I was diagnosed with fibromyalgia over a year ago, but my rhumotologist thinks I have had this since 2017 as I had the same symptoms back then but now this has gone alot worse. I have worked in health and social care for years. I was working day shifts in a mental health setting and I could not keep up with the work so I changed to night shifts . I thought this was a good decision as nights are quieter. I work alone and worked waking nights. I tryed to work as long as I possibly could but I am in constant pain every day. I resigned from my job 3 days ago, I worked and worked because I was worried about money and how I would cope being out of work. Now I realise my health comes first and working all these hours , even changing to nights has made my body more tired and very painful. I worked every single weekend thurs night through until Monday morning. I spoke to the manger about having alternate weekends off not just because of my pain but so I could spend more time with family. This caused a lot of animosity with other night Staff because they did not want to work weekends, management said they may not be able to accommodate my request as I had agreed to this work pattern in the beginning. I have tryed everything to stay in work but with the pain and no support from management I have resigned. Now I feel like I have failed and feel low in myself but I am having plenty of rest which is what my body needs . I have applied for esa and Pip and waiting for my pip assessment over the phone.
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Kazzza1976
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You have certainly not failed - I can tell you have tried to do your best & you should be proud of yourself for that 💕
I also don’t work at the moment, I have other problems too as well as fibromyalgia. I think mentally you have to get yourself in a place where you are happy with what you have got / what you can do, instead of thinking about the things you can’t. I know this is a hard thing to do, I have ups and downs every single day. Maybe CBT would help you.
You are covered by the equalities act 2010 (I am due to how my health problems affect my every day life) and your workplace should have sent you to occupational health to look at what reasonable adjustments they can give you to help you stay in employment. It’s not good enough your workplace saying that other colleagues aren’t happy because they would have to pick up the shifts. They probably keep well, so this is putting you at a disadvantage to your colleagues which is discrimination.
I wish you well & sorry you are part of this club now. You will find lots of support on here as everyone is so nice x
Thankyou for your reply . People on here are so lovely. This is a really good support group. It is a big worry as I have worked and worked and now it feels strange I don’t have that anymore. My body physically won’t let me. I have read that fibromyalgia is not progressive. I think it is as my pain and symptoms have got a lot worse. Hopefully I will hear back soon
No you've definitely not failed but you've certainly been failed, failed by your Employer who should know better!
The Equality Act comes into play for Fibromyalgia.
You should have been to sent to Occupational Health and their recommendations should have been acted on if possible.
Changes to your work shift pattern is a very reasonable adjustment. For an employer to point blank refuse they are leaving themselves wide open.
If I was you I would be taking legal advice on constructive dismissal. Are you a member of a union? If not, citizens advice might be able to point you in the right direction.
Please don't feel like you have failed. You have , as you have said , put your health first and tried all of the other options available to you first , which is a success in anybody's book.
You deserve a pat on the back for facing these challenges head on , and being strong enough , and brave enough to keep trying no matter how hard this was and you should feel proud of yourself.
You've also already started to get the ball rolling on sorting out benefits which is a hard job in itself .
Take the time to get your rest and enjoy some time with your family , you have earned it.
If you need any support or need to just chat keep writing back we are all here to listen , understand, give advice if we can and lots of virtual hugs , take care , Bee
Hi Kazzza1976Sorry to hear you feel you have failed. You may have given too much but you definitely haven't failed.
Your ex-employee could have considered reasonable adjustments, or possibly employed someone on nights every other weekend.
You have as a caring person focused on the needs of others and put your needs aside.
It sounds as if you are grieving for a job you loved that made your health worse.
To survive with FM many of us have to learn to balance our needs with those of others. Can feel strange if we haven't before.
I ended my job of 40yrs last year as it was making me ill. I had training in other work and now work from home part time self employed. My health is better for this.
Try to get your condition balanced and look after you.
I feel you Kazza1976. I cant do the job I love, which was also my hobby due to the pain and fatigue, even getting dressed is difficult and the idea of public transport before starting work led to a meltdown and what's the point in living moments.
Im trying to stay positive with small achievements and I have a little book and write something down everyday that I did that gave me a sense of joy.... or even something small that made me laugh or a small accomplishment. Even if that means you tubeing lots silly kitten videos. I take everyday as it comes as I used to feel so bad for letting people down. If I make a commitment I make sure to tell people that thats very much depending on how I will feel that day. Its so unbalanced.
