How many of you manage to work with Fibro?

I was working up until late 2012, when I had to leave work as I just couldn't manage it any more, I was kind of pushed into the decision by my employers...

I thought I would find something part time but my health got worse and my GP suggested I stop looking and go on illness benefit until I feel fit enough and he considers I am ready to work again.

Despite this and the fact that I am worse now than I was then, I was called for assessment by the social twice and then told my benefit was being stopped as in their opinion I am capable of work.

We are appealing, along with hundreds of others and from what I hear most people are not winning appeals!

I cannot afford to not work and receive no benefit, so it is looking like I will have to try find some sort of work. I am a bit worried and a bit scared as although I would love to be out working and meeting people again (I worked in retail and customer service, which is a lot of standing and some heavy lifting) I really don't feel I will be able for working.

Is anyone here managing to hold down a job with this illness and how do you do it?

46 Replies

  • I work 4 days a week shifts 7-3 or 3-11. To be honest I don't really cope with it but think if I gave up work I would end up fighting like you and with 2 small children don't think I hav it in me. I try and take breaks when possible and always hav a note pad on hand to help with the fibro fog in a way I think I'm lucky I work with very understanding people. I have been told I need to do 5 days a week for March as a lot of holidays coming up but one of the other assistants believe this is helping me the reduction in hours. Sorry for going on but I don't cope! X

  • When I am cooking breakfast at our b and b I often say to my partner ermm what am I supposed to be doing ! And she will patiently say frying 4 eggs ! I would go crazy and be poverty stricken if I gave up our children are 12 and 14 and I am missing out on their lives

  • Hi Pippa,

    I've struggled with the work thing since I was diagnosed 5 years ago, but because I was on my own, kept going as had no choice. Drs and specialists said I should quit, that I had a significant disability and shouldn't be working, and in the end, last year, faced with being sacked for absences and on the advice of occupational health for my employer (who happened to be Atos), I gave up. I'm now on ESA, and have lost my home and had to move back in with my parents at 37. Very, very depressing. I know that like you, as soon as ATOS get hold of the questionnaire (I only claimed 4 weeks ago as work took so long to resolve), that I will be up against Atos again, but that this time they'll suddenly be saying I'm fit for all sorts.

    Sadly, it's one of the worst things about this illness, it's so badly misunderstood and played down. As if we didn't have enough to contend with. Sorry I can't help, but at least you know you aren't alone :( xxx

  • Hi,

    I had to give up work. Finances are a struggle but….. I didn't have any life while I was working.

    Hope you win your appeal.



  • Sadly I am trapped in a non life trying to help run a hotel means I hardly ever see my family but I can't get any financial assistance so I am doomed to an existence of work the sleep then work

  • That's what my life was too. It's horrible and it took it's toll on me emotionally and physically. I had to stop :-(. I need to tackle the financial side of things really soon but can't face it at the moment with so many other things piling in on me right now. I hope you do get the financial support you need. This site has got some great info and links.



  • Hello Pippa49,

    We do understand how you must be feeling having left my job as could not continue and then struggled to get the benefits I was entitled too. I, myself used our local advocacy service to help me complete the forms and support me through appeals, this helped relieve the stress a little. For more information about Advocacy please see the post below;

    If you feel you would like to continue your appeal as you think work may be difficult. please do email FibroAction directly for some information which may help you to complete your forms,

    This help from FibroAction may help to reduce the stress you experience and the impact it has on your symptoms. Please see the link below with information to our website;

    Please see this post also;

    If you decide to try working a small part time job and I think considering trying to increase the amount you work you do would probably be best, so you pace yourself slowly back into work. I wondered have you got your symptoms under control, as this I feel would be a thing you should consider even before attempting work.

    I must be honest and say please try not to be too disappointed if you cannot achieve physically what you want to do at this present time , it may just not be the right time for you as yet, You may need sometime to find more treatments that work for you and may need to increase your exercise tolerance which may mean you can work in the future.

    Please find these poll results which may be of interest;

    I wish you all the best what ever you decide

    Emma :)

    FibroAction Administrator

  • Hi Emma. I've saved your answer as I fear I'm going down that road.

    Pippa49, I'm still working. I've had pain problems for years and last year it started seriously interfering with things, and didn't go away after a holiday. It then took ages to investigate so I'm very recently diagnosed. I'm just coming to the end of 2 weeks off work while we bugger about - sorry, I mean experiment - with the right medication. Had IBS which interferes with work, and tinnitus, both for years so it MAY have been underlying for some time.

