Fibromyalgia Action UK
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What do you do?

Afternoon all. I'm interested in how many warriors are still able to work. If not,were you successful in claiming benefits to support you? I'm currently still working,never had any benefits although I did apply for PIP last year which was instantly rejected. I'd love to cut my hours to ease the pain /anxiety etc but it's a pipe dream at the moment as financially it's impossible but not sure how long I can sustain this way of living.

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Every user name I tried was already taken so I just hit the keys on my phone and that was the result 😅

Well done for continuing to work full time,that's quite an achievement!

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Just call me P so it doesn't squeeze your brain too much 😆

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I'm a bit worried about the '666' bit 😲😅

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A dengel or an angil...you choose 😅

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Sleep on it...an important decision like that can't be rushed 😇👿

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Hidden 😈😃😇 are you the one in the middle, lol?x

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Only on Wednesdays 😃

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What is your devilment day?x

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No I don’t work, and I get ESA support with enhanced disabled persons allowance and get PIP high mobility and standard care and I don’t mind telling you my monthly income from them benefits = £1,202 I also get full housing benefit and pay £8 a month towards my council tax xxx

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Do you have complex healthough issues then tas69?

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I have ME, Fibromyalgia, Cervical Spondylitis (that’s just pain in the neck) IBS but not to severe, Underactive Thyroid, Allodynia and Hip Pain but the doctors are sure if the hip pain is cause by me ME are Fibro xxx

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Gosh youve been in the wars! Can I ask what Allodynia is? Ive never heard of it

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Allodynia isn’t actually an illness in itself it’s a simple of an illness one already has on my case fibromyalgia. It’s where your skin hurts is so sensitive to touch I have to take my clothes off cause I can’t bare anything touching me, I take a medication called Duloxetine which helps immensely xxx

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Symptom not Simple lol xxx

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That sounds really unpleasant. Do your meds help?

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Yes if it wasn’t for the Duloxetine I’d be naked all day, and that’s not a pretty sight for anyone lol. It also helps with the painful sweats, when I get a sweat on its feels like prickly heat but without the rash, that used to be all over my body, but with the pills it’s limited to just my feet and calves xxx

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Do you get any off the side effects from duluxotine i was on them and couldnt sleep ?

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The 1st couple of days I had a dry mouth but that past, as for not being able to sleep I have that problem anyway, so it’s hard to tell if Duloxetine is hindering my sleeplessness xxx

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Unfortunately, I had to give up work which was a big blow as I loved my job. Managed to get standard rate care DLA and then transferred to PIP and managed to get standard rate PIP. Really miss not only the job but the companionship and clients. I know health is more important and it has allowed me to pace myself more and really rest up in the bad days we'll when life hasn't been throwing things at me which it has lately but that is another story! Even dropping a few hours might make a big difference to you or even changing jobs. Good luck with whatever you decide.x

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I changed jobs earlier this year as I couldn't manage my last job. I'd be totally terrified if I had to stop work so I completely understand why you're upset at having to give it all up. Hope things improve for you soon 😊

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I was working and cut it down too a part-time job, my doc wanted me too stop that,but I loved working it was good for me mentally if not physically.so I carried on working But the company I worked for didn't get there contract re newed,and my doc saide,it's good in a way an insisted on signing me off,I was gutted,that was 4years ago an iv not worked since. As my health has deteriorated. I can understand your worries P,its a tough situation,and the benefits system is a total nightmare😕 x

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I think I'll keep going as long as I can because I can't cope with the prospect of the benefits system. Makes my anxiety anxious just the thought! 😃

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I know what your saying☺

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I work full time, would love to reduce my hours but at the moment that is not financially viable. I have fibro and cervical spondylosis, it's the spondylosis that is causing me the most pain at the moment and nothing seems to be helping relieve it, in fact just about to neck some pain killers, wish me luck :)

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Good luck! Hope it gets you through the evening 👍

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Hi snappy21. I had cervical spondylosis prior to having my neck fused,initially from c3-c7, then two more op's ,front& back from c3-t3. I remember the neck,head and arm pains,absolutely awful.have you tried pregabalin? I find it excellent for neuropathic pain.i still suffer with my neck since surgery and the rest of my spine has compensated and has become degenerate.i wouldn't advise surgery unless it becomes the symptoms become relentless.i was told I had no option as may end up paralysed if they didn't operate. So I just think of that when my symptoms kick off!.

