Gilbert Syndrome Fatigue negative life impact

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I've been diagnosed with Gilbert's Syndrom around 2 years ago. I never thought much of it as I was getting used to being tired. In most cases during working ours when lunch came around I would go to my car and sleep for my lunch break whitch will help me through the rest of the day. But I have now started a job where my lunch breaks are to short and I am in a new country where I have no car anymore, so no lunch break sleep. My fatigue lately is so bad that I am scared that I will just fall over and sleep.

I have taken up excersise again in the hopes that the activity will boost my energy, but my body feels so numb that it is sometimes difficult to even try to excersise. The fogginess of the mind that goes hand in hand with tiredness is the worst for me. My mind feels like information is passing right through it, which makes my career life extremely difficult. 

I understand people like to say that it is a harmless illness, but it impact my life negatively. I need to know if anyone out there has found an effective diet, or something to get rid of this overwhelming fatigue that is releated to this ilness?

I can handle my stomach cramps as I found probiotics does wonders for that, even yoghurt if I eat enough of it, but this fatigue and foggy brain I cannot handle anymore.

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  • Posted

    The only thing that helps me with the brain fog is adderall. I'm not sure if it increases bilirubin but it is the only way I'm able to maintain a living.
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  • Posted

    Hi kafrie, yes this syndrome is a very  reall issue and should be recognised as such. My son has Gilbert's syndrome, he has ups and downs with brain fog. We have found a healthy diet with plenty of vegetables and and small amounts of fresh fruit helps. He dose not drink any alcohol as this makes all his symptoms much worse, he has no tea or coffee and just  drinks lemon and barely cordial or any barley cordial. We have also limited potatoes in his diet to once a week opting for rice with meals instead. Eating smaller meals more often also helps not to over load his system with granola and porridge for breakfast and  snacks. He exersises but not excessively 3 times a week and rests as much as possible. Although this is working for him everyone is different we kept a food diary to help us eliminate foods with symptoms. I hope this helps and good luck. 
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    • Posted

      Hi kay, thank you for the reply, keeping potatoes and Koffee out of my diet will be a challenge, but I will try your suggestion as well. I struggle to keep awake lately, have to fight through it. I eat smaller meals in a day, but this is not really helping, maybe I eat the wrong type of foods, so your suggestion of a food diary is something I will implement, never really thought of that. 
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  • Posted

    Hi! Having Gilberts is hard when people don't understand how much it affects our lives. I have cut everything but water and occasionally alch out of my liquids and definitely the more vege's I have the better I feel. Working out really helps, try doing gentle ones like yoga which will keep you fit and flexy but not get you too exhausted. 

    WRITE DOWN EVERTHING! To decrease the stress, brain fog and tiredness, write down a to do list so you don't strain your brain having to remember everything. 

    Try not to work full time, I know it is hard if you have bills and everything but when I worked full time I became so stressed I was gagging daily. Make sure you get everything out of the way as soon as possible to ensure you don't have more things to do the next day, Make sure you have weekends of doing nothing to recharge your batteries and definielty sleep early and rise early, makes a huge difference. Hope this helps! 

    Good luck

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    • Posted

      Thanks issy, Not working full time won't be an option for me. I am the only income in household. I have been trying to get to bed early and to do nothing over weekends. But it is tough, especially when people think you make up stories for not being active and just wanting to stay home. I really agree with you that people do not understand this because it is not a "lethal" illness. They see it as an excuse, and think you are lazy, when they do not realise that sometimes you cannot function because of how you feel.
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  • Posted

    I do have Gilberts Syndrome, I guess I fell through cracks, I dont listen in classes or meetings but during exams I hyperfocus and study well. I do have brain fogs, i am recently characterizing my symptoms more like ADHD, they do become worse in winter because of low day light (SAD?) and better in summer. It became soo hard my communication is blunt because i  lack motivation to deal with fineness of speech or detailed work, I found shortcuts to all my work and blindly follow those shortcuts, small things like eye focus and refocus is hurting, I feel like my eye frame rate is a 3rd of normal, i do exercise weights and bike 4 days a week, normal weight but feel like some network in my head is messed up. I drink tea, coffee gives me high, may be a drink of alcohol in a year, couldnt handle smoke, it makes me nauseous. I am going next week for ADHD screening, I am guessing Adderall should help however not sure. Been working in this stress free  job for 10 years but now because of work politics decided to move to a high stress vet doc job and am really worried weather I could handle it? I am very knowledgeble but things wont strike me at right time, i have to fiddle a bit to recollect appropriate sentences and protocols.
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  • Posted

    I have had the tiredness problem for years as well and the brain fogg. I have started taking vitamin B complex suppliments and found that I have more energy. They are inexpensive and easy to take. you may find it helps. I had yellow juandice when I was born and have recently been given the Gilberts Syndrome diagnosis. 
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  • Posted

    Follow up:

    Well I went to a psychologist and he diagnosed me with ADHD at 18 percentile, normal adult dose of ADDERRALL xr is 40mg per day.I take 10 mg once or twice a day depending on lengh of work hours and started feeling normal, brain fog is gone. used to feel sleepy faced before all day since morning, now better. Have a feeling that Gilberts syndrome may be associated with low dopamine levels in brain. Adderrall is definetly working. The first day i skip it, I feel very down get used to it by 2nd day but quality of life is bad compared to days I am on it. I do have rash on my legs (moisturizer helps). I bike about 8 miles four days a week. Feel like Adderrall numbed me to painful feelings (I used to feel pain to refocus my eyes) but it is helping.

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  • Posted

    I find that afternoons and evenings are when I experience fatigue.  I can work well in the morning but by afternoon I am tired, sometimes just feeling wiped out.  And I don't have a difficult or demanding job.  I try to walk everyday as exercise. I wonder if instead of a nap at lunch, a walk would help.

    Have you tried kefir for your pro-biotics?  My wife makes her own kefir.  It takes awhile to get used to,  but I really like it.   Also,  if you have never had kefir before,  begin with just a little bit.  I drank a whole glass the first time and felt like I had the flu the rest of the day.  However, after that I could drink it with no problem.  I drink about a cup every morning.

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