Hi everyone I am relatively  new to health unlocked.  I have been reading a lot of the fibromyalgia posts. My heart goes out to you l struggled back to work 4 months later but by that time pain had travelled to everywhere in my body.  Flare ups,  fibro fog etc.  It cost me my job as a social care worker with the council an then my marriage of 26 years.  I have slowly learned to live with it but still can't pace my days,  always end up doing too much when I'm able.  It's so frustrating and really gets me down although I try to remain positive.  I still have my life and my 2 kids so I am grateful for that.  I bet parts of my story rings a bell with a lot of you out there.   Thanks for reading. Love to you all.  Alan x

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  • As if it's not bad enough the pain you have your marriage as well, that's terrible Alan. I have FB and know loads of people who don't know how bad it they don't understand or even people close to you try but you constantly feel guilty and think they secretly think you're lazy. What I would give to be independent again. I hate asking anyone for anything, so it's like torture and I grit my teeth having to ask. They reckon it can be triggered by stress or a bereavement - I have had both in bucketloads and the only advice I can give you is to treat yourself with extra care, have a hot bath every day, go to sleep at the same time and get at least eight hours and take your time when you get up. I always take my tablets and get a brew and cereal then go back to bed before I can get up but I have been off work since February . Print off the leaflet off this site and give it to close family and friends so they realise what you're going through. I wish you luck and hope that you can feel better in some way in the future xx

  • Hi shabob1, thank you for your kind words. It's like your words came out my mouth. WOW somebody that finally understands. You sound like you've been and are still going through the mill. I was on and off work for 2 years until I was eventually paid off by the council. They wouldn't even re deploy me in the end as I kept getting flare up after flare up. I had to attend a meeting at the head office. What a state I was in. I would give anything to get my health back. I am sorry about your bereavements and do hope things improve for you.

    Thank you, xxx

  • I am on the cusp of the same thing with work and I am terrified. I am about to pluck up the courage to ask for early retirement and work for a Utility company so deal with Councils - or did do - on a daily basis as a manager.

    Now I feel like a pathetic waste of space having to act grateful even if I get my tablets as everything has been an uphill struggle.

    I am trying to believe that if I take small steps, quite literally and try to try health things like a paleo diet - there is a book my daughter sent me called something like the perfect diet or something similar anyway, I can't face anything yet as they have put me on depression tablets too now as well as pregabalin, naproxen, cocodamol, Tramadol and diazepam so I am a gibbering wreck. But I am determined one day I will do better then now, I can at least say that. Keep trying and if anyone dares say anything say would you say anything bad to someone with MS? I read in a report that because the illness is invisible people don't understand but that it can also be more painful than MS so tell them that, it will soon shut them up.

    Make sure you apply for PIP ( question where it asks how far can you walk aided or unaided pick choice E as it means can you do it repeatedly and they don't tell you that and ESA,) I am just about to and I am scared but have no choice. My husband has been redundant for over a year and now has a part time job at nights so he can look after me.

    Good Luck Alan

  • It sounds like your about to go through what I'm coming out of. I have been through all the esa and pip marathons. Made to feel like you are at it. I had 2 appeals. 1 for esa and 1 for Dla. Welfare rights helped me with my Dla one and I fought to get put in the support group. I made the transition over to pip about 3 months ago with some advice from an online website. I can barely get out of bed most mornings. Mobility is also very poor as I'm in so much pain. I've tried all different types of vitamins and herbal tablets, wasted a lot of money being honest. I just try and pace my days but it feels like I'm in a constant flare up. I do as much as I can when I'm able. I worked every day since I left school up until the day I woke up in hospital with severe pain in my legs. The Dr said it wouldn't get any worse. I personally would disagree in my case. It started off in my legs and over the course of 3 years travelled all over my body. I had no choice to claim benefits. I held onto every glimmer of working in my brain but my body had different ideas. Don't give up you will get what your entitled to and also carers allowance for your husband. I didn't put in for that. If you need any help just post on here. Me and lots of people on here have been through nearly all your going through or about to go through. Take care, Alan xxx

  • Thanks Alan, like you said at first it helps to know that you're not going mad. I have worked since I was in school till now I am 47 and that's the way we were brought up work hard and don't rely on anyone else. It kills me to give in and apply for anything. Plus my husband doesn't qualify for carers allowance cos he earns £198 a week so anything over £100 means he isn't eligible. I have joined a website to help me face it all and do it properly as I haven't a clue. If I come across any problems its good to know I could ask the question on here, take care,


  • hi harpo . sorry to here all this . ive been through similar. fibro does your head in . its such a strange thing when you feel occasionally fine you cant really grasp what is going on then it comes back and you living the pain again . i dont get much respite from it . but when i do i tend to capititlise on getting on with stuff ive not managed then im back to flareone again . arthritis in my feet and hips and disc damage contribute to my feeling like im 90 .

    such a joy .

    im ex edinburgh as well maybe it was something in the water we all got inour youth . i keep thinking that its caused by exposure to something . be it antibiotics or god knows what

    ok enough drivel take care