Fibromyalgia and work

[SL72]

Hi

Are you still working or have you had to give it up? I am contemplating giving up work as my Fibro has got worse...in constant pain and fatigued...waiting for blood test results at mo.

I have worked full time for nearly 20 years but over the last 5 years I have had to reduce my working hours from 37.5 to 28 then to 22 and now again to 16.5. My employers are being very supportive and I'm hoping that this reduction in hours will better suit me...but if not my only other option is to finish work.

I have not taken any sick leave for nearly 16 months and have dragged myself into work regardless of how rubbish I have felt...my concern is that I can no longer sustain this and am feeling extremely overwhelmed at the thought of any physical exertion (especially related to work). I have an appointment to see occupational health to discuss my health and managing this at work.

Realisation has hit me hard...even though I love my job my health is more important...and I am really suffering and struggling ;0(

Not sure what to do if I give up work or how to go about it???

Thank you for reading x

[BlueMermaid3]

Hello SL72

I have lived with Fibro & ME for 36 years and managed to work full time for 34 years.

It was only after several severe traumas in a row that basically finished me off and I had to give up my beloved job.

I hope you are able to continue with your shorter hours.

It may be prudent for you to consult someone from the CAB just to find out what the procedure would be if you did need to give your job up.

Wishing you a peaceful day

Lu xx

[SL72 in reply to BlueMermaid3]

Thank you for that advise I will definitely speak to CAB

Sorry that you had to give up work...has it helped you manage / better cope with your condition(s)?

I've not felt this bad for this long before and it's shook me up a little...starting to lose my confidence.

Take care and thank you again x

[BlueMermaid3 in reply to SL72]

Hi

Apologies for the delay coming back to you.

Unfortunately due to the traumas I suffered my symptoms have stayed in outer space!

There is no way I could return to work as I would be a danger to everyone. I have had so many falls I have totally lost count. One minute I am standing and the next I'm sprawled on the floor!

It could be that you are "just" going through a very bad flare and that your symptoms will go back to whatever is normal for you.

I hope all that made some sense!!

Take care

Lu xx

[SL72 in reply to BlueMermaid3]

Thank you...yes making sense. I only work 5.5 hours a day 4 days a week (hopefully reduce hours real soon) and I struggle getting up and out of the house...and then I'm good for nothing when I get home. Starting to feel inadequate as some days I can't even cook a simple dinner for my husband and I. He is very supportive but sometimes doesn't get it.

Thank you again 🙏🏼X

[Jaxie64]

Hi there

I think you are very brave to work with this illness. I had to give up work about 16 years ago. Not really any choice in the matter. I was in so much pain all the time, my supervisor kept sending me home. My work Managers were very supportive and I truly loved my job. However, there is one thing to consider and that is, your health is very important. You only have one body and must start to look after yourself. Working through the days when you don't feel up to it, is only going to make your health worse in the long run. Believe me, I've been through it. I should have stopped long before I did. I ended up having to have 3 disc replacement surgery in my neck. FMA, ME. I kept ignoring the signs and pain because I was so busy at work. I didn't want to let my colleagues down. Unfortunately I was almost collapsing at work before I had to give in. Don't do what I did. Listen to your body and try to understand what it's telling you.

If you think that you need some time off work or even need to stop work, then you probably do need to. Don't force yourself and suffer; it's not worth the risk to your health.

Take care xxxxx Hugs

Jaxie

[SL72 in reply to Jaxie64]

Thank you so much for saying what you did...it's so true...one life and we need to look after ourselves. I need to be strong enough to give myself permission to take that step and not guilt myself feeling like a failure.

I wish you well and have taken onboard your words of wisdom and experience

Thank you 🙏🏼

[maggie2798]

hi I had the same problem and I finally asked my employer to finish me,which happened about 2 weeks ago.i cant lie it was a shock when I received the letter and sorting benefits a nightmare but I felt I had no choice as I was just going to work and trying to recover enough for my next shift and feeling dreadfull all the time.i still have flare ups but I can cope better with them not havin the added pressure of going to work but its scary.

[SL72 in reply to maggie2798]

Ah thank you for sharing this with me...you are very courageous to take this step and I wish you all the best. I'm starting to put myself first and recognise that something has to give as I can't carry on like this.

Thank you 🙏🏼

[60Chrissy in reply to maggie2798]

Maggie hope you don't mind me asking what process did you go through. Did you sign on sick or have an assessment and don't have to sign on every week? I've had a lot of work stress which has floored me and I can't seem to get back to managing the tiredness that I feel which then goes into full blown muscle pain and complete echaustion on a daily basis! I've worked most of my life and now 60! My doctor has had me o. Phased return doing half days st the moment but I am not sure even how I am coping with this! Which I am not as I get hone almost desperste to just shut down and colapse in a heap! It is a scary place to be and I am more afraid to tell anyone as we all know Fibromyalgia is scu an incisable illness. i dont rhink I can face signing on to get financial help as with Fibro fog I just go on melt down trying to sort things! I would like to think I am picking up slightly as now taking 5 HTP which helps with serotonin and melatonin so I am hopeful. But work us so demanding! Id help with benefits were all spelt out and made easier then I woukd consider going down that road. I wish you well 😀

