Lupus and COPD

[MoominMomma]

Hi everyone, I have pulmonary fibrosis and just recently when I have had an episode of breathlessness brought on by coughing, my whole body hurts. The shortness of breath can last for ages and I suffer badly from fatigue which is bad enough but to hurt even more than usual is just awful. Is this normal?

[Maureenpearl]

I too have lupus and Pulmonary Fibrosis caused by the lupus.

I use ambulatory oxygen because I get very breathless and I also suffer with sever fatigue. My body hurts on a daily basis.

I had to ask if I could have ambulatory oxygen, even when the nurses and doctors saw how breathless I got.

It is quite distressing and not good for your heart to be so breathless. If you have an Oximeter you can check to see if your oxygen level has dropped when you get breathless.

I now see two consultants at a combined clinic. I see the Rheumatologist and consultant for lungs together. I am having Rituximab infusions to try and stop the inflammation attacking my lungs.

Hope this is helpful. Rest as much as possible and take care MooninMamma.

God bless.

Praying for a cure.

Maureen x

[Chanpreet_Walia LUPUS UK]

Hi MoominMomma,

Have you spoken to your doctor about the pain you are experiencing?

If in doubt, it is always worth speaking to your doctor about the symptoms you are experiencing as he/she can provide you with the correct advice and treatment. Also, the doctor may refer you to a specialist such as physiotherapist or pulmonary specialist if required.

We published an article on pain management which you may like to read here: lupusuk.org.uk/pain-managem...

Fatigue affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...

[MoominMomma in reply to Chanpreet_Walia]

Thanks for your advice. I saw the pulmonary dr this week & he said that having an attack can be as exhausting as running a marathon! I need to accept that there will be pain and my body needs time to recover.

Thanks again for your advice