Breathlessness on exertion only

Hi all, I'm new to group and have respiratory bronchiolitis interstitial lund disease diagnosed 10 years ago, my question is does anyone else just get breathlessness on exertion? I seem to be fine until I have to go up a steps/stairs or a hill, within a few steps I cant get my breathe and get a banging headache

[Katinka46]

Hello Julie and welcome to this group.

I am intrigued by your story because I have bronchiolitis (obliterative) and as these small airways diseases are rare I am always keen to add to my understanding. Do you feel comfortable telling us little more about it?

How was it diagnosed? And was there a cause?

I am sorry I cannot really help with your question as I am breathless all the time. Do you use an oximeter and does the breathlessness coincide with a drop in oxygen sats? The reason I ask is that I think low sats can cause a headache.

There are several members with bronchiolitis and they will respond to you with their experiences.

All the best

Kate xx

[Hidden in reply to Katinka46]

Hi and thank you for the welcome. When I was first referred to chest clinic they did various tests which included a ct scan which showed nodules in my lungs, which I panicked about having already had breast cancer, they then offered me an option to have lung biopsies to check it out do I agreed, so I was diagnosed from the biopsies, ive always questioned whether it was the correct diagnosis still though as apparently the main symptom is a cough, I've never had a cough and still don't cough so I just don't know

[Hidden in reply to Katinka46]

Oh and they said the cause would have been smoking

[Katinka46 in reply to Hidden]

I don't cough either. Obliterative Bronchiolitis is often fibrotic, so I do not get inflammation, wheezing or mucus production. But there is a neutrophilic version which is more prone to those things. Mine was — very bizarrely and still baffling to doctors — caused by pulmonary emboli that I got after a hop replacement operation.

All the best

Kate xx

[Buzzytruk in reply to Katinka46]

I don't have a cough either, unless it's after a bout of acid reflux.

Mine was diagnosed by Papworth after seeing my scans.

Told the cause was as a small tot had a very serious chest infection, anti biotics were not as available as today so not treated.

Only in later life did problems start to appear. Although thinking back there were times when I was a bit breathless, but took no

notice.

Jo..... 😊

[Bkin]

This is very common for me, a daily event, always has been from first diagnosis 16 years ago.

I just tend to carry on doing stuff, living with it day to day, it is the norm for me.

Keep up with any regular exercise, drink plenty of water to keep hydrated, eat well, take inhalers as prescribed.

Taking reliever med before activity can help.

My diagnosis is emphysema ( copd) and bronchiectasis.

[Liberty43 in reply to Bkin]

Thank you for that! Feel fine most of the time, until l go down to the mailbox(live in a flat), then going upstairs again, worn out, making bed same. Know l must exercise more so now making a serious effort. I have severe bronchiectasis and RA. My oxygen levels are lower than normal but not much. Usually 94 to 97 but now can go to 90. Don’t think l take my reliever enough as don’t feel l need to most of the time. Not at all common for me unless l attempt to go up a hill outside, which haven’t done since 13 March. . Suppose the stairs are like a hill for me at the moment so will use my reliever. On second floor of three so usually no problem when l am not carrying shopping. We have a lift but a bit worried about using it at the moment as only use it when carrying shopping. My shopping now delivered so the delivery man uses the lift! Only been going down for Mail since about 2 weeks ago and only do it about twice a week. My lovely neighbours take my stuff to the bins, so l am lucky and grateful for that.

[absmith in reply to Bkin]

hi I have the same emphysema-Copd -bronchiectasis I got the results in January I had Follow up appointment in March with my lung specialist at hospital but got cancelled due to lock down

Thanks Mandy

[wheezyof]

Hello, I have obliterative bronchiolitis and bronchiectasis. A strange mix.

The ob has caused fibrotic scaring of my small airways. A lot of air gets trapped in tiny pockets and heavy breathing caused by stairs, slopes, stretching etc causes pain and horrendous breathlessness.

The bronchiectasis is in the bottom lobe of both lungs. It causes air trapping, a mas of nasty thick, sticky mucus.

My oxygen levels are about 90 - 94 resting and drop lower on exercise but come back fairly quickly.

As scaring makes lungs less flexible it's better to do a greater amount of gentle exercise than short bursts of heavy exercise. Resting half way up the stairs helps me. When I go out (not now I'm shielding) I use a wheeled walker with a seat. Slightly leaning on it means your leg muscles take less strain so use a fraction less oxygen and when you get breathless you can sit and 'get your breath back'.

The bronchiectasis means a good while each day is taken up with lung clearing exercises, huffing and coughing. I don't take drugs for this I had a bad reaction to them. I use a flutter instead. It's like a chunky bubble pie, has a meatal ball in it that vibrates as you blow, shakes the mucus loose.

The oxygen levels remain high enough because the bit of my lungs that are not diseased still function well.

To maintain that wellness I take azithromycine 3 days a week, keep to a healthyish diet, and do as much as I can.

A good guide to how much exercise you do at any time, While active say aloud "This exercise is doing me good".

If you can say it straight through (and have no chest pain) keep going longer or try a little harder.

If you need to take a breath during the saying, slow done the pace a fraction, of do slightly shorter sessions.

If you re gasping and struggling to say it. Stop! Try something less strenuous, gradually doing more to build your strength.

If you are struggling with getting abut and it affects your ability for normal life check to find out if you could qualify for financial help. blf.org.uk/helpline.

If your feeling of breathing cold air persists you may need a stronger antibiotic for a while.

Keep safe x