Has being diagnosed with Fibro change... - Fibromyalgia Acti...
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I have reduced hours to part time but am shortly to be made redundant due to health and will then be unemployed.
I can no longer do a physical job. I am almost retrained as a counsellor, and begin my placement hopefully this month after four years re training. I was a Hairdressing lecturer.
I have other illnesses which have been exacerbated due to the pain from fibro plus I'm recovering from a partial nephrectomy for renal cancer.
Like one of the other participants I wanted to train as a counsellor and was a lecturer in Fliristry then holistic therapy. I have some counselling qualifications and a degree in psychology-criminology. I would love to work from home when I'm over all this.
I was fortunate enough to be self-employed...well two-edge sword, really in terms of nil benefits and to ill and scared to fight for them. Anyway, things have improved and I can work again regularly-ish at my own pace and rhythms. I still doubt that I would be able guarantee little enough sick days to satisfy an employer. I mean who would employ someone that is OK one day-morning-hour-minutes... then fizzles out or freezes up the next!
In the same boat every day or even with in a day is different with so many varibles from eyes/breathing/pain/tiredness or just not sleeping then if do something feel so ill afterwards like going down with flu and cold.
I'm unemployed now
I was sacked for becoming disabled after my diagnosis and because apparently a diagnosis two years after I signed my contract stating I wasn't disabled meant I lied when I signed it so because I refused to resign I was sacked! I was a support worker for adults with disabilities! I tried working as a childminding assistant but im off sick due to that being too much for me
I was on a long temporary contract which ended in December and I'm so glad it did because even though I was only working 25 hours a week I was struggling. My symptoms have been manageable for several years but for the last 4 months of that contract I was doing nothing but working and sleeping and I dragged myself through each and every day I am now retired, thank God, and can't imagine how younger people manage to continue to work with FMS especially when I read the posts here and think how fortunate I am that my problems, even now, don't seem to be nearly as bad as many other people - touch wood. I now volunteer one day a month driving for the Foodbank and would do a bit more if they need me to, so at least I still feel like I'm contributing something useful to society but this isn't exactly what I had planned for my retirement..
I have changed jobs recently to a less stressful and less challenging position but still full time. I can't afford to work part time .
I haven't worked for past 10 years due to many medical problems.Was only diagnosed last year with FM.My body just wouldn't cope with working as the condition is so complicated.eg the foggy brain.pain,lethargy. Arthritis,and tiredness like I never ever felt before.I get so confused doing everyday tasks that working is just not possible for me.x
Long term disability covered by disability payment from employer - technically I'm still employed by them and could return if I recovered
I was fired from my job of eight years from a group of doctors because of my health. That was going on 13 years ago. My life has been a living hell since then. I lived with relatives for 1.5 years which was a bad decision until I could get into Section 8 housing which was even more hell. Then 4 years ago my ex-husband asked me if I wanted to move to NOLA to be his maid, and I said yes. But since I moved in with him, its taken him 3 years or more to understand just how sick I am and how much more sick I've become. I can barely take care of myself let alone the inside and outside of this house. His attitude: I pay the bills why can't you take care of the rest. I'm ready to go anytime the good Lord takes me.
Doctors are one of the worse mind as long as getting there £78 per appointment there ok.
I was already part time due to circumstances, but even that has been reduced
Due to very ill health unable to work anymore. But always hopeful for the future. X
I was a glazier by trade used to running up and down ladders or working on multi storey blocks now I have trouble with the stairs. I couldn't do glazing now also because I am lupus anticoagulant but I'm a strange case I still get blood clots I suffered with eight last year, four at once in my right leg, but the fibro doesn't just mess with your body it messes with your mind I suffer with depression and panic attacks, fibro is a nasty auto immune disease and when you have two or three of these something is hurting all the time....
Had to retire early due to RA. Fibro diagnosed since.
I'm a full time mum but did have to change jobs before I was made redundant as I could no longer do the work, this was before I was diagnosed, and they made me redundant isread of slickness related absences.
I got made redundant from the NHS before my diagnosis, as I had so much time off work. My GP at the time was useless and kept saying I was just depressed and gave me antidepressants, he missed the Fibro and underactive thyroid. I now am unemployed but do some voluntary work when I am able too. I am still in denial that I won't at some point be able to work full time again!
I managed to continue working full time for several years but am now to ill to work, have been out of work for 8 years now, no hope of returning unless they find a cure, I wish!
