Hi!
I work in the NHS and am massively struggling. I’m newly diagnosed so i need to know what triggers/can help ect.
Having a lot of flack of work for been off sick/ and amount of times I’ve been of sick. They told me I should have a good think if this is the right job for me?
So what job is right for someone who has fibromyalgia?
Hiya. I am in the same situation. I was off sick for 3 months and now I am currently off sick again due to lower back pain and painful legs. The doctor advised it is sciatica pain and I need to rest for about 2 weeks. Had a call from my senior manager saying that I just returned to work in May and I am off sick again. I told her it's not intentional and I can't control my illness-when I have flare up or not.
I am scared they might not be happy with me. But we do not have control over our body. Hope you feel better soon x
I totally understand your predicament, I mean it's not like we choose when to be sick is it 🤨. Just try not to fall into the trap of over explaining your condition, it only leaves us exhausted and frustrated.
Thank you. 😀
Your employers do not have any right to tell you to think about whether or not the job is right for you. They have a duty of care and under the Equality Act 2010 they can find themselves in very hot water indeed if they try to push you out of your job without following the right procedures. Do not make any decisions before taking advice of either union or someone specialising in employment law.
You are newly diagnosed and as such it is their responsibility to offer you a occupational health assessment and be guided by that report as to what "reasonable adjustments" are required to help you stay in work. Sounds to me like they have no intention of cutting you any slack to help you get on an even keel and give time for medication to be adjusted and working for you.
I was diagnoses many years ago and my bosses insisted I attend an occupational health assessment which I really didn't want to do. I have to say it was brilliant and I am still in work and have various things in place to help me. Car parking space by the front door, modified uniform (I can't raise my arms above my head). Special chair, handrails, more breaks if I need them. Different hours - more in summer, less in winter as I find driving in the dark really difficult. In fact my boss says I am the most reliable employee in the company. Fibro is different for all of us and what works for one may not work for another it's very much trial and error but I am proof that sometimes it is possible to remain employed.
I have an occupational health meeting but not u till middle of September. I’ve had my meds upped I’m due in tomorrow but I’m in so much pain. X
I would perhaps approach the conversation slightly differently going down the reasonable adjustments route. So, go into the meeting with a positive view that you can do this job but that you need some reasonable adjustments to support you in doing this. Now, this may mean changes to shift patterns or perhaps hours worked for a period of time or it may not. I would suggest though reassuring your work that this is something you feel can be worked through as you still have alot to offer. use the occupational health appointment to capture this.
Thanks you for your guidance and support. I love being employed as it gives me a sense of worth and belonging. I love my job and want to work until retirement if God willing. I plan to ask for a change in job role when I return to work. In my current role the driving is killing me... my back, arm and hand muscles and legs can't take the strange. I am hoping for a desk job.
Hi I work in HomeCare and absolutely love my job too. I was off for two months earlier this year and my Company paid for me to see an Occupational Doctor - unfortunately it 'back fired' for them as he signed me off for another month (to get my meds sorted) and also made lots of recommendations to my company - such as having regular breaks from driving too much and too many clients back to back.I've now gone to just working Monday to Wednesday - haha that's not gone well as they are short staffed and they keep asking me to cover. Hope you get the result YOU want/need x
Have you tried epsom salt baths to try and ease the pain? or tens machine, biofreeze gel, hot water or hot wheatbags. Gentle stretching also helps. Good luck tomorrow I hope you make it through the day.
Oh yes I’ve tried everything.
Don’t have an answer for you but I wish you well and hope you get on ok at work
Thank you x
You may also find our employment booklet useful at fmauk.org/publications
Good evening, you are not to ‘blame’ in any way due to having fm. Working for the nhs you would like to think that they have insight into how this affects you🙈do not be pressured into them being dismissive of you with fm/chronic pain 😬they should without a doubt be supportive of you. They have a duty of care(, I get so angry about having to repeat this to people😡)as your employer. Research all that you can on your diagnosis and what support your employer is legally bound to help you with. I know when you are suffering this is hard to do but there are many support groups that will help you in this. This group alone always has people who know what this is like and you can ask anything and there will always be help and advice available.Take care and do not be intimidated 🙌
Thank you xx
Hiya, as Dinkie said you have so much rights in the eyes of the law. They have a duty of care to make reasonable adjustments for you! If they fail to do that you can take your employer to the employment tribunal whilst at work. Honestly, some of these companies should be put under house arrest.
I hope you do not give up and get the help.
Hi,My previous NHS employer had no employee disability policy in place, they went through the motions of Occ Health but during the whole time made it as difficult as possible for me.