I really hope you have had some relief from pain killers and fingers crossed your symptoms improve.x

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I have just started on pregablin, it's been a week now and the pain is slowly subsiding, only draw back is i do seem to be hungry all the time which is weird as I have little appetite but still feel very hungry until i start to eat and then I don't want it anymore

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i dont work, i havent for four years, I used to have a heavy job, staking shelves ,serving customer, I started that job four years earlier and i had back problems then, but the problems went from bad to excruciating, Also some bullying , kept the bullying to myself and it really started to bring me down, i approached the supervisor and nothing was done, he said the situation would be monitored, i gave them my heart and soul, i loved it there, felt i was being shoved to the point my being couldnt take no more ,

my friend surprising spa day blew me for six, i asked for my days off prior to this, this was a supervisor that bullied and put my day in for, unfortunetly it wasnt noted , I was a part time worker doing all the hours ,,Crunch point come when i was going for massage up the ellivator, Manager called me to ask where i was , So you can imagine, i said my piece and went back to work the following day,

This took a big bang on me, felt like it was a huge weight been lifted off my shoulders, as i went in that day and never went back , in the four years there i could bearly stand with the pain that ran down my back, at the back off my chest ,i felt it was as if someone putting a knife in my back, the pain was excruciating, Painkillers ,and more painkillers ,they were changed loads times, Depression, thyroid, Tears streaming sometimes, I had the pins and kneedles in my hands and feet and he pain,.

OFF for a couple off days which was due to me and i couldnt go back.

Pip i got, standard rate.

Jane x

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It's hard enough working without the added stress of an unsupportive and bullying manager. Is it by choice you don't work now or has your condition made it so?

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My condition has made it so

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That's a shame. Do you manage ok on benefits?

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My other half works full time and mine isnt means tested.

Sorry if i had a rant there.that done a lot off damage, Rem i said i thought i had Fibromyalgia years ago, Well " I couldnt talk about that job or even anything else that would hurt me as i just broke to tears, left me good the feeling at the time , during the time i worked there i went off sick a couple off times and ithey the company were suppost to make ulternative arangments for me , meaning i hadnt to do heavy work, they didnt make alterations or acomadations in any form, It was like banging my head off a wall, Thanks much ..Jane x

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Hi , I’m a hairstylist but I work from home because I have two children. I count myself lucky because I can be a bit more flexible with the hours I work. It’s tough when I’m not good though as I don’t get sick pay. X

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I didnt have money for Years of my own, I didnt get sick pay, Im willing but the slipped disks arent, Thanks for your feedback Jane x

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It's good that you're independent though and can fit your work around other issues. And you're a very sympathetic boss to yourself! 😆

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I was self-employed and decided to have a break from work last year as I was feeling so ill so wanted to have a rest and try and get back to health (this was pre-fibro diagnosis). I had worked all my life and never claimed benefits so at first I didn't claim anything as I thought I would only be out of work a few months or so. However as time passed I was diagnosed with fibro and also developed a frozen shoulder so I decided to apply for ESA. As my husband worked, I was only only able to claim for contribution based ESA as opposed to income based ESA. You are entitled to this if you have paid NI contributions for the previous 2 years however it is only payable for 12 months. When my 12mths was up I switched over to JSA as I do want to get back into work. I have signed up with Remploy who are meant to help people with certain restrictions find suitable employment. They also help people already in work so might be helpful to you to check out their website and have a little nosy. From what I recall, there is such thing as "permitted work" you can do whilst on ESA but your hours and weekly wage are restricted to 16hrs and £120.00 per week. It's worth pointing out that if on contribution based ESA you are not entitled to free prescriptions, dental treatment etc unlike income based ESA. It would probably be best to consult with a Welfare Officer at your local CAB or the benefits expert Janet on here to find out exactly what applies to your individual circumstances.

