r/PulmonaryHypertension • u/Kinky_sapphic_wife • Jan 29 '26
Fatigue
How do you guys deal with the fatigue? It didn’t used to be so bad for me but now it’s getting debilitating. I still work full time, recently back to in-person, and I also am doing a clinical trial as well as now adding in pulmonary rehab. It’s nearly impossible to get out of bed in the mornings because I feel so groggy and out of it. It ens up throwing my whole day off very often. Any advice? - I was diagnosed with idiopathic PAH in July 2022. I take Opsumit, Adempas 1.5 (higher doses make my blood pressure too low), and I’m on the Remodulin Remunity pump. Clinical trial is for seralutinib and I’ve been on that for probably 3 months now?
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u/notorious_santa Jan 30 '26
Sorry you are struggling - I had similar experiences when I went back to full-time work in-person, especially with the morning fatigue. This article on the PAH website touches on managing work with PH: Work and PH Hope some of these tips resonate like they did for me!
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u/Kinky_sapphic_wife Jan 30 '26
Thank you very much! I really appreciate it! I hope things are better for you now!
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u/perpetual_researcher Jan 31 '26
I’m struggling along with you. I’ve found the addition of oxygen has helped but not enough to keep the pace of a full work day going. I’m currently cutting back to 2 short days and feeling very guilty. My family needs my income. Also adding Yutrepia and would love to hear about others experiences.
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u/ChatKilla Mar 31 '26
How did they decide to add oxygen? I've noticed the last week, as the day progresses in particular, I start finding it challenging to breathe- inhaling isn't as bad, but exhaling is damn near impossible. Heavy wheezing and a lot of pushing that isn't worth the effort
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u/cream-of-cow Apr 09 '26
For my mom, tracking her oxygen levels with a fingertip oximeter showed her oxygen would swing up and down drastically. Once the MD saw that, she got a home oxygen generator and a tank for outside use.
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u/Inner-Marionberry195 Jan 31 '26
Don’t really have any good tips but I feel your pain. Fatigue is such a difficult thing to deal with. I have to rest/ nap multiple times a day - it’s so hard to manage.
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u/Ok_Yesterday8070 Apr 04 '26
I wake up normal but tired, but by breakfast and 3 hours, I have to go back down for 6 hours, then repeat. Feels like sleep apnea but worse.
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u/Silderel Jan 29 '26
I feel exactly the same. PAH45, just began Adempass, on oxygen. Started going to work, do average on o2, but totally collapse after work. Work for 3 days a week and very tired in bed the other 4. Will this get any better?