you x

[Emily-G in reply to Izb1]

I’m glad supplements are helping you a little. I need to look into starting and getting back on supplements.

I hope the magnesium helps you rest, it’s very hard when you can’t get enough sleep. Thank you for your reply, Emily xx

[leonierose]

Hello Emily So sorry to hear about your conditions I also wrestle with tiredness and am rarely up after 10 pm at night

I also find Yin Yoga helps me relax You do not stretch your muscles but the connective tissues and this makes you more flexible .There is no aerobic part to it so you never get out of breath . It makes me feel I am doing something to help my body without worrying about coughing and breathlessness . I also avoid stairs as I inevitably have a coughing fit after climbing stairs and this makes me embarrassed .Hope you get some relief soon

[Emily-G in reply to leonierose]

I’ve been meaning to have a look at yin yoga, I think it could be perfect for me. I love a flow but my ones I already know have too much bobbing up and down and I get dizzy. Stairs are the worst though. I think that’s what got me down. At my daughters graduation there were so many stairs it just knocked the breath out of me, more than a week later I’ve still not really recovered (was an amazing day but I got so tired and breathless) I get embarrassed too with coughing, it’s like everyone thinks I’m full of horrible germs. I sometimes think I should have a tshirt printed saying not a covid cough

Thank you for replying, it’s good to not feel alone, Emily xx

[Jess_hill]

Re your physio question, I've tried various airway clearance physio techniques and none of them involved any breath holding. What I do now is just in-breaths then outbreaths through an open throat, gradually increasing breath length with about 6 normal breaths in between rounds. After that a few 'huff' breaths, then coughing the mucus up.

[Emily-G in reply to Jess_hill]

thank you, I’ll try this, holding my breath is really tricky these days, this sounds a lot more doable for me

Thanks again xxx

[Cherwin in reply to Jess_hill]

Hi can I ask when you say ‘open throat’ do you mean breathe through the mouth?x

[Jess_hill in reply to Cherwin]

You can do it with an open mouth if it's easier or until you learn to do it, but generally, no, the mouth is closed, you just open the glottis when you exhale - you can imagine saying a 'h' sound.