Not sure what to do about work - Fibromyalgia Acti...

Fibromyalgia Action UK

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Not sure what to do about work

KiciaDoll profile image
41 Replies

Morning all.

So I was diagnosed with Fibro around 2 years ago but as time has gone on I actually believe my symptoms to be closer to ME/CFS. Either way the issue with work remains the same.

In Feb I took a week and half off work as holiday to try and get a crash / flare up under control. I had a meeting with my line manager and the team manager last Thursday and they have suggested getting OH involved to see where they could be supporting me more etc in order to prevent me from using holiday to manage my health and help me be more reliable as to when I am in the office, not needing frequent breaks (this isn't going to change as far as I can see).

Re going into the office: Over the last two years my mobility has deteriorated a lot meaning I can't get into the office as frequently and when I do it is not guaranteed that the lift will be working and we work on the 3rd lots of stairs.

The query comes in where on the same call they asked if I would take on two more lots of responsibilities. I feel like I want to say no to taking these on because I am clearly already struggling hence getting OH involved but feel like if I do say no they will use it against me.

Just looking for some other opinions /thoughts tbh.


Tanya :)

41 Replies
Dizzytwo profile image

Hi there, its horrible when you feel so ill you can't do your work. I have never had to deal with OH but there are plenty of our members who have been or are going through this process. I am sure they will be happy to share their first hand knowledge good or bad on this issue.

You say you feel OH may penalise you in someway if you turn down the extra work. I would be inclined to think the opposite may be true. If you take on the work. Even though your struggling they may think your ok to do it or would have had to turn it down.

I guess you have to look at it from their side. You are saying you need to reduce your work because of illness then except an extra load?

If it was me I would explain I can not take on extra duties that's why I am waiting to see OH.

I am sure you will get plenty of help and support from those who know better than me.

In the meantime why not try our search box xx


KiciaDoll profile image
KiciaDoll in reply to Dizzytwo

Thank you for your reply.

Just to clarify I don't think OH will penalise me for not taking on more responsibilities but that my team manager will. x

Dizzytwo profile image
DizzytwoModerator in reply to KiciaDoll

Hi Kicia, I think my original answer may still apply even to your manager.

Your manager knows your struggling. Then give you more work that does not make sense. I'm guessing OH bases their reports on a persons capabilities and maybe a managers report. If you accept more work I am guessing that would be part of the managers assessment to the OH.

Like I said I have not been through it myself but it makes sense to me to refuse the work if it was me.

shaws profile image

One of TUK's Advisers - now deceased due to an accident - was an expert on Fibromyalgia and I'll give you a link.

Dr John Lowe was a doctor, scientist and expert with regard to T3 and he himself took his dose in the middle of the night - so that nothing interfered with its uptakeAd,

Dizzytwo profile image
DizzytwoModerator in reply to shaws

Hi, not really sure what the thyriod links have to do with the posters queries on their ability to work and Occupational Health?

shaws profile image
shaws in reply to Dizzytwo

Did you read the link?

Dizzytwo profile image
DizzytwoModerator in reply to shaws

Yes what I could manage to read. I still do not see what any of it as to do with the OPs post. And I am sure if most people with fibro are anything like me they would find such a long text to read very hard if not impossible.

If there was a passage with something relevent to the post. Could you please copy and paste it thank you.

desquinn profile image
desquinnPartner in reply to shaws

I believe I and the rest of the mod team had read this link on a number of occasions as you have posted it so many times whether it was relevant or not.

Have also disputed the contents of the link on a number of occasions and while thyroid is a differential for fibro it is not a given for everyone with fibro.

As mentioned in PM (I am pretty sure a number of times) this single issue posting is the same as spamming when it is not relevant. I am putting this comment here as I have tried by PM previously. I would not want to restrict an admin from another forum but we are running out of options.

shaws profile image
shaws in reply to desquinn

I am not a qualified doctor but Dr Lowe was also an Adviser to TUK before his death due to an accident.

He was a scientist as well as an expert on fibro etc and dysfunctional thyroid glands etc.

If I was suffering with unpleasant symptoms, I would be willing to trial his method in the hope I'd have some pain relief.

desquinn profile image
desquinnPartner in reply to shaws

Expert on fibro is not something I can vouch for and his hypothesis (has not been tested in clinical trials) is disputed by fibro experts. Thyroid as a differential is understood and recognised. However the hypothesis that fibro does not exist and is instead undiagnosed thyroid is disingenuous and unhelpful on a support group where many / most have already had thyroid ruled out.

