Update and advice needed

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Update and advice needed

Postby SopsIsTops88 » Sun Jan 19, 2014 5:17 pm

Hi there,

It's been a little while since I last posted. Last time I wrote id just had my formal diagnosis and felt very happy to finally know the answer to why Id been feeling so ill for a long time.

After the initial happiness phase I went through a long spell of feeling down and struggling to cope, and thinking "why me?" I guess that is a normal feeling to have after diagnosis...

I've started on Amitriptyline to help me sleep and that has been working to a certain extent and the pain killers I'm on still help me. My next appointment with the rheumatologist is in a few months and hopefully I can look at having some other treatments.

I'm a graphic designer and I tried to get the help I needed at work by asking if I could work from home one day a week and the HR department where very rude and basically said they'd try to get me out of my job if I was too ill to be in the office all of the time and said that I can't expect any special treatment just because I had an illness.

After that I was very upset and wanted to leave my job as they were very uncaring and I was lucky enough to get a new role at a dream job I've wanted for the past 7 years.

I've been there for a week already and I'm loving it. The only thing is that I've been so busy ive had to work through my breaks and work late every night. I've been coping well all week apart from the normal everyday aches and pains but now it's the weekend I feel like I'm crashing and burning. In the evenings I'm sometimes so tired I can hardly function. I had terrible symptoms yesterday and even worse today and I have to work another full time week starting tomorrow and I'm really worried.

I haven't told them about my condition as I was really worried by the way the other company reacted and I'm really not in the type of industry where you can show any weakness. Having this job is a dream of mine and I don't want fibro to beat me! Having this new job has really helped with my moods as I love it so much I feel a lot happier within myself but that feeling is short lived if I have such bad symptoms out of work.

Another problem I'm having is severe IBS. On top of all the pains I have very bad bloating and IBS symptoms. I wanted to loose weight as a new year resolution but when I tried I had such a bad allergic reaction to something I feel like giving up. Every time I eat healthily I get the worst IBS and am ill for days. I've tried cutting out gluten and dairy and have always been vegetarian. But nothing helps :o(

Does anyone have any tips for coping with fibro symptoms at work or how to tell your boss you are unwell?

And also does anyone else have trouble with food and get allergic reactions to random things?

Sorry for the long message but any help would be really appreciated xx

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Re: Update and advice needed

Postby janet.clare4 » Sun Jan 19, 2014 5:46 pm

That's fantastic news about getting your dream job, well done. You have probably already been told this, but pacing yourself is the only way to go. I too am struggling at work and don't really feel that they completely understand what this condition is like for FMS sufferers.
Until this condition has been advertised fully and investigated by some really well known journalist we are all out on a limb.
Please don't push yourself until you end up with a full blown flare up, it's just not worth it to your health and wellbeing, which is more important than any career.
I do hope you feel better real soon.
Kind regards
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Re: Update and advice needed

Postby Jeany » Sun Jan 19, 2014 6:00 pm

Oh dear ! You have got yourself into a bit of a pickle really haven't you ? I don't know what you can say to your new employer really, because they could ask for evidence of when you were diagnosed. Maybe you could say that you were feeling better and thought you could cope, and now you are having a relapse.
Try to make home life as simple as possible by eating easy meals such as beans on toast or bacon and eggs,which are nutritious but easy and quick, and keep the house work to a minimum until you settle into your new job.
I am 57 and was diagnosed about 18 months ago, and have IBS and irritable bladder. I am now having to eat gluten free bread and past, and porridge is something that does not agree with me. It's weird at my age to start and have food allergies, and very boring drink wise because I can only have tea or water, because I have recurring stomach ulcers,
Be kind to yourself, and put stratagies in place to make life as easy as possible without giving in.
Good luck x
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Re: Update and advice needed

Postby whoami » Sun Jan 19, 2014 6:40 pm

I agree you have a bit of a problem.

I am happy you got your dream job but I hope that because of you not telling your story before you were officially hired , you do not have trouble keeping it.

As far as your old job is concerned, is there not some laws in the UK about being harassed on the job about your disability?

I don't know what to suggest in regards to how you are going to tell your new employer about your illness. They are going to need to know.

Good luck!

Jeany, I am like you 57 and have IBS and bladder issues along with others. I have had fibro for 25 years. It was triggered by an accident at work. I have not worked since that accident 25 years ago.

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Update and advice needed

Postby denys » Sun Jan 19, 2014 7:03 pm

Fibromyalgia is recognised under the disability act and so dont panic about losing your job, (what is the probationary period???) if I were you I would pick a quiet time when your boss doesnt seem to stressed or harassed and ask to talk. Explain you have only just got your diagnosis although you have had symptoms for a while. Take is some information about FM in case they havent come across it before and explain you are able to do your job but that during a flare you might need to rest up a little more.

Ask what would the chances be of working from home during these times, but stress that you will be doing your utmost to ensure you dont go into a flare at all. (We all know that flares happen but trying to pace will help reduce things)

Where you asked if you suffered from a disability or had any health issues before you started your job??? If you were and said no then that changes things but if not then hopefully things can be put into place for you which may make life a little easier

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Re: Update and advice needed

Postby Kalev » Mon Jan 20, 2014 5:02 pm

Hi Denys,
As stated Fibro is covered under the Disability at work act & your employer has to make any reasonable changes to enable you to continue with you job but as you just started it dose deepens whether or not they asked if you had any disability or not & whether you told them also you can always get a Fit note from your GP which states what changes are needed to be made at work & they have to take notice of that. If it's a big Company you can ask to be referd to the Occupational health Department they can help but be careful, if there is a traid union at your place of work they can always be a big help of if there is one you can join I had a lot of trouble with my formal employer but there is a lot of help out there you just have to look.
I hope this has been some help please feel free to get back to me if I can be of any help :-D
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Re: Update and advice needed

Postby Kalev » Mon Jan 20, 2014 6:28 pm

Hi Danys,
I forgot I have bad IBS too I used to use Fibojel & Movicol but am now using Colofac 135mg which seem to be working better best of luck :crazy:
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Re: Update and advice needed

Postby bandj » Mon Jan 20, 2014 7:52 pm

I took a really good booklet from arthritis research care into work. I found it at athe doctors. I gave it to my manager today and she was very pleased. It isn't too much to read but does give a good overview for someone wanting to know more.
There are these three things that remain: faith, hope and love. And the greatest of these is LOVE.
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