I can't deny that it has been a struggle financially as we have a mortgage and do really need 2 household incomes in order to have a reasonable lifestyle. The ESA money barely scratched the surface however it just about kept us afloat and we have managed to get by. As a result it's made me realise that we can cope with living on less money than we have previously. Therefore I am hoping to find a much less stressful job on reduced hours and consequently less money as I have come to appreciate that my health and peace of mind are so much more important than a hefty pay cheque. All those years where I pushed myself through so much pain, stress and anxiety really weren't worth it and being diagnosed with this illness has definitely made me re-evaluate my priorities. I wish you well lovely and hope you find a way to balance your life in a way that is manageable. Take care and good luck xxx

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Thank you so much for such an informative and honest reply. You've clearly done your research and worked out what's best for you which is fantastic! I never heard of Remploy before but I think I'll take your advice and have a look at what they do and could possibly do for me. I'm just so frightened at what the future may hold for me and my family....I work as many hours as I possibly can but it's just not enough to support us but I'm not well enough to do any more hours if that makes sense?

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I understand completely how you feel hun, the future is very scary when you suddenly realise you may no longer be capable of earning enough to support your family. However as I mentioned in my previous response, I had to re-prioritise and part of that was doing an overhaul of my finances. I was quite ruthless in cutting back on things that as a family we had previously thought were necessary however when it came to the crunch, I realised they were not that vital. I went through all our outgoings with a fine tooth comb and cut things to the quick. Things as small as the £1.75 a month for paper statements I didn't even realise we were paying, I stopped. I also had to give a reality check to the family and let them know in no uncertain terms that circumstances had changed and that we all had to pull together and do our bit. I think as mothers we tend to try and protect our kids from the harsh realities of life but I have clearly laid things out to my son. I have explained to him he can no longer use unlimited electricity, gas and water and that he has to make more of a contribution to the household.

One of the things having fibro has taught me is that I can't do it all on my own anymore and I have had to ask for help, no matter how much it goes against the grain. I don't know what your exact set up is but you obviously have a family so is it possible for you to get together and discuss what everyone can do to help rather than it all falling on you? Yes we are warriors but even warriors are part of an army and have others to watch their back. Take care lovely. xxx

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Hi it's hard I take my hat of to you still working .try your best .if things get bad speak to gp.see wot they say.if you can't get benefits it's hard .have a look at benefits for work website .self test esa and self test pip.you do t give name and it's not no binding.but it will give you an idea if your ready for benefits.it will tell you your points and if they think you will pass.try it to see

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I'd no idea such a thing even existed! Thank you so much for that. I'M crying at the thought of work in the morning because I'm in so much pain and I'm not even there yet 😓

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You will have to get your pain under control.specially with working.and get your sleep

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I know. Easier said than done though eh? Still,things could be worse...

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You got the right medication .and taking it regular.even if you have a good day.

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I only have amitriptyline at the moment which I've been taking last 2 weeks or so. And paracetamol that I buy. Other than that,I've nothing .

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I no amitriptyline is used for sleep as well.paracetomol won't do much when your in this pain. If go to gp and see .that's if you would take them ?

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I was just at my GP the other week and amitriptyline was all he prescribed. He really doesn't know what to do with me to be honest and I always feel like I'm just an annoyance for him so we've kinda reached stale mate

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Hi P, my GP prescribed Pregabalin a month ago, and between that and Nurofen the pain is generally under control. It also reduces anxiety better than anything else l’ve ever taken: it was like having a physical load taken away, which has allowed me to tune into my body without the distraction of “what if” worry that won’t stop. I can pace myself much better, and pay attention to what is hurting. Then l take the appropriate action to deal with that particular pain. All the best.

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Have you been a sufferer for a long time?

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Hi P, yes, but l thought it was just a factor of ageing and being a worrier. It wasn’t till it ramped up earlier this year- to the point where l realised it was abnormal- that l started to research my symptoms and spoke to my GP. I feel very fortunate that so far, on this drug regimen, l can continue to work and live at about 80% of my old capacity.

