Does Gilbert’s Syndrome affect anyone else this much?

I was diagnosed with Gilbert's syndrome earlier this year, and it looks like i was unknowingly having its symptoms as far back as 2018.

Anyway, pretty much since 2016, I've felt like rubbish everyday to varying degrees, so I was actually happy to receive the GS diagnosis as it answered a lot of questions. Unfortunately, it's also left me with other questions that i have no idea how to answer. Here are symptoms I have daily:

Nausea

Fatigue

Yellow Eyes (never goes)

Brain Fog (never goes)

Itchy legs

Anxiety (varies)

Acid Reflux

Gastrointestinal discomfort

Headaches (moderate to severe)

'Toxic' Feeling

I know many people have these symptoms, but I'm feeling pretty alone in terms of how it affects my daily life. My profession means I'm doing a lot of sitting down, so I wanted to take up something active as I was worried about cardiovascular health and overall wellbeing.

I tried running in the mornings - I lasted only a week, running about 3 times per week for 20-30 minutes with proper warm up and cool down. By the end of the week i felt like I'd run all day, everyday, and felt like I'd been poisoned. Appetite was non-existent, daily severe headaches and all if the symptoms i mentioned seemed to be 10x worse.

I've tried everything i can think of in terms of exercise. No matter what it is, I'm left feeling the same way after several days, if not immediately, and I feel like the slightest bit of activity (even walking more than 30 minutes) can do this to me. This is getting me down a lot because i feel like even though i want to be fit and healthy, I'm unable to.

Because if the loss of appetite, I'm struggling to put on weight. At one point in my life, I weighed over 100Kg, with a low-body fat percentage in my lifting days. Now, I struggle to get over 73Kg. Everytime I make an effort to eat more - a couple of days in and I'm hit with this brick wall in my stomach. Intense nausea and a totally absent appetite. This has also caused me to miss out on a lot of nutrients which is also impacting my health.

I'm lucky to be able to meet 70% of my daily requirements for most vitamins and minerals. When I do reach 100%, as mentioned, it lasts only a couple of days and I'm unintentionally fasting because I physically cannot eat. I know I'm deficient in vitamin D, and when i take the supplements, I always feel worse, and then better when I stop.

These symptoms seem to have affected every area of my life either directly or indirectly, and honestly, I don't know where to go from here. I can't enjoy food I like, exercise, sleep, do stuff with my family, because it always leads to a bad episode, resulting in days, sometimes weeks of having to recover from it.

Is there anyway to actually live a normal life with these symptoms? Anybody get them this bad and this frequently?

thanks for reading!

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