Working & Fibromayalgia

I have some questions about working when you've got Fibromyalgia... can anyone help?

I was working in the health sector for 17 years & I had to give up working as a school first aider/nurse when I started having symptoms... My Fibromyalgia was diagnosed along with Chronic Pain Syndrome & Sleep Paralysis back in 2006 & I really want to get back to working again but with the pain the way it is, I can't hold down a job... is anyone else having the same difficulties or have you managed to overcome Fibromyalgia enough to get back to normality... any thoughts guys???

32 Replies

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  • Hi Rose,

    do not think had the pleasure of a chat with you before.

    I work and it is very hard work! my job is a full package since i am an Employer too so its the physical, organising and driving and payroll.

    So as you see there is many ways there to still work be it physical, office or drive and i am struggling as there is all the pain the burning, aching, stinging the suffering, the physical is impossible as i can barely do any light work for the hands and the arms and neck and weaknesses,

    you could try doing something depending on your talents you have achieved over the years and even if it is voluntarely for a period.

    Typing is fine so long as got the rite equiptment to adapt the wrist support etc. You are entitle to keep having breathers (breaks) and any job you decide to choose should always consider some one who has problems and not see them as a 'risk'

    if some one was to apply to me was i a bigger firm i would no doubtly ask 'what is your best ability' ie driving or sitting doing office work or quotes. Which in my case it is in and out your car into a house.

    Depends on how severe you are and what you feel capable of doing.

    have you any little hidden talents of creativitivty that could give you something to earn and in your spare time?? from home ??

    possibly go to you local job centre give them a run down and say how it can debilitate you but when you are ok you can manage xyz ?

    a temporary position a temping agency, so that if you are not capable you can turn work down.

    Sorry if not much help but just trying to think of suggestions for you

    soft hugs

    cazzie xxxxx

  • Hi fairycazzie

    Thanku so much for your advice, I would love to get back into Nursing but it seems a goal too far to aim for right now with the daily struggles of pain & Fibromyalgia... I have thought of working from hme but I just more a people person & love to help get involved with them, I have been looking into voluntary work but again that's St John Ambulance & British Red Cross which I used to do for over 8 years... all very practical work so I'd like to get my strength up, it's kinda like my spirits willing but the body's given up! it feels like that at times... But thanku so much I will think about it & maybe do some bank work with the local hospital... I just don't know weather I should just take a chance & jump into it again & hope for the best or take time to work with this condition...

    Thanku

    Rose

  • Hiya Rose I qualified last year mental health nurse, I secured a post and started, it became an issue on the wards part not mine, they tried to get rid, I won my appeal and was placed within community team till the end of my orginal contract, that ended April just gone. Occi Health will not agree to me working on wards, or nursing homes, also I could only do part time these days.and not allowed to drive anymore than 30mins to get to office base. all sounds horried I know and with the new government and cuts its almost impossible to find work. however I do gone on the NHS websight daily, and do apply if i feel there relivent cause even the interview is practice, I also use other angcey sight PM me if you would like me to forward any to you tomorrow smiles and hugs xx

  • hi Rose,how about volunteering at your local hospital? they usually need people to visit and also to help people eat their meals.If you can afford it and your hands are ok there are sometimes ads for phlebotomists in the local papers.

  • Hi i havent worked since January this year had the same job for 6 years and loved it but i couldnt last the day out with the pain, and the following day i was completely shattered and useless, hope you are ok take care

    Lin x

  • bruiser

    That's totally right, I feel like that & especially when it comes to working, I feel I so just want to get in there & do it but my body won't allow it... so frustrating at times... Thanku for your advice...

  • Hello Rose, I have a similar background to you, I worked in Health and Social Care for many years but had to stop working because I became so ill but didn't know with what at that point. Eventually I was diagnosed with Fibromyalgia and CFS/ME. I had to stop working in 2009 after my diagnosis.

    I have a goal that one day my symptoms will be sufficiently well controlled for me to work again, whether this happens or not remains to be seen. I certainly couldn't manage it at the moment as I am stuck in the house really, but my symptoms are better controlled these days. I now have RLS too which is a real problem to me, the pain can be unbearable. (Restless Leg Syndrome)

    I think we have to try to reach a stage where our condition is managed as well as it can be and then at that point reassess what we can do. I am hoping to reach that point next year (setting a target keeps me thinking positively) - if it takes me longer than that then sobeit.

