Out of breath

[669rivers]

Wondered of anyone has the same problem as myself. I am on oxygen but even with it I get so out of breath all the time, even when moving from one room to another, I seem to spend most of my time now sitting down, once my sats are up I can do without oxygen. I have not been out much for a few weeks because of the weather and I find it quite depressing staying in so much but beginning to dread going out because of being out of breath all the time except when I am driving.

[Ratatouille]

Hi

I too have been struggling with 'winter illness', breathing is very difficult and usual meds have not helped but blood tests have suggested a virral infection could be to blame which has thrown my other readings out of sync. Can you get a full set of bloods done as your meds may need tweaking.

[669rivers in reply to Ratatouille]

Thanks for that, I do have an appointment with my doctor on Monday, will ask for a blood test, lets hope spring is on it's way. After saying that last year I found the heat didn't do me any favours, can't win.

[Mandy6513]

It sounds like you would benefit form doing a pulmonary rehabilitation course where they would teach you all about coping with being breathless and managing it better ...you should mention it to your doctor

[669rivers in reply to Mandy6513]

I did PR early last year and a few days after finishing I caught pneumonia, it took quite a long time to get over that. Since then I have had either a cold or chest infection every 3 months, it seems never ending.

[Mandy6513 in reply to 669rivers]

Yeah it really can seem like its never ending...Just because you did PR once dosnt mean you cant do it again and it sounds like it would do you good to get out of the house...Its really difficult going out when you dont actually have anywhere to go ...

Tell you doctor about everything that your struggling with and perhaps see if there is a breathe easy group near you ...You can really lose a lot of confidence staying home alone i know that from my own personal experience but as far as being breathless goes you can only learn to manage it,,, i know its horrible pace yourself when your doing things and use the pursed lips breathing always remembering to breathe out longer than you breath in.

[669rivers in reply to Mandy6513]

Thanks for your advice, tomorrow I will try to get out, go for a spin in the car.

[Mardi in reply to 669rivers]

Is the PR with a group of people with lots of infections? It's hard not to catch things from others. We can't stay home to avoid germs -too depressing.

[669rivers in reply to Mardi]

It's hard to know who has an infection they don't tell you and sometimes I am not always sure if I have an infection myself. As I said before, I sing in a choir but have not been for 6 weeks now not being well, it's on a Thursday, today, and yesterday I thought I must really make the effort and go until I had an email from the lady who sits next to me saying she has a cold but would go to the choir anyway. I do not want another cold so I stayed away, there are about 40 ladies in the choir, is she going to pass it around, do I take a chance and go next week?

[Mardi in reply to 669rivers]

I would go and take the risk but it's a difficult decision if you are on oxygen.

[669rivers in reply to Mardi]

It sure is difficult to make up your mind sometimes, to go or not to go, that is the question. I am so tired of staying in I expect I will take a chance and go, thanks for your comments.

[stone-UK]

Hi

Oxygen therapy is to protect major organs rather than resolve breathlessness, although it will take the edge of.

Infections will impact your breathing even on oxygen.

If you are infection free, have you had a oxygen review, I used to go six monthly now annually.

One such review my oxygen was changed from 2lpm up to 4lpm.

[669rivers in reply to stone-UK]

Hi, I do have an appointment on Monday to see my doctor I will ask her to check me over, I have my appointment at the hospital in April for my 6 monthly check up.

I am on 2ltrs wondering what difference it made to you when you went onto 4ltrs. Are you on oxygen 24/7. Are you able to go out and walk around for long? I really only need it when I am moving but even with my oxygen on I am so out of breath I have to stop a lot.

[stone-UK in reply to 669rivers]

Hi

No only Ambulitory oxygen for exercise and moving around, being stage four, I still get breathless even on short walks.

The reason for extra oxygen was because my sats dropped to below 88% the extra 2 LPM kept my sats at 92% not a major difference in walking abilities

I have emphysema which is the inability to exhale properly.

Often referred to as glass half full. You can't put a pint of liquid into a pint glass that's already half full.

Learning and practicing several breathing techniques will increase your abilities, exercise no matter how small will also help.

Breathing techniques are.

Pursed lip breathing, inhale for four seconds hold for two seconds ( optional) breath out six seconds.

Diaphragm breathing, push stomach out to inhale, draw stomach in to exhale.

