Working with fibromyalgia!

Hi everyone I'm a young man 20 struggling with fibromyalgia and have been since 12-13 however took me 5 years to get a diagnosis even though I knew I had it as my mother is the same, just wondering how many people work with this struggle as I have been working at asda for a year now and still am, 5 days a week and have been struggling ever since but always fight through it just wondering if people have tips to help on working because because mentally physically and emotionally I'm struggling? Any advice could help!

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  • Hi mathewTait

    Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I have pasted you a link below to our mother site, Fibromyalgia Action UK which hosts loads of useful Fibro information: fmauk.org/

    I have suffered with Fibro for a few years among several other medical conditions and I find working a struggle just like you. However, I do not work directly for an employer and I work whatever hours that I choose too.

    I was wondering if you were on suitable medical medications with the full support of your GP and other medical consultants to help you achieve your goals in life and stay in gainful employment? I want to genuinely and sincerely wish you all the best of luck.

    All my hopes an dreams for you

    Ken

  • I'm on tramadol, Duloxetine, amitrityline, paracetamol, baclofen, I was on codeine for years just stop being affective and now tramadol is the same whatever the dosage, getting fed up!

  • I think (in my opinion) this is one of the flaws of medication as eventually its effectiveness can wear off. I want to genuinely wish you all the best of luck.

  • I am disabled now but I have had fibro for 40+ years. I found that resting, proper meds, taking breaks when I could, even some exercise and good sleep was a must. Just pay attention to your body. I am sure others could be more helpful.

  • I worked for over five years after being diagnosed and found the best way to cope was to tell colleagues about your condition and to pin up information about it and the Fibromyalgia Groups. You have to learn to pace yourself and learn to say no when you can't cope.

  • I have fibremalagia along with other illnesses and i cant get any treatment for it.some days i feel so drained.it is awful.

  • Hi Matthew,

    I've worked for many years with this illness too but still charged about at a rate of knots, hiding symptoms from colleagues and popping pain killers. I crashed at home after work and at weekends which was awful for the family looking back. All that continued till my body said no more and crashed with CFS/ME and fibromyalgia.

    My advice is the same as others really. Be realistic about what you do, pacing is a must and listen to what your body is telling you. Life is for learning and enjoying, so have fun in a balanced life. Speak to your employers. If you can reduce your hours, take appropriate breaks, equipment if necessary, time off for medical appointments. I believe fibromyalgia on its own is now a recognised disability (please someone correct me if I am wrong) and these are the reasonable adjustments an employer should legally make to help you stay in work.

    I must admit, because I had been such a dedicated employee, not taking time off etc, my line manager was skeptical when I told him and thought I was just under stress due to organisational change. How wrong he was! I did have to go to the union and occ health to get these measures in place albeit reduced hours doesn't suit my job and I am now facing ill health retirement.

    I wish I had recognised symptoms and had an earlier diagnosis so measures were in place to prevent my body giving up on me. I now face a much longer rehabilitation and management period. Please seek help NOW and make sure you listen to your body. Pain is not there to be suffered. It is your body telling you there is something not right.

    I, myself, am finding out more about vitamins, minerals, supplements and diet rather than popping pills to keep symptoms at bay. Doctors have 5 minutes to see you and in that time they will either

    1. Give you a pill to treat the symptoms

    2. Refer you to a specialist to do exploratory work which is invasive and usually comes back negative or

    3. Dismiss you and tell you there's nothing wrong with your tests so you must be healthy and just depressed.

    No disrespect to our GP's meant, they are good people working in a system which is flawed.

    This does not look at the root of what is causing pain. I have become very interested in the work of Dr. Sarah Myhill. Www.doctormyhill.co.uk who states many illnesses start in the gut. This doesn't count for the hereditary function of Dna passed from parents but if you are like me and don't want to spend the rest of your life popping pharmaceutical drugs you may want to keep an open mind.

    I wish you all the luck in the world and hope that you can find a work/life balance with this terrible illness and hopefully can get some relief through self help. I don't believe we are here on earth to suffer pain and anguish. We are meant to live, Learn, experience and have fun along the way. You are too young to suffer.

    Be good to yourself. Jax xxx

  • Sounds like you work for the same employers that I worked for. I fought for years to get them to believe I was ill. My line manager told you boss I was always drunk. I told her numerous times I was exhausted. I was going to be sacked for inefficiency so I had to get the union involved and got medical retirement. Would rather still be at work if they were more understanding.

  • Hiya, welcome to the forum! Sorry to hear you have been struggling with Fibro from such a young age. Managing work all depends on your individual symptoms as not everyone is the same. I have Fibro but I also have CFS and Arthritis. I worked for four years with the condition but as my symptoms worsened my employer (Police) were not very supportive and initially tried to give me the push from the role I was in. I eventually, with the help of a trade union, secured another role. As my symptoms continued to worsen I had to take early retirement at 36. Luckily I had a good pension scheme.

