Hi, looking for people who are in employment or anyone who has worked while trying to manage thier Fibro.

[worker]

I have always managed to work, but the fatigue is really getting me down and I am having real problems getting managers to understand my situation. Any help or suggestions would be gratefully recieved.

[Hidden]

Hi sorry to hear that, the fatigue is the worst. Maybe if you bring them some information for them to read or ask to see occupational health to help I'm not sure as i had to stop work because of it. Hope you get the information you need. Take care xxxx

[Hidden]

I was working 12hr shifts when I first had Fibro, heavy physical work too. I worked as long as I could and then one shift collapsed in terrible pain and exhaustion. I went off sick for two weeks thinking I would "get over it" and of course I didn't. I never went back to work.

I would suggest that you obtain proof that you have Fibro from either your GP or Rheumatologist to show your employer and also take along from either your surgery or hospital a booklet on Fibroymalgia so that your employer can take note of it.

As Rachie says, if you have Occupational Health at your work, make an appointment with them to discuss your work situation and your struggles with your Fibro fatigue and see what they recommend.

It can depend on the type of work you do really. If my work had been more sedate and not so manic and physical I think I could have worked a few months more.

Anything we can help you with please don't hesitate to ask, always happy to help where we can. Take care. (((hug))) xxx

[Mdaisy]

Dear Worker,

I would like to provide you with this link which is soon to be a recent addition to the FibroAction Website and may help you with advice regarding your rights & organisations you may wish to call for further assistance.

fibroaction.org/pages/work-...

I hope you find this useful

Best Wishes

Emma

[worker in reply to Mdaisy]

thank you so much. you have no idea how much it means to me to have people understanding how i feel

x

[Hidden]

No worries despite the 125mg of amatryptalin i'm still awake, i told myself i wasn't going on the laptop tonight..........fail!!!

[Someonesmother]

I work fulltime in an office job. I am struggling by the end of the week and am sometimes so exhausted I find I have micro sleeps at my desk. The fibro fog is the worst when I am trying to write somethign and the words just won't come or I get muddled and can't get my words out. My life has become work all week and rest all weekend. The houseowrk is out of control and I am barely coping. I have no medication except for some panadol when the pain gets too much as I don't want to add kidney and liver damage to my woes.

My work does not really understand either because it is not something they can see. Good luck and I hope ythey listen.

[klm7777]

Hello sorry to hear you are struggling I work and like you I feel fatigued but I feel so much better on a job which I don't hate-

I used to work far too hard trying to keep up with everything and be the best I could be in my job worried about everything and getting no thanks- in the evening after a 9-5.30 or 9- much later even 1am!!! I'd come home and pass out on my sofa, no food, no drink, id go to bed when I woke up cramped and feeling dozy and wake up to start my day again - occasionally if I had a boyfriend they would come to see me and we would cook together but mostly that's how life went!

Now I feel so much better- I actually eat at night and don't fall asleep before that ( I might have a 30 min cat nap at about 7.30 but its only a wee one and since I finish work closer to 5 every day I get my food first). I enjoy this job much more now and I think that has a huge part to play.

I'm not overly active and still do work and then kinda crash in the evenings but please if your job makes you stressed and sad have a think about it's impact on the rest of you too.

Sorry to hear you are struggling so much

K xxxx

[Hidden]

Hi

I work also, only 22 hours, but I find that hard at times

My manager tends to put the amount of time I have had

Off sick in front of me and then say look you have had

All this time off 3 weeks in the last year. I don't think he

Should do that but some times it better to shut up.

Anyway I work for the NHS and occy health are supportive

So it does not matter what he says, as long as I do my job

Hard but I manage

[jom277]

I am very lucky that I work for the local authority in physical disabilities team. My managers totally get fibro. I am able to work from home if I need to and take rest periods. There theory was they would like to keep a good worker and work with me to stop me having to go off sick or leave. I warned them the other week that I was changing meds and we cleared my calendar.

I also have regular visits to occy health to make sure everything is ok and if I need anything adjusting to meet my needs.

I have however had to cut my hours twice in 2 years as was previously working full time, then down to 4 days and now 22 hours. I now work 9 til 2.30 and have a rest day on a Wed. I am able to have a lie down until my daughter gets back from high school.

[Ozzygirl64]

I had to give up my work because of the fibro as although I had been promoted I still had to do 'running' at the bingo hall where I worked to help out. I loved my job but they were not prepared to let me do the job I had been promoted to and not do the running if I was needed. So I left and I have not worked since. I hope your meeting goes well for you, people need to be more considerate rather than the 'we can't see it so you can't be ill' routine xxxxx

[Mdaisy]

Dear Worker,

Further information for you , if you would like to email FibroAction at [e-mail] they can send you advice guides from Benefits & work on your work related query.

Benefits & Works website link below

benefitsandwork.co.uk/

I think these would help advise you for your meeting tomorrow

Hope this helps

Emma

[mikeymoo]

Hi there, this is just the kind of question I have been waiting for as I have experienced the highs and lows of staying in full-time employment. Your first job at work is to meet with your personnel officer and tell them that you wish to be recognised as a disabled person providing any of the proof you have. The employer have a responsibility towards you under Disability Discrimination/Equalities Act. Then contact Access to Work through job centre plus and they will assess your workplace and suggest reasonable adjustments (your employer pays for this). It may be in time that you won't physically be able to do your current job but there may be something in your organisation that you can do (re-deployment). Your employer has a duty to explore all avenues before 'binning you off'.

I've had awful trouble at work, they didn't even acknowledge my disability for 18 month despite telling them numerous times. I have had to get my union involved as my bosses were trying to dismiss me out of hand, taking me down the disciplinary route. I have ended up with a final written warning for 'poor performance'. I have appealed this decision and submitted a grievance against my line managers, citing that they have caused me undue stress and made my condition so bad I can hardly walk. I may even take them to court over it as I have all the evidence I need. I am on Medical Capability now as I can't physically do my job, I am seeking re-deployment with the organisation but I have less than 80 days to go. My advice to you is don't give up, don't stop going into work If you go off sick you are making a rod for your own back. Please start the ball rolling ASAP, I waited for other people & nearly lost my job. Best wishes. xxxx

[Mipsy]

I'm a teacher and I am also studying for a masters degree. I have noticed that I don't recall facts as easily as I used to. I find I have to make copious notes to even begin to make sense of what I'm reading. As a mother of two young children as well, the tiredness is really affecting me. My skin is dry, I am in pain, I feel so tired, I have little interest in anything bar sitting down when I get home. I really feel my family are suffering.