Diaphragm question

Hi all. I am still getting used to the various respiratory issues that have arrived in the past couple of years. I am 47 year old, fairly fit female with longstanding mildish lupus for which I take low dose prednisolone, Hydroxychloroquine and Mycophenolate. I also have Eklira and Flutiform inhalers for narrowing of the small airways. I have some areas of 'tree in bud' in both right & left lungs and also get aspiration of food/saliva etc & laryngospasm

I have been diagnosed with diaphragmatic weakness which causes me lots of breathing problems when fatigued, lying and sitting down etc. This can be intermittent and it seems likely that this is caused by the lupus (neuropathy or myopathy) in the absence of any other explanation. In an email to my GP, my Consultant is suggesting managing this by diaphragmatic pacing unless I opt to continue 'surveillance'. I would love to hear from anyone with knowledge/experience of the pacing procedure so that I can be fully informed when I next see him. The lupus is behaving well at the moment but my shortness of breath is impacting more and more on my overall functionality. Spirometry in August was deemed normal at 82/83%, repeat tests due in March.

Any thoughts please?? Clare x

4 Replies

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  • Hi Sorry to hear about ya comprehensive list of problems .. I know your diaphragm is one of most very inportant things.

    Av not heard of diaphragmatic pacing BUT have had to do my own cough reflex stuff so assume it might be same hands on thing.

    Have read deep

    Breathing Exercising is key but your neuropathy will get worse dispite how your lungs are.

    Cheers wishing you well

  • Thank you D3NIS. Strengthening resp muscles is definitely sound advice - sometimes I have the stamina for them and sometimes it's a lost cause but I expect others experience that too! Many thanks for your help. Best wishes. C x

  • could it be something like this emedicine.medscape.com/arti...

    Sounds to me like you need to go back and ask questions about it from the Dr so you undersstnad it and can make a proper decision. Hope you get the help needed soon.]Carole

  • Thank you Carole. I have done some reading on the subject but hadn't come across that particular article. As I have likely neuropathy and MG has been cited as a remote possibility, diaphragm pacing may well not be the best option for me. Definitely need to ask my Consultant some more questions. Thank you for your reply. C x

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