Breathing and CFS

  • I'm struggling with breathing difficulties that might be
    A) dust mite or other allergy
    B) dyspnea from out of condition cardio-vascular system (years of CFS sedentariness)
    C) both
    D) neither
    My doctor is working with me on it (lung function test booked) but I wanted to ask if anyone else has similar problems. (Whenever I have tried a puffer it has made no difference).

  • @Dot so sorry to hear this. I have asthma but you say a puffer doesn't help. I also get puffed out when I overexert myself but that settles down. My own peak flow meter to get an accurate idea of my breathing was very useful. Hopefully the specialist will sort thing out... good luck.

  • Whenever my heart rate is elevated (which is 24/7 if I'm in PEM, and any time I move a muscle whether in PEM or not) I get short of breath. I've gotten seriously out of breath just sitting at a table because if this. Oxygen saturation always normal when I check it. I don't know if this is relevant to you at all, but thought maybe worth mentioning

  • Community Moderator

    Sorry to hear you're having a rough time of it Dot. I get out of breath as well when I start to overdo it. Not sure why. Best of luck with the specialist, would be interested in anything you turned up, if you were happy sharing (but absolutely no pressure).

  • Thankyou, all those replies are so helpful! Mainly, and sadly, because they are similar to my experience. I will let you know what happens. I wish it was (not too serious) asthma and I was just using the puffer the wrong way.

  • @Dot even mild asthma can suddenly flare up to be a serious life-threatening asthma attack. People can be quite blase about asthma... don't mean to scare you

  • @iris so true. Not something to wish for.

  • This is an interesting point, in my earlier CFS days I never had issues with breathing or breathlessness. In the last 3 to 5 years I have had with any exertion beyond minimum causing breathlessness. I have had many heart and lung tests , all the heart '-grams', X-rays, breath volume tests all report AOK. My Cardiologist and the hospital all say it was a severe virus I was laid up with 5 years ago. However in the absence of any concrete evidence as to the cause and after reading this thread I now wonder if it could somehow be related to ME/CFS. I will have to go back and review the little info I have on the 1990s Exercise/O2 research by Prof. Scroop I was involved in at UofA and see what that said.

  • Thankyou @Terry, this gets more interesting each reply.

  • @Dot Hi Dot, Breathing difficulties happen for me when in PEM, I thought it was asthma, but lung test was fine. This would happen to me before my diagnosis as now that I pace myself I can control it better. I would make sure your blood pressure is checked as mine was sky high and I think this contributed.

  • @Gina Thanks so much. CFS effects every part of us.
    I also had this breathing difficulty before CFS but it became much more problematic over the CFS years and is particularly bad at the moment. I'll see my doctor again this week to find out about my lung function tests. I'm glad to say my BP is fine.
    Hooray for pacing, it helps with everything.

  • @Dot Hi again Dot, if not using a spacer with your puffer, I recommend, makes it a lot easier.

  • Thanks @Gina, I am not on a puffer, but I have kept the spacer from my lung function test, incase they decide it is asthma. (It has been a bit of a saga over years).

  • Just to let people know, I spoke to my doctor today. Lung function tests were fine and so nothing to make her recommend asthma treatment at this time. She is referring me to an exercise physiologist, which I am very pleased about.

    A year or so a go I wondered if my cardio vascular health had declined because I was so CFS sedentary. I decided to try skipping as a way to get me breathing quickly. I started with 10 skips a week (enough to make me breath hard 😄 😄 ) and worked up slowly until I was skipping 60 skips.

    My breathing was fine but my CFS got so bad I had to stop everything. As my CFS symptoms lessened, my breathing problems increased.

    I decided breathing was a life priority (!), but hoped I could find a balance. I skipped 30 skips a week (less than 2 minutes skipping), and then spent four days recovering and three days complaining to everyone about how bad my CFS was, before skipping again. It took several months to think I had better do something else. So I stopped skipping and this time the breathing problems came back hard.

    So I want to talk to the exercise physiologist about cardio vascular health and breathing (is it just the heart?) diaphragm health (do stomach muscles make a big difference) connective tissue (anything?). And all in the scope of living with CFS. Hope they are good!

  • @Dot just shows how complex CFS is. Hope the exercise physiologist is helpful.

  • @Dot skipping? Maybe the exercise physiologist can come up with something gentler. Good luck with it

  • Haha @Glimmer every single person I have told about it thought I was mad for skipping, but I couldn't think of a quicker easier way to improve my cardio health (and I even had the wonderful idea that if was really fast it would sneak past my CFS without waking it up). (Fail. Yes I am a dreamer).

  • Oops I meant @iris! Sorry @Glimmer but thanks for your good wishes.

  • @Dot maybe a small amount of exercise done consistently over a longer length of time will gradually show benefits but be careful you don't want to trigger a relapse.

    Patience and care. I don't envy you

  • Community Moderator

    @Dot 😁did something very similar a while ago with swimming. Only I thought it sounded perfectly logical that if I went super super slow it might sneak past. Live and learn and dream other dreams

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