    I have two part time jobs, that's more due to the jobs market than illness but jobseeking isn't helped by some of the questions. Like "how many days off in the last year. 2011 that was 65! Who's going to take me on like that? I have one sympathetic employer and one not so sympathetic. Stress of that doesn't help. I had dealings with ATOS following 12 weeks off after an op, so am not looking forward to the situation.

    So yes, I'm working, but only just. I'd have had to give up my previous job by now if I hadn't been made redundant anyway! My present jobs are petty physical so I can see both going sooner or later unless the magic cure is found or a decent employer. I can see their view though, the tasks have to be completed and that doesn't happen if someone is frequently absent and there's no such thing as light duties!

    That's kind of turned into a rant but it does lead to the answer to your question and it's this. Do I go to work in pain or stay home in pain? I only stay home when it would be impossible to work. I'm taking large doses of paracetamol, codeine and amytriptylene

    Light at the end of the tunnel is actually, quite large numbers of people win ATOS appeals though I doubt it's a majority, unless that's changing. :)

  • Hi Fenbadger, so sorry to hear that you have to struggle on and work especially as you don't have two sympathetic employers. My last employers were sympathetic enough but of course their business comes first! I can understand that but I was a good employee until I started having all this pain. Also if I do not win my appeal and have to consider looking for work, I doubt any employer will be impressed that I had a year or so out of work sick!

    I wish you luck in whatever you have to do :)

  • Yeah, that's the problem with reality that DWP and ATOS don't understand. I sympathise with the employer too. If there's work that must be done but without time limit, :). if not :(

    I'll hang on to what I have as long as I can. it's harder to get rid of someone on medical grounds but you take on the person most suited to the task :( :P

  • Get off the pain killers and give the ketogenic diet a go xxx♡♡♡

  • Thank you Emma :), to answer your question...No my symptoms are not under control, I am on various pain medications and other medications which are being trialled and changed around at the moment and I have just changed my exercise regime to see if that helps. My GP is very good and very supportive, I also see a consultant and he is of the opinion that no way could I work full time but a few hours here and there would be good...good if I could get it but wouldn't make me much of a salary! Also while on benefit or appealing I am not even allowed to take up voluntary work. There will also be no question of returning to work until the appeal is over as while appealing it is assumed you are still entitled to benefit, even though they are not giving me benefit and say I am not!!???

    That is why my GP feels I am not ready for work yet and my appeal is mainly based on that too.

    I live in Ireland where the system is a bit different but not too different with regard to benefits and entitlements. My appeal is in the early stages and could take months at the moment they are giving me a supplementary payment until my appeal is heard. I have sent all the relative info needed to them including consultant reports, copy of prescriptions and a detailed description of my symptoms and impact on my day to day life. I explained all this at my assessments and at the last assessment got someone who was very understanding but then the deciding person up in head office obviously was not convinced.

    I will check out those links Emma and also have been in touch with my local citizens advice. We should not have to add to our stress of Fibro by having to fight for our entitlements!

  • Don't you ever wonder why so many people are falling foul of this dreadful disease I am convinced that it is down to aspartame and processed foids please check out

  • Or is it just Aspartame? Diabetes sufferers have problems with it for sure. The health professionals often promote artificial sweeteners. Others have told me it can spark off IBS. Either way hmm. There's a lot in fizzy drinks and products marketed as low sugar - well it's true, isn't it?

    This isn't the whole cure but

    Standard reply no 1 Eat a healthy balanced diet

    It's not actually that easy or economical but we can avoid some of these poisons (for that's what I think they are) even though they're passed as "safe". And what about other additives. decaffeinated coffee has given rise to a whole industry of high caffeine so called energy drinks. We seem to have so many additives we can't pin it down to just one or a small group. And even then no matter how healthy one's lifestyle and intake there will always be something to bite you in the back. But it does give you a bit better fighting chance.

  • Sorry for the rant but additives are a bit of a soapbox of mine. I think ii's important :)

  • I am 19 and I have had a few part time jobs since I started with Fibro at the age of 15 however as my condition has become worse I have now dropped down to part time 20 hours a week and I am still finding it hard to keep going there. Employers don't understand specially places like Next warehouses which is were i work. They treat everyone as though they are fine for example if you have three occasions where you are off work then they put an investigation in against you, when I work 5 days a week it is hard not to have a day off =/

    I have been looking at desk jobs etc but everywhere i apply needs experience and the only experience I have is in kitchens and a warehouse so not finding it easy to get a job which will help me stay mobile on my days off to as at the minute the two days off i have in the week are spent on the sofa or in bed.