[maggie2798 in reply to 60Chrissy]

hi Chrissy

I went from a full time position to doin about 30 hours.t.hen went down to 14 hours over 3 days with a day off in between and couldn't cope with that.i got esa when working 14 hrs which is 73.1o per week this was over a 2 year period then work ley me go in as and when I could.eventually I had to ask work to finish me on health problems which they recently did esa have told me I need to send my p45 to them when I get it and I think I get a bit more money .I get council tax relief and have applied mortgage intrest relief I am trying for pip but not 2 hopefull .I am going to see a cab advisor next week .I felt I had no choice but to finish work as I was just struggling all the time but the benefits system is a struggle of its own.i think like myself Chrissy u would not even be thinking about stopping work if u had a choice.

hope this helps

good luck

maggs

[60Chrissy in reply to maggie2798]

Hi Maggs thank you for your reply it was bery helpful. I agree that it is not a choice to not work it is a cruel forced hand that pushes us into a corner with limited choices and very little empathy or underdtsnding from our benefit system!

I have struggled over 12 years with Fibromyalgia and as it is an invisible illness the struggle is harder as very few people, particularly employers recognise that we have limitations. I don't want sympathy from anyone just understsnding and a little support and maybe on really bad days a little encouragement!

Anyway just to say I finally asked for a blue badge as I found myself not wanting ro go places with my family as I would end up exhausted and no energy to walk back to the car. My doctor said for years she would support my application. I think it was an emotional block to apply as I just did not want to give in that I needed the support! I can park near the shops now and my confidence has grown that I don't fear being so tired when I go out. Plus parking for me was a nightmare and stressful as it hurt my hands/arms steering etc that I just gave up going places locally on my own! But now with the disability badge the parking spots are bigger and easier to get into! I sometimes feel people give me funny looks as I don't have physical disabilites but I dare anyone to walk in my shoes for 24 hrs and see if they would come up smiling!!

Also go to a website called Rethink - it is to do with mental health but it has a filled out example of a PIP form which is really helpful as sadly it is the wording that is important when you complete these awful long winded forms.

I finally applied for PIP and they gave me motorbility component which allows me to have an automatic car. Massive help as I used to cry driving to work and it was less than a mile as my ankles felt like there was acid pouring on them and ao much pain in my feet and legs! I would sit in the disabled car park in tears wondering how I was going to do the next task of walking to my place of work from the car! God only knows how I get through the rest of the day! The disability car has made a huge difference as it is automatic and lots of buttons to move the sest forward and upwards along with a moveable steering wheel! I am so thankful for this support because it has helped me continue working. Anyway I am off to bed as it is 2.58 a.m. 😂 I was sooo tired that I went to bed at 7.30 p.m and woke up 5 hrs later! So I have had a lovely long chat with you hopefully helpful which makes me feel good and a nice cuppa but off now for some more z's I hope. Take care 😀

[Whomovedmycoffee]

Hi SL72,

I wrote a long reply to you and managed to lose it looking for a link. So here is the condensed version.

I am in the same boat as you, I've been battling to stay in work for over 7 years. I am going through the internal struggle of whether to stay in work or not at the moment. Work costs me a lot health-wise, in my homelife & social life as I have very little energy after work - I crash & my pain & other symptoms are worse. Work itself can be a struggle.

I worry that staying in work will impact my health in the long run.

Occupational Health can be very helpful. They certainly were in my case with adaptations to my desk set up & voice software.

I read somewhere on this forum that it can be better to take redundancy if it is an option instead of medical retirement if you are younger. The CAB will be able to advise you of the best course of action.

I wish you all the best with working this out. X

[SL72 in reply to Whomovedmycoffee]

Thank you...lots to think about and act on. Glad I posted here as you've all been so helpful and supportive.

Thank you again 🙏🏼X

[60Chrissy]

Hi sorry to hear how difficult things ate for you. I am with you in what you are going through as lonewise I love my work though things are difficult st the moment as there is an exprection for me to do various taks which are out of my limitstions and that does not sit with my employer. I tecently spone eith my pension company and they said if you cut your hours down through a disability then the employer still pays you pension as if uou are working dull time as long as it is documentednin your contract why you have reduced your hours. Not sure if every employer/ pension works that way but that's what I was told with the teacher pension.

If you cut down due to disability does the DWP make up your wages? I could not afford to cut down due to mortgage and two car loans. What is anyone to do to live if they are too ill to work full time and have to reduce their wages because they have to cut their hours down!! Life does seem so unfair! Hooe things work out for you.

[60Chrissy]

Thanks for your comments. I would love to give up now! I actually love my job but also agree it is really hard and such a challenge for me every day. You are so right about having a life and making memories. At the moment I am bed to work and I do ask myself what is the point of it all!!! There has to be more to life than just being in pain and misersble but I have to admit when I am in work I don't have time to think of the pain which is a kind if break for me but I pay for it later as it is painful walking back to the car plus I am exhausted! I don't even want to talk when I get home and usually fall asleep on the chair! No doubt these next few months will be making decisions of what is best for me to do....no choice will be easy. Have a good day 😀