    I would suggest that you speak to your G.P. regularly about medication. Managing your pain levels is really important in remaining in a job. The good thing about ASDA is that there are lots of different roles, some less energetic than others! I used to work at Morrisons and moved around to different roles over 4 years. Maybe if you struggle with standing you can ask for a more sit down role, etc. Keep fighting on as long as you possibly and don't give up! All the best, Mike.

  • I currently work in the chillers which isn't good, however I just layer up and crack on because other departments you need to work on your own and my fibrofog gets to much and I get stressed cognitively not knowing someone's in my aisle for quick help, and I can't do a sit down job as i constantly fidget and get restless and worse pain, I need a mixture which is hard and I can't afford to reduce hours. Thanks a lot guys

  • Dear Matthew,

    I know what you mean, I used to work on a fish counter, much of the time on my own. I know with Fibro fog and standing, there is no way I could manage. When I was working, it was discussed going part-time but I couldn't afford this either so I understand your need to remain full time. Take care of yourself and I hope you can keep going. All the best:-)

  • It's so hard to work with this horrid thing, I work in a prison hospital

    There has been times when I have been standing up looking at the television

    And gone to sleep.

    It's such a struggle I'm so sorry you have this as your so young but you could go

    Into remission, look at your diet this helped me a lot just start by cutting out

    Let's say bread and biscuits for a month and if not different try something else

    It's worth a try it did improve my health do end.

    You need to explain to your company if you can you need regular breaks

    To rest, I know not every one has any empathy do they, that's why it's always

    Worth being referred to occupational health as they do work to make your life

    Better

    good luck

    Viv xx

  • My company know full well about my condition my and can be very supportive however I hate being judged I always want to prove I can be better than others, and this is when anxiety really kicks in I get so stressed at work because j work harder than others and if I have one day when I'm bad people roll there eyes, they understand but because I fight through it so much and suffer in silence no one thinks to much of it, I inform them I work go home and rest because if I don't I won't make it to work the next day, a great way of explaining it for the achey side is telling people that for every mile I walk to my body it feels like 10!

  • I got diagnosed with the fibro this year, HMS two years before and have been working for McD's for the last 5, so I know the struggle of working on your feet all day, but at the same time the nature of the job itself probably keeps me more mobile because it forces me to be active. The best and most useful suggestion I can give you is to find your comfortable number of hours you can work and the maximum number of hours you can work (for me comfortable is 26, maximum is 28) and just let whoever does your rota know to keep your hours within these limits as much as possible. With mine I also have the agreement that when they need me to do the extra I can, so long as its the exception and not the rule.

    Hope this helps.

  • I do 25 hours and can do extra if I'm feeling up to it!

  • I also work 7 days a week 8 to 10 hours a day and yes more days r harder then others. I use fentanyl pain patch Gabapentine and use Epson salt bath soaks for pain.

    But I am getting ready to start using all natural magnesium cream with n magnesium bath soaks that I have made at home myself. Will let u all know how it works for all this out of control pain.

  • Sorry to hear of your struggle working I remember it well.I worked for nhs for over 20 years .From when I was in my 20s I always seemed to have some pain somewhere,sometimes it was back pain sometimes shoulders,sometimes neck sometimes sore throats and swollen glands that would go on for weeks and weeks and I was always tired.Does this sound familiar?5 years ago I started to get pains in my legs that seemed to be in the middle and work outwards like a volcano .Then came shin splint pain in legs every time I walked more than a few hundred yards,then came burning and stabbing pains that hurt so much.my gap was fantastic and every test was done for me over time.In the end she sent me to a rheumatologist who after many months and trying treatment including steroid injections and medication for arthritis with no effect he gave a diagnosis of fibromyalgia and chronic fatigue.As there was no treatment he could give me apart from painkillers to manage the symptoms I was discharged.By now I was in awful pain all day and was for the third time off sick from work for many months.After meetings with her and my manager and trying reduced hours and light duties the effect of just having to work for 8 hours was just too much for me.workmates would say I shouldn't be there if I couldn't keep up as it made their work harder and in the end after falling asleep at my workstation I went off sick again just for some rest .well that rest turned into 10 months and I still felt in pain although slightly better for not working.I put in for early retirement on grounds of ill health and got it last year.i have now been out of work for 2years and don't regret it at all I just couldn't do it anymore.sometimes I have no energy after being up for 2hours and the weather certainly effects me greatly.Was referred to pain clinic who were useless and discharged me after the first app the consultant treated me as if I had wasted his time as he said he didn't have a magic wand that would take away my pain as it was pain without injury.my lovely go then retired and the new go couldn't believe the amount of medication I was taking and over the past year has reduced and changed things so I am taking the least amount and still having pain relief.i think at the end of the day you just keep going until your body says enough and you physically can't do anymore.Things are now a struggle as my work pension is very small and I'm scared to apply for pip in case it gets refused as I do have good days ,but some of the bad days are very bad.Hope this helps ,this is just how I had to make the decision to stop working.just keep going while you can your body will stop you when it's had enough.take care DawnXx

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