hi can anyone help I feel I can't continue to punish my body anymore and and am on my knees but can't afford to give up work please help

[Davemayhead]

help me please I can't carry on hurting my body day in day out but can't afford nit too my GP doesn't know how to help me I already take bucket loads of pills but they never really help . I think the only way for me to give up work will be when the lights go out and the lid is put on my box

[Fadeddenimcutoff]

Hi, I have struggled through work with this condition for over 3 years. I was only diagnosed with fybromyalgia last month. The only real thing that has helped me stay in work this last year is a strict regime of breathing exercises and cold showers as learned from the 'Wimm Hoff breathing method. I am now at a point where I feel like working full time is too taxing even with my coping mechanisms.

[Dizzytwo Moderator]

Hi Dave, welcome to the group. You sound pretty overwhelmed and rightly so. Chronic long term illness is the pits. But its even worse when there is no cure or even medication to help keep you ticking over.

Would your GP give you a sick note for a little while? This may help you take a step back and maybe look into other thing that may be a help to you other than pills.

Have you had a look into benifits that you may be entitled to. That may help you cut back on your working hours. Have you thought about applying for PIP for example?

Here is the link to our own personal benifits advisor Janet. Why not give her a call and see if she can offer any plans to help you with monetary side of things. You have nothing to lose by giving her a bell.

healthunlocked.com/fibromya...

May I just give you the heads up on been able to lock your post to this community only before you post.

Also for privacy reasons if you are using your real name you may wish to go to your account and change it.

If I can help in any other way please just ask 🙂

Momo

[Davemayhead in reply to Dizzytwo]

Hi thanks for the reply sick note may give me a short break but I have to work to pay the bills I already have PIP but that would not stratch the surface of my bills etc I haven't worked all these years to loose my house or be forced to sell it to not work benefits wouldn't allow me to survive I just hope I am able to enjoy what I have worked for before this consumes me too much and I can't walk etc anymore . I have been diagnosed with FND CPS CFS and arthritis so it all looking good for the future ?? Have been like this for the past 10 years but I feel I can't push for much longer

[Dizzytwo Moderator in reply to Davemayhead]

Hi, have you been to pain managment or asked your GP for a referral?

[Polly-S]

Hello,If you complete working full time , soon will get a flare up which will keep you in bed for weeks - that happened to me. Finally last year I accepted my condition in full, quit work and started working on life change.

Yes, it is hard, the money are not enough, but when the flares start, I am not stressed about work a top of the pain.

In the beginning was feeling useless but began to accept the new way of life.

Now when I can, I help my son with his online business and started painting and crafting again after years.

This really helps me with the depression and I do it only if feeling well.

Found that more I am stressed the worse the flares are - so keeping calm

Keep strong

[Yassytina FMA UK Volunteer]

Hello Dave, a very good reply from our lovely Dizzytwo , differently speak too Janet , if you can get an extended sick note off work would help you rest at home and look into benefits , you sound like you’ve really tried too keep going but I am really hoping the help you get will let you spend more time at home then you will be able to adapt ,take care xx

[moo196 in reply to Yassytina]

problem with sick note, doesn't necessarily entitle anyone to be paid.

I'd suggest a long look at priorities- if the tablets don't work why take them?

My way forward was to look at other aspects of my life - diet, exercise, stress etc and giving up diet coke and everything else with artificial sweeteners in worked almost instantly.

I also accepted that I would need to downsize my house to be able to not work full time. Plus taking in an occasional lodger.

[Fifelassieo in reply to moo196]

Hi, can you tell me why you stopped taking artificial sweeteners, l thought about doing this, l did cut out some but l found there seemed to be sweeteners in nearly most foods so l found it extremely.difficult. What differences has it made for you. Thank you.

[moo196 in reply to Fifelassieo]

my pain almost disappeared within a couple of days... like a miracle.I read everything - from yoghurts to ketchup. Sweeteners in everything since the sugar tax 😭

[Fifelassieo in reply to moo196]

I will give it another go thanks

[Painny]

Hello, I can see and feel the pain…I lost so much…I pushed for work until I became a zombie

I’d suggest talking first to DWP about early retirement where you wouldn’t lose too much (they have a special dept, can’t remember the name) there is also citizen Advice B , at the moment seek advice

Once you know your financial position then speak to your employer

All the best

[Davemayhead in reply to Painny]

Many thanks will look into that one.

[Dinkie]

Have your employers suggested occupational health assessment? You are protected under the Equality Act 2010. I didn't want the assessment but my employers insisted and it has enabled me to stay in work with reasonable adjustments so I am so glad I attended the appointment. I've had hours adjusted to suit me, a modified uniform, carparking right outside the door, extra breaks if needed, handrails, ramps etc special chair. May be worth looking into. If your employers do not go down this route then they are leaving themselves wide open to a constructive dismissal case. Been there done that for my husband against his employers and won.

Good luck I do hope you find a way to continue.

[Davemayhead in reply to Dinkie]

Many thanks

[Merrrm]

Hi, stress is the nemesis of all fibro sufferers and your stress about working and the prospects of losing everything if you dont work is no doubt exacerbating your health decline. I really do feel for you. Been there myself. I'm somewhat ashamed to say that from a work perspective I benefitted enormously because of the pandemic and particularly the lockdown! I was able to work flexibly from home and have continued to do so. As a result my flares are less often and less severe. My overall health has improved quite a lot and I'm managing much better. The reason I've posted this info is to give you hope that your health could well improve if you are able to negotiate a working from home role. I know people who have completely changed jobs in order to do this. Might this work for you,

[Coogy52]

Hi Dave I was the very same after working at Royal Mail for 30 years, was in agony every day the last few years, had to just give it up in the end, I was only 50, but it's the Best thing I ever did. I'm still in pain but not as bad as wen I was working 40 hours a week. You will get some help off the benefits system, good luck 👍

[Qualia8]

This is just my experience strength and hope that I can pass onto others after having lived with this. I’m not a doctor or medically trained. What I’ve found is that I was

1. Too Harsh on myself - this is what worked to tackle other areas and I thought this must be the answer. It isn’t !

2. I was either undermedicating or trying to come off the medication. I got scared of any side effects and I’d been brought up that you don’t take pills and this really has hampered me from living pain free. being constantly in pain wore me down, depressed me and raised my anxiety levels through the roof. It removed a lot of my hope.