    I am a great believer in PMA (Positive Mental Attitude) and I said right at the beginning when I was diagnosed that I would not be beaten by my Fibro, I still stand by that.

    Don't be too hard on yourself Rose, set yourself goals but don't get despondent if you can't reach these goals within a given time. I think it's a question of concentrating on what you still can do as opposed to the things you can no longer do. This way you will be surprised at what you can actually achieve, it is possible to increase your well being and to still have a very good full life.

    If you can no longer work in the future, this is the time to concentrate on all the things you think you can still do. Be as active as you can manage. Keep yourself as well as you can. Count your blessings.

    How you are feeling Rose is perfectly normal, we all have those concerns. Don't be too hard on yourself. Fibromyalgia is not easy to accept and adapt to. Take care.

  • Hi LibertyZ

    Thanku for all your comments, you hit the nail on the head with that...I do want to try to get back to working in the health sector but I need to be practical too, if my health isn't up to it I need to be sensible... I try to stay positive but sometimes that can be hard... I too didn't know what the problem was other than when I found I wasn't able to stay awake when I wasn't busy I realized there was a problem... that's when I started having , what seemed like endless tests for things & finally that came up with Sleep Paralysis, the Fibromayalgia diagnosis came later with the Chronic Pain Syndrome diagnosis... I would love to just wake up tomorrow feeling as fit as I used to & jump straight back int the job I loved doing... but practically this isn't an option... I try to set goals for myself but don't seem to be able to carry them through because something always comes up health wise to stop me in my tracks...so frustrating... but I guess you have to learn to live with the conditions before you learn to work with them...

    Rose

  • I know what you mean Rose. I constantly make plans and then I have a really bad day or a migraine and I am knocked back three or four days. I think being positive, which isn't always easy, is the best way to tackle Fibro. Be determined that it's not going to stop you ultimately doing what you want to do. If you don't eventually manage your goals, at least you've given it your best shot instead of always wondering whether you should have tried it.

    I would do anything to go back to my work, not because I hate being at home, but because I loved my work, it gave me a real buzz to help people. It was so satisfying and nothing since has made me feel like that. I felt I made a difference. Realistically I couldn't manage the hours I put in before. I like to think I could. ;)

    I think you are tackling your condition in the best possible way Rose, you hit the nail on the head with your last comment. Keep it up, you'll do just fine. Take care. :)

  • Hi LibertyZ

    Thanku once again for your comments... I will try to stay positive, which isn't always easy... I worked in the the health sector for 17 years but alongside that I am an Actress/Model which is my other career, however fibro has put a temp stop to my acting, Modeling's not to bad but I have put on weight due to all the medication I take which has lowered my self esteem I guess... I haven't been able to do much of anything since I was diagnosed...I did have a temp cleaning job but that lasted about 4 months so then work seemed impossible to do... I share your frustration about not working but I think I have to listen to my body & learn of it's limitations, which isn't an easy task... sigh... :-)

  • Hi Liberty Z and Rose

    Just wanted to say I agree with everything you say - many years ago now I had a really good part time job which I loved and thrived in ...... then the great fybro hit me without any warning and for which it took many years to get the correct diagnosis - over these many years without being able to work you are right you have to learn to adabt and live with what you CAN do not with the things you cannot. I have missed big dates like weddings and special birthdays for people all because of this fybro and attaching conditions..... but like you I still try to plan things and just hope that I am able to make it happen. Good luck with it all do not give up and yes I like you count my blessings every day XXX

  • HI SharonD

    Thanku SharonD I too have put things off like auditions etc because of fibro, it is very frustrating when you know you've got the get up & go but your body just wants to rest... I was talking to someone just saying I need to learn my body's limitations but that doesn't mean I should sit down & say that's it... life's to short not to try at least, so I need to get up & at least try to do something but I have lost a lot of confidence as I put on weight so my modeling's kinds slipped away & I don't get to auditions much anymore... working in the health sector was the one job that made me feel complete, you know, but I guess I'm just learning to cope with my conditions but it would be gr8 to be able to feel well enough to do the things that I loved doing once again...

  • Well also in my job i take elderly shopping voluntarily whilst girls work and since i struggle i offer other help to them,

    Its only short trips too as my elderly struggle aswell.

    But every little helps.

