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I am fine when at rest but when I am moving around I am so breathless!!!!!!

12 years ago•13 Replies

I have been told by my consultant that I do not need oxygen yet, well that is fine but I am having trouble moving around, have a stair lift which now I use all the time!! I really feel that I would be so much better off if they would give me oxygen for walking and doing things in the house!! have osteoporosis as well, and have a compressed fracture ( now 8 weeks) and so that has been difficult, just want some life back how ever small, does anyone have any ideas, my GP is very supportive as he sees me far more that my consultant does.

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Marian-Anne

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13 Replies

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12 years ago

Its important you move around especially with osteoporosis, both your lungs and bones will deteriorate more quickly unless you start a regular routine of exercise, the less you do the quicker you will deteriorate and more breatheless you will become, from what you have said you have de-conditioned and need to start reconditioning, walk up and down little and offten, repeat throughout your day. Speak to your GP about referral to pulmonary rehabilitation and meantime ask about what exercises you should be doing to try and regain more mobility. Even with severe lung damage its important you do some regular exercise. It is essential for your bones that you do.

You might want to investigate chair based exercise to begin with progressing to optional standing. Extend is a good exercise programme if you are finding things difficult, also your local osteoporosis group may well have an exercise group going.

Hope you make contact with someone soon and can access a PR course through your GP. Don't think you can't manage exercise, there is always something to suit.

Your doc can also refer you to the occupational therapy team.

Do keep in touch and let us know how you are getting on. Looking forward to hearing that you have been able to access something and that you are enjoying the benefits gained.

Good wishes

Marian-Anne in reply to 12 years ago

Thank you for your reply Zoee, I have always been so active and to be honest have been scared to do too much in case I fracture anything else in my spine!! silly I know but did not expect it to happen! I have booked myself into the a class for exercises in our village, run by physio's but they wont let me join in until my GP confirms I am able to do so! I am an ex athlete so all this is so depressing, but I know I have to find a level that is suitable and with all the positives from all of you I will give it as good as I can.

dorall12 years ago

You will only be prescribed 02 if you really need it..as in your blood saturations have to be below 88%

as it is given to keep heart and other organs healthy and not for sob.Ask your doctor if he can arrange for you to go for pulmonary rehabilitation where you can be helped to be more in control in your breathing.

Marian-Anne in reply to dorall12 years ago

Thank you for your reply, my BS is anything from 87 to 91 depending on how I am so it looks as if I shall have to go back to the drawing board and maybe return to rehab.

in reply to Marian-Anne12 years ago

maybe you are borderline for needing oxygen -is it worth asking your doc again ? ...monitor your sats with oximeter so that you can really see the oxygen blood levels

in reply to dorall12 years ago

is that 88% at rest or during exercise ? thanks

12 years ago

Hi Marian-Anne

I'm sorry you've not been feeling well. I would urge you to call the British Lung Foundation Helpline. We have people you can talk to about your concerns whether it's to do with your health, medication and treatment, what you can do to make activity a little easier, gentle exercise within your own boundaries and limits etc. Even if you just want someone to talk to - we're just at the end of the phone.

Call the helpline on 03000 030 555. They can call you back if you'd prefer. Or email helpline@blf.org.uk.

The helpline is open Monday to Friday 10am to 6pm.

I hope you fell better soon, and sending best wishes.

Marian-Anne in reply to 12 years ago

Thank you for your help, I shall certainly contact them, I think it is the feeling of being so useless. x

valm12 years ago

Have they checked your blood gases? I started with ambulatory oxygen for getting to work etc Val

Marian-Anne in reply to valm12 years ago

Yes they were checked when I was in hospital in May, not that good but not bad enough! it is walking that is the problem, if we go out anywhere I have to walk at snail pace and stop so often it is embarrassing, always feel I am going to pass out, I dont of course and have managed to control this by pursed lip breathing but it does not help when you are trying to talk to someone and have to stop as there is no power left to do so. I am a positive person and will try anything but feel that I really need help now.

valm in reply to Marian-Anne12 years ago

Did they test your blood gases before walking and during walking for ambulatory oxygen, Val

Marian-Anne in reply to valm12 years ago

I t was before walking, I was in for 2 weeks, and they just kept me on oxygen for 11 days then started to get me off it, even then I was worn out as soon as I walked around, I know they will do anything to delay giving you oxygen but I would rather have for exercise and walking so I can have some life back.

valm in reply to Marian-Anne12 years ago

It's difficult and hard I know, I am going for blood gases next week as I am not managing on 2L of oxygen at the minute wish my breathing would improve but recently had a bad infection and to me you never get back to what you were before an infection Val

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