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    • #11979
      Brittany Foster

      “I’m so exhausted”
      “Go home and take a nap”
      I wish people knew that when I said I was “exhausted”, a nap unfortunately wouldn’t do a whole lot for how I am physically feeling. I know they mean this nicely and probably think that a nap will leave me feeling rejuvenated and give me a second wind. My exhaustion isn’t the same as being tired. It’s a whole body and mental fatigue that makes me feel as if it is a struggle to simply get up some mornings.

      Fatigue is one of the hardest symptoms for me to manage especially because my mind wants my body to be on the go. I simply feel like I have a disconnect most days when my mind is telling me to move but my body won’t listen. My fatigue depends on many factors some that are in my control and others that are not. This makes it even harder to get a grip on how best to control it and keep it at a level I can live with.

      For me, it changes with my level of activity, bodily stress such as acute illness, oxygen levels, blood pressure changes, weather, hormonal cycle, and mental stress. I try to gain control over what I can such as not overdoing it and pushing my body to the limit, I try best to manage my mental health by going to therapy once or twice a week, doing light activity and exercise when I can, and having a good support system.

      Do you experience this symptom on a daily basis? Do you have days when fatigue feels overpowering? Are there things that make it worse/better? What do you do to control what you can and minimize as much fatigue as possible?

    • #12541
      Chris LaRose Mev

      Combined with my sleep apnea, PH leaves me tired all the time.
      i nap at least twice during the day.

      • #12542
        Brittany Foster

        Hi Chris,
        welcome to the forums! I also have sleep apnea. At first I thought it was central sleep apnea and just the other day I found out I have complex sleep apnea which is combined central and obstructive. Which makes sense considering I have COPD (I am a nonsmoker so they are unsure of why I have this as bad as I do). Does anything else ease your fatigue besides the naps? Even though naps probably only help for a short amount of time! Fatigue is so hard for me to manage!

    • #12544

      This isn’t official advice and quite frankly I don’t recommend it, but caffeine is my friend.
      (Scene: Stereotypical riding the elevator to the third floor with the boss, and I’m holding a Rockstar energy drink in my hand, and remember both her and I work in healthcare)
      Cue my boss: “You have heart disease, caffeine puts you at risk for complications.”
      Cue me: “A lack of caffeine puts me at risk for not finishing the project on time.”
      Boss: “…….” “oy.”

      I admit when I get home the first thing is a one hour nap. It’s weird to have to explain to people why they can’t reach me between 6-7PM. And that’s with a healthy dose of caffeine.

      Side note – I don’t want to threadjack but since you’re the original poster – Britt, I was wondering about your obstructive/COPD diagnosis — Restrictive lung disease is much more common in congenital heart disease survivors like us (see reference below for more). If you have asthma though, that could be what classifies your disease as obstructive. On the other hand, external problems like ribcage restriction and scoliosis cause the restrictive type.
      (Reference: http://circ.ahajournals.org/content/circulationaha/127/8/882.full.pdf)

      • #12574
        Brittany Foster

        Hi VK,
        For those that can have caffeine it must work wonders. I have always been advised against it by my cardiologist even as a little kid so i stayed away from it. Also, having sleep apnea they want me to stay away from caffeine too which would just stress my heart out even more.

        When i have caffeine by accident (when they mess up the coffee order) i feel like a million bucks until i feel my heart racing! Lol!

        As far as the restrictive lung disease. For me it’s a combo of chest wall motion not being as it should from surgeries and how I healed and i have a form of spina bifida that made my rib cage very narrow
        The obstruction is still being worked up. They say its asthma but inhalers don’t seem to work well for me at all. I have something called a circumflex aorta that wraps around my trachea so that might have something to do with it because i have a chronic cough and feel as though I’m choking during the day when it gets bad. Definitely will keep you updated!

    • #12575

      Britt – By my experience asthma is the one that’s easily all triggery and stuff. My pulmonologist told me if exercise or allergies make you show symptoms of your airway being irritated (wheezing and sudden – very sudden – shortness of breath are the signs he says), then part of the problem is asthma.

      I’m assuming your medical team is competent and found your restrictive-obstructive combination through function tests and/or symptoms. I personally think your observation of the circumflex aorta is pretty brilliant. When you exercise the volume of it must increase and can cause irritation. Not really sure but it’s my guess.

      Finally not going to say that I’m medically cleared to have caffeine – major disclaimer there. Well, no treating clinician of mine has told me to reduce my caffeine intake. Yet…

      • #12583
        Brittany Foster

        Thats definitely true about the asthma symptoms. For me, it’s way more gradual and I never wheeze! Even with the inhalers and breathing treatments it still feels like there’s something restricting the airway. The breathing treatment doesn’t help it as much as the oxygen.

        I saw my vascular specialist today and he wants me to bring up that to the pulmonary person and see if it could be connected to the type of vascular ring i have. I guess there’s a procedure they do to check all that called a bronchoscopy . I’ve never had one!

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