I am going to ask the moderating team to remove your template post when it is placed on our forum.

shaws profile image
shaws in reply to desquinn

The doctor I referred to was a scientist and also a doctor. His aim was to help people restore their health. His many patients recovered their health. He has since died but had people, worldwide, following his advice. He was also an Adviser to TUK

I have no idea where you found the following:

"However the hypothesis that fibro does not exist and is instead undiagnosed thyroid is disingenuous and unhelpful on a support group where many / most have already had thyroid ruled out".

I know it is a false statement. do you?

I have found the majority on this forum find that liothryonine is more than helpful..

If you want confirmation, connect with Thyroiduk who can give a bigger picture as Dr Lowe was also their Adviser.

desquinn profile image
desquinnPartner in reply to shaws

Shaws, we know who he is and that he has passed as it is in the same template post you have posted on here countless times.

As to the statement about undiagnosed thyroid it is mentioned and been proposed by a number of your users from your forum and resulted tin them being restricted from here. Their behaviour and the interactions between the two fora have resulted in past communications including with the charity TUK.

We have had our mod team maligned and insulted as well. But ultimately the posting of a template post about a can of ham, a bank balance in a foreign account, or this type of post is not on topic for this fibro support group.

I am also aware that their have been joint posts on this matter with TUK previously.

"I hope this explains why the admin team and the users generally are a bit cold to TUK members coming across and presenting their solution. I took your post was well intentioned but we cannot run a support forum where the very condition is dismissed by people. We also do not want to have these arguments and explanations with regularity hence our poor compromise of locking down some posts and pointing people elsewhere. We are open to better solutions and have reached out to TUK in the past which did produce their statement I believe."

This is what I pmed to you in November 2020. I the other pms I explained our position further but if you are not able to respect the rules of our forum then we would be left with no other option but to restrict your account which I have been reluctant to do as you are also a forum administrator and would hope you have empathy for our position.

shaws profile image
shaws in reply to desquinn

I have a very, very disabled daughter - all down to the GP when she was 4 or 5 years of age who shouted at me for 'putting ideas in her head". He didn't even test for R.A. as my mother had this condition and so does my husband . So I know very well how difficult it is for a parent to not be able to help their child in any way - except love.

A couple of months ago she had to undergo an operation to replace her elbow with a metal one. This was done by a very special hospital. Also she cannot walk unaided!

desquinn profile image
desquinnPartner in reply to shaws

you perhaps meant this for someone else or I am unfortunately missing your point.

Dizzytwo profile image
DizzytwoModerator in reply to shaws

I am sure we all feel for your daughter and what she may be dealing with. But again I am not sure how this is relevent to either the OP, fibromyalgia or even Thyroid problems.

Yassytina profile image
YassytinaFMA UK Volunteer

Hello, have you kept some notes on symptoms for the last few months ? The reason I ask is I was diagnosed with Fibro by my doctor when I was actually seeking if I had CFS ,it turned out I had both . It’s worth seeing your doctor as you are really struggling in the work place , taking on extra duties would impact you even more, I do hope some members will come along with more advice about current laws in the work place , but differently see the doc xx

KiciaDoll profile image
KiciaDoll in reply to Yassytina

Thank you for your reply xx

I haven't been making purposeful notes but I do have some. I have spoken to my Dr and his answer was 'Fibro and CFS are the same thing so it doesn't matter what you call it because it's all the same' so frustrating! He sent for some more blood tests which I had four weeks ago and have a call on 27th March to go through them...seems pointless by then tbh. xx

Yassytina profile image
YassytinaFMA UK Volunteer in reply to KiciaDoll

I like too tell your doctor too read up ☹️they are similar but actually different conditions, glad he is sending you for blood tests just too rule out anything else,can you try a different doctor ? I can understand your frustrations as I came up against this too. My new doctor also sent me too a CFS clinic but he actually diagnosed both my conditions separately. Some doc s just seem too tick boxes and don’t actually seek further for their patients, I had a doctor who just gave me antidepressants years back ☹️wasn’t interested so glad I was given another doctor at the surgery , i certaintly moved forward with him. Take care let us know how you get on xx

Dinkie profile image

hi KiciaDoll

You are protected under the Equality Act 2010. Can you suggest that any increase in duties/responsibilities be left until OH assessment has been done. They may have particular concerns and wish certain “reasonable adjustments” put in place and for those adjustments to be trialled for a while.

I saw OH although I really didn’t want to but it was the best thing for me and has enabled me to stay in work for much longer than I ever imagined. I’m still working many years after the “reasonable adjustments” were suggested and implemented by my boss.

