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Fibromyalgia Action UK
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What happens to me if I can't work?

Good evening, I hope you are all having 'good' days today.

I've been having a lot of very 'bad' days when my leg pain and fatigue have been debilitating. (Plus lots of other symptoms have been bothering me, but you all know these too so I won't list in detail!)

I've been diagnosed with anaemia again and low vitamin d. I am hoping this will improve soon and explain away some of these bad days...I hope.

I'm working full time but studying one day a week through work. Given how awful I've been feeling I've negotiated one day off mid week with my bosses for the next month, in the hopes that the iron and vitamin d tablets will start to kick in.

My secret concern is that my FMS is getting worse. If that turns out to be the case, I'm sure I won't be able to work full time.

So my question is, what happens then? When would I be deemed eligible for disability allowance? How can I cope with less money?

I'm feeling rather fragile and I can't think straight so I would really appreciate simple responses. I know nothing about this area but think a lot of you do, have read many posts but not really understanding all the acronyms etc!

I feel quite alone when I'm not interacting on this forum. It's starting to dawn on me that I am disabled/differently abled.

:( thank you for reading

Zosie xoxoxo

15 Replies

Hi Zosie

I fully understand where you're coming from, I was there last year.

Please don't worry about things too much just now, which is very easily said. You have to find out some things so you can make proper decisions.

Have you been referred to Occupational Health? I think it's the law that you should be and things should be adapted in the workplace for you, to make it easier for you to stay at work.

How would you feel about reducing hours, would that be an option for you?

Can I ask who you work for? They may have a pension scheme that you can apply for? If there is a pension scheme have a look at the criteria. I was with the MOD and applied for med retirement. I had to fight for it but did get it.

I'm sorry, I don't know about DLA or that side of things.

I am glad you found the site and agree with you about not being on my own here. There is usually someone who knows the answer to most questions here. Keep on site and in touch.

Take care.

Is x


Hi there, I am just beginning this journey and have an occupational health meeting tomorrow to see how I am managing at work, or not. I am a teacher and at the moment I am not fit to teach at all so I am hoping that medical retirement is an option. Can I just ask how you fought for that as I doubt my employers will agree to it easily. Thanks in advance, Linda.


You need to check the guidelines in relation to ill health retirement, many employers are changing them at the moment, the MOD changed theirs about a week before I actually retired.

Are you in a union? You should speak to them as well, wait until you've had the result from the OH assessment.

The process I went through had 3 stages which I needed. The 3rd stage was with independent consultants. During the process I was told that I hadn't tried all the treatments, the independents said that shouldn't be a requirement. The pension people also said I should attend an exercise programme which would cure me! It's a 10 week programme on referral from a GP. I ended up signed off work for 3 months and was less fit than when I started. My union rep suggested seeing a private expert. I saw and got a letter from prof Davies in London but unfortunately he passed away a few months ago. I could pass on his assistants email address if you want to ask him for advice.

You will need a report from your GP, rheumatology, any treatments you've tried.

You will probably have to fight so be prepared. Keep a record of all your medical appointments, any discussions with supervisors at work, discussions with OH, absolutely everybody and his dog! You may not need it all but at the very least it will be there as a reminder for you.

Let me know how you get on and I'll help as much as I can. Oh, when you see OH, pension assessors etc be completely honest with them.

Keep in touch.

Is x


Thank you so much. After my occ health appointment I need to get my G P to refer me to a rheumatologist and then get back to my union rep.


Hi there...I. So sorry your unwell and struggling at the mo, suffolklass reply is important and very helpful, and a great idea about having a day off mid week....as you work full time, I'm guessing that you get a reasonable yearly salary?

I will not ramble on and will try and keep it simple, but regards the DLA, the max anyone can get is approx £520 a month( high rate) and minimum is around £230ish( low rate).....depends if you get the low rate, middle rate, or high rate and also depends on how bad your disability is.......but maybe you could claim housing Benefit which might financially make up the loss of monthly wages.

I'm assuming you enjoy your work and the training you get one day a week would be such a shame to stop work altogether! but understand if you had no choice? I had no choice.....but DLA comes noway near to a monthly salary and working full time....I so don't want to worry you, but I'm sure you have guessed it won't be anyway near a reasonable salary.....I have a partner, so I'm one of the lucky ones....do you have a partner/husband who's salary can support you IF you had to give up work?

You can get DLA and work full time as it's not means tested. And they allow people to work part time and still get DLA...could you afford to perhaps consider part time work assuming you qualified for the top rate?