Ive also been reading bit about ACT therapy - acceptance and commitment therapy. It makes sense but hard to accept I wont lead the active spontaneous life I lead before. Has anyone done any ACT therapy - Id be interested in hearing your views. Im also on a waiting list to go to a Fibro water therapy group. I do love the water but need lots help to get to a pool.
Kazza sending you some heartfelt support. You have not failed at all, you have taken the first step towards looking after yourself first. I’m sure many of us with any chronic condition that affects us with either pain or fatigue have been in this position quite a few times over the years, unfortunately. But don’t feel disheartened and as many others are saying, take the rest you need right now.
I would suggest a chat to ACAS employment helpline first as they may be able to help with what’s just happened at your place of work. They are free to contact.
Secondly, and also as I’m sure many others have also been through the minefield of benefits when you cannot physically work, expect a bit of a battle and get some support in place with citizens advice and one very practical friend or family member that is ready to help fight your corner when you are too exhausted or in pain to do so. You may be able to apply for working capabilities assessment (if universal credit applies) so ask for this too.
Don't feel bad hun. I did exactly the same job and ended up having a heart attack 3 years ago. I didn't listen to my body with all the pain I was in and finally I paid for it. Since then the pain is unbearable and I suffered a 2nd heart attack a year later.
You are a warrior. Dont put something as trivial as work ahead of your health. Try and come up with a routine that doesn't flare up your symptoms. I was the same and we are made to feel like if you don't have a job your not contributing to society. I think you've more than done your fair share and now it's time for you ok☺️
Hello Kazzzza. You most certainly have not failed. Reading your post was as if I had written it. I worked for many many years in social care. My employer was a local government! Despite occy health and some reasonable adjustments ( enough for them to tick boxes ) I lost my job by way of another means. I was absolutely devastated as it had been my career etc. This added to my fibro and other health conditions. I haven't worked since and am now retired. Like you I fought to keep working and a roof above me and my daughters head but the pain and exhaustion got worse. I tried to claim ESA but got LWCA. ( limited work capability allowance ) . if you can claim that the dwp leave you alone and don't hassle you to go on courses and interviews. It took 3 applications and horrible interviews to finally be awarded with PIP. My fibro was identified by a rheumatologist almost 20 years ago and its only the last 3 years , following many operations abd various other interventions on the NHS and alternative therapies, that I was seen by another rheumatologist who actually did anything to help me move forward and referred to other support networks. Sorry for the long reply but please don't think you have failed. The failing is with your employer. Good luck with PIP. x
what a familiar story this is sadly, that a so called caring institution fails its workers and the worker ends up feeling a failure, which as others have rightly said is absolutely the case.
This sounds like constructive dismissal, where you felt no choice but to leave. Were you in a Union?
Many years ago when I was asked after a long period of sick leave, that as I wasn’t “firing on all cylinders” ( I worked for Social Services), they would give me two months salary if I resigned.
The Union helped me at a time of great vulnerability, as my partner was diagnosed with MND, to be medically retired and therefore entitled to receive, albeit a small pension which supplemented my incapacity benefit.
I would seek advice quickly to see if you have a case.The union, if you were a member or with CAB.
I think there is an advocacy group called Pohwer or Powher, who could help.
I’m sure you could get backing from your GP and Rheumatologist too.
I know it will probably feel like you don’t have the energy for this but remember, you won’t be alone, you will have someone fighting your corner on your behalf.
I hope you begin to feel a bit recuperated in time and succeed in getting justice.