Dizzytwo profile image
DizzytwoModerator in reply to Dinkie

Great reply Dinks I am sure it will be a great help to our new member :)

Dinkie profile image
Dinkie in reply to Dizzytwo

Thanks Momo, I am beginning to get back on board now.😜 Taken a while I know🫤 been a bit quiet without my partner in crime - she hasn't surfaced yet you know!

Dizzytwo profile image
DizzytwoModerator in reply to Dinkie

Oh dear I do hope maggs is ok Dinks. If you hear from her please give her my good wishes xx

KiciaDoll profile image
KiciaDoll in reply to Dinkie

Thank you that is very helpful and reassuring!

alihetherington profile image

Hiya don't take on the extra responsabilities unless you can allocate or delegate more minor duties.. or its definitely not going to work! Ive been through the same kind of thing in the nhs im afraid it foes feel like your 'screwed either wsy' & unfortunately that might be their intention ... it was in my case anyway, advice is make sure OH writes to y our manager stating why you have at this stage declined , and why specifically including the stress factors involved .. fatigue + non restorative sleep & pain +And his suggestions as to what improve your work life balance.. a midweek break every other week?? can you afford a pay cut??

Gigiruth profile image

Hi Kicia DollI had a number of OH reports to my employer. All were helpful and gave insight into my condition yo my employer. During covid I remained working from home after colleagues returned to the office because of a OHS report.

I had reasonable adjustments that kept me able to work longer.

Fibro can vary and you have taken holiday to deal with a flare. Check if sick periods are at perticular times of year. Mine was Chriistmas,do too much. Jan keep going and don't go sick,Feb -flare or hospital.

If you are in a trade union you could take advice from them.

For me OHS was a positive step in my employer having the information for reasonable adjustments.

Think through all things that help, which days to work,start time,holiday,extended trigger before sick action ,need to go home at short notice,evacuation assessment in case of fire and talk it through with OH.

Make notes to ask OHS.

You might say you need to stabilise your condition before considering new duties. Are these part of your role for everyone?

Look at everything you need.

All the best


Kazzza1976 profile image

hi there

I am sorry to here Fibromyalgia is interfering with your work, fibro is a horrible illness to have im going through the same. Iagree with Dizzytwo on this. I don’t think you should be taking on extra work, you have already explained you are struggling. I think if you take on more work your manager will think you are fine to do so when you are not. If this was me personally in this situation I would explain, I am not well enough to take on extra work which is why I am waiting to see OH. I also think taking on extra work can make fibromyalgia worse,ie, as in flare ups we need to look after our health and selves.

I hope everything goes well in ur meeting with OH

Take care

jimmyshoes profile image

hi , I did same as you in using Annual Leave for flare ups and hospital apts until I was stopped . The stress made everything worse as felt so unreliable taking sick days. Had 3 different referrals to OH and reasonable adjustments until I couldn’t do it any longer . I was devastated plus added worry of loss in income. Many other health issues as well as Fibromyalgia as I’m greedy 😀 but could not pretend any longer I was ok . I did receive pension years early and new style esa n get PIP (this part was hard , tribunal and 18 months ) but now , my health is better ish meaning , in that parts of the days I can smile and concentrate on my well being. (Pain and limitations are the same )Money is very low but have become a dam good budgeting queen. Now going to move to a smaller house as again , really see , my health is worth giving up the surrounding stuff . I’ve sold lots of stuff too .

I wish you well as that 3 yrs nearly killed me of being unable to do the job despite every reasonable adjustment that OH put in place . I didn’t want to give up and felt a failure and poor as hell but I’m on other side still poor but with a fantastic mindset and peace xx

Gab22 profile image

Hi, I’m also in the same predicament with my work too…they have in the past dismissed my requests with regards to an unrelated issue so I now find it very hard to trust that they will do the right thing…recently this has been proven as they have now requested I tell them exactly when I will return to work and also that I will have no future absences due to my conditions. I have been advised by a doctor that it is impossible to commit to or say any such thing and to contact other organisations for further advice.

I know this doesn’t help you and I hope you manage to find a solution or to make the right decision for you, just letting you know you’re not alone.

MaggieSylvie profile image
MaggieSylvie in reply to Gab22

It could be helpful, actually, because your post just shows how ignorant employer can be. How can anyone know the date when they're next going to be sick? Absolute b*****s.

jimmyshoes profile image
jimmyshoes in reply to Gab22

that’s unfair as rightly so , you cannot commit to saying you will not be off . I’d be inclined in your case to speak to ACAS as seems you are being set up to fail x

SiobhanSea profile image

Hi Tanya,

It's really tough trying to manage work and fibro/cfs. I'm lucky to be self employed so can flex things more but it's still not easy. I won't repeat what others have said but I strongly recommend that you get your union rep involved... and if you're not in a union, join one now. I don't know what you do or where you're based but they're here to help you for situations exactly like this and will give you support and help negotiate with your employer.

