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Here's a list of the symptoms I experienced for year and years before learning how to manage my GS. I found that a lot of people who posted at www.gilbertssyndrome.com listed these, as well as many other symptoms (jaundice being one I don't think I ever experienced). And, yes, I experienced all of these at one time or another...many simultaneously. I think I went to every kind of doctor imaginable over the years trying to figure out what was wrong with me!
fatigue/tiredness (couldn't get through the day without at least a two hour nap)
brain fog (felt like I was half asleep most of the time)
headaches
poor memory
anxiety (probably from thinking I was going to die because I always felt like crap!)
nausea
loss of appetite
irritable bowel syndrome
stomach pain & cramping
liver/gall bladder pain (under right rib)
abdominal pain
itchiness/rashes
insomnia
difficulty concentrating
hypoglycemic reaction to foods
intolerance to (simple) carbs
alcohol intolerance (I was a cheap date)
abdominal bloating/swelling
breathlessness/labored breathing
heart palpitations
aching muscles/body aches
joint pain
numbness & tingling (my hands & feet would go completely numb...or a whole leg)
weakness (strenous exercise would make me vomit)
chemical sensitivity (stay away from perfume counters!)
unexplained weight loss
lump in the throat (felt like I couldn't swallow at times)
difficulty finding the right words
feeling "drunk"
intolerance to fatty foods (instant IBS!)
strong hangovers (deathly is more like it)
acid reflux
muscle twitches
environmental allergies (mold!)
bitter or metallic taste in the mouth (also bad smells that no one else smelled)
eye pain/blurry vision
feeling antisocial (occasionally just wanted to hide in my closet)
intolerance to drugs (most pain killers brought on projectile vomiting)
pale stools
back pain
dry skin
low body temperature (ran 1 degree below normal)
feeling cold (was always freezing, even in summer)
night sweats
lack of sweat (thought it was weird that I'd work out for an hour and never perspire)
sore or dry throat
light sensitivity
bloodshot eyes
I have been dealing with all those symptoms for 6 years! My anxiety is horrible! I always think im going to die! I have not been diagnosed but I had a blood test done the other day with a total bilirubin of 2.5. Dr said prob gilberts but wanted to be sure. My ultrasound was all normal. Did you have dark urine sometimes?
ReplyDeleteIm just tired of being scared and tired. I panic alot! And I feel sick prob bout 21 hours a day. Im miserable. But this gives me a little hope. Im doing an e-scopy soon. Dd said is precautionary. And im have very very anxious feelings about it.
Hi. I have been diagnosed after a jaundice episode. I feel relief when i read your words. All those years when doctors and people around me thought i was a hypochondriac attention-seeker liar lazy person. I still struggle as i was also diagnosed IBS syndrom and celiac disease. I am still searching a way to feel better, and especially to gain weight. I will read more of your articles and am eager to know more about your diet. Thank you again for sharing.
ReplyDeleteWell, most of those symptoms i've had or have.. I got diagnosed with GS and CFS and with only having 1 Kidney and apparently none of those things are issues or require any form of treatment and according to the Dr I should "Go and live my life"..
ReplyDeleteWell.. I spent 10 years going to the doctor, researching, feeling crap, struggling wanting to find out what was wrong and after so many tests and finally some results I'm told to go and live my life.. So I guess none of these issues should be affecting me in any way in the Dr's eyes? Or am I being shrugged off like I always was?
Wow Thought it was just me up to the age of 48 never been ill or even a cold ,,, botched Gall bladder surgery and wam ,, Haemachhromatosis / Gilbert’s Syndrome,,, Total life changing experience ,,,, all of the above ,, Thought I was going mad ,, I notice this post is a couple of years ago Any up date would really be helpful hope all is well
ReplyDeleteI've dealt with many of these issues myself. There was one point in time my doctor and I would verbally fight about it. She would constantly tell me "oh it's no big deal. It shouldn't affect you the way you say it does." that was until one day I dropped 20 pou do in 1 week and she told me it was physically impossible until they put me on the scale. Since that day I've seeked advice and not many pcp deal with this condition. I have learned specialist and neurologist that have given me helpful hints and diet tips. On bad days soup is your best friend, water with electrolytes too. Also there were time I would have to go in and get an Iv to flush my system. ultra purified peppermint oil and oil of oregano helps a Lot too When your struggling to eat. It's going to be a struggle to find the appropriate doctor but not impossible. Also therapy helped to with my mind and making me feel like I wasn't alone in dealing with all the pushback from doctors.
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