Work and Fibromyalgia: Do you still work? How do you manage?

work aren't taking my condition seriously as I am now for the second time having a diaplinary hearing tomorrow for having time off because of my fibromyalgia. I don't feel it fair cause it's a incurable illness that I have no control over ! X

Hello, I've just joined. I was diagnosed with Fibromyalgia roughly one year ago at the age of 18, after a lot of conflict with GPs, etc.

About two years before that I was diagnosed with depression and anxiety. Lately, chronic fatigue has been arguably more of a problem than the other symptoms, such as chronic pain. I've just had more blood tests, where there was a lift of about 15 things to test for, because every single medication they've tried me on has failed or made me very ill so they haven't put me on anything for a while. Just waiting for the results now.

Anyway. Work has been a massive struggle over the past few months. And, being only 19, my career is still at it's beginning, so this is a massive problem. I've just hit a "stage two sickness trigger"; my workplace works on like a 3 strikes and you're out basis and you don't get very many sick days. I hate my job for a number of reasons, I have no motivation to go. But I need the money. I can't not have a source of income over £13,000 as I'm almost completely self-dependent now. I'm so worried I haven't even told anyone about this. I don't really have "friends" anymore and my parents aren't particularly supportive. I need a job and I'm desperately applying for more every single day, but I'm also worried I won't come across the right job, and illness will overtake once again. I just want a job where I can work from home some days, so I actually have the time to sort my life out! (Waiting for referrals to Physiotherapy, Fatigue Management, Pain Management, and Cognitive Behavioural Therapy).

The worst part is, I always wanted to be a Police Officer. Do you think that's impossible now? Maybe I can get my health under control and be happy again.

Any advice from fellow sufferers would be greatly appreciated.

Thank you for reading.

Molly

I haven't been able to work (on my PhD) for the past two years, even though I tried part-time, due to fibro-fog, pain, exhaustion, forgetfulness etc. Although I think my PTSD also contributed to it. 

I have no income at all and am dependent on my partner and gifts from friends.

Stopping and starting for ages was so frustrating: the fear and getting used to work again, the excitement when you start to feel like you're getting the hang of it again, the soul-crushing disappointment and confidence-killer when you realise that you haven't been able to keep up to the correct pace or progress needed, despite trying so hard. 

I wonder if I'll be able to get back to it sometime and go through all that again.

Thanks for all the comments in this thread. I'm sorry that others have this too, but it's also good to hear that I'm not alone in struggling with this. 

no one should suffer alone and its great to know that there are others out there suffering the same.x

Hi,

I have just had to reduce my hours at work from 40hrs a week to 20 due to severe fatigue and pain in the afternoon. I knew it was on the cards so I've been very careful with money the last couple of months, so I have a small cushion for a little while, but I'm concerned how we'll manage on just half my income.

I had originally asked to work 30 hours a week as if worked out that we could afford th st, but they offered me a job share if 20 hours, knowing that I had said in the initial meeting that I couldn't afford to drop that low. I think they were expecting me to decline the offer and either push through and stay full time or (their preferred option I think) to resign. I called their bluff though and accepted the proposal. They were flustered at that (which is why I think they thought I'd decline). I'm actually looking for another job with a few more hours a week, better pay and conditions/benefits, as my current employers don't pay sick pay. So far there hasn't been much.

sometimes you have to play people at their own games and manage as much as possible it makes you stronger despite the pain.people don't understand why you feel like you do just because its invisible and when people do you know they probably have it themselves.

I try my best to function whilst at work despite the chronic pain. I do not get very much sympathy from those around me especially if it's a particularly bad day and I'm on my feet all day. They make me feel like all of this pain is in my head. I'm thinking of leaving. 

I work for myself part-time and in recent years I've actually had to turn people away because I've been so incapacitated through my Fibromyalgia. Naturally, this doesn't sit well with a self-employed person and I've found myself increasingly concerned about how I will manage in the future. This coupled with fear of letting people down and becoming a burden to other family members has left me increasingly anxious. I know I've suffered with the condition for many years, but I'm aware also that along with more prolonged and intense 'flair ups,' the concentration issues are becoming so much worse. Additionally, the more angry I get with the condition, the greater the pain, so I'm having to rethink how I manage the illness to improve my quality of life.

After years as a carer (I also have two children with Aspergers Syndrome) I've finally realized I need support myself. I'm fiercely independent and asking for help from others hasn't come easy to me. Fear, coupled with wanting to maintain my independence for as long as possible, has prevented me from looking at options beyond my immediate family. Now I realize that I need to look at other options rather than become a greater burden to them. The decision  to ask for help is mixed. I'm both relieved and saddened, but I'm going to have to come to terms with it and start looking after myself from now on, if i'm going to make life more bearable.

I guess it's about creating balance in my life. I know I have more to give, but for now it's my time to heal.

Coping with hidden disability, both in Aspergers Syndrome and with the Fibro is a lifelong challenge and is never going to be easy for others to understand, but at this juncture in my life I'm concerning myself less with others ignorance and channeling my energy more into what I can do to improve my quality of life. I hope I find the balance I so desperately crave.

I have been signed off my work since xmas eve 2015. This was due to daytime sleepiness which appeared to be caused by severe sleep apnea. I returned to work in june for about five weeks as was compliant with cpap machine but several days later my sleepiness came back. I'd best mention that I am a bus driver and am not allowed to drive at the moment. I was signed back off work by sleep medicine consultant as they want to do further tests. Meanwhile I have been to Rheumatologist who has s Fibromyalgia. Don't know when I will return to work or even if I should even ever drive a bus again. I could not live with myself if i harmed someone else. I don't think that the pain, tiredness, bain fog, and the many other symptoms ould allow me to work 12 hour shifts. I was recently put on an antidepressant which i then stopped due to the awful side effects (i can't seem to take any kind of medicine). I also have very bad anxiety which has returned. Unfortunately I am now due to go on esa benefit and have rent arrears which i worry about and hope to get sorted out soon. I just can't seem to focus at all and finding it difficult to understand things.

Sorry for long post. I suppose Fibromyalgia has led me into a downward spiral (if that is what is causing my problems). Wrist aching now just holding ipad. Seem to never stop moaning and my temper is something else to behold!

Hi everyone,

this thread seems to be quite forgotten, but the topic is interesting so I'd like to draw your attention to it Don't hesitate to share your story!