Retired on ill-health grounds from NHS
I battled to keep working, even went as far as buying pain killers (not mine, and not from a Dr). Until my pain got unmanageable. It took my Boss meeting me at the office door one morning with my GP, and a consultant at the hospital as well as someone from occupational health refusing to let me in the building.
That day was one of the lowest points of my life.
I had already been retired on health grounds due to chronic urinary problems.
I work part time and am in the process of changing my job due to my illness. I will still work part time but hours will be more flexible, job share sometimes with my husband and often working at home.
Was made redundant, now struggling to find work because of fibro
I was retired on ill-health grounds due to a life threatening heart arrhythmia & 6 months later was diagnosed with Fibromyalgia & Osteoarthitis...
I had just lost my job few month before I became ill, My doctor was treating me for Severe Restless Leg & Involantary Leg Movements Chronic Leg Pain Severe Tender Spots all over my body etc, 5 year down the road after seeing another specialist i was diagnosed with Fybro, I am now so bad i am on pip & motorbility. I can barely walk or sit, depend on my husband and neighbour to help me. What I wouldn't give to be normal again
Unfortunately my job required very emotional and mental skills and I find it difficult to remember even half of what was required.
I worked full time for as long as I could but eventually had to give up my job due to fibromyalgia pain,fatigue and other infections. Since the start of my condition my immune system has been really poor so I get every infection possible. I would love to go back to work but at the moment it is just not possible. I have been off for a year and I feel the longer I am off the more depressed and low I feel.
I was an assistant manager in a busy nursery. I was 39 and I was diagnosed with osteoarthritis in my knees, the owner paid me off after a few months of sick notes being sent in. I was diagnosed with Fibro not long after that,I've not been able to work since as the arthrits has progressed significantly resulting in the need for a double knee replacement. I'm now 52 and I'm in a lot of pain as is with arthritis and fibromyalgia.
Ii used to work 25hours, I have ra and fibro for a long time I now work 16 that's a struggle cant afford not to work, for the last year I don't know which part of my body is sorest. I know I cant go on much longer, but will try my best. Xx
I normally work full time as a support worker with adults with LD but am in final year of a degree and started a social work placement at the beginning of Feb. I went off sick in December as I could not cope with the physical demands of my job.
Forced myself to return against GP advice and start SW placement in Feb. I continued to feel completely exhausted but as it is not a physical job and I only have to go in 4 days due to having a study day, I just about cope.
Was diagnosed with Fibro in March and take opiates and antidepressants. I mostly sleep on my days off which means I fall behind with written work and my Practice Assessor at work just thinks I am completely dis-organised.
I refuse to give up as my placement completes in July but I don't have a clue what I will do after that. I won't qualify until October which means I would have to go back to manual work and I can barely look after myself never mind help another adult with personal care.
I am just hoping things will ease off by then but it is not looking good!
At the moment I have been off work for over a yer and am likely to have to significantly reduce or give up work altogether
I have been on zero hour contracts for the last 12 years working in care and latterly on the staff bank at our local hospital. Even doing two 6 hour shifts a week became too much. It was the not sleeping and having to get up for a shift so early that finally put the nail in the coffin. I was in so much pain that I couldn't even think straight and felt I was becoming a passenger rather than a hard worker which was embarrassing. New medication has helped a lot but generally speaking working in healthcare is too much like hard work these days. I haven't taken on any real work since last October. The days have turned into months and I'm not missing it. Some days I just have no energy so I think my mind has been made up for me. I won't be going back to work at all. This morning I volunteered as a meet & greet receptionist at a therapy centre so I think that's all I'm going to do. I'm lucky my hubby is semi retired he has a wee job 4 days a week and his private pension and we have one of 3 children still in the nest. So yes Fibro has taken its toll on me and won work wise anyway. Now I just have to accept it.
I reduced my hours on medical grounds but my employer failed to reduce my work load. I eventually was dismissed from my duties ( unfairly) in 2014 from a very stressful job and have been fighting with legal action ever since. It has caused my fibro and stress levels to increase and I have been unemployed since January 2014. I applied for PIP but failed to get it as they assessed me as scoring 2 less than what was needed to get support. I am constantly job searching and get JSA. My life has been in turmoil ever since and despite coming under Disabilities and Equality legislation , I am getting now where fast . Has anybody else experienced this?
go to welfare right or citizens advice get them to help fill in forms ask for reconsideration then appeal you have nothing to lose .
Went from full time to part time to voluntary. Had to change from office work, to security to beauty salon, due to severity of symptoms, always studied while working now teach dressmaking, patchwork and quilting etc voluntary one night a week.
