Breathless with ipf

[Looseloafers]

Hi everyone. Hope you are all doing ok. I have IPF and getting very breathless does anyone have any tips for coping with this. I’m trying not to stop doing what I have always done (shopping days out etc) but it is getting harder

[Oshgosh]

Ask you your GP to refer you to pulmonary rehab.it really helped me

[Spacecat1]

Try joining a group I have copd.i go to a local group called FAB not sure where you are or if they have group similar. We do relaxation to music while doing tai chi will sat down doing exercises very simple and relaxing. Physio at the hospital ask your consultant if he can refer to physiotherapy for classes for breathing. They are usually 8 week course this course is more exercise treadmills et

They are very good. Hope this helps

[Looseloafers in reply to Spacecat1]

There is a support group quite near so I am going to join that. Went to physio but no help said I was doing ok on my own!

[sassy59]

Hope you get some much needed help very soon. Xxx

[Damon1864 Volunteer]

Hope you get some help from your GP soon, but while you are waiting look on you tube just type in breathing exercises and you might find something on there which may help you. Good luck let us know how you get on, have a lovely day and take care of yourself 😊 Bernadette xx

[Ergendl in reply to Damon1864]

Even join a singing group. The British Lung Foundation has a list of singing for lung health groups across the country.

[Looseloafers in reply to Damon1864]

I looked on u tube and found some good breathing exercises but I keep forgetting them😂😂 must concentrate!

[Oshgosh]

It’s reallyhard adapting to breathlessness.

.you need to get used to pacing yourself.i find it really hard,as up to a year ago I was always rushing around

[Looseloafers in reply to Oshgosh]

Me too Oshkosh it’s hard having to take your time! I hate this with a great hatred! X

[Jomo46]

I’m the same. At the moment very bad. I have to allow 3 or 4 times as long. Are you on oxygen and what are your SATs like when sat. A lot of people say playing a fan gently on face helps a lot. ( battery handheld are cheap), bending over is difficult eg loading washing machine. I have a chair near to recover. In fact I have a lot of strategically placed chairs. My ILD nurses prescribed lorazepam half a tablet which helps slow down breathing a bit. How far can you walk without panting.tell your gp or ild nurses and see if they have ideas. It’s not easy. I hate it. Best wishes jo

[tamariki in reply to Jomo46]

What is an ILD nurse?

[Jomo46 in reply to tamariki]

I see a consultant but can telephone the two ild nurses who run the clinic at the hospital. I can’t remember the exact title but it’s for lung diseases

[Looseloafers]

Hi Jomo46 not on oxygen yet! Have chairs handy like you. Not so bad in the house it’s outside where I am worse I hate it all as well. Keep well x

[Jaybird19]

Told "get your breath back"as you sit down having walked all of

4 yds. Takes me over 20 mins to get anywhere near that. My appointment is over then ! There so much more that is so frustrating.

[Faballie]

I kept saying I wasn't at oxygen stage yet, but recent tests showed I really was. I use it outside and can't believe the difference it makes. Speak to one of your clinical team about it. Even with oxygen you do have to take on board that you need to slow down a bit.

[tamariki]

What is ipf?

[Bearincab]

ive just been diagnosed with ipf a friend of mine uses gadget she gets on prescription and puts a capsule in and inhales it once a day and shes had sever copd for a very long time I will ask what it is tomm and let u know she swears by it might be worth seeing your gp about it.