Blow and Go. Stop to inhale go or perform a task or part of the task on the exhale

[669rivers in reply to stone-UK]

Thank you for the information, I must get myself motivated, hate sitting around all day, I do sing in a choir when I am fit, I think that helps me some, but being unwell for the last 6 weeks I have not been able to go. Must practice the breathing, thanks.

[Mardi in reply to 669rivers]

I have asthma and mild bronchiectasis and mild atelectasis (tiny spots of collapsed lung) Luckily my lung function is 90%. No oxygen of course but I still find myself doing the pursed lip breathing many times a day . You may not be able to manage the Buteyko method where you breath out slowly with pursed lips for as long as you can (20 to 30 seconds for me) then hold your breath for 10 to 15 seconds . It moved your breathing way down to the bottom of your stomach. Very handy if you are puffed and stressed!

[Carnival567 in reply to stone-UK]

Really helpful, thanks

[Watfordgirl]

I'm sorry you're feeling so breathless, 669rivers. Oxygen use and oxygen levels can be a bit complicated.

It's common to feel breathless when your oxygen levels are all right. You should use it all the time moving around until your breathing improves. Try not to be anxious when you're pottering about because that will make you more breathless. Stop and rest if you need to, until your breathing recovers.

Try not to sit down all the time. it weakens your muscles which then need more oxygen to work. it will also weaken the muscles you breath with. Mandy's right about asking your GP to refer you for Pulmonary Rehab. You'll exercise which will help those weakened muscles, and you'll learn lots about breathlessness and about your condition. It will put you more in control so you can manage better.

Don't despair. Small steps. And most of us are staying inside while it's so cold or so wet.

Take care, and do let us know how things go. Oh - and take your oximeter with you to your doctors so that you can check it's giving the same reading as hers.

Sue x

Btw - it takes about 6weeks for your breathing to get back to your normal after an infection.

[669rivers in reply to Watfordgirl]

Thanks for your reply. I suppose deep down I know I should be doing some sort of exercise but I find it hard to get motivated, I live on my own so don't have anyone to give me a push. Thanks for the advice

[Watfordgirl in reply to 669rivers]

I hope I wasn't nagging? Even pottering about will get your muscles working. Like I said, small steps. x

[669rivers in reply to Watfordgirl]

Not at all, it's nice to chat on line with somebody rather than spend a lot of time playing Scrabble as I do.

[Hidden]

Hi the fact is the stronger your muscles are the less oxygen they will need to be active. But it is difficult to get going when you feel breathless all the time. It's a catch 22 situation. I guess you have to live through the breathlessness and persevere but that's not easy and I appreciate that.

The good news is there are others here who have done this and they find their breathing is a lot better, even at the severe stage. x

[669rivers in reply to Hidden]

Thanks, yes I must take everybody's advice and start to exercise every day.

[Mardi]

Dud you learn specific exercises which strengthen the muscles around your neck , shoulders and diaphragm?

[sarcoid123]

669 rivers: I would like to recommend two resources from the British Lung Foundation to help with exercise. I am on 4litres a minute oxygen when walking around and 2litres a minute when sitting and sleeping. I went to pulmonary rehabilitation a year ago but, as much as I promised myself, I have not been doing the exercises much at home. For some weeks it has been a bit of a struggle to walk outside the home even on continuous oxygen at 4litres/min. About a week ago someone on Healthunlocked (I think it was Mrs Mummy, one of the overseers of the site) recommended a booklet and video by BLF to help with exercises, and I sent off to the British Lung Foundation for their Exercise Handbook cost £5

shop.blf.org.uk/collections...

and their Stay Active Stay Well DVD free shop.blf.org.uk/products/ex... You can order on both webpages. The DVD does not have a couple of exercises I learned at pulmonary rehabilitation, such as step ups and gentle weights, (and stationery cycling), but I can add these of course.

I have today followed the exercises on the DVD and find them excellent (they give you three levels) and with just one session today I feel so much better. it is just like having your own physiotherapist in the house. Thank you BLF very much. I will definitely continue with the exercises using the video each time and will try to do them most days. It will need me to devote 30 to 45 minutes to warming up, and then the exercises, and then the cooling down exercises.

I am going to start a new post with this message as most people will already have read this post.

[669rivers in reply to sarcoid123]

Thank you for taking time to give me the information and links, I will have a look at them tomorrow.