struggling to carry on working

Hi everyone can anyone tell me if their fibro as made them give up working,cause I feel my symptoms are getting worse and worse,

after an eight hour shift I come home and go straight to bed it takes me the next day to get over it.i work 3 days a week,i really feel I am in a dilemma I am afraid to give my job up cause I have to live,bit unsure if I can claim anything what should I do ? having a bad day xx

23 Replies

  • I am sorry to hear you are struggling. I have been lucky in that I have had a flexible job, so that if I am feeling wiped out, I am able to go to bed and get up when feeling better. I know other people who have had to give up work altogether. It is such a random illness. I can be relatively fine for months and then have a flare up that knocks me off my feet, like at the moment. Hope you are able to get some answers. Have you spoken to your GP about your flare up? It may be useful to chat to your Doctor to see if they can help at all.

  • Hi janetM thanks for your support and advice x

  • Hi Kimey,

    I am at the beginning of week 6 of a really bad flare up, and it just happened that I'm not working at the moment, I'm trying to do a degree and struggling with it a lot because I have no energy or concentration to study.

    I can tell you that when I had a bad time of it about 8 years ago I had to quit my job because I couldn't physically manage it, I was bedridden for several months. I managed to get DLA at the time but I didn't fill in the form myself as I was only 16, so to be honest I don't know as much as I want to about the process.

    I'm not fit enough to work just now and need to look into financial support, particularly for over the summer while I have no student loan, but I know that you have had to be ill for 3 months or more and expect it to last longer than 9 months.

    Like JanetM said, this condition is so random, technically I have had fibro for 8 years, it never completely went away but I can be pretty ok for quite a long time and then all of a sudden I'm floored by a flare up and in agony.

    So would DLA or PIP, take it as a running condition for 8 years or say to me now that I've only been unwell to this degree for 6 weeks?

    I hope that your employers are understanding and that you find a way to make a decision that is best for your welfare overall. Sometimes you need to accept that your body is telling you you need the rest but it may be that you need work to still feel like yourself and normal. Only you know what it is. I know that I struggle mentally and emotionally when I feel useless and can't even do mundane things round the house.

    Hope any of that is useful in some way haha, hugs Jess xx

  • Hi tollaidh thankyou for your advice,i have always managed to work with other arthritis conditions and to be honest I prefer to work,however there comes a time when you are having more bad days than good you have to think of your health,at the moment the fibro is more in control of me than I am of it ,kim x

  • Hi there,

    I have no doubt that someone with more specific info will be along shortly with where to get more advice about benefits.

    I can only relate my own experience. I have been absent from work since Oct 2013 and was finally diagnosed with fibro in November 2013, although I have had a catalogue of musculoskeletal problems going back more than 20 years. I currently get the basic rate of employment and support allowance of £70 something a week as my employer had paid me the statutory amount of sickness benefit. Apparently this is likely to increase after 13 weeks but I have no idea about how that works. I do know I will continue to get this money for a year as it is contribution based and I have paid the required contributions. I have also applied for PIP but the time between making the initial claim and the medical is about 6 months and then it takes yet more time after that to know if you have been successful or not. Most claims are initially unsuccessful but many of these are granted on appeal. I would guess that any payments would be back dated to the date of the initial claim, if successful, but I can't say for sure.

    The best thing to do would be to talk to your local citizens advice bureau or benefit advice centre and your GP as to what your options are. Good luck, Linda.

  • they do backdate back to the initial appeal friend went through it and got payed back to when she originally applied

  • Hi Lruk thankyou for your advice and support its nice to have some idea of which way to turn thanks kimx

  • Hi kimey007

    I am so sorry to read that you are having such issues with your work as a result of your Fibro. I have read posts from many members who have struggled to stay in employment or had to reduce their hours to stay in employment.

    You can apply for PIP (Personal Independence Payment) and still keep your job. If you got the benefit you could possibly reduce your hours to the amount of benefit you qualify for? I have pasted you the link below on how to claim PIP, so I hope that you find this useful:

    I want to wish you all the best of luck with whatever you decide to do?

