I'm currently going through the process of being dignosed with fibromyalgia. I'm constantly in pain and the tiredness is never ending. I'm the only one who works and I do long 12 hour shifts as a carer on a dementia unit I get physically attacked the pain it causes is unreal. But I love my job and love providing for my family. I already hate this fibromyalgia I cry so much. Two of my boys have a form of dwarfism I tell them to never give up so I feel I have to carry on to set a good example. I'm tired I feel trapped and lost. I hate fibromyalgia it's taking over my life.

13 Replies

  • So sorry you have fibromyalgia. It truly is a beast. I used to be an Activity Organiser in a nursing home. I found it very difficult. I didn't get attacked but the stress of care homes and the job made me worse. I hope you can cut your hours down, please speak to the Union rep at the home, you don't have to be a member

  • I'm a member of the union but I can't afford to cut my hours that's the part that makes me feel trapped. It's just hard to feel positive at the moment my boss is lovely and was understanding but for how long. I'm just having a bad day I think I will try and be more positive tomorrow.

  • Feel for you. Loved working with dementia but the work is so physically hard I had to quit. 3 hours travelling on top of the work was just too much. Hugs :)

  • Thank you my rheumatologist told me to find support I've been looking at these support sites for a week but was afraid to post but thanks for making me feel loved xxx

  • You are in one of the most fulfilling lines of work there can be however 12 hour shifts can become too much, you may need to reassess your situation as you are ill. get advice about any financial help available to enable you to cut your hours. I know it's a huge step but you need to really take care of yourself, fibro doesn't go away. Best Wishes. Lou xx

  • Hi madmel

    I am so very sorry to read of your suffering and your struggling, and I genuinely hope that you can find some resolution and relief to these issues. Fibro can be tough and relentless, but there are medications that can help relieve some of the suffering and fatigue, and I would definitely discuss this with your GP or Medical Specialist.

    I have pasted you a link below to our mother site, FibroAction which hosts loads of useful information:


    I want to sincerely wish you all the best of luck with getting a diagnosis one way or the other and with any treatments.

    Al my hopes and dreams for you


  • Hi there , in so sorry to hear you are suffering , hope today is a better day for you. Regarding your job I know how you feel , I am a nurse in a care home and work 12 hour nightshifts, it's a very physical demandig job, in off sick at the moment thiugh as I had a tumour removed from my spine 5 weeks ago and I'm spendingy days worrying about the future , I feel so weak just now and can't picture myself goig back to a job I love but I do need to work. It's not easy , I hope things work out for you, take care and you came to the right place coming here, it has helped me so much although this is the first ive posted for a few weeks xx

  • I agree with all the above, I did a very demanding job for years and worked through the Fibro. I know this made me worse and often wonder how much better I would be if I hadn't done that. We are forced to make hard decisions, or our bodies will make them for us. blessings and best wishes to you and your children.

  • hi there.

    I was in same position and did a lot of looking in to it.

    as you probably know fibromyalgia is classed as a disabilty and therefore if you apply for pip and get any rate you are then entitled to working tax credits and housing benefit.

    this will enable you to cut your hours down...I was struggling so much I ended up with depression and was signed off wor for two months....when i returned I was allowed to use my annual leave to work a shorter week.

    if you are struggling with mobility or daily living and you need help then that is what pip is there for....I am currently in the process with the financial help but have cut my working week in half.

    I am now managing my work and they are very supportive, putting me on the lighter duties....hope this helps xx

  • Hi Madmel, I can't offer any real advice, but I can tell you that this is the place you want to be if it is support you are looking for. I have found the people on here to be very friendly, supportive and more importantly fun. They help take my mind off the things that are getting to me, especially when you don't want to burden your family :)

    I can understand how important your work is, but as you have said yourself, it is very demanding and physical so this in itself will add to your pain and tiredness. I too have been in the position of being the sole breadwinner for the family and even if you want to do it can add more pressure. Is there any way of reducing your load at all? or at least be able to rest when you get home :)

    Take care and hope to see you around the forum :)

  • Thank you everyone I'm back in work tonight I asked that we have more staff on the floor we work on as it's 2 staff to 28 residents but we will see if they change it x I'm starting to think that I'm really going to have to assess what's important and work from there thank you again means a lot to know there are ppl who understand xxxxx

  • I can't really add anything as the others have given you excellent advice. My only words of advice is to do anything you can to lighten the load as stress can have a big part in making your fibro symptoms flare. Hopefully when you get a full diagnosis you will find the medication and treatment helps you in your daily life and coping with the symptoms. Be gentle with yourself I think those 12 hour shifts doing the demanding work you do would be enough to bring down a fit person. I had to give up a job I loved but realise now that it was my only choice even though that choice was very hard at the time to make. It was even more difficult as my husband had had to give up the job he had done for 38 years only the year before because of ill health but somehow you manage.

    This is a wonderful site where people are kind and supportive and also fun at the same time so i think you have come to the right place.

    Please let us know how you get on as we will be thinking about you. Soft hugs.x

  • Does anyone know? Are mother's little helpers (not the little blue pills!)/caregivers government sponsered? Does Madmel qualify for any kind of partial disability benefits so the great work and examples for the children can continue without the stress and with less pain and fatigue? Here in the US, our social security system can award partial disability to people who can do limited work and have definite disabilities.

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