I have been redeployed to an office role from working outside
I had become self employed way before diagnosis as I couldn't keep up with regular 9-5 and travel - but put it down to becoming a mum. Had to stop this for 18 months due to severe fatigue (my main symptom) am back self employed but barely making any money - thank god for my partner otherwise not sure how would cope. Am managing 2.5 hrs voluntary work and keep wondering about training for a very dedentary job but unsure I'd cope with that 
After several years initially diagnosed with lupus and then with fibromyalgia I was awarded ill health retirement. It was such a relief but it does not take away the pain.
Am still self-employed as I have been for a long time but struggle to keep up with work and constantly in debt. I have lost clients as a result and now only have 1 client left who keeps me in work but I can't let them know I have FM - if it gets really bad I tell clients I have a migraine as that tends to keep them keen still (many understand what migraines are about and yes I do sometimes have them but not as bad as I used to years before my FM took hold). I couldn't work in a job outside the house because of the FM.
I have been unable to work since the illness put me in hospital almost a year ago. I am applying for early retirement; my employer half pay ends soon.
I am now currently early retired due to ill health with fibromyalgia.
Just been retired on ill health grounds and ruled to be permanently incapable of work. In addition to my diagnosis of fibro I was previously diagnosed with syringomyelia.
Stupidly ticked the wrong box as tired and Fibro Fog made its usual descent. I should have ticked other. My legal age of retirement was two years after I first became ill and I had to give up a job which I absolutely adored and would have carried on with it for several years after my official retirement age if I had not become ill. In fact it was only a couple of months back when I was sent to an Occup Ther. who wrote to my doctor asking whether I should be referred to a Rheumi as she suspected I had fibro. My present doctor said he could not understand why she asked for me to be referred as I knew I had fibro as it was throughout my records from quite early on. I then broke it to him that I had never been told and was just told I had degeneration of the spine, arthralgia and neuropathic pain and no mention by my doctor at any time or the Pain Specialist that fibro was the diagnosis. I even went back through old letters/sick notes/referral to Pain Clinic etc thinking I must have missed it along the way but it was never once mentioned.
Now I know definately it is my diagnosis rather suspecting lately was the case since reading peoples stories on this site. The puzzle of all my different symptoms is slotting into place and I am realising that in fact I seem to have been having alot of them but in a milder form for many years.
What percentage of us have to claim state benefits due to this awful disease I wonder .? I am in process now of applying for p.i.p unsure if I qualify assessors eyes but I can't even get out of bed some days so work would be impossible
go to welfare rights or citizens advice for help filling in forms
if you dont get go for reconsideration then appeal seems they dont want to give you nothing without a fight . its a process that you have to endure dont be made to fwel giulty that your ill
No, it hasn't really made any difference workwise except I am a little slower these days, could be age though?
Thank you Emma
Kenny x x
I left my position with the design firm where I had worked (for 15 years) due to layoffs BEFORE my Fibro diagnosis, and before I became so "damaged" by my advancing degenerative disc disease (in 9 discs) and increasingly difficult chronic pain.
I was fortunate ~ able to return to being a *stay at home* wife, and have a VERY small art business of my own ~ doing shows at various times, if/when my condition permits preparation/attendance. My hubby and friends help me with any needed travel, setting up, and sales. It is really more a hobby, because I can't give it the energy necessary to make it a really thriving business ...
(Could be a little of what Ken says, slipping in there, too: age!!!)
I had to leave my job in bank as they would not reduce my hours and now work in an office 20 hrs per week with a very understanding and undemanding boss. I feel blessed that i can still work.
I actually went freelance self-employed part-time when I got my first diagnosis of ME/CFS way back in 1999 (the fibro diagnosis came later). I was working full-time as a university lecturer but was struggling to cope with the amount of work pre-diagnosis. Once I'd got the diagnosis I did a CBT course and realised I couldn't go on the way I was. That was when I decided to go freelance so that I could be in control of my own workload as part of my attempt to pace my activity and rest. I've been doing part-time classroom and online tutoring ever since. It was the best decision I ever made and I think this is what has helped me cope with my illness even when other health problems were added on top. 
I have been on sick leave for 6 months and signed off for another 2. I'm 60 years old with a tiny pension and unsure what to do know.
apply for pip go to welfare rights or cititizens advice for form filling if turned down ask for reconsideration then apeal
i had not worked for years due depression and a knackered back but fybro was there all that time it just wasnt diagnosed but i certainally couldnt work now and im 6 2
I had to finish work before I had FM ,I had unresolved abdominal problems and would not be able to work now anyway but FM certainly makes life harder
Initially I had to take a lot less hours at work as I did a job where I was on my feet all day, fortunately I have managed to find a job where I am not on my feet as often so I am able to work full time again! It is great to find supportive employers!