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It's a blessing to be able to cope with work. Long may it continue!

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Thanks. The alternative is too stressful to contemplate. I hope you find appropriatetreatment soon. All the best.

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I it's hard .see how pain goes if your still in a lot of pain next week.there is lots of stronger pain killers out there .see how you get on after work do paceing Take it easy little bits not chunks and rest

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I'm on 12 hour shifts next 3 days so no chance to pace myself. I can catch up on some rest on Sunday before it starts all over again so I'll just power on til then. Hope things are going well for you Ajay?

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I.no bad just keep pain u set control bit easier with no working.ups and downs.ill ask how you are on Sunday .12 hour shifts I'll be the problem .you will be used to it .take care

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Don't think I'll ever get used to 12hr shifts 😅 Hope today is an up day for you...Take care of you,speak soon 😊

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I still work full time in central London, as a senior scientist, with 4 hours of commuting each day. My employer has tried to make reasonable adjustments for me, like allowing me to work from home one day a week, but then expects me to do the work of 3 people due to funding cuts and staff shortages. I've got to the stage of saying when I've reached my limits and not worrying about things I can't change. I take a lot of painkillers but they only just take the edge off the pain. I bought myself a mobility scooter (which I've called Boo) to help with my commute as I used to get to lunchtime and then worry all afternoon about whether I'd be able to make it to the bus stop, or from the bus to the train as I was exhausted. No such worries now as Boo takes the strain.

I'll keep working as long as I can as I enjoy my job and it benefits the wider community. I'm a stubborn cow, plus it would drive me nuts being at home all the time. I got serious cabin fever whilst recovering from carpal tunnel surgery earlier this year!

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Hurrah for Boo!😃 God only knows how you manage full time and such a long commute. I take my hat off to you. I do 3 long shifts and I'm absolutely destroyed after it so you're doing amazing to be able to do so much@

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Hi

I work full time but as the week goes on I struggle with tiredness. I am lucky that the lads in my office are quite relaxed and if I need 40 winks I tell them not to disturb me for a while! My boss though however concerned he sounds worried more about me having time off than me well being but will face him when the time comes. I am mortgaged til I am 70 so have to work

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That wee nap can be a life saver so I totally get the need for it! Good that you have supportive colleagues and maybe there attitude to your illness will influence your boss and they'll become more understanding too...good luck with it 👍

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I am currently on long term sick awaiting to see if I can claim medical retirement. I have several illnesses but pushed myself to work for financial reasons and because I liked working. I realise that by doing this I have prevented my body from healing and recovering. I have claimed PIP and ESA and I am allowing my body to heal. By pushing ourselves we can do more harm that at times can be irreversible. I take the stand that I am happy at home, I will make the best of what I've got, I will adapt to my change in circumstances. Many of the things I thought were important no longer are. Health is everything. Saying all this, every persons story and journey are different. I hope you find the path that is best for you.

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Sounds like you've definitely earned your time at home and I'm glad you're happy there. I was one of the guilty parry who took my health for granted too. I'm beginning to regret that now...Hopefully my right path will appear soon.

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There are always options to explore in life. Thinking outside the box sometimes opens our minds to new possibilities, paths and ways of living. There are negatives and positives in all decisions. May you find what works for you and yours.

🙂

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Hi there, I had to give up my career of 8 years last December. I had already handed my notice in, but they wanted me to work 3 months notice. I got very unwell and my doctor signed me off for my last month of sick leave. I've spent most of this year putting myself back together but I've had to have a leg operation and have just been diagnosed with Lupus on top of Fibro and ME too. I was a graphic designer in a very stressful industry and I just couldn't carry on. I feel really sad that I've had to give up my career but it wasn't sustainable. I wish I could go back but I wouldn't last a day. I'm due to start some new meds for Lupus soon which I hope will help. I hope to return to some sort of job in the future part time. I don't think I'll ever be able to go back to full time work and couldn't go through that sort of stress again. I really worry about the future as I'm only 29! I receive standard rate PIP but that's all. My partner works full time and we make ends meet just about. I have started my own design business from home but I am very limited in what I can do and I still find it stressful. I hope this helps. Xxx

