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msnyrican66

701d

I want to connect with others with ILD. I was diagnosed with it 2.5 years ago. Hasn’t progressed but it has changed my life drastically. I am always exhausted even taking a shower is draining. Ppl just think I’m lazy but it’s much more than that.

Top reply
    • Night_Shift

      636d

      Try to exercise as much as you can without overdoing it. This will give you a little more energy during the day. Do only what your body will allow but try to do a little more exercise each time. I really believe this helps me because I also have a lot of fatigue due to ILD, myositis and antisynthetase syndrome.

    • Night_Shift

      636d

      Try to exercise as much as you can without overdoing it. This will give you a little more energy during the day. Do only what your body will allow but try to do a little more exercise each time. I really believe this helps me because I also have a lot of fatigue due to ILD, myositis and antisynthetase syndrome.

    • mabes

      701d

      I also have ILD. Since 2016. It's one of a few off shoots of a rare autoimmune disease I have, Myositis/antitisthetase syndrome. It will not get better or go away. It is a scarring in your lung and it can't be repaired. However you can do pulmonary rehab to strengthen what is still good. I was on oxygen 24/7 at first, but I no longer need it, except for sleeping. As with everything, I have to be careful and not overdue it. Fatigue is very common. I live with it daily. Get to know your body and rest when your body says rest. Talk to your pulmonologist and they should direct you on things you can do to help. And research, my favorite thing. It helps me to understand what I'm dealing with. Also support groups help ALOT.

      • msnyrican66

        701d

        @mabes I know the damage that is done is irreparable. It really scares me bcz I was told it was due to my chronic acid reflux and farmer’s lung that caused it. I did pulmo rehab…they were the ones who taught me breathing techniques and the difference between COPD & ILD. Fatigue is the worst and thank you for your response.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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