    All my hopes and dreams for you


  • I can so sympathise with you. I'm in Week 4 of a phased return after being off for 5 months since I was diagnosed. I think all my colleagues think I am fine and getting up to speed but don't think they understand the good/bad days effect, and they don't seem to get that it is a life long condition, (and I work in the NHS with clinicians...........) good luck to you, xx

  • hi sunnygirl2 I also work for the NHS and have done for 18 years.I do like my job but like you say no one around you really understands how you feel, that's why it was fab to find this site and chat to people that can relate to you,well thanks for your support take care x

  • All the forms i have filled in asked when the illness began and how long you have had it, all money is backdated to date of initial claim.

  • I can fully understand were ur coming from....i am in same position as you..hope you feel a little better soon ....take good care

  • Hi Kimey007,

    I gave up working about 5 years ago because of fibro and arthritis. I had to do long drives and struggled to get out the car when I got there. What finally decided I needed to give up was on one long drive- about 4 hours, I kept falling asleep and eventually had to stop and pull into a field and I virtually passed out.

    I handed in my notice shortly after. It wasn't a particularly demanding job, physically but it was stressful with long hours. It also paid well but I couldn't claim anything when I finished because I chose to give up. Also didn't have a proper diagnosis at the time.

    You need to get proper advice about benefits. Also speak to the disabitlity job advisor at the job centre. Perhaps try your your employer first, to see if they can amend your working pattern- maybe fewer hours on more days would help.

    Hope you find a better routine.


  • HI kimey007 I understand how hard it is I had a job I loved and on brill pay working 50hours a week taking painkillers to get threw each day doctors kept saying it was a virus. went off for a month went back then I went back I cut my hours to 40 and that still did not help. like you when i came home and went to bed, In may 2012 got so called other virus which knocked me off my feet for months still the GP was saying it was a virus .My boss from work was ringing me and coming out to see me. asking how I was. and did i know when i would be back I was too weak to do one days work never mind a full week in dec 2012 they finished me on med grounds it wasn't until oct 2013 that I was diagnosed with ostio and fibro but because work finished me I could claim ESA but only for 365 days Before you make a decision talk to your employer to see if you could flex your hours and If you have a good GP ask them for their advice . When your not working It not just the job you lose its the people that we worked with the girls nights out, At first they would phone me or call in to see me now only see them if i bump into them as they all work long hours. So if you can kimey find a way to stay in work and do so as long as you can Get advice from job center or CAB I came out blind to it all as always worked part time when children were young then full time so had never claimed before tried doing it on my own as i was to Proud to ask for help. My daughter made me a appointment and took me CAB they were great helping with everything. So I do hope you make the right decision for you .wish you well xx

  • I gave up my stressful highpowered job 8 years ago now - I'd had to go part-time because I was just ill all the time, but even that proved too much. I was driving around the country and really wasn't safe at all, as someone else has mentioned. It was a huge decision, and at the time I imagined that I'd get another, less stressful job, close to home. In the end, after giving up, I was so poorly for quite a while, and even when things improved I realised that I simply couldn't do it any more - just not reliable or consistent, even in my ability to turn up at all! It IS hard doing without my salary and managing on benefit, but for me it was absolutely the right decision, and I manage my condition much better these days simply because I'm not so tired and stressed. Hope this helps.

  • So sorry for you!! What a terrible dilemma to find yourself in. I too was at the point of having to go to bed for long periods; I was working full time. Please go back to your GP and 'demand' (not aggressively, but assertively) help. Your meds. may need increasing or changing; perhaps physio will help you. Have you considered going to Guys Hospital, London, which has the only national FM department?? There is an 18 week waiting period but look on their website and you will see they aim to help sufferers cope with their illnesses. I am seeing a rheumatologist next week, hopefully for a diagnosis as i still have not had a 100% one yet. I specifically asked my GP not to send me to this hospital but the appointment was made there anyway!! Too buys or not listening?? We have to be on top of our illnesses and it can seem very lonely at times. What meds. are you on??? Gabapentin helps me and co-codamol when really bad. All day yesterday, for no apparant reason, the calf muscle in my left leg was aching, and just as suddenly after about 10 hours - the pain vanished!! FM has to be one of the nastiest illnesses around.

    I wish you a better day today, and hope you will get onto your GP for help.