I'm self employed and have been for many years, but it has changed. I'm a canine beautician (qualified), to start with I used to groom around 10 dogs of varying sizes a day, this slowly reduced to only 2 to 3 small dog which I struggle to do. I had a mobile grooming van which I sold beginning of last year (2014) 😢 I have been told to give the grooming up but that's all I know and need to earn money as gov won't help me as need self employed 😠
Suzanne 🐾
I was already off work before got made redundant has had a few ops on arm after a bad accident at work but part of my problems was from the Fibro/Raynauds as not recovering and got an infection in wound but was very tired all the time and had some many pains and went from before being able to just lob the weights around gym(worked in a sports centre) etc to it being so painful just to pick a dumbell up to put back on rack and it wasn't a heavy/hardcore gym and if played badminton on thursday night club friday i'd be so drained out and had to have day off.
I was fortunate enough to work for a number of years after diagnosis though they reckoned i had had it for a number of years before diagnosis. unfortunately i have other issues and it was a combination. Whilst under retirement age i do actually have a workplace pension
Was unable to go back to my job because it involved lots of quite heavy lifting and also meant being on one's feet for long periods. So now I am semi retired and work a little from home which suits me just fine. Luckily for me , my wage was never crucial to our household but to begin with I did miss the workplace environment and the friendships I had made.
Had to take ill health retirement due to long term sickness for the third time in five years
I reduced hours 2 years running but then went long term sick and was illness dismissed at the beginning of this year. I was office based doing a high concentration job with lots of constantly changing policies and procedures and I just couldnt keep any of it in my brain. I was on work monitoring for not keeping up with the stats which put me under more stress and caused more flares of fibro. Vicious circle. I find writing and typing difficult too as my hands hurt from arthritis and I fall asleep at inappropriate times.
I'd reduced my hours shortly before the diagnosis, but I work on my feet all day so I can still find it a bit of a struggle.
I worked as a domestic assistant in a hospital from 1999 until I was paid off through illness in 2010. My first physical symptoms probably started not long after I started this job, followed by mental symptoms like depression, anxiety etc. However, it wasnt until after I stopped working that I was finally diagnosed with FMS.
I have had a long history of illness(es), and the diagnosis, whilst it was helpful in identifying some symptoms, it did not change my employment status.
I worked within Social Care when I first became ill and was advised by my consultant to give up work, two years ago now. I was also studying for my degree with the Open University at the time, and would like to continue with that again at some point. I am hoping to look into voluntary work soon, but I am losing the fatigue battle at the moment, so hopefully when I come out the other side I can do something constructive again.
I work work 18 3/4 hrs for airline at airport have had my hours reduce to 11 1/2 due to sick but still struggling as to much walking on career link to find office job or will have to take early retirement on sickness grounds
I have been diagnosed with CFS/ME, Fibro, hypothyroidism and am now being investigated for PoTS. I had already had to stop working prior to Fibro being added to my list of complaints.
I work part time the only concession I have made is to be more flexible about starting times and work from there. For flares I use holidays. My sick record so far is not too bad. Some days are worse than others.
I was forcibly shoved out the door by my previous employers when I was working with horses, but I changed employment type and now work full time as a magazine editor.
I am on disability due to Fibro plus back, neck and knee issues
Yes I lost my job in February this year working for....wait for it....NHS
I reduced my hour's and now work 5.5 hours a day but I am office based and work on a computer
I would say that the change in my employment status and the stress of that happening is partly responsible for triggering my fibro! I am retirement age so not being able to work isn't an issue but if it was then I would certainly feel unable to work a lot of the time though between times feel great, full of life and in good form.
I worked full time then went part time to have a structure but i went back to full time but I am struggling again
Reduced hours but still struggling with pain, fatigue, ibs and anxiety
Although now retired I was made redundant 21 years ago after being threatened with disciplinary action if I hade any more time off. I was diagnosed a year later.
I am currently struggling with my job. I am a paramedic and have had to go onto alternative duties whilst I wait for a diagnosis. I'm hoping I can learn management techniques to deal with fibro and get back to work but I fear I may have to cut down to part time which I don't want to do as I love my job.
I have had cervical spinal stenosis , also been diagnosed with sleep apnoea so I need good quality sleep but with FM this is not easy, so affects my work (always dopey and slow ) keep on trying.
I'm a florist car too stand for to long no good in a busy shop
