Extreme fatigue 2018-10-17T12:25:49+00:00

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  • Lu Broome
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    Post count: 1
    #10199 |

    I was diagnosed just a few years ago with pulmonary hypertension and have had only one hospitalization with it. I was placed on oxygen and did well and used only when needed. However, for the past several weeks I have been on oxygen 24/7 and can only do minimal household responsibilities. I make myself get up to do things but my oxygen level always drops as soon as I take off the oxygen to go do something even to take a bath. I get so extremely weak that the only option is to go back to my chair and rest. That seems to be all I can do right now. I push myself to do what is necessary but it takes everything that I have to do it. The doctor told me yesterday to stay on the oxygen and rest as much as possible. Does anyone else have episodes like this?

  • joy
    Participant
    Post count: 2

    I was diagnosed in January of this year. I have bad days where I get extremely exhausted . I have to pace myself in house work, one project a day. My mom is in an assisted living facility, it is 110 miles round trip to visit her. I usually stay 3-4 hours, which tires me out the next day especially. Monday, she was having problems , I was there from 11am to 7:30 pm. I was so exhausted that night and the next day, I didn’t feel like sitting up. My blood pressure was very high on Tuesday. The doctors said I had mild pulmonary hypertension, I have an appointment with a pulmonary hypertension/ cardiologist in a couple weeks, but the first visit cost $200. which I do not have. I am not on oxygen at all , but there are days when just dressing and taking a shower is very exhausting.

    • Cherie
      Participant
      Post count: 4

      Hi Joy,

      I received a preliminary diagnosis a year ago and a confirmed diagnosis in July. It is important to get to that cardiologist. Oxygen helped me, my CPAP helped me although not enough to put me in Group 3 so I am in Group 1. I started Adcirca and Opsumit in July/August and it has made a world of difference! Last year I taught my classes sitting at my desk and this year I only sit down to take roll. I can even take the stairs at least once per day at school and just walked 28 minutes at a 2.9 mph pace. Huge improvement! My cardiologist had a nurse to help me enroll in patient programs to help pay for the medications.

  • Rand B
    Participant
    Post count: 2

    Lu Broome, et al.

    I have had PH for over seven years now, in addition to a congenital heart defect. Fatigue is a problem for sure. I have found that a healthy diet (an actual healthy diet, as in see a nutritionist if necessary) and working on your fitness does wonders. I know that sounds impossible, especially right after your diagnoses, but start very slowly. Lie on the floor and do exercises there, WITH the oxygen on. Obviously, consult your doctors and such, but exercise can really help. I am on three medications and oxygen at night and for exercise, but I get out and work my ass off. It really, really helps. Additionally, I cut almost ALL salt out of my diet. We only use the salt that is required for the chemistry of the cooking; i.e. making bread.

    On the days, that it is hard to tie my shoes, I do a lot of lying on the couch too, but I try and do something, just to beat back the want to do nothing. Some sit ups, or planks, or leg lifts, squats, whatever, just so I don’t give in to the disease.

    Anyway, good luck and I hope you all succeed with whatever course of action you choose. But please, think about getting, or staying in shape. It is possible with PH.

    • Cherie
      Participant
      Post count: 4

      Thank you for the encouragement to exercise and watch salt intake.

  • Sally A Harrington
    Participant
    Post count: 2

    I was diagnosed March 2 of this year with IPAH WHO 3 and then I went on nighttime oxygen on Apri 1 on 2 ml after a sleep study then started on leitairis on April 17. I went to pulmonary rehab successfully from May 14 until August 3rd. On July 27th I started using oxygen during excercise and eventually anytime I was at all active. I was and am extremely fatigued even though my nighttime oxygen is now at 4 since a second sleep study was performed and my POC is on 3 when I leave my house. While I was able to exercise successfully and did great on my 6 min walk after rehab, now I have a problem with doing even 5 min on a treadmill. I have fainted twice without losing consciousness in the last 6 weeks. My legs feel like jello and I just fall down. My Questions are if anyone else can relate to this and is my increasing need for more oxygen something anyone can relate too…thanks for any responses.

    • Cherie
      Participant
      Post count: 4

      Hi Sally, I am sorry to hear you are fainting and not able to exercise very long. How frustrating and concerning for you. Keep talking to your doctor and care team to let them know how you are doing, especially since it seems that you’ve declined since finishing rehab. I’m also a newly diagnosed patient but I have WHO 1. I am on different medications, Adcirca and Opsumit, but I don’t know if that is because I’m a different class and whether they would apply to you. Hang in there.

  • Sally A Harrington
    Participant
    Post count: 2

    Cherie thank you for your encouragement. I did contact my excellent pulmonologist, neurologist, and PCP as soon as the falls started. I am seeing them all soon and stay on strict Low almost no salt diet and a one liter a day maximum on fluids. I am lucky to have my hospital of decades be Brigham and Women Hospital which has a special rating with PAH patients. I had my rehab with MGH so I am grateful to getting the best advice. I agree with everything that Rand B said and still force myself to be as active as I can be every moment. I am seeing a nutritionist on Tuesday since I was diagnosed last week with Celiac Disease. I am trying to fight for the healthiest lifestyle I can have. Every breath is precious and wonderful.

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