I’m new on here and I have been diagnosed with Fibromyalgia but I’m in denial ….. 🤦🏽♀️
I have suffered over 9 yrs of immense leg pain due to broken bones and plenty of operations & therapy on my leg the nerve pain was so bad that I wanted it chopped off 😔, so here I am still suffering but pain all over and totally need sleep 24/7 , I work part time (17 hrs in job 31 yrs) doing plenty of Overtime but struggling just to do my basic hrs , work doesn’t know about my Fibro , but one of my coworkers do and advised to go to H.management as I’m having a lot of moments were I can’t remember what I have to do at work (betting shop cashier) on the computer 🖥 I doing plenty of money mistakes and it’s like I’m looking into a massive black hole to try and remember what is expected of myself which is starting to concern my family & work friends , as I do suffer from all the symptoms that come with Fibro xx
Written by
Missy2006
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Hi and welcome to the club nobody wants to have to join.
It's a difficult one as you can't expect work to understand unless you are up front with them, they can't help if they don't know. You are protected under the Equality Act 2010 and perhaps you should seek an occupational health assessment to see if reasonable adjustments can be made to enable you to stay in employment and make life a little easier for you. I was so anti having an assessment but it was the best thing that could have happened and has enabled me to stay in employment for many more years than I imagined.
We can all suffer denial and find it difficult to accept the diagnosis. My diagnosis comprised the rheumy writing fibromyalgia on a piece of paper and saying that's what you have go and research it as I haven't got the time to explain it to you. That was it. I got into the hospital car park, sat on a bench and cried. I had never heard of fibro. Then I pulled myself together and thought okay so I'm still the same person I was five minutes before I had the label so what's changed , nothing except the label. Then began the research period and learning what suited me and what didn't. That's the hard bit as what works for one may not work for another.
I have good colleagues who laugh along with me, not at me, when I make errors or what comes out of my mouth isn't what my brain is thinking. I have a series of laminated sheets with step by step reminders to help me remember what the various stages are in my job. Very useful when the fibro fog descends. The reasonable adjustments enable me to take more breaks if necessary, I have a decent chair, car parking space just outside the door, modified uniform, longer hours in summer, shorter in winter as I can't drive in the dark.
Have you had or discussed with your GP referral for CBT or pain clinic or both. CBT isn't for everyone but if you go in with an open mind it can help. Alternatively you could investigate a referral to one of the fibro clinics. I went to Guy's and St Thomas's in London. Very helpful, one stop shop as I saw rheumy, physio, psychotherapist etc they then put a plan together and sent it to my GP.
For me diet plays a huge part, no processed foods or refined sugars, if I stray which obviously we all do, I pay with increased fog and IBS and the dreaded fatigue. Doesn't work for everyone but helps me. Pacing is important too, on better days don't go hell for leather to get everything done as you will soon find it leads to a flare up. Moderation is everything, do a little then rest and stop completely before you feel shattered.
Lastly and most importantly is the support of the lovely folk and admin team on here. Fibro folk understand other fibro folk and their problems so never be afraid of asking any questions, someone will answer and help.
As I’m not sure about putting everything on here just yet 🤦🏽♀️ As I have mentally suffered for 30yrs (in silence) totally exhausted now so ,Yes I’m going for therapy finally as my family and work friends were getting concerned and I just put it down to Perimenopause but according to 5 Drs I’m not as I do have a lot of Body pains when I’m working so it’s time to see H.management and explain my concerns as I am good at my job until I get a “Senior Moment” which my friend now calls it a “Sam Moment” least we can have some Craig ☘️ And I am Irish ☘️ so I have a fantastic sense of humour 😂
Glad to hear you are getting some help, do hang on in there, it does get better. Please do not feel pressured to put anything on here, it really is up to the individual person how much to disclose and when or if in fact to disclose anything at all.
Irish - my mum's Irish and I think I inherited her sense of humour, mattoid-mags is my partner in crime on here and those who have been long standing members are well aware of our mad moments and humour often in the wee small hours when the dreaded insomnia strikes. It's not all doom and gloom on here, we have amazing members who are photographers, knitters and crafters etc so we do occasionally post other things too.
I must agree with Dinkie, I can agree with all she has said as my experience is very similar to hers. I'm a bit unusual in that I don't get depressed due to it; I get angry, which helps me, because I'm a bit of an old battleaxe when on a crusade! I do get SAD though, especially when the nights draw in and the weather gets foul.
I had little to no help from my GP, and not much more from Physio. I have researched and found out all I could by my own efforts. I felt quite let down as I was a nurse, but, hey! I'm retired now, so it's immaterial.
It's a beast of a condition. I haven't seen a doctor for nearly four years, even my jabs come via the District Nurses. I have had some help from Occupational Therapists, wheelchair, walker, some other bits and pieces. Mostly I buy my own.
Nearly 3 years ago I moved from Hampshire to Wales, and the pressure is now off. I hadn't realised how much the old house was affecting me, but there were too many stairs and steps! My bungalow is like Mary Poppins, Practically perfect in every way!
Hello and welcome, I agree with Dinkie you do really need to have a chat so they can fully understand what Fibro can be like on a daily basis, Dinkie has written a really helpful reply and giving good advice in moving forward, sorry too read about your leg pain you certaintly have been threw the mill and cannot be easy standing on your feet with your job. I wish you well in making the next move xx
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