My bechets : Hi .before I was diagnosed with... - Behçet's UK

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My bechets

BatchA
BatchA
14 Replies

Hi .before I was diagnosed with bechets I was ill for seven years , I've been on colchine tablets for ten year . My illness is getting worse i.e. Joint pain , tiredness , I seem to sleep a lot, I get headache to and the sickness feeling , but never sick , I just wondered if I should give up my work as I work 12and a half hour shifts , but like I say I'm finding it hard , can anyone relate to me x I'd be most grateful to here

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BatchA

Hi I feel so much better talking to people who have the same condition as my self , I feel like a weight has gone thank u so much x👌

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belle623

Hi BatchA

I am so sorry you are having a rough go it. Comong to that crux of disability or not is so hard. Is there a way you can go down to part time? Have your doctors weighed in?

I am glad you joined the group!

:)

1 like
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BatchA
BatchA
in reply to belle623

think I'll try part time and see how I go , Thanku for listening x I feel so much better being able to tell someone how things are . And people understanding the condition xx many thanks

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belle623
belle623
in reply to BatchA

Of course! Please keep us posted :)

Xoxo

Ash

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JollyHS

Hello, I made a big change in my life even before I was diagnosed. I closed my shop and started working from home so that I could rest when needed and manage the illness as well as work. It made a difference. Although I would say life would have been worse if I hadn't had somehting to keep me going and work is what has kept me going. I do find rest is the key for me so a good work rest balance is essential. Good luck. x

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bdamir

What were you symptoms prior to the diagnosis? I'm still waiting the diagnosis and so interested in other people experiences. Thanks

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BatchA
BatchA
in reply to bdamir

Hi my symptoms were headache but more than a normal head ache .tiredness I could sleep for a week . Joint pain in my legs like I was being pulled , sores back and front down below . Mouth sores too all over my mouth and throat , rash on my legs . I would scratch my skin off . I hope this helps

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sam0511

I think i am just coming out of a flare. Just the same as you, so tired I could sleep on a washing line. Had joint pain too, joints in hands, knees, arms and shoulders. I take 150mg of Azathioprine daily and it is working. Have you had your iron levels checked? I have had to go back on iron just this morning. I am also taking vitamin D, as we don't store it. If you work shifts you won't be getting much daylight I presume? Try to get outside as much as possible, doesn't have to be sunny, just daylight. Hope this helps. Keep in touch.

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RuthieN

You probably need a good review of your medication regime. It might be time for a change!

Before you make any decision to finish work it might be an ideas to talk to you manager, HR & maybe even Occupational Heath. Employers have a responsibility now under the DDA! Does your employer have any sort of flexible working policies? They might be able to offer you a different role long or short term until your health either improves or deteriorates. If your sat at home with nothing to distract you from your illness, my experience is that people become worse and anxiety and depression also manage to work their way in to the mix!

From someone who was a disability employment advisor in a previous life time - It's never a good move just finish work yourself. Let them take you down the ill health capability route if you really are that bad that you want to finish. But explore the other avenues first.

Good Luck 🍀

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River-Gray-67

I suggest you work as long as you can because as you get older, working gets harder. Unless you can work from home.

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rooser1

I can relate as well. I was working 12-14 hour days 5-6 days a week at one point and had to find a new job. Rest is essential. Good diet is essential. Stay up on water, rest and keep sugar and breads out your diet. Intermittent fasting can also help boost energy and reduce inflammation. (eat from say 12pm-8pm....doesnt matter when just make it an 8 hour window)

You are not alone! It sucks, but it CAN get better- keep listening to your body. xoxo

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cupples929

Hi I have been diagnosed for 4 years, big struggle to work full time , last year November 2016 I could do it no more , sleeping every hour I was out off work , pains in my joints while in/ out work , flare ups with ulcers , sorry to be defeatist ,hope your different, but I came out off work , I need to rest more than I can work , my body dictates , sorry to be so negative but it truly became impossible for me to continue after 28 years in the same company !

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Hi Batch,

My situation is a lot like yours and if I can help you in any way then just let me know. I help others (& the families/loved ones that get caught up in the mess. Also my partner will talk with BD partners so that they can express their concerns and get a reply from someone that's lived through it all in the same way as them) come to terms with their diagnosis. I also help with the benefits side of things, which is becoming increasingly complicated lol!

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Matilda53

I have a similar history... prednisone first, then colchicine (10 years), plaquenil was added to the list 5 years ago. Last year the rheumatologist had to add azathioprine but results are really good.... I don't dread moving anymore. Had to retire early last year but I have no regrets about that. 12 hour shifts are killer.

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