    If it wasnt for determination that i dont want to be on benefits and the dole at my age then i probably wouldnt be able to hold down this job as to be honest with you i cant cope.

  • Hi Kayshasmith1, I don't know how I'd have coped if I were your age and suffering with this. I suppose you just do. Would NEXT be able to desk train you in office based work? You might have to keep quiet it's for health reasons however, but more a career move/option? multiskilling? Worth a try perhaps? Even on the phone/customer service. Other option would be to offer to work voluntarily for a small company to give you some skills.

    I know it's all easy for me to say, but just putting some suggestions out there for you to perhaps think about....

    Good luck.

  • Hi Pippa49

    I am so sorry to read of your situation, I can only imagine how it is making you feel. I was wondering if you were a confident person? As I always think that having some confidence is half the job done! I do not know what sort of work you use to undertake but if it was physical work and no longer open to you then it might be possible to retrain for something. If you're not working the jobcentre can advise you on what training opportunities are available. Is there anything that you really wanted to do? Maybe this is your chance to fulfill some of your dreams?

    In the meantime keep fighting for the benefits that are rightfully yours. You have paid your taxes and now it is your turn to be looked after.

    All my hopes and dreams for you

    Ken x

  • Thank you Ken, I am a fairly confident person but not overly confident and things like assessments and appeals make me a bundle of nerves!

  • Hi Pippa

    I was diagnosed about a year ago, I was working full time (but in flexi time) until August when I lost my job (I knew this was happening for a long time and had some money to get my by so I was lucky to be able to take a few months off).

    Then in October I got a new job, 9 to 5.30 most days. In my head I wanted everything to be normal, I think I knew deep down I was going to struggle but I tried anyway. Anyway, 3 months in and I've already reduced my hours. I'm very lucky that my employer supported me (especially as I've only been there 3 months). I now work 10 to 4 mon to fri, and just those few hours less has made such a difference.

    I think with illnesses like this it's important to get the balance right. There are employers out there that will be supportive so it's worth looking for part time work.

    I just find there is so little financial help out there, at the moment my wages just about pay for my rent and bills and there's not much left over at all!!!

  • I just about manage to hold down a job but I don't think my condition is quite a severe as many of the people on here. I did have to go part time at one point for about a year but fortunately my employers were really understanding and I am now back to full time. it is really hard and pretty much don't have the energy to do anything after work or at the weekends but at least I don't have the stress of having to deal with dwp.

  • Hi Pippa49, I work 24 hours a week, which is 5 mornings and 1 afternoon. The long day is the hardest for me and I come home absolutely wiped out. I am very lucky to have understanding bosses who have allowed me to stagger my start time if I need to, say I have had a really bad night when I cant sleep. I also take little breaks if I have to. As I say I am lucky. Even so when I get home I usually end up falling asleep on my chair :) much to the amusement of the rest of my family, who are all grown up, thankfully. Is there anyone else who finds they can't sleep at night because of their restless legs and pain, but do seem to be able to drop off on their chair or sofa? Reading some of your comments, and being a newbie to Fybro I don't seem to be just as bad with pain as some of you, who have all of my sympathy. Does this mean I am just going to get worse?

    I have just been diagnosed about 6 months ago but have been suffering for about 3 - 4 years.

    Good luck with your appeal!

  • I'm lucky enough to be working from home. I do work full time still. If I was in an office I'd struggle though to remain full time.

    Clearly though everyone is affected differently and I am not currently affected the same as yourself. It's very difficult with this condition as often it can look like you are okay to others and one day can be totally different to the next.

    I really hope you have some joy with social. Best of luck!

  • Dont give up. I stuggled so long in a job and eventually it was too much for me and I had to put my hands up and try the benefit. Absolutely noone gets it on the first interview - it is absolutely corrupt and the people who interview you are rubbish. They will smile and be really friendly and not listen to all the pain you have or all the things you cant do and how terribly your life is affected. They will count the seconds that you sit down to a second so stand up whenever you can and judge you on if you are presentable or not(like someone with chronic pain cant make an effort or isnt allowed)..even walking behind you on way in judging you. If they ask you what you can do on a good day is a trap you literally should say I dont have a good day or they will write you up on the slightest thing you can do. ITS RIDICULOUS. i think they get commission on how many people they dont let through as well. I won an appeal and got work related and then they hounded me so next time I was asked into interview I told the truth that I coulnt get into town.....and a doctor came out and I told him exactly how I feel hounded and stressed and that actual people have comitted suicide cos of the hounding and denial you know AS well as how sick I was and that I feel like a flippen criminal. I got support after that...dont give up....please it is your right. we paid taxes when we worked and now we are very ill we are treated like scroungers....sorry but it is worse than ever for us and even the nhs is not so good since tories came to power.....