Hi Kazza1976 you certainly have not failed. You have battled on as long as you can, like many of us Fibro Warriors. I am still fortunate to still be working at reduced hours, as have a manager who is very supportive. She has the attitude that your health, both physically and mentally is more important than your job. As regards to anyone's work place, they have an obligation to accommodate your needs, whether physically or mentally. There is now so much more support for anyone with a disability, and your manager should have been made aware of this.I hope you are able to rest up and recuperate, and remember that stress can also trigger a flare up, so don't be so hard on yourself ❤️
Hey there I to worked in this field for years I went out on maternity leave and never returned due to health issues. Do not feel guilty it does take its toll on you and only when you are a while out and look back will you see just how bad it actually was for you. For me the work was grand when management left the alone but that was rare it was very lone and isolating hours as I worked alone also. It was a residential setting and we didn't even get breaks we ate with the service user ate. There was constant bitchiness from other staff complaints if you didn't do goings their way despite doing a million other things and often starting their work to make theor shift nicer for them. Since being out I have learned fo appreciate what I do have in life and I prioritise my friends and my children rather than work and I don't miss half asany events. They always seemed to fall on my weekend on. I did return to college for a while when I felt strong enough to change direction a little but them I got long covid so I had to give it up again sadly but hey I am here I am alive and I can watch my children grow which is more then some so I choose to look at the positives in life. I do still sometimes look back at my work life it wasn't easy leaving go of a career it took years to build up but it was most definitely the right thing to do. At the end of the day it was just a job and I as a person am more important as are you someone else will take your place the people being looked after will be alright you just need to look after you and be kind to yourself. I found community classes great yo begin with to bring me put of my shell nothing important uostyling classes for hair crafting parenting classes everything and anything really it just got me out of the house and gave me a routine for a bit. You can and will find your way it just takes time it is a big adjusent. I would consider counselling also just so you can talk through how you are feeling it is a big deal and it is ok to say so. Be kind to yourself and make the most of your free time maybe try a spa day with a friend it will help with your ailments and be a nice treat.
I know money is the most important thing to keep our houses and family’s needs, I felt like this when I was working and in exactly the same position. Although now I had to finish work due to ill health I find that now having gone thru the nuisance of applying for benefits that I’m much the same money wise than when I was working. So try and work out wat you’d be entitled to and then you could finish work ! X
Please see a lawyer who specialises in employment. It seems to me from the information provided that you have a case for constructive dismissal. I went down this route with my late husband's employer and was very successful. Good luck
I feel for you has my experience was exactly the same had fibromyalgia for years but took long time to discover. I too had to give up on my job because I can’t handle the pain stress and anxiety. I’m waiting on my application for work capability. I did everything I could my my body and mind to over.
See it like this, you kept yourself on working for longer than you felt like because besides needing the pay, sounds like you also cared about your patients a lot, which incidentally means you were always on alert on duty at night, and that still means stress. I did the odd few days of night shifts every now and then working part-time on a psyche ward many years ago but could never have done that permanently.
You will so need to recover and give yourself a break from that alone. Difficult to do I know, but if you can, do relaxed stuff that is therapeutic for you and get your sleep pattern re-established. Nourish yourself too. - I just discovered from a podcast that nuts, especially pumpkin seeds do calcium and especially magnesium in a way which helps pain far more than milk.
You've kept going in a demanding and highly responsible job for over six years with this condition. Simple self appraisal after a proper night's rest should indicate you've done good! No failure at all! All here agreed on that.
You have not failed . Ypu have tried and the main thing is your health. I to was in health care I tried and tried and I had to go off sick now I am on esa and awaiting pip .
you’ve not failed at all , it’s a dibilitating condition. I loved my job but had to stop .
Your health is more important. I have other things to oesteoarthiritus & spondylosis in my back . Good luck with the pip don’t give up if they say no keep appealing when you can’t appeal no more then fill out again . Just in case they refuse you it happened to me 3 times but I stuck it out with help from my friends family and citizens advice . They were life savers as it can make you really down when you’re refused .
DWP I went to court after appeal and won too .
Take care of yourself do whatever you’re able to do you never know when you won’t be able to do things . I’ve got worse since being diagnosed 2 years ago . With Pip I have got a car through motorbility adapted for my needs a disabled badge for ease of parking as I can’t walk too far now . And disabled rail card . Just ask citizens advice they were brilliant . Good luck and enjoy every moment with your family x
Hi Kazzza1976 , I know this is hard. I have had fibromyalgia and other conditions that go along with it for over 30yrs now. You are not a failure. This is a very hard condition to live with. I’m in the US and had to give up working in 95. I ended up having to go through a lawyer to get my disability in 97 which I got back pay from starting in 95. I am working 14hrs a week as a home health aid. I’m not sure how much longer I will be able to work because of my weird back pain. I don’t know what is going on with it. I’m not up on all the rights that working disabled people have. I know that the right thing isn’t always the way employers choose to do. Getting into a support group like this is very helpful. Even better is if there is a local support group in your area would give you better support. You need to take care of yourself first before you can take care of others. The physical pain affects your emotional and spiritual health. People here are nice, supportive and helpful. ❤️
You’ve tried your best to keep up working, if anyone has failed, it’s your employer, who isn’t offering you the flexibility you need to carry on working with a diagnosis of fibromyalgia.