    We have a terrible benefits system in the UK. It's now designed IMO to pay the rent (housing benefit) for rich landlords, hence the cuts in other benefits; or simply denying sickness benefits to people who want to work but cannot. The limit for benefits is now £26k p.a., and I think we all know that is made up mostly of housing benefits!!

    Keep posting here, they have helped me greatly.


  • Hello kimey007,

    I think everyone on this forum can relate to what you're going through. Of course, it very much depends on which pain scale their on and how well they're symptoms are managed by their meds - or should I say, how well their body responds to the medical interventions their provided.

    Following my initial diagnosis, I did continue to work for three years. I'd been informed that the condition is not degenerative, but It got progressively worse and to cut a short story long, several Sick Days, HR meetings and Hearings later, I finally succumbed as my body just couldn't take it anymore and opted for voluntary redundancy.

    I received a pittance which went to clear off some debts and I'm still struggling on basic ESA despite putting in for PIP but realise now - almost a year afterwards that I really could not have carried on, no matter how much I wanted to. Sometimes, decisions are simply taken out of your hands!

    Only you can decide what you think is best for you. I was working full time and don't even envisage being able to hold down a part time job just yet so I'm in awe of all those who despite this debilitating condition, still continue to work and in some cases, provide essential services.

    Check the websites provided on the right for as much information and advice as you can and make the right decision for You.

    Wishing you the very best possible outcomes for You.

  • Hi my Fibro has increased since having my little girl at the end of 2012 I am a stay at home mum at the moment until both my babies go to school but I'm petrified of what work I am capable of as I can't stand without real bad pain and I can't sit without real bad pain and my hands and arms hurt too. This illness really knows how to take our confidence and independence doesn't it.

    I wish you all the best. X

  • I've been out of work for 2 months. You can look into

    disability or social security

    disability go on line look up who

    To contact. Good luck hugs

  • I had to go on disability in 2003. It got to the point I couldn't take it any longer. Know your body's limit's Sweetheart. Hope you feel better!!! xxx Mitzi

  • Hi I was working 36.5 hours a week for a national retailer , I basically worked myself into the ground , I could not carry a bag of sugar across the room without getting breathless , I have been fighting with diagnosis of fibro , and cronic fatigue , raynaulds , and reactive artherist which changed to rumatoild then changed to possible lupus which has now changed to sjorgrens and conective tissue , maybe if I had listened more and faught less I would be still working I have been off work since jan I have rent etc to pay but I have had to stop I have a small inheritance which I must admit has kept me afloat , but I have discovered the less you have in the bank the more help you get , so I have stopped worrying about money and my job am just concentrating on trying to get well all I have done this morning is get up and feed my dogs and strip my bed as a lovely lady now comes and makes it for me once I fortnight and it has been so hard to except this ,she comes from a local charity ,if you contact social services and explain your issues they will help you with benifit claims ,mobility issues and anything else that will be of help ,also if your on a water meter they can give you a form to say you need extra water to help your condition so cap your bills at £21. 00 a month . I only found out all this last month as my daughter was home from university and she had spent the first 4 days cleaning and tiding my house one of her friends came to see her and her mother picked her up and she run a care company sending people out to look after oap's. She took one look and asked what was going on with me and she went home made some phone calls and nowI get support , I don't know whether I am going to get back to work I would like to think I will ,but I have stopped worrying I might be being naive but other than as I said stripping my bed I sat down in a chair and have slept I don't know if it's the drugs I am on or it's the fatigue but anyway ,my point is look after yourself my love you can't work if your on your knees , I have only the children to be there for me and they live 3 and 5 hours away , I don't no if your single or have a family but you don't won't to get any worse go have a chat to your G P and get help and I was like you all I did was go to work and come home and go to bed I have worn myself out ,I thought I had to keep going when I dropped I as yet haven't really been able to get back up but I am sure I will given time . I hope I have helped I am starting to laugh again now which I could not do in the later part of last year I am starting to enjoy my garden a little I potter about its a start ,sorry for rambling I just think we get so caught up in money and bills which I know is the grown up thing to do ,but we forget about us and are wellbeing

  • Thanks to everyone for all your advice and support, It is really nice to speak to people who understand xxx

  • I cant work anymore and have been on ESA for 15 months I have been in the support group, as they call it for about 8 months and now get about £107 p/w til Jan 26 2015. This is a contribution based claim.

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