Good luck,


KiciaDoll profile image

Thank you all so much for your replies, they have been super helpful and have also helped me to feel less alone!

Pdady profile image

Kicia I think it's time to be honest with yourself . If you are already struggling it seems strange to take on more hours and stress when really you should be cutting down on how active you are depending on how your fibro is. I stopped working 3 years ago as life got to much for me and couldn't carry on running myself into the ground trying to carry on working. I have been ill since last Sunday after inviting my daughter for dinner it physically and mentally drained me and am slowly recovering. We all have different levels of fibro so only you can decide on whether you're health or your career is more important if you can I would reduce your hours rather than taking on more stress as that in my experience just triggers flare ups .

MaggieSylvie profile image

That's strange. On the one hand you painted them as being really knowledgeable and helpful and then suddenly, they're giving you more to do. If you think about it, it's worth taking their advice about time off for flares versus holidays; they will then have the experience of your not being there for whatever reason, and the work not being done on those days. I am wondering if there is someone higher up -say in Human Resources - that you can speak to about making your employment more "fibro-friendly" - you mention the three flights of stairs, for instance. Is it possible you could work from home sometimes i.e. if you could be alerted to the lift being out of order before you arrive at the office. You could give them some printed information about FM. Your managers might only be pretending to be understanding and HR might not know anything.

Being an FM sufferer, you would be wise not to accept extra work. However, is it possible that the new responsibilities are not something that has to be done every day, or that can be done as part of something you are already doing? Under the circumstances, I would say "show willing". It might be a trap. If you can't manage to do what they ask it would be further evidence of your illness. Don't allow it to become evidence that you are either a) incompetent or b) unwilling.

Lip service is being paid to your condition; I think you must make sure you have the real support you need. Take care of yourself - in every respect.😊

KiciaDoll profile image
KiciaDoll in reply to MaggieSylvie

Thank you Maggie.

My line manager is really supportive and tries to understand the conditions I have but it's hard for anyone to truly understand right.

I had another meeting yesterday and was basically told I have to take on these extra responsibilities as on paper I am not at my full utilization. Thankfully they won't add extra hours etc. and can be done around my current role. However, I have spoken to someone in HR today and explained everything and she is doing the OH referral this week.

Thanks again for all your replies :)

MaggieSylvie profile image
MaggieSylvie in reply to KiciaDoll

That's good. Hopefully everything will work out ok. You don't want extra stress in your life.

fmlife profile image


I find it is interesting the lift does not always work, I would write down how many days lift is out of order, and how affects you. for your work assessment.

crawling up and down 3 to 6 flights of stairs for 3 floors, no wonder struggling. It must take all the days spoons just to climb ('spoon theory')

Am concerned if a emergency situation happened how would you safely get out in time? or do they have a fire persons pole to slide down?

mobility wise would a rollator help you, or do you feel may need self motored wheelchair, would starting later in the day make it easier for you

I think your over doing hence the flares, pacing is important, not a full on cardio stair work out.

Also think about whether the chair, table height ergonomics, currently using is causing some discomfort for you. would a higher seat aid getting up easier? or a adjustable height table help, Ikea and horn make these.

look for ways can reduce wasted energy and be comfortable.

hope the assessment goes in a positive direction for you..

gentle hugs

KiciaDoll profile image
KiciaDoll in reply to fmlife

Thank you, all great points for me to think about!

CheetieCat profile image

Hi Tanya, I would politely but firmly decline. If an explanation is required, although it should be glaringly obvious, then it would be how you are struggling right now with not only getting to work but with your current workload once there.

Try not to worry about it going against you - you're being totally upfront & honest.

Have a think about what would actually help you to keep working - reduced hours, added rest day, different work pattern, flexible working, home working, home working if the the lift is broken, additional rest breaks to move around, changes to your working area .....

OH will look at loads of different ways to help you remain in employment. Let us know how you get on, best of luck 😊

KiciaDoll profile image
KiciaDoll in reply to CheetieCat

Thank you, really appreciate all the help and support I have received on here!

Charliebear1234 profile image

Hi kiciaDoll, they obviously know your struggling, your under no obligation to take more work on and they have to support you don't do it because your health comes first and my god I know how bad fibromyalgia is bless you, say no your not able to take more on due to your I'll health take care❤️

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