  • I had to start working for myself around 10 years ago. Now I've had to change what I do so I am home and can work on the computer for as long as I want when I want. I still have to work for myself as no employer would put up with me stopping every 15-30 mins or getting up and wondering about, or me just going to bed in the middle of the day

  • I am working 4 days but do struggle and my sickness record is very bad. Pacing helps but is not always easy to achieve . Something with short shifts eg 4hours would be good. Trying to find a job that suits your health needs is difficult.

  • The whole system sucks. I'm fortunate enough to not have to work currently as I am a full time carer for my son. This will soon change though as he leaves college this year and money becomes an issue.

    I am terribly stubborn and refuse to believe I am bad enough to apply, let alone receive disability. I do ok on the tablets the GP has given to me. However, my previous career paths have always been active (equine based and 1-1 support for SEN child in primary whilst doing a degree). I know there is no way I could manage either of these jobs now. I can't sit at a desk or type ( I'm using my iPod to do this to avoid hurting my wrists, thumbs or hands) without discomfort. Standing or walking for extended periods will cause me great pain in my knees and steps are a big no no. My stairs can be too much.

    I figure if I could get a pt job in a library I might be ok.

    Think about your limitations and what you feel you can realistically manage and then look at what jobs would be suitable. Try to have a talk with someone who can advise you on your options. I wish you lots of luck and remember to not give up on disability if that is what you need to do.


  • I was self employed for a while and was working silly hours - at one point did a 7 day week without a break for 7 months - had a week off in 12 months. I reduced my hours a bit but another 12 months or so later my GP told me my health was being seriously compromised & I needed to stop before I did myself serious problems. I've not worked since. In the last 5 years my physical health has really deteriorated between the Fibromyalgia & OA (gone from mild spondylitis in my cervical and lumber spine to moderate/severe all down my spine in that time). I doubt I could even manage part time work these days as I'm in constant pain. I'm now in receipt of DLA.

  • I just took redundancy from work - I've been off sick for the past 6 months and just couldn't cope now at 49 I am alone, renting again (house went when my marriage went) and no idea what type of job I can handle, so am about to apply for ESA, PIP, etc.....I am terrified, not sleeping and too foggy to do the forms yet........

  • Sorry to hear this, try not to worry, could CAB maybe help with your forms, or a family member or friend?

  • Hello Deecov,

    If you are struggling with your forms please do email me at FibroAction, as we can email you some information which may help.

    Could I also provide you with a link to a post about Advocacy as I used this service to help me complete my forms. Here's the post;

    I hope this helps & I look forward to hearing from you

    Best Wishes

    Emma :)

    FibroAction Administrator

  • thank you MDaisy I will do that :)

  • This all sounds as terrible as I expected when I first thought about packing in my self employed occupation and claiming benefits. I did manage to hang on in there and work when I can and rest when I flare. Not ideal, as it does let clients down occasionally...I make garden sculpture..but I have far more flexibility this way. I am fortunate in that my husband works and we can get by but I need the extra to pay for anything I need outside household bills, like car, dentist, clothes..just anything personal. My mum is 82 and needs my support even if it's only taxiing her when I'm well enough. My gp is not supportive, and should I have to pack it all in again, I have considered going on job seekers allowance and let them figure out for themselves when I keep failing. When we have worked so hard/been very physical all out lives this condition is such a blow. Good luck Pippa and everyone else.

  • Thank you, like you if I am refused benefit again I will be entitled to jobseekers and I will do that and maybe when I get no work, they will cop on! All the best to you x

  • I have a Blackpool_Hotel (see the app ) which I run with my wife we can't afford employees so between us we do everything the beauty of the job is I can do a bit at a time resting in between cleaning cooking decorating etc but every day is a struggle however I couldn't just do nothing although sometimes the pain leaves me with no option but to do just that "nothing" tjis is very aggravating and frustrating as my poor partner is left to do everything ...the one job I have to make sure that I do is the cooking of the breakfasts I find that I can manage this so long as I lay down for a sleep afterwards !! If you can find a job where you can more or less choose your hours you can work but fibro rules and we have to be its slave thats the nature of this beast of a disease which has wrecked my life and that of my spouse and my children who hardly ever see me as I am usually either asleep or working ...check out the spoon theory it helps to plan your days ...but only one day at a time ... Things I find that help are avoiding wheat sugar and processed foods also aspartame is a no no ( ) no tinned food no packets just fresh meat fresh vegs ...avoid aluminum in deodorants use aluminum free ones Take vitamin d in vast quantities .If you want something sweet have a honey and fresh lemon drink tjis also energize s you I highly recommend it and if you are particularly poorly stick a whiskey in it ! Works wonders ...good luck finding a job try a bit of domestic help put an ad in a shop window remember there are people way worse off than us even if you could do a bit of shopping for a pensioner ask your local church leader ? It's work you can do in your own time ! And very rewarding because people who are that infirm understand our short comings and disabilities ♡♥♡

  • Mornin wow I am impressed well done you how brilliant you are - your pacing must be excellent. I suppose one of the advantages of working where you live is you can go for stroll along the sea edge love it rather dangerous at moment so do take care.