Problem is the more stressful they made things for me the worse my condition got.
They did things like delayed putting in place what Occ Health’s advised them to provide (suitable chair and other equipment) before my return..delayed for 2 months until I was out of sick pay time (I was set to try staggered return before).
Upon staggered return, after two weeks said I had one more week before going back to normal!
Those that think NHS are always caring..absolutely not..they just care about their Managerial figures.
On third sickness period (3 weeks) due to weakness and pain from their too quickly removing staggered working, they swiftly processed their system whereby I was medically removed from my employment contract! Lost my job!!
During the process their statements were not true or honest (HR & Management), even tried to coerce O.H.
Awful, distressing and I ended up not only jobless but in serious relapse.
Nasty employer I had. They literally played their system, no caring or understanding at all.
I hope your NHS employer treats you better.x
Hi confused, this is me right now!.During a call from a manager, I mentioned the doctors were looking at ME, she promptly replied oh so you can't work anymore, I said I think that will be my decision not yours.
I worked all through covid, I was in so much pain but I felt I had to be there with my colleagues.
I feel now that you can work with the sick, your just not allowed to be sick.
I loved my job in the NHS, I have met so many beautiful people and have made lovely friends.
The way I feel I don't know if I will return to work but it will be my decision.
For the original poster, I hope your in the union, just email or call them and they will give you advice and to the lady who was told she was unfit for work, I think that is what I will hear on my next call from my manager.
Omg…that’s disgraceful! My union represented me but there was nothing much he could do (in other words he was as helpful as a chocolate teapot!). I have NE & FM diagnosis and did then.My question to them would be ‘so do you believe people with ME don’t or cannot work or is it that you don’t understand ME?’ (often the problem).
Don’t walk away from your job, they have a legal responsibility to you..don’t let them just get away with it.
Problem is that the stress worsens conditions. So unfair.
I could of appealed and had a strong case but by then my family wanted me out of there as could see it causing me worse health wise.
NHS should be flagged up to the Government about this as everyone thinks they are caring angels..not Management for sure.
I do hope things get better for you, keep me posted if you’d like to (I maybe have some helpful knowledge 😉).
Hi, two weeks ago I was diagnosed with FM/ chronic pain and to be honest I am questioning whether or not I can do my job, off for three months , went back for 5 weeks after the call with the manager and now been off for 6 weeks so far.I once thought I had a good pain tolerance, not anymore, this hurt all the time.
Adapting to medication, pain and sleeping, or the days you can't even make a brew.
I'm a single parent with 2 kids , one still at school, I feel drained and perhaps it would be less pressure not to work but then I think, how will I manage financially, I fear the stress is making it worse.
All through my sickness, the manager and someone from HR has been on the call and never made any suggestions other than the oh you won't be able to work, honestly, I was hurt, 5 years and all in all I'm just a number.
I have 3 weeks left on my sick note and a lot of thinking to do but I do know my health and my kids come first so I think I already have made the decision but its hard to make the changes.
I appreciate your prospective and hope your doing OK x
It’s very tough I know. Everyone’s different too. If I am truly honest the work struggle was horrendous and I doubt if long term working is something I could of kept up.But ultimately employers should be supportive and not make anyone feel less than.
I’m sure you will make the best decision for yourself but don’t feel bullied into any decision .
What we all really need is rid of our medical conditions eh x
Contact ACAS and any union you are a member of. They can help and advise.
DO NOT QUIT! Make them sack you. Then you are in a much better position to take them to Tribunal for unlawful or Constructive Dismissal, If you voluntarily quit you will be in a whole heap of problems with getting Unemployment benefits.
Thank you midori, taking on all your advice x
I hope you tried to sue for Unlawful dismissal.
I work for the NHS and my experience has been so much different to yours. However, my union was involved from the start in negotiations to accommodate me and I’m wondering if you are with a union? Every trust should have the correct procedure in place to ensure you are supported appropriately and for me, it involved collaboration between HR, Occupational Health, the Union, my line manager and me. I needed special measures in place re working hours etc. I appreciated I could no longer do the acute nursing I did before with 12 hour shifts and so I have side lined into education. Can your employer not offer alternatives that will not put you under so much physical pressure? I have to say I found the OH doctor brilliant with a good understanding of my condition and respect for my consultant who is managing my diagnosis. The thing that strikes me here is the discrepancy in the way different NHS trusts are managing long term sickness when it should be the same across all trusts. I wish you luck in finding the best solution for you but urge you to get advice from your union if you are a member.
Good to hear of a happier NHS story of an employee..I wish there was more good than bad I’d heard of. I think it’s not on just which Trust but also which part of NHS (ie hospitals, mental health, school nurses, administration, list goes on and on eh).