    I take bits of washing home, do ironing.

    They only pay for the cleaning service!!

    I feel like a secret fairy as most companies charge for all thise things.

    You could go round nursing homes, as the elderly love company.

    When my gran had dementia in the home there would always be some one attracting attention, so you would help.

    There was odd ones who wanted to go out for walk in gardens or ser rabbits so you just help out and of course you got nursing skills.

    There is the other job i was going to apply for after pharmacy which was being a driver in them white cars taking patients from home to hospital??

    But the job i am in nOw came along.

    I wrked in pharmacy for 8 yrs loved it.

    My cousin is social care wrker she just drives around with disabled children giving parents time out and the pay is good. Or she house sits some one for hours, she does day/night shifts and my cousin is diabled with her feet she has car on mobility too.

    So there are different things if you want to seriously try something.

    I am however thinking of packing up and taking time out to see what difference it would have on my life as i am struggling as this is widespread and feel so rough a lot especialy facial jaw etc head , body neck arms shoulders.

    This is different to what my family member and do not think anyone realises the actual impact it has to you as a package physicaly & mentaly with thinking and concentration.

    I not up to scratch like i was and so hate admitting it as you feel defeated.

    Then theres the positive thinking lol

    I hope you finaly find or do what you want to do.

    Lots of love and warm wishes

    Cazzie

  • I worked full time in a residential care home until last december then CfS and fibro hit, I was off sick until April, have gone back, but now do 21 hjours split into 3 shifts, I have now beendiagnosed with spondilisis and tbh work is killing me. I struggle throgh my working day and literally drag myself in the door at the end of a shift, and then spend half the next day in bed,I'm in constant pain, can't afford not to work and as we all know, there no point even trying to claim benefits, I tried when I was confined to bed, no joy, so no chance now,maybe I ought to become an alcoholic then Iwould get myu alcohol free to drown my sorrows and not have to work either, Sorry rant overXX

  • HI debs27

    I think you're doing extreamly well, so don't give up ok... you're working through your condition extreamly well & even though your feeling exhausted at the end of the day you're doing it girl... I so wish I had the strength you do... working with any condition can be hard but it's especially hard with fibro & related conditions, don't become an alcoholic tho, more trouble than it's worth! I don't drink all that much, once in a blue moon only because I know waking up with a self inflicted headache is more trouble than having the regular ones... I have migraines & headaches that last 24 hrs so it's really not worth it, only in moderation as they say..., you can rant anytime you want to me... I am a counselor & will try to help where I can so I really don't mind... & I can totally relate to this....

  • I'm hoping to start counselling training next year. I had my own florist shop which I had to close three years ago due to the fibro. I did think one day I could work from home doing floristry but running your own business is very stressful let alone in today's environment. I've always had an interest in counselling and feel its something I could cope with but will still take a few years to get qualified. I'm living on my parents inheritance which I feel awful about as its dwindling away and it was supposed to be my security in my later years. It's so frustrating !!! God if I could get back to work now I would. I have been working on my physical strength tho so am hoping next year I could do a part time job whilst studying. Good luck with it all,it's not easy!!! Xxx

  • HI Teddysmum43

    Don't give up ok, thanku for your email, I can see you have gr8 passion & that this counselling course will be good for you... sorry you had to give up what you enjoyed doing, the florist work, but sometimes things happen to get us on the right track, your patient & warm hearted & these are all very useful gifts when it comes to counselling, being able to emphasize with others is & gr8 thing to be bale to do & don't get too downhearted because I know it's been one hell of a struggle but you will get there...

  • Hi Rose, I have been a qualified nurse for all my adult life too - but have been working in NHS management roles for the last 15 years. I am lucky enough to be in a role that can be office based and since my role is ensuring equality & diversity and human rights are adhered to - it has been comparatively easy to get my employer to work towards the reasonable adjustments that I need to help me get back to work. I was off for 10 months, and went back in July. it is very difficult - even though I have a full time post I am struggling with the part time hours I am working in my phased return. I had managed the pacing quite well before I got back to work, so thought I'd be okay - but it is far from easy, even when I though I am office based. I am working towards the full time hours - but we have to see whether I ultimately manage that or maintain it... Good Luck with finding some rewarding work that doesn't make the fibro worse. I agree with other comments - don't push yourself too hard. Company and making others feel better does wonders to help you feel good too.