Also one more thing, did you know that any partner/husband/wife can be your carer? They receive a small amount per year to help, also if you said that your( assuming you have someone living with you) hubby/partner does everything for you, cleaning, helps with your washing I.e. Hygiene, showers, etc, cooking....if it satisfies the DLA dept, you may get the Top Rate in care in which case you will get the Top rate Mobility.......all confusing for you at the mo, and I've tried to keep this simple for you.....if you do apply for DLA, let me know, I can help you with that....and you Must always tell them how the worst days affect you 24/7.....if any good days, they reduce the rate.....

Tc Jill UK


you can get the top rate mobility even if ur just getting middle rate care xx


Hi everyone can I ask a question is the DLA benefit still applicable, I was told that it wasn't anymore and that it is now called PIP? and with this you need to get points before any benefits are awarded. I was on ESA (Contribution Based) for a year and it stopped in June and now I don't get anything. I wouldn't qualify for PIP because I can wash, dress and feed myself. I wouldn't qualify for ESA (Income related) as my partner works more then 24 hours a week. I also would not qualify for Job Seekers as I am unable to work so basically I am in limbo. I had a bad flare up last week which left me in bed for a couple of days and wiped out for the rest of the week. How can any of us actively look for work when we are not reliable enough due to pain and fatigue etc.


Hi DLA is only being used for those who have appealed an original decision. PIP is now in place for all new claimants. We can send out the PIP & ESA Benefits & Work guide for Free if you email us at info@fibroaction.org. I would apply for benefits and think about how long it takes you to wash & dress, the fatigue & pain you experience before, during & after. These are the aspects to use to complete the form and at your worst experience of symptoms what you can & cannot manage. Hope this helps



Hi Mdaisy, that's brilliant thank you for the info I am going to do a daily diary each day and write down how I am feeling how long things are taking me to do etc. and then look at the benefits :)


Hello Butterflygirl1,

To help you with a daily diary some people us a Fibromyalgia Impact Questionnaire (FIQ), which may help you to accurately keep a record of your symptoms. You should be able to find a copy on the internet if not,please private message me as I have a copy I may be able to send you.

Emma :)


Thank you so much going to try and find it now :)


Hi butterfly girl, Jill and Is,

Thanks for getting back to me. I do have a partner, he helps around the house and cooks when I feel bad. He works 37.5 hours per week. I am contracted for 35 currently. It looks like from what butterfly girl has experienced that I might not be eligible even if I were to drop to 30 hours a week as I can wash and dress myself etc. I should really be thankful that I can still just about manage work most days, I know.

Thank you all for explaining so clearly, it really does help. I am going to refer myself to occ health in a couple of months if I am no better. I think I need to get used to te idea of working part time and dealing with the drop in salary. It's difficult as I am only young in my career and keen to progress.

Thank you all again, you've given me food for thought!

Zosie xoxox


Hello Zosie,

Please see above and we can also send out the Reasonable Adjustments & DDA Benefit & Work guides for Free if you need them you can email us at info@fibroaction.org

Here is a link to the information on our website which may be of interest too


Best Wishes



Hi Zosie, I know exactly how you feel your still young and probably feel like your life is falling apart, there are times when I just want to scream the pains are awful and the fatigue is just horrible, I tried really, really hard to keep my full time job going I hate not working and contributing to the household. I have the most wonderful partner and a fabulous family and friends who love and care for me. The problem is that even after the length of time that I stopped working my brain still thinks I can do it, its my body that doesn't. If you can work part time then give it a go but if you can't, then tell yourself its okay you will manage some how you always do because you have to. Its not just the money side of things its the sociable side of it when your working you have people around you that you can talk and laugh with, when your not working you feel lonely and isolated. It is really good to have sites like this where we can share our thoughts and feelings. I hope it all works out for you and whatever you do you know we are here for you and that we understand how your feeling :) x


Lots of great replies here! You are so far from alone! I was in your shoes at the beginning of this year. Feels like the world is crumbling around your ears! I know! I saw occupational health and found them slow and the process stressful so I just got worse. I was signed off for about four months then took another 3 months leave from work to allow me to get out of the mess and pull myself together and get fibro under control It worked and I'm MILES better but I'm only working part-time now. Don't know if I'll ever be able to go full time again. How long is a bit of string? If you can still work it is nice - good for self esteem to know you're still useful. But if you can't, you can't. Be kind to yourself. Fibro is rubbish!


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