Hi hun,I have been a nurse for 45 years (now retired) I also trained as a counsellor 21 years ago as I knew my back wasn’t going to see me through.
Have you thought of training ? I currently offer telephone counselling so if I’m having a bad day, I can stay in my pj’s and counsel. Xx
I'm a housekeeper. Self employed. I find stress makes it worse, brain fog etc, some foods, processed bread, alcohol, cheese, inflame my joints and the IBS. Exercise helps, even when you feel like you can't. So an active job...good diet... exercise. And I found out there's no such thing as a sympathetic boss, so I don't have one.
Good luck x
Hi Sutton-bold and others,I am not a sufferer, but because I had never heard of FM until my sister suffered from it, I still never paid much attention to the symptoms and what she was going through… And basically dismissed her claims.
I now have a friend going through the same thing, but this time I took it upon myself to find out more. I’m now so ashamed that I did not take my sisters claims seriously first time around. My ignorance got that better of me and therefore did not support my sister as I should have.
Somehow get your bosses, doctors, family and friends to take 5 mins to do some research, to let them know that there of thousands of people out there, worldwide suffering from this. I’m sure their understanding will go much further once they have been enlightened and start to support you, rather than them thinking that it’s all in your head.
I wish you all well going forward…
Bless you for your message and now knowledge. Unfortunately all too often relative people like Gp’s employers, if if given the knowledge, still will not acknowledge…it’s half the battle sometimes. Wish everyone was like you 👍🏻 x
Unfortunately there is no right or wrong job when it comes to fibromyalgia ☹! May I ask as you already work for the NHS if they have recommended any medications 💊 that may alleviate your symptoms X
Hi, No they haven't recommended anything at all z
See your GP they might prescribe Pregablin
Good luck to you , I didnt want to stop work but all reasonable adjustments had been made and unfortunately was still not enough. OCC health can help to a degree but the needs of the business usually wins. Maybe use the time you are too unwell to work to just focus on what transferable skills you have to possibly hold down a job you could do part time at home .Sometimes this is also not enough as there is no time that anyone one of us know when the day is going to be manageable. Is there a hobby that could bring in an income so that timescales are your own eg wedding planner ,cake making driving instructor , data input ,computer repairs and creative flair that you could utilise . I wish you luck ,its so tough isnt it .
What kind of job are you doing? Some are more difficult for Fibromites than others.
Whatever happens, DO NOT RESIGN. I had a 15 years in the NHS before being made medically retired. I now have a pension and was able to apply for benefits immediately. However, had I resigned I wouldn't have been able to do this. Getting union rep is vital. I wouldn't attend any more discussions or meetings about your situation without them .
You really need to insist on having your union rep with you at ALL discussions and meetings about work. Don't ever agree to or even discuss things without your union rep present.Make sure you have been seen by Occ Health, as they will support you and your employer must take their 'recommendations' seriously and act upon them.
Hi, So sorry to hear about the time you are having. I work in the NHS x 42 years and diagnosed in my 30's. Its been a battle I won't lie but keep as fit as you can, reduce level of stress if possible and DO NOT RESIGN! If the worst comes to the worst then be medically retired but then you are out of the NHS so maybe get your union to help you. What do you pay the fees for?
Your employer has a duty of care to modify your working conditions to help you or they can offer an alternative job.
I was offered an alternative job but went back to my dept which I must say was difficult but I'm still there, albeit part time now.
All the best! Do not let them grind you down.
Hi. I also work in the NHS. The previous suggestions about going down the occupational health route are spot on, as are the recommendations to have a union rep present.The hardest thing i found was when anyone asked what could be done to make things easier. I couldn’t think of a single thing other than “stop everything hurting so much”
My colleagues now thankfully understand that my condition is constantly changing, and that i can start the day fine and end up unable to walk, and conversely start having difficulty and finish full of energy and able to ignore the pain.
The biggest challenge for me has been the fibro fog. My once razor sharp memory now regularly forgets & misses really important things. I now write everything down in a note book, and go through it at regular intervals throughout the day.
Good luck, and the NHS is lucky to have you
My job is also stressful, and I've had to go down from 50 to 10h/wk, still struggling a bit, using 3 kinds of disability (1 of them only due to also having seizures), less strenuous stuff and overtime, so it counts as "50%". (Germany, not UK.)
You asked "what job is suitable": If I had to work full time, it'd have to be online from home, without mask and without stress. Not possible in this job tho & changing wdnt be effective.
I am in the same situation do hard and stress full can't cope with it all x
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