    Best wishes

    Sue

  • HI SuzySparkle

    Well I think you're doing amazingly Sue, I so wish I had your strength, I worked for 17 years & just got used to the job, but when the fibro hit, it was like a boul out of the blue, I came out of my job after 2 years as a school First Aider/Nurse because I knew something wasn't right & haven't been able to work properly since... I did acting alongside Nursing & even getting to auditions seems to take it out of me... I am currently working towards my Diploma in Health & Social Care with the Open University to keep me occupied but I can't put that towards a nursing qualification as I didn't qualify as a nurse due to dyslexia so I am still trying, I tried the access to nursing 3 times & the DC test twice but I came up against a brick wall every time... I have't given up & still want to do nursing but with all the pain & other symptoms, at the moment it seems a far away dream...but like you said, I won't push myself to far because I risk making it worse, I just wish I could go back to how it used to be...

  • Hi Rose, I was working in Maternity up until September 2011 when my Fibromyalgia, Lymphoedema and plantar Fasciitis got to a point where I was too unwell and in too much pain to work my already reduced shifts due to my health and I had to give in. I had battled on in pain for a couple of years but I had a huge flare and to be honest things have just got worse since then.

    I am in constant pain and with my Lymphoedema my legs and feet are hugely swollen and I can't wear anything but crocs all the time several sizes bigger than I was before. I can't drive because of the pain and pressure in my feet. Ive just had another MRI as the consultant suspects bone Oedema now and possibly stress fractures in my ankles. My hands are swollen and I can only type on the computer or write for a few minutes.

    Like you I miss my job helping people so much, even if I could do an admin job i'd hate it! I sleep lots during the day and feel so unwell that I don't think I could hold a job down and would be quite unreliable!

    It's such an awful state of affairs for all of us here and even more sad it seems when we worked in the caring profession looking after others but are now unable to even look after ourselves properly. I'm frustrated and extremely sad like you and the others here.

    Good luck for whatever the future brings for you, I hope it will be a better time with less pain!

    April

  • Hi moonstonebright

    Thanku for your email, & I'd like to say how much I admire you & your passion to continue to work in care, if only we could get there again... it is so frustrating especially when you're in so much pain, I must say you're doing extreamly well just managing to get through each & every day... I have Sleep Paralysis & Chronic Pain Syndrome which is partly why fibro was diagnosed because all the conditions are linked... you can only do what you can because you're body has a gr8 way of telling us when we're overdoing it, it says nope I'm not doing that! but I do miss helping people, I used to do alot of work with the Homeless through my church but even that has had to take a back seat... so frustrating...

  • I did alot of voluntary things too. This morning we were cleaning the church so i went along on my mobility scooter and managed to clean the cross and candle sticks from the alter but that's all i could manage and then i went home and had to sleep for a couple of hours but at least i managed to do something!

    I'm trying to go for ill health retirement from work but they are loathe to give it to someone with Fibro because they say it might get better! Well of course i hope it does but so fast over the last few years its got worse so I'm not holding my breath but its not fair if petiole with Fibro can't qualify as there us nothing to say it really gets better and the Lymphoedema won't that's for sure.Oh well, i can but try. I have a disabled daughter and financially I'm nit sue how we will core if i can't work. Best wishes to you Rose x

  • Hello Rose!

    I started a job August 2011 at a residential care home for learning disabled adults, I worked 16 hours a week, when I interviewed I made sure to let my boss now that I had a weakened immune system and after I started the job I was constantly asked to do extra shifts, I tried to do this and was not able to so I brought in a note from my doctor saying that I was only to work 16 hours a week due to my fibromyalgia (wich they knew about) i missed 7 shifts in a 9 month period and head office made me redundant my boss at the home told me to appeal and I am now in the middle of an employment tribunal sighting the company for disability discrimination. I miss my job, and just having something to do. I am looking for work that I can handle now. It sure knocks your self confidence though! Good Luck!! K

  • Hi katrincs

    Well it seems you've done all the right things, & it frustrates me when employers don't understand that some people have limitations to health & you told them up front that you could only work so many hours, I feel glad that you can work at all with this condition so well done... I really hope the tribuneral realizes that you were right & that you're employers were discriminating against you, they can't just add shifts for you to do wehn you've been specifically told you can only work so many hours... don't be too discouraged though, I know that wasn't the right job for you & that you will find the right one for you, you have so many good qualities to bring to any employment role, you're smart, patient & persistent which are all very good qualities, you love to give confidence to others & you always work hard to achieve tasks... any employer would be blessed to have you on staff... I know I would...