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Working from home seems to be a very good plan B for sufferers so I hope this can be a long term solution for you too. I unfortunately don't have that as an option which I'm sad about but hey ho,such is life. You sound very talented so I wish you every success with this in future 😊

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I take my hat off to all of you who still persevere to work. I was a nurse, working 8hr shifts, often with no break. Follow major neck fusion surgery, I dropped my hours to 3 days a week. Then following a further two neck operations I dropped to two split days a week. I struggled more & more with the physicality of the job. By the end of each shift I would be practicing in tears. I had to be careful taking strong analgesia as had to keep my wits about me, it was a balancing act.

I finally retired on medical grounds( before I was pushed), I had 5 months statory sick pay then I got contribution bases esa for a year( am awaiting appeal to be put in support group) i have just successfully claimed pip, enhanced living& standard mobility. I am very lucky That my partner earns a descent wage, but having been financially independent all my life I struggle to have lost it. I really miss my job and all the friends I made over the years, but I just couldn’t continue. My condition(s) have progressively worsened since I retired at the age of 55, I’m 57 now, there was no way I could have coped until retirement at 67!

It was a very hard descision but it would have broken me to continue, I really felt a complete and utter failure stopping .my back has taken its toll and now have regular steroid injections to try and keep on top of the pain, along with pregabalin, cocodamol& occasionally tramadol. I wish you all the very best in future, in or out of work x

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Aww Landon you sound you've had the most awful time! I'm nothing on the scale of suffering in comparison to you. A dew people have mentioned Pregablin so seems to be a good treatment. I might see about that.

I'm really saddened you describe how you felt as a "failure" but I totally understand and empathise wit you. You made the right decision for you and that's what really matters.

Wish you the best for your retirement years ahead 😊

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I was working full time as a teacher, but was forced into retirement. Best thing that ever happened to me, even though the process was unpleasant.

I do have multiple disabilities though. I have congenital hip problems, (first hip replacement at 26), Rheumatoid Arthritis, Fibromyalgia, and I wear two hearing aids.

I got an enhanced teacher pension, some contribution based ESA, another small pension and higher rate care for PIP. I live alone, and because I knew it was coming I slogged my guts out to clear mortgage when I was working.

After struggling throughout my life. Retirement was a relief. I have some energy to play. When I feel like excrement, I can rest. I can also focus on my health by swimming and taking the dog out.

It has worked for me.

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I use to work 30 hours a week 6amto 12:30pm at a supermarket, my line manager was really helpful and got me help with the company health care team (can't think of the professional name). With my permission, they got in contact with my Doctor. This allows me to be sick with fybro and not get penalized on the sickness system.

I now work 17 hours a week with really helps.

They listen to me if I start getting my pains and put me on the till so I can rest my legs and they know at some point I will need to come off as I will stiffen up and be in pain again.

It helps to talk to people about the pains, people who don't have Fybro don't under stand.

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Hi P,

I have resigned from my full-time job after 10 weeks as I cannot cope with the amount of pressure. The commute into London doesn't help either. I really noticed that I don't have the same amount of energy as a healthy person and my memory isn't great. My body is in pain and I need time to recover. :-(

I hope to find a part time job as I also believe being amongst people is healthy for the brain. :-)

I have never been on benefits and I am also not sure if I qualify as I left this job after 10 weeks. Before that I studied and before that I had another part time job for about 15 months.

I wish you well, take care,

Yvonne

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Hi,

I run a business with my husband. I am lucky, because if I am suffering I can go and rest. Like many others have said, I’d hate not to work. I like the interaction with the staff and deliveries. Otherwise I would be stuck at home mainly in bed, and not see a soul. As bed is the only place I feel comfort. Good luck everyone. Every day is a challenge and then an achievement!!!

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3 months in, felt like this for 15/20 yrs, 3 months on sick..... sick to death of being on the sick, back to work soon

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