Anyone else have Gilberts Syndrome?

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Anyone else have Gilberts Syndrome?

Postby Atom » Fri Aug 13, 2010 10:04 am

Hello. Best provide some background first. Back in August 2000 I experienced virus like symptoms for about a week. This developed into sensations - numbness and tingly - with pain in different areas of my body, complete lack of energy/constant fatigue and poor recovery to name but a few of the symptoms. Well, after about another six months, constantly explaining myself to different doctors with no diagnosis, bear in mind that I thought I had had a minor stroke or something, the third doctor I saw mentioned the word 'Fybromyalgia'. He sent me to a specialist at the local hospital who confirmed that I had this chronic condition.

At the time I was employed, but this ended after the symptoms got worse. My wife, children and mother were very supportive, but my father, step-mother, brother and sister thought that I was full of the brown sticky stuff. Infact my father, who himself is on benefits, said repeatedly over the phone to me that it was all in my f'ing head and I was just lazy b'stard. Well, as you can understand I was not very amused. The trouble is that I am one of the apparent minority of men who have this condition, being an ex-serviceman and always doing some form of physical activity the people I have told about my condition, although they are very few, just judge by what they see before them. I try and hide the illness.

Over the years I have managed to hold down part-time work, although there have been two further occasions where I have had to stop because things have gotten worse. Recently I had to goto the local A&E with pains in my chest. This was diagonised as 'acid reflux', and IBS. After some research of my own I discovered that people who have Fybromyalgia sometimes have these conditions aswell, which I found interesting. About four weeks ago I was further diagnosed with Gilberts Syndrome, apparently it's genetic or something, and I have had problems with my bilirubin levels for about the last fifteen years. They say that it has no real symptoms but if you have a look around, especially at this site you can see that some people who have it also have Fybromyalgia, and the symptoms are also very similar to Fybromyalgia: http://gilbertssyndrome.com/

At the moment I am trying to take each day as it comes. I have reduced my working hours and will push it out untill I have to stop again. I find that all of these conditons are a nightmare, you often look fine on the outside and people treat you like scum if you stop working, especially in the current climate.
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Re: Anyone else have Gilberts Syndrome?

Postby piglet_mini » Fri Aug 13, 2010 7:39 pm

I have never heard of gilberts syndrome before, however from following your link and reading the site I can see how it closely compares with FM. So do the doctors say its FM or Gilberts you have or both? At least with Gilberts there is a blood tests which can rule whether you have it or not. It is a shame there is not a standard set of symptoms for GPs to recognise.
I had some non-understanding members of family & friends so I printed out a post called one for the non-belivers it is under living with FM section. I didnt write it but it describes my life so well - it really is worth a go to see if they understand better. :hugs: hope things stay stable enough for you to carry on working
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Re: Anyone else have Gilberts Syndrome?

Postby hamstergirl » Fri Aug 13, 2010 8:30 pm

Hi

I had some blood tests about two years ago and my liver function was abnormal. He mentioned I may have Gilberts Syndrome. He went onto to mention that my liver (can't remember if he said too little or too much bilbarin).

He repeated blood test and it was normal so nothing else was done.

Lorraine
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Re: Anyone else have Gilberts Syndrome?

Postby Atom » Sat Aug 14, 2010 5:58 pm

Thank you for taking the time to reply. I am as of yesterday evening once again off work for another two weeks due to one of the, I'm not sure which one, conditions I have kicking off. It does your head in at times. As far as the doctors are concerened I have had Fybromyalgia since about August 2000, Acid reflux since February 2010, IBS apparently - I was not aware of the symptoms - on and off since 1999 - 2000 and Gilberts Syndrome, officially diagnosed in June 2010, with abnormal Bilirubin since about 1995.

My first liver function test in 1995 showed abnormal bilirubin levels, it was checked two weeks later and nothing further was discussed. The next liver function test to come back abnormal was in 2005 and it was the first time that the condition 'Gilberts Syndrome' was mentioned, the doctor made nothing of it. Then in June this year I was informed, following further abnormal liver function tests, that I have Gilberts Syndrome. The doctors tell you that it is a non-symtomatic condition and don't want to listen to anything you have to say about it.

This site is a good: http://experience.patient.co.uk/discuss ... .php?d=126. The doctor blew me out when I asked if it was the Gilberts playing up yesterday. She said that it's more than likely the Fybromyalgia. Today though it feels like the IBS and Fybromyalgia, maybe with a sprinkling of Gilberts :lol: Well, piglet_mini I will print off that sheet and carry it with me to show the non-belivers. My advice to hamstergirl is to get the test done again, Bilirubin levels can vary alot, the primary symtom seems to be Jaundice, although I don't tend to suffer with this, and malaise. It is also genetic, the doctor told me that both of my parents sides of the family would have had to carry it somewhere for me to have it.

Anyway, thank you once again.

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Re: Anyone else have Gilberts Syndrome?

Postby piglet_mini » Sat Aug 14, 2010 9:07 pm

So sorry to hear you are flaring up so much you have more time off work ahead x x :hugs:
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Re: Anyone else have Gilberts Syndrome?

Postby shazq » Tue Aug 17, 2010 3:22 pm

Hope you feel better soon Atom. :hugs:
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Re: Anyone else have Gilberts Syndrome?