3. I wanted things to go back to normal when I had always had health problems

4. I stayed at work clinging to it until I lost it due to the amount of time I had to have off. I didn’t exercise my rights under the law to have adjustments made - I think I felt if I soldiered on this wd help my mental health . It didn’t. This was for a different auto immune disorder - but I could not believe that this could upend my plans. In a way in reflecting on this I think I was in shock.

5. Getting referred to a pain management team and being under the care of a specialist NHS fibromyalgia consultant- this took a long time to get going, but my reluctance to keep pushing for this didn’t help. I’ve had my first lidocaine infusion and also I’ve started physio to retrain my muscles.

6. Finally getting some control over over eating sugar and cake helped me lose weight which started a positive spiral. I’d stopped drinking alcohol so many years ago I felt entitled to snack on sugary food for comfort. It’s just my experience but accepting that reliance on substances and getting honest about the weight has helped me.

7. I use the spoon theory (on Wikipedia ) a brilliant idea of Christine Miserandino’s that illustrates the limits we need to place on ourselves and others to get through chronic illness.

I hang onto Max Ehrman’s words in the Desiderata “With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy‘

Wishing you and everyone else out there the energy and hope to keep striving,

Quailia

[Gaballetto]

I struggled away with my professional job, which was very physical, for 15 years after my diagnosis, then suddenly retired. Since then I have been able to concentrate more on all the activities I didn't have the energy for while working full time at that job.

This has given me time to really try to develop some strategies for managing my FM, and, gradually I have been able to do more and more. Then, when I decided I was too young to retire I found a job doing something completely different and just part-time.

In the current economic climate, where every employer is crying out for employees, I have been able to pick and choose from totally different part-time jobs, and found that, although I am not earning as much, I am able even to enjoy the work and feel good about it. I am now considering finding a second part-time job to up my hours and income to full-time, but in 2 different fields so I don't get over-worked and jaded in either of them.

Why don't you consider changing your job to work in a completely different environment, maybe where you can dictate your own hours, or even work from home so the hours you commit don't include travelling to and from? Is that a possibility for you?

[Al10]

Just to say, Davemayhead, most folks are like you, they can't afford to give up work. wouldn't want to give up the freedom and friendship that work offers. It's a huge deal losing that. Managing on what others like to call 'handouts' these days, is rotton and humiliating. Before things get worse, you might like to take a tip from others what have stood and cried where you are now. Today, you can choose to get up, go to work and just about get by. Lucky you!!

Don't wait to fix this feeling of desperation because if you do, you may find your body deciding for you. And that is even more crushing than where you are now; Choosing.

When you can't put one foot in front of another, lift, carry, drive, even in pain, you will regret not taking action before. When you are flat out and cant recover, week after month after forever, it's a horrid place to be. Relying on others. Life happens around you. You lose control. Decisions are seeming made for you as all other routes are barred. Life closes in very quickly whe you can't do for yourself.

Every day you push yourself, you are digging into tomorrow's energy stores for today. Every day you force your poor body to co-operate knowing you are hurting it. Fibros have poor sleep and thus recovery, so we don't heal our daily damage like others. Damage that doesn't heal, accumulates, causing more pain becoming chronic, intractable and causing more issues as we favour painful areas. If your body were another person, wouldn't you take pity? Give it a break? Try to make other cloth cutting arrangements? Instead you continue to make other stuff more important.

As a Fibro, I'm doubting you will go from just about managing to work, to dead. If it was your heart failing, then maybe? But really, the reality is you drag on, in greater and greater pain and disability due to your fibro and the damage you are doing pushing yourself. Remember the more damage you do, the more handicapped you become, the less options you have open to you to manage your pain. ie, moving around, walking, going for a drive for distraction and so on.

Sorry to be harsh but you might like to look at your current miserable options before they are diminished furthur and you are forced to.

I would love to go back to before I did permanant damage, I knew I was struggling but thought I would always push through. A fibro from young, I was used to pushing through pain. Damn good at it I was! Until one day, I couldn't. It was baffling and devastating.

See how quickly your life falls apart then!! When you can no longer hold the reins.

You could, take some sick leave and ponder your options assets wants needs desires. Talk to your GP. Maybe you will decide to carry on? Maybe you will cut your hours, ask for lighter duties? Or make a big change? Work self employed? Sell up, reduce your outgoings? Who knows? Brainstrom it.

When are you able to retire? 67? Can you last that long?

Don't do nothing and then, a little down the track, regret not looking out for your health. You don't want to be looking back on todays misery tomorrow and wishing it back because you are in a far worse state.

I do believe that Fibro doesn't need to be progressive, but only if we are able to avoid doing damage that doesn't have time to heal. If you are fighting yourself to keep going, that is almost certainly what you are doing.

I'm sorry to be so harsh but I can't go back. All I can do is warn others to heed their own warning signs. Your body is asking you for help. I believe the right thing to do when this happens is for you to kindly listen, and respond. Best wishes.