Gilbert Syndrome

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I am 18 years old and i was diagnosed with gilbert syndrome a year ago.

I think personally that medical websites are downplaying gilbert syndrome quite a lot.

When i was first diagnosed i was just getting the dizzieness and that was just every now and then but over the past year i am getting it all the time, i am fainting about 3 times a month and i am exhausted.

They say that what we have does not effect our daily lives but for me it personally does because i am a person that has to go to university everyday feeling exhausted and like i'm going to faint.

Am i the only one that feels it this badly?

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7 Replies

  • Posted

    Catherine,

    No, you are not alone. I am 25 and going also going to university. There are days when I just have to tell my professors that I am sorry, but I have to leave to take a nap, because I cannot focus.

    I also have pretty severe back pain, but I have a big yoga ball that I use in class, laying on my belly receives the pain in my back. I have just very recently been diagnosed and I am trying some new things: Milk thistle, and I am taking processed sugar out of my diet. 

    One of my professors has asked me to do a research report about my condition

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  • Posted

    Catherine,

    No, you are not alone. I am 25 and going also going to university. There are days when I just have to tell my professors that I am sorry, but I have to leave to take a nap, because I cannot focus.

    I also have pretty severe back pain, but I have a big yoga ball that I use in class, laying on my belly receives the pain in my back. I have just very recently been diagnosed and I am trying some new things: Milk thistle, and I am taking processed sugar out of my diet. 

    My my professor of Health Psychology has asked me to do a research report about my condition. Would you mind telling me some of the ways this condition most effects your life, and some lifestyle habits that you have changed or developed sense being diagnosed?

    I noticed a big difference in my own behaviours and emotions once I had a diagnosis, because finally the mystery was gone :-). How about you?

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    • Posted

      I'm glad i'm not the only one.

      On here i have heard of a lot of people getting pain in their back or their ribs but wierdly i do not have that.

      What i get is the dizzieness and bieng exhausted all the time.

      What i have changed is my diet.I have had to eat a whole lot more.

      I am only 7 stone but that is because i have a problem with putting on weight because my motabolism is too quick . I have been told that bieng so slender has made it worse so i have had sometimes had to have more breaks than my fellow students just so i can go eat.

      But also there are times when i can not control it.

      I am not able to control my fainting when i am ill in anyway or when it is hot weather.

      But my main annoyance is people (doctors+parents) who tell me that i have to teach myself to control it which is easier said than done when they don't have it.

      Is it just me that finds it hard to control ? Do you?

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  • Posted

    I have only just been diagnosed about 2 weeks ago, so for the first time in about 4 years I feel like I have a game plan to follow. I will let you know how hard it seems to be able to control after I try for awhile.

    I can say that truly understand how frustrating it can be to try to put on weight with a fast metabolism, I eat about every hour, compared to the other students in my class, I feel like I am eating all the time.

    Are there any foods that you have found helpful, or particularily bad for you?

    i wake up early in the morning to do yoga to help my back pain. Is there anything that you do that has changed your daily life?

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    • Posted

      I feel like I am eating all the time as well, one food that I found considerably helpful is porridge because it fills you up but then you can also add whatever you want to it. Exercise is also another thing that I had never had to think about before, I have started going on long walks and jogs and will be soon be buying a bike so I can do even more exercise.
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  • Posted

    I am eating a big bowl of oatmeal right now :-), I love porige. I eat it almost every morning.

    I find yoga to be he most helpful form of movement, 

    i find it funny that a lot of web sites say that exercise makes this condition worse, but a lot of individuals that I talk to say the opisite.

     

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