struggling with symptoms

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Such a relief to see im not the only person with GS to suffer from fatigue, anxiety etc. Had so many tests done over time cause of generally feeling unwell and according to these tests im the picture of health! My husband thinks I am a hypochondriac and honestly sometimes i do too. Doctors tell you theres nothing wrong and Gs has no symptoms. Clear to see by everyone here they are wrong! Seem to be going through an exceptionally bad faze of fatigue, anxiety, insomnia and brain fog atm. I have to wonder if there is anything that can make day to day life a little more bearable?

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  • Posted

    Cara, Hang in there. There are good info here. Please read old threads.

    For me a hot shower helps a little, echinacea juicy is another one. I am also think of go back on low dose amitriptline again..

    I am actively trying things to redue my symptoms but really desperate now.

    I hope we who suffers could group together to reach out to a research med school. This has to be take seriously.

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  • Posted

    Haven't found any supplements that help, and have tried most of them. There is good research evidence for milk thistle, but haven't got around to that yet.

    The only thing that works for me is reducing my proportion of body fat - made a huge difference when I lost 20 kg over a couple of years. Generally feel better as soon as I start dieting, but important not to overdo it - I keep the sugary drinks going as sugar drives the glucuronidation reaction that is deficient in GS. 

    My optimal routine - not always easy to keep to - is:

    Breakfast: bowl of cereal (packet of oats seems most filling)

    Lunch: a cereal bar, often Kellogg's K-Twist, or a pot of rice pudding

    Single biscuit mid-afternoon

    Early evening: frozen meal: McCain or Bird's Eye 'Platter' or a Healthy Option-type meal

    Mid-evening snack of maybe 100-150 calories - nothing fried or fatty so no crisps/chips.

    Fried food is the worst, especially McDonald's, but a small amount is OK, especially earlier in the day.

    Oh, and goes without saying you should get the genetic test to ensure that you do in fact have GS and it isn't something else!


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  • Posted

    PS When I say sugary drinks I mean tea or coffee with one sugar - full sugar fizzy drinks (corn syrup) are really high calories and to be avoided. Too much sugar at one time can exacerbate my symptoms, particularly in the late evening.

    Worth thinking about multivitamin supplements too in order to reduce the risk of deficiency.


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    • Posted

      Thanks Biometric. I Did have the specific Tests done to confirm GS approximately 6 years ago. I take a multivitamin everyday, drink heaps of water, dont drink alcohol, eat a variety of fruit and vegetables and cook healthy dinners every night. I am not even remotely overweight and i do moderate exercise. Seem to be struggling more atm with symptoms as im working full time and not sleeping well. As to my diet and lifestyle i am probably the healthiest i have been for years and i have never felt more exhausted
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    • Posted

      Oh and i need sugar every now and then as i suffer sometimes from low blood sugar. I dont deprive myself of much and try to eat things in moderation. I don't enjoy Mcdonalds at all. It and other such high saturated fatty foods dont agree with me and provide my body no nourishment. My husband and I joke it just fills the hole!
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