Fatigue

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Occasionally, Sarcoid just makes me soooo tired. Usually lasts 2-3 days. I sleep a lot during these periods of time - 10-12 hours a day. Almost always need a nap in the afternoon. Good thing I'm retired. Still, I need to get things done and avoid wasting time. Suggestions? - John

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  • Posted

    John

    If you find the answer please let me know...I have a similar situation.

    Regards

    Tangles

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  • Posted

    Hi John

    Yes I have chronic fatigue with my Sarcoid. Its better than it was but I can still sleep 10-12 hours a day. For example, I'm a teacher and just had 2 weeks off work for Easter holidays. First 5 days I slept 12 hours a night, then 2 hours later in the morning and wake up and then have 3 hours in the afternoon. That is my body saying you cant forget about the Sarcoid. When I was first ill and out of hospital the fatigue was quite bad. I  would sleep 18 hours, get up and have to go back to sleep as I was so tired. I told my consultant and she correctly diagnosed Obstructive Sleep Apnea (OSA). I was sent for tests and wore a monitor clipped to my finger on sort of a wrist watch type gadget. It measured my oxygen intake, heart rate etc. My oxygen saturation went down to below 70%. I wore this for a week. Then I was given a CPAP machine to try for a week. It has a memory card in the back and it records how long you wear it etc. It works by blowing air to open your windpipe. At first it drove me doolally and i thought it wasnt for me. I went back after a week and they read the memory card. You cant cheat on it. tHey measured that I was stopping breathing about 20 times an hour. This prevents the deep sleep you need, youre working hard to sleep and it makes you tired so hence the exhaustion. The confirmed I needed a CPAP of my own. As in England I got mine on the NHS and I believe you can only get one if you are medically prescribed. think they are arounf £750. Anyway, it took an age to get used to wearing it at night. Took me about 6 weeks. Now I cant sleep without it. I get quality sleep, its relaxing and i wake up naturally. If I dont wear it Im exhausted. Without it I wouldnt be able to work. 

    I still get tired and exhausted but not like I was without the CPAP. I recognise its not for everyone and it takes time to tolerate it, but its done wonders for me. It maybe worth investigating OSA

    Let us know how you get on

    take care

    Nicola

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  • Posted

    Hi John,

    honestly, I find fatigue one of the most debilitating symptoms of sarcoidosis. I feel tired all the time, regardless of how much I sleep. Though I'm quite ok after a good night's sleep, I get tired after only 2-3 hours of...doing nothing smile. and nothing helps..I tried almost everything, from drinking coffee and green tea (2-3 cups every morning, of tea not coffee) to exercising a little bit (with oxygen so that no significant desaturation occurs)...I also talked to my doc, but there is no medication to treat this symptom. I guess we have to live with it..

    It seems that chronic fatigue has a lot to do with the disease itself and with the level of oxygen in the blood(those with lung sarcoidosis). I've only  been awake for 2 hours and I'm already so tired that I could go to bed. It's really, really annoying, and (don't want to scare you) it seems to get worse over time. 

    Take care,

    Magda

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  • Posted

    John

    There is some common themes happening here. We all suffer from chronic fatigue. Also sleep apnea is a common issue. Once diagnosed you can obtain a CPAP machine to help you sleep without the stop breathing issues.

    This helped me allot in my sleep pattern. However I still suffer from chronic fatigue. If I go fishing with my friends a few hours into the adventure I have to go to sleep. This happen several times in a single day. They just say that pop needs his nap, which is kind of them. But, the problem is much more than just getting a little old. It limits what you can do in life.

    I agree with everything Magda said about fatigue, she is right on the money.

    If you search this site for fatigue you will find other posts on this topic which may help. This is not the first time this important subject has been raised.

    Perhaps a visit to a sleep doctor might help in some way. On average I was stopped breathing 44 times an hour. 30 times is considered serve, so where does that leave me?

    Regards

    ​Tangles

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    • Posted

      Completely agree. Its something we learn to live with and work around but its a fundamental thing. I cant see it going away. Just when you think  youre on top of the sarcoid or on top of the fatique to comes and bites you just to remind you its there and dont forget it

      Yes it changes your life, but if you accept it and work with it it doesnt become your life

      I was told at the CPAP consultation that they have a patient who stops breathing 100 times an hour. My humour says they would be easier counting the number of times they breathe not the times they stop. And that is considered severe. I'd say lucky to be alive! i think that must be rare though

      Regards

      Nicola

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  • Posted

    Thank you, Responders - I've used my CPAP for several years with good results, until Mean ol Mr. Sarcoid re-entered the scene and made me tired again. As many of you do, I have good days and bad days. On good days, I'm a semi-normal man. On bad days, I need at least10 hours of sleep at night plus a 1-hour afternoon nap. As I've said, it's a good thing I'm retired, and my kids are raised! - John

     

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