  • Thanks Rose hope all goes well for you! K

  • not had a day off through sick in 17 years have a good employer who realises when i am at my worst and puts me on light duties, i work for a large chain store , heavy lifting most days but on my bad days till and paperwork , no disrespects but if you are this ill that an easy job like this was hard for you and only working 16 hours perhaps you should go for employment in a field that isnt so demanding ,perhaps you should have had an esa worker go with you and tell the employer and yourself what you could or couldnt do before accepting the job.

  • Hi Rose :) I was made redundant from my job in the NHS 7yrs ago when my symptoms got really bad. But I loved my work and was determined that I would find a way to get back. I have learned to "pace" myself gradually and have now found a "happy" homelife/ worklife/ social-life balance. I have now found a new position within the NHS - only working part-time (1 full day and 2 half-days per week) -which I started just over a year ago (my new colleagues do not know that I have FM) and so far so good -I am coping well and enjoying the new challenge. I believe the answer to returning to work is to "accept your limitations" and by working part-time you can maybe increase yr hours to suit what you are able to do. Reading all the replies above has made me realise how many of us "fibros" have actually worked within a medical caring profession - maybe this tells us something about the "caring nature" of our personalities. I hope that you can find an employment (no matter how small) that you are able to cope with -- even a small job helps you feel "needed" and gives you company and confidence and a feeling of self-worth. Good luck :)

  • Hi phlebo123

    I think you have a very real grasp on this, accepting my limitations is something I am working on, I don't know what they are & would love nothing more than to jump straight into the first job I could see myself working on, but like you said it's best to learn what's good for me...there are so many people here with those caring personalities you speak of & nursing/Care just seems so natural when that's all you've done with your life, it real hard to try to fit your hand into another glove as it were.. well done for working part time, I'm surprised you have chose not to tell work colleagues but I understand why, someone was saying about discrimination in the workplace & this can so easily become an issue when people know about your health... I do hope I find something to do but am quite scared that I won't be able to hold a job down, this is the longest time I've been out of work & I kinda think sometimes, this is it, this is all my life's going to be from now on... it's real hard but you are so right, accepting my limitations is the first step...I do need to feel needed & have some self worth as my confidence has taken a huge blow but I hope to find something soon... Thanku for your email & encouragement... It really helps...

  • hi rose i work too i also have epilepsy , athritis and an underactive thyroid , i have been told im not sick enough for DLA but i have had to lower my working hours as i am in so much pain and drugged up to the eyeballs, that i have to concentrate more on my work than i used to which makes me more exhausted , the dr thinks i have fibro , but not as much said it when i saw him after i had tests all he could say is we had made in roads whatever that means , i just want to be pain free and drug free and claim my life back

  • Hi gregorysgal

    I can totally relate to you, not in the way I have epilepsy because I don't but because you're in so much pain & having to concentrate on doing tasks more... that feeling of exhaustion doesn't seem to get any better unfortunately... I would love to be pain free & not have to tkae the billion tabs I have to each day, but unfortunately that's not an option right now, but I do see where you're coming from... you will claim your life back once everything settles down, you're doing a gr8 job so keep going ok...

  • Hi I have the same problem I can not get pain free to go back to work I still have a job in a admin role for the health secter but I have been off work now for 7 mouths and now they are talking about medical retiement but I think I am in full agrement with them as I can not do my job as my fibro is bad at the mo and does not seem to be giving up. I hope you find a way to get back to work if that is what you want . All the best now pauline

  • Hi Rose

    4 years ago after being off sick for a year I had to drop a grade and go part time as an administrator. I am very lucky to have a very good employer. I worked 24 hrs a week for 3 years and I have just started a full time job.

    Although I could rest more on part time I found the depression was bad on those days and I was overwhelmed by the pain and tiredness. I made the decision to try full time and although I am exhausted, psychologically, for me, the depression is a lot better. I haven't overcome my medical conditions but I feel I have a better attitude towards them. I don't notice the pain as much and therefore I am motivated to move more and live a fuller life. I do hope that you will find something that suits you and brings joy back into you life. You deserve it, as we all do. x

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