I had to give up my last job, which I loved, because I couldn’t keep up with all the admin with brain fog, and of course I saw that as failing with that aspect of my job, not a symptom of severe illness. I’ve only seen a rheumatologist once for a diagnosis, and he came up with ‘chronic pain disorder’, which isn’t very helpful as nobody knows what it means!
It sounds as if you’ve tried really hard to find a way to continue at work, nobody can do more than that. I hope when you feel less tired you’ll start to feel your mood lift a bit. Xxx
Failed in what? There is no failure in correctly realising that you need rest. That's more of a success, and a way forward. Although I think we'd all like to be able to earn money by working , and literally working till we drop, but none of us would survive very long by doing that. Working Thursday/Fri/Sat/Sun/Monday is a 5 day week... Not a 'weekend' .. (2 days).. your weekends were Tue/Wed. So you've been working full-time nights. Doing that with a diagnosis of FIBRO must have been agony. I don't know whether you ever managed sleep during the day? But there's a whole issue about circadian rhythms that explain why humans are designed to sleep when it's dark, and what can happen regarding stress responses when we don't do that. Good luck with the ESA and PIP. PLEASE rest assured that you are on a better path regarding trying to feel better. If FIBRO people could live on a retreat of relaxation and rest and peace with perfect sleeping for a few years maybe that's the cure?! Don't concern yourself with negative thoughts about failing. Congratulate yourself that you've taken positive steps for hopefulness and less pain.
hi yes it has been very difficult for me. Working 40 hours a week (10 hour shifts ) I would try and get a few hrs sleep of a day but this was difficult because of the pain . I stopped working day shifts because I could not physically keep up with the work and thought by me going on to nights this would be better for me. My body is so painful and sore but now I’m resting. Thankyou for your lovely reply. X
I feel for you, I really do. I often think the same thing but you haven't failed one little bit. You have tried your hardest and in my opinion you're very brave to try everything you have to make things work out. I wish you luck with your pip etc . Rest and enjoy life as much as you can by doing so. Sending hugs x
Please dont feel you have failed, your just not doing what you have no choice in doing. They is a score sheet for pip, if you would like a copy of this let me know it will help you get your PIP. You really need to listen to your body.
I have had people regard me as a waster, a malingerer, a lay about and people who sit in a pub all day resent the fact that I get benefits. I have offered to swap with them but not one of them who has seen my little friend in action wants it. You are not a failure but unfortunately you are involved in a health war in which there will be no victories, sometimes a minor success but no real victory for most. There are the odd case were people have returned to normal and in this I find the most sympathetic attitude. Just go with the flow is all you can do.
For some reason, Fibro seems to hit the folks in the caring professions very hard. Possibly we push ourselves beyond our limits so often that our bodies rebel, I don't know.
I was a nurse and also in an abusive relationship, with two very small children, so I was feeling rubbish even when he was still alive. He died in 1991, which dumped all the responsibility on my head. and I broke. It was the needs of the kids which brought me back to life. I felt a failure too, But the kids helped me get back to some semblance of 'normal'. You are decidedly NOT a failure.
For months I couldn't tell which way was up, and it was years until I could eventually get a diagnosis, but I finally started getting DLA in 2002. (I'm older than the NHS, so I am unlikely to be transferred to PIP.)
I changed course and trained as a Therapeutic Masseuse, worked for a company delivering the HSE's First Aid at Work course (both lecturing and examining) and took a course on Skin Care and Makeup as part of an Image Consultant Course. I specialised in Wedding and Special Occasions makeup, and also Theatre Makeup, working for an Am Dram company.
There is Life out there where you can pick and choose your own hours, and are not under the thumb of others or working against the clock all the time.
