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Thread: extreme fatigue

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    Default extreme fatigue

    Hey everyone,

    It's has been a while since my last post. My dad ended up getting really sick memorial weekend. He had to have emergency surgery and i thought i was going to lose him. I thanks God everyday he is better. Thw 8 days he was in the hospital i went on little to no sleep, i hardly ate, and was stressed beyond belief. Amazingly I didn't get really sick and I was able to be there for my dad. A week after he got out of the hospital i crashed. I got shingles (for the second time in 6 months) and just felt like crap. Before my dad got sick I was fighting extreme fatigue. I was falling asleep at work. Anytime I would sit or lay down I would fall asleep. I was always fighting to stay awake. So I talked to my rheumatologist about it. She is a new This or for me. This was this was the second time I saw her. I tried explaining to her that the fatigue getting bad. This is what she said to me and i quote "fatigue is just a symptom of lupus and because the serious issues you have are under control (my kidney function was good) there is nothing I can do its just a symptom you will have to deal with" I was baffled. I tried talking about options but she wouldn't even talk about it. I left there crying.

    So my questions are:1. Have you ever had a doctor tell you they couldn't treat something because it was a smaller issue in their mind? 2. How do you deal with fatigue? Does anyone else have issues with finding a good doctor?

    I am going to see a new rheumatologist. My primary recommended one for me. I just have to make the appointment.

    Any advice you can give will be wonderful.

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    Yes, I had a primary care doctor say that every symptom I was struggling with was "perimenopause." I wanted to perimenopause her!!!!! Granted, I'm in "that" age range, but the extreme fatigue, the dryness, the pain is more than typical perimenopause symptoms. Needless to say, I fired her.

    The best advice I can give, is to call your local hospital and ask for a referral for a doctor that is experienced in autoimmune diseases. It might mean a little bit of a drive, as my favorite doctors are an hour away, while that primary care doctor was just two miles from my house, but it's well worth it. Also, if there is a lupus organization in your area (Lupus Foundation, Lupus Alliance, etc), call them and ask for a referral. They will have many many local resources for you.

    Good luck!! Remember, doctors work for US; we don't work for them!!!

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    (And I meant to say, but hit reply too fast, that I'm praying for your family and for you, and sending many good thoughts!)

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    How is the fatigue problem now that some time hs passed? Let us know how you are doing

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    The fatigue it still bad. I struggle most days and the doctors really are not helping. I am on a waiting list for a new rheumatologist so i just have to stick it out. Thanks for all the advice

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Lupus Fatigue can be influenced by everything: depression, pain, quality of sleep, quantity of sleep, exercise, severity of illness, and satisfaction with your social support network - as well as flares, medications, and stress. And it varies from one patient to the next. Because fatigue arises from so many different factors, treatment would be quite difficult and would have to take into account the many factors that cause fatigue. So, It is suggested that doctors and patients work together to treat-modify - change ALL of these factors in an effort to subsequently treat the fatigue.
    Also, it should not be overlooked that most patients with physical fatigue also suffer from mental fatigue (can't think straight, forget things, can't concentrate). Mental fatigue can be a sign of cognitive issues with Lupus which can, in turn, cause physical fatigue. Also,
    It is no surprise that people who are in pain have poorer sleep and thusly more likely to have physical fatigue. As such, the consensus amongst doctor is to treat the underlying disease (lupus) which will, by default, treat the fatigue. So, no, there is no specific treatment for Lupus Fatigue. There has been no drug that has proven to be effective in countering lupus fatigue. Patients are often left to themselves because there is not a lot of evidence or any clear ways for doctors to help patients with fatigue.
    Most doctors are just as confounded by it as we are. A Lupus patient can be doing well, their kidney problems resolved, no other major symptoms, etc. but still have profound fatigue and doctors do not understand why.
    I found this article which I thought was helpful to me: " Fatigue is profound. It touches you to the core. It can totally disrupt your life and Fatigue itself can be stressful and fatiguing. Because you cannot "see" fatigue, and it can change so much from hour-to-hour and day-to-day, your fatigue can also be confusing to those with whom you live and work. But it's not something you can point to like a swollen joint or a rash. You can be exhausted with fatigue and your friend or family member says, "You look great." This can be very frustrating. You feel that others just don't get it. Over time, see if you can learn to respond comfortably and assertively to such comments. "I wish I felt as great as I look - but I'm really fatigued right now, and it's important that I rest and take care of myself." Those words may not be right for you - but you need to find the words that are. Because when fatigue hits, you need to let go and rest. Give in to fatigue when necessary - so you can spring back. Take that temporary break - so you can stand up and think clearly later. Whether it's an hour later or a day later doesn't matter. You will find the right moment. And only you can. Because lupus fatigue is different for everyone - what causes it, when it hits, what helps, when it goes. Be kind to yourself, find a doctor that you can work with, and you will find the path that's best for you. Just don't give up."
    Please try putting "fatigue" in our search term so that all posts on that subject come up. Many of our members have talked about ways that we cope with our fatigue. I hope that you find a way to cope with and manage your. I wish you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Last edited by Saysusie; 08-06-2014 at 12:26 PM.
    Look For The Good and Praise It!

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    I can relate on the fatigue. Some days it's worse than others.

    Today were on vacation and visiting a zoo. I passed out on a park bench when I sat down to relieve some joint pain

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    I have too, been dealing with the dreaded lead blanket! This last week has been bad,very hard to get out of bed. I haven't been eating much cause I am to tired to get up and make something. I know for me this is the beginnings usually of a flare. I do think it's partly my kidney. I see my doc tomorrow, he is about a two hour drive away but worth it. I just know he will tell me to take steroids and I've just gotten off them and my face is finally returning to normal! Does anyone have suggestions on what they do to combat the fatigue?

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