Postby Atom » Tue Aug 17, 2010 6:29 pm

Thanks for the support everyone. Trouble is, even though I've been signed off for two weeks and I'm only four days into it, I feel guilty as hell. The current trash that the media keeps pumping out about people on benefits and the sick makes me feel like I should brand 'SCUM' onto my forehead and commit myself to a NAZI work camp or something :evil: Not sure what to do now. Not well enough to go back as I drive for a living. Stressed out, feel like I'm on another planet, knackered, bloody sensations... and I don't want to be seen out as people think that there's nothing wrong with me. Not to worry, things can only get better :lol:
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Re: Anyone else have Gilberts Syndrome?

Postby denys » Tue Aug 17, 2010 8:49 pm

Atom please stop feeling guilty for being ill we are not scum we are people who have worked and paid into the system. I know what the media is saying but it is only a small proportion of people who are cheating the system and that does not include us. :grouphug: :grouphug: :blowkiss:
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Re: Anyone else have Gilberts Syndrome?

Postby Atom » Wed Aug 18, 2010 6:32 pm

You'll have to forgive me for the litte rant. Even after ten years it's still hard to accept that I have a disability, something that limits what I want to do in life. I find it really hard to tell people about it, I feel like I am lying even though I know that I am not. I feel that the people I tell - and I don't tell many - are judging me by what they see. Atleast I have support from my wife, kids and this forum, thanks everyone :D
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Re: Anyone else have Gilberts Syndrome?

Postby iancb » Wed Sep 01, 2010 4:25 pm

Hi

I have no idea about GS but certainly experience IBS along with FM. Man, so many abbreviations. I get chronic pain in many areas of my body including face?? and the IBS has been with me for years with resultant problems which you will know about. Anyroad, whatever it is called or whatever combination of illness, you can't help what is happening and if others do not understand that's their problem. I couldn't give a 4x really. For example, when I use my blue badge, I occasionally get the odd look, particularly on a good day. As I don't use a stick (yet), people think what a pi** taker. I would gladly swap the badge for no pain - would pay to give it away even. But, in time, you develop a thicker skin and ignore the idiots. So, bear with it is my advice, its your life not someone else's. My dad, now deceased, had a similar vocabulary to your own. I became far more successful than him. Better job, better home, happier life, wife and a great family. So, keep on going as u never know how the world turns and even if the work becomes impossible, there is always something to do and claiming benefits is simply
an entitlement and has nothing to do with whether a person is lazy or not. Some on benefits are lazy some are not lazy. Some people like sugar in their tea ( i do 4 sure) and some do not. That's life.

Best wishes
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Re: Anyone else have Gilberts Syndrome?

Postby Atom » Thu Sep 02, 2010 9:39 am

Thanks Ian for taking the time to reply to my thread. I think that the main problem is that I look like quite a physical sort of bloke, I don't think that people - worst of all my father, step-mother, brother, sister and brother-in-law - can see past this, or rather they don't want to. It gets me down. For example, about six months ago I was at work and two of my felow workers were having a conversation about their wives who both have Fybromyalgia, well I thought that perhaps this might be a good time to mention that I have this disability as I rarely tell anyone, primarily due to embarrassment. Well, I was just about to open my mouth when my fellow workers began ripping into their partners by stating how the illness was all in their heads, so I said nothing.

To date I have not told my present employer officially - they have received sick notes from the doctors with Fybromyalgia on them - that I have this disability. Over the last ten years I have had to leave two jobs because of this illness and I fear that I am on the path to leaving another. I am concerned because at present my employer is trying to get rid of us - they don't want to pay redundancy - and employ contractors in our place, and if I officially informed them of this illness and how it effects me they may try to increase my workload or state that I am not fit to work there just to get rid of me.

Everyone on this site can no doubt understand where I am comming from. Of course, I don't suffer as bad as some of the people on here who are in constant pain, and my thoughts go out to them. Perhaps one day I will discover the secret to not care about what other people think of me, I'm still searching. Oh, and I like Manuka honey with hot water; helps wth the IBS and acid reflux so they say :lol:

Regards

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Re: Anyone else have Gilberts Syndrome?

Postby iancb » Thu Sep 02, 2010 10:31 am

Hi Atom
Like you, I am reasonably physical looking - lets say i don't look like i need help. However, I have constant pain but just manage to hold down a job. I have notified my employer about FM / disability and have encountered a few but not insurmountable problems with that. I used to be a lawyer (barrister) and so know roughly what I can and cannot do. Like you, my own employer is going through redundancies, reorganisations and generally getting rid of people. I suppose one of the problems is that, as I understand it, more females than males contract FM and males may think it diminishes their manliness to have an illness more associated with females.However, I take a slightly different view. If less men get it, then I am rarer amongst men. Probably less men report it in reality - hence the difference but we still get it as you know. I spoke to my GP yesterday about the attitude of my own employer. He said I was covered by the Disability Discrimination Act - which I already knew. I used to be a full time union official as well and so know the ropes so to speak.

Today, i will be seeing a union colleague to go through things and perhaps will serve a disability questionnaire on my employer as they have not been fair. Even with my own legal background I still ask for help and advice. There is an old saying: "only a fool has himself for a client". Alas, the world we live - if you don't protect your own self and interests who else will? I think you need to take impartial advice - eg, from a trade union or a CAB or free legal advice centre. You can then decide what, if anything, is said to your employer. I would certainly recommend speaking with someone and letting them guide you as to what you say to your employer. Silence is not always golden. Then, you will feel a lot more confident in speaking to others in the workplace and your disability will be recognised. You will be suprised how supportive colleagues can be - men and women.

Regards
Ian
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