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    • #18683
      Brittany Foster

      Lately, especially in this really hot weather we have been having in New England, my fatigue has been terrible. The other day my legs felt so tired as I was walking up the stairs that I lost feeling in them. The last week or so I have had to rely on more naps, less exercise, and more self care.

      I also made sure to let my medical team know about my increase in fatigue. This symptom has always been one that makes me uneasy especially because drainging fatigue is usually not “normal” for me.

      Have you experienced increasing fatigue lately? What do you do to manage this? Is this a symptom that would make you alert your medical team?

    • #18687
      Colleen Steele

      Brittany, I’m sorry that you are battling fatigue because I know how much it can mess with the emotions too. I know when my son had PH the hot weather was so hard on him. He would feel constantly tired. His oxygen saturation’s would also decline and between the two symptoms he would feel so bad that he often would sleep downstairs on the sofa because climbing the stairs to his bedroom was exhausting. It makes me sad every time I think about those times.

      Definitely we would always alert his medical team. I wish I had better advice to give other than if you are seriously fatigued, than you need to rest. Feeling guilty or aggravated that you don’t feel up to do things I think adds to the fatigue so as best you can, let go of it and let yourself rest.

      As you know, I don’t have PH, but I have RA, asthma, a minor heart condition and a thyroid condition and every time I start to feel utterly exhausted to the point of not feeling functional, it is my tell that I am about to have a flair up of some kind or maybe about to come down with a cold.

      In regard to PH I think it’s even more important to pay attention to your fatigue. I always encouraged my son to rest anytime he felt like he needed to because otherwise I worried about him pushing himself into a PH crisis.

      I hope you feel better soon!

      • #18703
        Brittany Foster

        you’re so right! Our bodies are the best at alerting us when we need to rest and it is our jobs to listen. This can be really difficult to do, especially if we are so used to being on the move or having a little more energy. It can get frustrating to not feel as productive. But, you really CAN’T pour from an empty cup. If our batteries are too low we just won’t be able to function and other parts of our body just start to give up on us too. That’s the scary thing about heart and pulmonary conditions is that feeling this way and feeling overly fatigued can sometimes be a reminder that we can’t keep up some days as well as we would like to. That is something that has always been hard for me to accept but it is also something I’m working on and taking better care of myself when this happens.

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