    I had to give my shop up because of Fibro I could not bend or stand all day etc It has progressively worsened and my back given way so now I am stuck. Still I loved being my own boss for twelve years.

    You are right there is always someone worse off than our selves and that is a very good thing to remember.

    I agree with you about avoiding wheat and sweet foods I have become a fish and veg person and it suits me much better.

    Brill suggestion for energy drink I shall give it a go!!

    If you really need chocolate a Twirly whirly is the answer keep them in the fridge and break them up just before opening packet very rewarding not many calories :D


  • Morning Gins tbh most of the credit should go to my better half for her hard work and endless support and understanding also our two children who have missed out on so much ...fireworks parties I couldn't attend even last week I could not manage to go see the school production of les miserables which is strangely ironic !! I would love Cilla to walk in and tell us we can have a holiday ..oh well dream on must get a spoon out now to get ready to cook our two guests breakfast ! Aspartame free and all organic !!

    Take care have a good day keep fighting !

    I love the name Gins lol when God asked me before I was born how many chins I wanted I thought he said Gin so I asked for a Double x ;)

  • Ps freeze your chocolate

  • Hi Pippa

    I was coming up to 31 when I gave up work after changing from full to part-time and still couldn't cope. I worked in hotel and leisure industry most of my working life starting out as a kitchen help at a local restaurant at the age of 14, I was always active and fit but this illness and the others gave me no choice as I couldn't manage it anymore :( Like you no lifting or long periods of standing, sitting, bending was awful and kneeling was a direct no-no.............. still is!!............ Now I can't deal with the pressure on my knees, hips or back :(


    It is a long winded grind that I feel shouldn't be necessary but unfortunately its a road we all share here on the forum and I'm sorry you've ended up in the situation without benefits.

    Speaking from personal experience:

    They've stopped my money approx 5 times and its soul destroying but please persevere :o

    ............... its like they want to push us to the extreme for example: If we're that bad then we'll keep appealing because we're really in need of the support, whereas those that are just pushing their luck won't. It's unfair but it is because of people abusing the system in the first place that it is so difficult now for those who really need it :( Disability claims have been part of my life since I was 21/22 (?) I'm 40................ the system has never really changed I endured my first social medical when I was 21/22 its just wearing a new t-shirt....... so as to speak and a few new rules............ that this time I don't agree with ;)

    One thing you could try is volunteering for a charity a couple of hours a week or try and find something you could do from home in your own time around your illness :) The distraction would be good for you also.

    Hope things improve for you soon and don't give up hope, keep fighting. Don't forget your local CAB and Welfare Rights or equivalent advocacy services are there to help.

    Sending you fluffies infused with healing and strength to help you through the process

    :) xxxsianxxx :)

  • Thank you xx

  • Hi I work 16 hours a week . I did work full time but when we moved I decided to look for something less stressful. Luckily I got a job that allows me to pace myself. But I still get bad days where I feel like someone beat me up while I was asleep. I went to the doctors she said I must keep active or ill end up in a wheel. Chair.... Lovely . Gentle hugs to you all

  • What a thing to say, or a way to say it, we can keep active I do but at the moment trying to hold down a job is another thing!

  • Yes scared the sh.t out of me : (

  • Hi I've been off sick since mid December and diagnosed mid January with FMS. I'm due to return to work on the 31st March. I have a return to work interview tomorrow with my Mgr and a member of HR. I'm sure I have seen somewhere a list of things that could be asked for/mentioned as things that could help FMS sufferers return to work.i.e flexible start times. I cannot find it today,anyone got any ideas of where I might find it? xx

  • Not sure where it is you might be better off starting a new question in case this doesn't get seen, as it's an older post :)

    Good luck for tomorrow xx

  • Hi. I work weeks of up to 45 hours but I don't have a social life, I'm in bed by 730 and pain relief. I always have to think there is someone worse than me and I think positively. Don't give up on yourself if you want to work x

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