Stories of Support

Posted , 7 users are following.

Dear Group,

As some of you may know, I am working on a research paper about this condition that we all share. I am interested in the support systems that you all have found helpful throughout your journey with this disease. 

Can you tell me some about the people in your lives that you have found particularly helpful? What is it about how they behaved or treated you that you found helpful?

Thank you for sharing always,

emily

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14 Replies

  • Posted

    Hi Emily

    I was diagnosed with Haemochromatosis at the same time as GS. I have found coping with these conditions extremely difficult as the symptoms are so similar. The main line of support has been in this area whereby we all seem to have our experience with GS. If you break your arm or leg you have a plaster and people can see that you have something wrong with you whereas with this there is no paster caste or sticking plaster to say that this is what we are sufferring with. So thank you all most kindly for your support in this.

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    • Posted

      Traudley,

      thank you so much form your honest reply. I understand the concept of the invisible disability. I am an assistant Yoga teacher on my college campus. The other students see me walking around with a big red yoga ball around the halls of our college. The students assume that I have the yoga ball because I am a yoga teacher, they do not know that I actually must take that ball with me into each class because the inflammation in my liver combined with a spinal chord injury creates a cocktail of pain that is so intense I must lay down on the ball on my belly in order to make it through the day. But if you were to see me walking around, you would have no idea.

      Having open conversations about our conditions is incredibly valuable to not letting the condition take over your life. Do you find this true?

      thank you to you too,

      emily 

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    • Posted

      Emily, to most people we look ok, very few people understand this condition and the symptoms associated with it.  I explained in earlier posts that my GP spent 13 years looking for gall and kidney stones because of the pain/ nausea I was experiencing and it was following an operation I became jaundiced and this is when it was found along with Haemochromatosis, I also have a spinal condition.On reading some of the threads it appears that the Liver Scans are normal, so what is the cause of the liver pain?   I hope that there is a medic out there reading this who can throw some light on it.

      Warm regards

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    • Posted

      traudley,

      After many years and many theories, we have been able to determine that the back pain comes from several factors. One my liver was inflamed to almost twice its normal size, that enlarged organ was pulling on the muscles and tissues around it, pArticuarlily the psoas muscle. That muscle connects from our coccyx bone up to T12 of the spine. UnforunetlyI have naturally occurring scoliosis at T12 in my spine. That sculiosis and psoas tension was then exasperated when I broke my coccyx bone, and possibly S1... And the pain became even worse as my sculiosis worsened and my liver was continuously struggling.

      Now that I am getting ahold of this condition of GS, my liver is becoming less inflamed, and I am experiencing a dramatic release of scar tissue in those area that have been held so tight for many years.

      ...So in my case, the spinal injury made the GS inflamed liver symptoms even more dramatic and painful than it would have been otherwise. Infact I Beleive the spinal injury might have triggered some of my GS symptoms.

      if you don't mind me asking, what was your spinal injury?

      does it effect your GS?

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  • Posted

    My parents have kind of brushed it under the rug, but some people who have taken it seriously is my university, they have given me a lot of support and we have meetings every now and then to see how it's going and if anything has changed
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    • Posted

      Hi Catherine  I can understand how you feel, for a long time I was called a Hypochondriac as I was always complaining of unwellness, when I was diagnosed with Haemochromatosis and GS I began to understand more. I can only speak of myself when I say that I have felt so alone for such a long time, I sincerely hope that by talking about it  you can find some consolation in knowing that what you have gone through  others have too! You have to learn to love your Liver, there is alot of information onThe British Liver Trust site regarding diet but you do have to find what works for you.   Does anyone else have a problem taking in fluids?

      Take Care

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  • Posted

    Hi Emily

    I am new here too....my husband has been diagnosed with GIlbert's after he collapsed a year ago and ended up in hospital. Fortunately he has a great GP who had earlier warned us that his adrenal function was weak so we had an idea of why he collapsed but it was still very frightening.  He woke with terrible pains in his kidney area in the middle of the night but also a pain under his ribs and then went to the bathroom to be sick, then i found him unconcious on the floor, grey, eyes rolling....to cut a long story short tests revealed nothing except high bilirubin which our doc said was GS.  His father has also had liver probs of same kind.

