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Gilberts and Exhaustion

Posted , 11 users are following.

daiselise
daiselise

So I was diagnosed with Gilberts a few months back, even though I've known I have it for many years (my mum has it too, and its hereditary, so it only made sense). My biggest problem at the moment has been a constant crushing exhaustion, and I'm wondering if anyone else has experienced this? All the doctors I've seen so far have said that exhaustion (along with the vertigo I get regularly that I've heard is another symptom of Gilberts) has nothing to do with the disease, but I really don't believe thats true. They've all been less than helpful doctors in other areas, and I don't entirely trust what they have to say.

Doctors are monitoring my Thyroid and iron levels at the moment (I have borderline hypothyroidism but not enough to diagnose it, and I'm taking iron suplements). Gilberts is the only thing that would be causing this, since none of the 5 doctors, 3 blood tests, and countless appointments I've had in the last 10 months can give me any answers, except for insisting it's not Gilberts. Can anyone tell me if their Gilberts has caused them problems like me?

0 likes, 11 replies

11 Replies

  • sophie3194
    sophie3194 daiselise

    Posted

    I have had Gilbert's for the past 5 years now and I really struggle with exhaustion. It seems no matter how much I sleep I just can shake it off. I find to just stop feeling as tired is to just keep doing things. The more I sit around the worse I get. But like you every time I mention it to the doctors they tell me that there are no symptoms with GS. Yet then go on to hand me a leaflet with a list of the symptoms in..

    • avinash30082
      avinash30082 sophie3194

      Posted

      same s*** happens a lot to me too. No matter if i sleep 14 hrs a day and eat all healthy foods , i feel so exhausted and and feel so weakness. I don't know what to do.

    • sophie3194
      sophie3194 avinash30082

      Posted

      That's exactly the same. I could sleep 5 hours or 15 and I would feel the same at the end of it. When I tell someone how tired I am no one quite understands and thinks I'm being dramatic.

    • avinash30082
      avinash30082 sophie3194

      Posted

      Yap, i completely understand. I don't know how to rid of this problem.

    • jeff123123
      jeff123123 sophie3194

      Posted

      hey

      i agree it don't matter how many hours you sleep it doesn't i know and people just look at you if you say how tired you really are and think like 'ok' i always fought i wasn't getting enough sleep but since i got told i had Gilbert Syndrome and now hearing how many people say about struggling to sleep i can see it seems to be a a sympton of GS.

  • RoyMunson
    RoyMunson daiselise

    Posted

    I was diagnosed with Gilbert's about 2 years ago. Same situation as you, went to the doctor due to massive fatigue, dizziness, stomach issues, and just feeling unwell. After several tests, the only result was ... Gilbert's Syndrome. BUT, GS doensn't cause any issues, according to the Doc. I had massive Health Anxiety after that, thinking I was dying and the doctors were just missing something.

    I didn't even think about Gilbert's being the cause of it for awhile, until I started looking into it more. Suddenly I discovered hundreds of people all complaining about the same symptoms, and all having a very similar experience finding out they had GS. All the pieces finally fit. So, I decided to research it and try to figure it out on my own. What I came up with has most definitely helped me feel almost normal... I say almost, because I still have bad days even with my lifestyle changes that I've made.

    The things that helped me are:

    Overhauling my diet. I used to think I ate fairly well, but I was wrong. I eat mainly organic fruits, nuts, vegetables, and organically raised meat. I don't eat diary, gluten, or sugar. I've also eliminated alcohol, anything GMO, and anything processed. Also, drink plenty of water. I honestly beileve diet is 90% of the fix.

    Exercise: I try and get light exercise almost daily. Over doing it actually can cause issues.

    Sleep: try and sleep 7+ hours daily.

    Vitamin D: get some sun on your skin as often as you can. Take a supplement when the sun isn't out.

    Minimize Stress: I know that's a tough one, but add some simple relaxation techniques to your day. Say no to things once in awhile and just relax.

    I felt better within days, but the real payoff is months down the line, when your body heals and adjusts to the new lifestyle.

    Best of luck!

     

  • susan7171
    susan7171 daiselise

    Posted

    HI if have exactly the same symptoms crushing chest feels like someone sat on it and exercise makes it worse the Drs need to do more testing as it affects my everyday life can not sleep as can not breath stress makes it worse I have a day now and again were it can be eased but I don't now how if it's my diet etc just need help with this my bilirubin is 44 all other scans liver etc are normal more research is defamatory needed   We have no medication for this how are we ment to get our life's back iv been like this for 20 years maybe not life threatening but makes me so ill and depressed always tired brain fog can not breath exhausted please Drs helps us 

  • natasha_88722
    natasha_88722 daiselise

    Posted

    I'm a year 12 student trying to sit my exams in a few weeks but I'm always exhausted and dizzy. No matter how much sleep I get im still exhausted. I can't concentrate and I'm always dizzy. Yet the doctors keep saying Gs has no symptoms 

  • bryce49416
    bryce49416 daiselise

    Posted

    Couldn’t agree more with RoyMunsen’s comment above. 

    I went to a nutritionist for a while and she had Gilberts Syndome too so could give me a lot of good information on it. 

    Basically what RoyMunsens comment above said, diet plays a huge deal. I forget what it is in dairy, but dairy is one thing that will make us feel exhausted. But not all dairy is equal, for example, if I have a little bit too much cheese that makes me really tired, youghurt on the other hand I can have more of. I wosh I could remember what it was speciafically in the dairy that makes us tired because then you could look up the different levels of the chemical/whatever it is in the different types of dairy. 

    Excessive protein intake will also make us feel tired/exhausted as well as excessive fats. Basically anything that makes our livers work hard! 

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