GS & Body pain

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I've recently been diagnosed with Gilberts Syndrome and i suddenly started getting body ache , my back woud start to hurt to the point that i can't even sit up straight , or my right knee would hurt me and just start to swell up.. Even my arms sometimes. Is this normal ? I am 19 years old so i don't think it has anything to do with age. 

Also , when its the time of the month i get so sick , i dont have an appetite , i'd throw up and i wouldn't be able to get out of bed because of the pain.. Is this also normal ? 

Thank you x

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4 Replies

  • Posted

    Hey Samah.

    Sorry you are struggling right now. Have u looked into symptoms of Gilberts syndrome? Many people with G.S describe a wide variety of symptoms but i dont know if extreme body pain is one of them.

    Have u been sick recently? Like the flu or something similar?

    My G.S was only diagnosed at the same time as i had a severe I.B.S attack. So maybe something has triigered your Gilberts and your aches and pains as a result.

    Its so hard to know cause most G.Ps say its harmless blah blah blah.

    Read through the discussions on here. And if you dont feel well go back to the doctor and get more extensive tests done.

    Hope u feel better soon ☺

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    • Posted

      Hey cara ,

      I have been sick actually recently , but thats when they found that i had GS , it was also that time of the month for me , i've been getting these attacks  for the past 3-4 years now and i always end up admitted , they never knew what was wrong with me though until a few weeks ago. 

      I looked up at some discussions and some stuff about GS but i don't really understand if this pain is caused by that or not.. Its soon going to be that time of the month again and i just hope this time it doesnt triger anything.

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    • Posted

      I feel for you!

      Some days are a struggle. I do get aches and pains but i thought it was due to getting older! Im (36). I have also been extremely low in vitamin D before and i was so sore i cant explain the feeling. I thought i had arthritis!

      Certain times of month seem to be worse than others. I dont think theres a miracle cure. I try to eat well, drink lots of water and take a multi vitamin. I try also to get a good night's sleep which i just can no longer manage. Its the tiredness i find the hardest.

      I hope u manage to find something that works for u and makes u feel a little better. Its tough feeling unwell every day xx

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    • Posted

      I'm also very low on vitamin D .. They gave me pills to take for that though. I also try to eat well and drink lost of water. i actually don't drink anything but water. Also, I have difficulty sleeping at night too.. I'm not able to sleep until its 6-7 in the morning.. Even if i do feel tired i just can't get myself to sleep. I'm new to all of this so i have so many questions as to what is normal and what isn't. 

      I'm only 18 years old ( Going to turn 19 in a few months ) and I feel like i can no longer have fun with trying new things now because i fear it would trigger something and i would just end up in the hospital again. 

      Thank you for your reply cara and giving me an answer that actually helps.

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