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Fibromyalgia Action UK
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I hate fibromyalgia and this is seven years into my prison sentence/illness

Why do I still try working full time to be living on morphine garbapentin etc in pain, exhausted, work constantly referring me to occupational health even when I'm not on sick!!! To my mind it's purely to get rid of me because I can't do delivery anymore, even though I'm learning to become a manager so am doing "substantial work" I'm so fed up of life In general, no quality time with my son as sleep yet if forced to leave I'm in debt so again no quality of life I hate fibromyalgia!!!!

7 Replies

I am just filling out a PIP form and you have to say now long you have had the illness and I realised one was coming up to 7 years. We always hope that there is some cure just around the corner and get so disappointed that that hasn't happened. We always hope that in our own case that some drug will help alleviate the problems enough to give us a reasonable quality of life.

You have actually done marvelously to be able to carry on working and I can imagine you are absolutely exhauste and I can imagine the debt can't be helping. I know it hasn't come to it at work yet but I would make enquiries as to what benefits you might be able to get if the worse comes to the worse. Have you asked for debt advice as it is amazing what can be done to help that situation. Do come on the site whenever you feel low as sharing your feelings will help.x


It's the having to do loads a makeup daily. To make me look less Ill :( I've never been a makeup person now if I want to not freak people out I need to lack of sleep scrawny face cos lost weight there with lack of appetite life's just a joke, how can a company put 26 disabled people through ohs with only one question, ill health to be given?

1 like

Hi denisewilson13

I am so genuinely sorry to read that you are suffering and struggling in this way, and I want to sincerely wish you all the best of luck my friend. I was wondering if you have tried applying for PIP as this could help supplement your income? Please take care of yourself.

All my hopes and dreams for you



I am full of admiration for you in all that you do. I am retired so don't have work worries but even if I was younger I cannot imagine what effort it takes you to do all you do. Certainly worth trying for a PIP....

Hope your day is as good as it can be (or better)



They have a duty of care to refer you to OH to see if there are reasonable adjustments they can make to allow you to continue doing your job. As I've told my manager and Oh: unless you can reduce my hours but not my pay and teleport me to work so I don't have to commute there is little you can do except put up with me when I'm not a happy bunny amd not count my sick against me!

Damned if you do,damned if you don't!


Yup, but it's the amount of referrals they do, ohs made it clear its permanent ,covered under equality and the adjustments I have work, and this is 7 years of referrals now less than6 months from last refferal there referring 26 of us (all disabled allegedly Because there's a repick ) yet number 1 on hit list only question asked was ill health retirement


I get exactly where you are coming from, had fibro for 22yrs now but only diagnosed 4 years ago (rheumatologist who diagnosed thought I'd had it since I was 11!) Have been getting worse, started new job last March, by October I had to drop to part time (3 days a week 6hrs a day) and struggle with that. This year had my worst ever flare and was off for almost 3 months been on restricted duties since June and my last day is in a few weeks. Can't really blame them as I can't cope in my job because of my health, they have spent 3 months looking to redeploy me into another role but it also has to be approved by OH and they have said no to the ones I put in for. Asked about ill health retirement but OH said they wouldn't recommend it as I would improve!? So capability hearing, decision to terminate my contract on grounds of ill health was going to appeal for ill health retirement but advised by union that wouldn't get it as they had been looking to redeploy me! So now having to come to terms with the fact that I am 33 and soon to have no job as my stupid fibro means I just can't manage to work and even my support network who are fab don't really get it because they don't have it!


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