    My husband has never been properly well since glandular fever in his 20s (15yrs ago) and we always knew there was something not quite right with his liver as he had gone yellow with Glandular fever and was in bed 3 months...he also was extremely fatigued, said his legs and arms felt heavy, needed lots of sleep, cold hands and feet etc. He is tall (6'3") and skinny and always struggled to put weight on.

    after a couple of years of marriage and seeing him struggle and get nowhere with the docs ( we were even told it was psycological by one lovely doc!!) I started researching and concentrated on diet as we knew some things made him really tired.  Againg to cut a long story short I discovered that basically chemicals and additives were not good and after cutting these out he improved to about 80% energy levels.  He wasnt as yellow either. Baddies especially are red wine (sulphites?) in fact he has cut all alcohol, fake vanilla found in ice creams biscuits etc (made him really grumpy and irritable!) and we eat organic veg where possible to avoid pesticides. All this was before discovering GS which was a lightbulb moment as it pieced a lot together.

    this adrenal episode came after prolonged stress and a dark winter, we live in the north, which i now think is also relevant as I've since researched GS and realised he needs sun.  We went to France last summer and his health improved dramatically, even to the point of after 10days in 35 degrees every day he said it felt like a switch had switched and he started sweating whereas he doesnt usually. His body temp seemed to normalise and he felt great.

    other things which have helped:

    zinc supplements as he had stretch marks and white spots on nails

    beetroot juice - he swears by this and can literally feel it picking him up, we juice our own and freeze batches for convenience in jam jars!

    sitting in sun where possible

    getting enough sleep from an early night 10pm latest

    sorting his diet and also we found he had bacteria overgrowth in his gut so we sorted that out which helped too we think

    we wondered if his adrenal issues were connected with GS as is this the pathway that deactivates stress hormones too? I would be interested to hear back from anyone with similar experiences.  He is currently feeling better than he ever has and has a 90% normal life but we have to put in effort to keep him like this.  I feel very happy as I was in a dark place a year ago and it didnt look good for him, so there is hope! If I can help anyone I would be glad to share experiences, sorry this is so long! i have lots more to say smile

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    • Posted

      Hi Claire

      I just got diagnosed about 3 weeks ago..I am so happy I found this site..I have felt drained now for a while..I have the white spots on nails too..How much zinc does he take? I started b12 but I do not see a difference..I love that we can all support eachother on an illness that now after getting diagnosed makes sense after seeing how we all have similar symptoms..

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  • Posted

    Hi it's really interesting to hear you are doing research into Gilberts Syndrome. It would be great to know what you have found out. I was diagnosed 14 years ago and I'd say there is defeintely more information on the internet now than back then. My doctor dimissed it as non life threatening and said symptoms were manageable! I have not found them to be manageable all the time but it is good to finally be able to explain the tiredness and brain fog etc. Although more acknowledgment of this condition by the medical profession would really help as I never feel people take it seriously. 

    My sister has also been diagnosed with it in the past year which has been good as we can now support each other because my family always thought I was making it up. 

    I wish there was more support out there and more medical research to validate the symptoms. There are many times when I crash out and it would be helpful to be able to say it's because of Gilbert's syndrome without everyone giving me funny looks.

    Thank you

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    • Posted

      Hi Chaderella

      I was diagnosed with this at the same time as Haemochromatosis. the symptoms are very similar. It maybe as well to get your iron levels checked to see if there is anything going on there. haemochromatosis is more common but the GPs never look for this, it usually shows up on genetic screening and you only need one faulty gene.I agree with you when the doctors say that it is manageable, yes if you have a review BUT it is coping with the symptoms on a daily basis.  I find keeping hydrated helps and no salt, vary your fruits and veg through out the week. I find that I have aproblem with carbohydrates especially pasta anyone else experiencing the same?

      Take care and thank you for your contribution.

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    • Posted

      Hi yes I stick to wholemeal pasta now but even this can make me feel bloated the next day! When I stick to drinking water it does make a difference. We are trying more gluten free products for my daughter and I am finding these are easier to digest too. 
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    • Posted

      A lot of this is trial and error. We all have our own experience with Gilberts Syndrome in the end it amounts to the same.  It does help to keep a food diary which then makes grocery shopping easier.  Look into the British liver Trust as they have a clear and concise information on this. I hope that this helps you, sometimes you have to call upon fellow sufferers for support as not many seem to understand this condition even the medics!
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