I can't do it now (I'm 75!) but it turned out enough to keep our small family going with part time work I could do when feeling fit enough.
Hope this gives you some hope, and possibly some ideas for the future.
Hi Midori, just wanted to say what a lovely positive and inspirational reply. You can adjust and adapt and find work that suits your health status and often with creativity and thinking out the box you can find pleasurable, satisfying and adaptive ways to be productive but not a slave to the vampire that drains your very essence. I have recently taken voluntary severance and early retirement and as I predicted my health has taken a bit of a nose dive, happens every time you take a break from work ( must be something to do with loss of adrenaline/natural body steroids which keeps us going when we take a hard earned break from stressful work)! So, just enjoying ‘ME’ time and recuperation. I was a mental health nurse lecturer and I did some training in trauma EMDR a few years ago and looking forward to doing some private EMDR work when I am ready and on my terms.
Kazza, take time to heal and then diversify (you have a lot of experience and skills under your belt) and you would fit into a lot of 3rd sector opportunities, and you could consider doing therapy work (may need to do a bit more training for this but is doable). Best wishes.
HiI just wanted to say I agree with everyone else on here. I'm in the same boat I have been off sick since March, I work with disabled children with challenging behaviour. During covid I went onto nights to protect my family so that I had minimum contact with anyone, at the time I was caring for 3 immune deficient people outwith of work ( my parents and my brother), I was trying yo keep my adult son mental health up as deal with my adult daughters anxiety and panic attacks, I worked 34 hrs a week on night shifts, it was hard but I felt like I was coping. Once restrictions were lifted, I had to go back to my day shifts which was so hard. My brothers health deteriorated I spent 7 weeks in hospital with my brother he had learning disabilities and Downs Syndrome. As his health deteriorated I ended up doing more and more for family as parents were struggling with caring fir brother due to their age and physical disabilities. I plodded on doing it all, getting more and more flares. Brother eventually went into a care home and I visited daily on top of work and family commitments. I did not listen to my body pleading with me to stop. Then Dec 27th my brother passed away so I went off sick for two months as my bidy went into overdrive and made me stop. Feb this year went back to work, lasted 6 weeks. Been to occupational health twice, he's declared me not fit to do any work. So I'm staying on sick until they decide to let me go. I am not resigning. Maybe that's stubborn of me, but I keep hoping that one day I can go back. I love my job care is all I know.
It's taken me til now to start enjoying my days and find a balance that works for me. My family are now struggling to come to terms with how little I can do some days but they are so supportive. I stepped back from being there so much for them and took the last 7 mths fir me.
I'm now in a place mentally of acceptance that this is not a flare this is now life but it is now a life that I'm enjoying for 1st time in ages. I sleep when I need to, I do things if I can and I've stopped beating myself up about it.
I'm content, still getting benefits sorted but I'm trying to not stress over the future. I try hard to be here in the present. I've discovered journalling and that has helped alot with the grief of losing my brother and accepting I will eventually lose my career, but I'm now ok with that most days anyway.
I've discovered laying in til 8am. I used to get maybe 3 hours sleep a day but slowly I have been putting in place better sleep routines and now last 2 mths I'm getting 6 to 8 hours a night
Still in pain but it feels more managble now as I'm not exhausted. I do struggle with fatigue so if it hits I go nap. I have started to listen to my body and it likes that. You need to take this time to unwind relax and reset.
I think you’ve done amazingly well to carry on working all those days with this horrible illness. Well done for trying. I’ve been through similar experiences myself and have now accepted I’m too unwell to hold down a job. I’m looking into claiming pip after I received a blue badge. Not sure how successful I’ll be, but one can only try. Wishing you lots of luck x
I too have had a physical job that i am wondering if i can return to, my parents keep badgering me about going back im not sure but anyway, you havent failed you need rest and to see what you can and cant do i hope you will be okay x
Thankyou. I am resting but fed up being out of work and as you know yourself you can have plenty of rest but still the pain is there. And Thankyou for your lovely message, I hope you will be okay x
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my arms feel so heavy like i am holding weights 
Feels like a lifetime...
Is this what fybro feels like?
Feel like I am dying
feeling pretty low at the moment I have been diagnoised for a year but had very little support
my life feels like its in turmoil
