How do you know when it's time to stop working? — Scope | Disability forum
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How do you know when it's time to stop working?

lmcarthur
lmcarthur Community member Posts: 12 Listener
Thanks for taking the time to read my post , I am only 38 but I feel as though I can’t deal with the constant pain of having rheumatoid athritis and fibromyalgia any more I have had these conditions for around 15 years but feel like now I can’t cope any more I feel like my body is turning to concrete I struggle to do even the simplest of tasks now , I am working as a cleaner 20 hours a week in a busy supermarket I can’t keep it up  much longer i only work 4 hours a day but by the time I finish I literally feel like I can’t take one more step or I will collapse with the pain , I don’t want to spend the rest of my life like this but I don’t know where to turn to , I feel like I have to give up work now for the sake of my health but I just dont know where to turn to and I feel like I would be giving up if I gave up working , has any one else had to give up work and when did you know it was time to do it x 
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Comments

  • vikingqueen
    vikingqueen Scope Member Posts: 1,411 Disability Gamechanger
     You need to speak to your rheumatology team, if you are in that much pain your meds aren't working. I have rheumatoid arthritis and my team are always at the end of a phone if I have a problem. I have it quite severely and had to give up work, and it took 3 years to get my medication right but I was never left in pain. Also speak to your GP about pain relief. I hope you get sorted soon
  • lmcarthur
    lmcarthur Community member Posts: 12 Listener
    I see the rheumatologist regularly but lately been over the phone same as my gp I take a lot of strong medications already including morphine patches but it makes no difference they both know how much pain I’m in but tried all sorts of combinations of drugs and nothing helps x
  • vikingqueen
    vikingqueen Scope Member Posts: 1,411 Disability Gamechanger
      I feel for you, I know from experience what its like. What medication are you on for your RA? 
  • lmcarthur
    lmcarthur Community member Posts: 12 Listener
    The current medication I’m on for the ra is hydroxychloroquine been on this one for just around a year now x
  • vikingqueen
    vikingqueen Scope Member Posts: 1,411 Disability Gamechanger
        That doesn't sound enough, have you never been on a DMARD or a biological, methotrexate is the go to drug they usually suggest, I'd be ringing them every day if I was is so much pain. Poor you, it must be awful to be in so much pain :(
  • woodbine
    woodbine Community member Posts: 11,521 Disability Gamechanger
    I had to give up working at the age of 38 almost 24 years ago, I was in a position where I couldn't continue to work, you need to look up what benefits you might be entitled to the link below will be a good place to start.
    https://www.entitledto.co.uk/benefits-calculator/Intro/Home?cid=bded53cc-52c2-4af8-b4db-1d308c05c8e0
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi there 

    I would not advise to just give up work but to go through a dismissal on medical grounds as giving up voluntarily could affect any future benefits and you could also miss out in any potential compensation your employer may give for this 

    Get a copy of the company policy on medical dismissal and read b4 you do anything 

    Most cases you would go off sick and get ssp until this runs out after 28 weeks and then go through the process of medical dismissal or I'll heatlth retirement if eligible 
  • lmcarthur
    lmcarthur Community member Posts: 12 Listener
    thanks everyone for taking the time out to reply to me x
  • Cressida
    Cressida Community member Posts: 1,014 Pioneering
    edited February 2021
    @lmcarthur you have my utmost sympathy as a fellow sufferer. I'm not clear if you have been on methotrexate or biologics. If not ask your rheumatologist about the possibility of a new drug regime. I was diagnosed in my early 30's and I've had RA for over 30 years now and the drug regimes have changed a lot over the years. Biologics are life changing for a lot of people but there is a strict criteria to qualify for them. I think all you can do is try and pace yourself which is obviously hard to do with a physical job. Try and rest as much as you can. It's so easy to try and push through pain but that just makes things worse. Not sure what you could claim if you gave up your job. Have you looked at claiming PIP? I have continued to work (sedentary job) as I had no choice really as I had a mortgage to pay and was divorced with a child. Edited to add the NICE guidelines, I hope the link works. 

    file:///C:/Users/cemh/Downloads/rheumatoid-arthritis-drug-treatment-for-rheumatoid-arthritis%20(1).pdf
     
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @lmcarthur

    Thank you for speaking so honestly about how you feel, it sounds like you're going through a rough patch right now but hopefully the community can be here to support you.

    I would advise speaking about how you feel with the health professionals in your life, to see if they can alter your treatment or suggest anything different for you.

    You may also want to look into a pain clinic, so you can get help to manage your pain. And Scope's helpline is always there if you fancy a chat :) 

    Take care
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  • cupcake88
    cupcake88 Posts: 1,273 Pioneering
    I’m sorry to hear that your in so much pain I feel so bad for you I hope your pain feels better soon and you can feel more comfortable could you not be given stronger pain killers maybe ? 

    I personally suffer with mental illness and I knew I had to stop working when I really lost my mind and I started to suffer with pychosis . Once I was on my medication I did try going back to a different job where I was bullied and treated horribly no understanding for my disability I ended up taking legal action for disability discrimination towards the company . 

    I always feel like not  working is some thing I’m going to have to except I just can’t do currently and there’s a chance I could maybe work part time again in the future but not full time It saddens me it really does so I understand where your coming from 


  • [Deleted User]
    [Deleted User] Posts: 1,651 Connected
    With due respect to the OP, if you have ongoing health issues by rights you should've been signed off as incapable of working to begin with! In December 2015 they put me on ESA and told me I was too "sick" to work even though at the time I'd been doing voluntary work for over 20 years.

    And before anyone even goes there, I was signed off as sick yes, but at the request of my Parents who have never accepted my desire to work for money, especially Dad.

    However I am now over 40 so it should be up to me what I do with my life, I don't want the fact I'm disabled and on the cusp of being type 2 Diabetic to be the be all and end all of my life.


  • Tori_Scope
    Tori_Scope Scope Posts: 12,488 Disability Gamechanger
    Hi @Cressida :) It doesn't seem as though the link you've posted is working, as I think perhaps you downloaded it rather than it being an online ePDF version.

    Is this what you were wanting to link to?
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,488 Disability Gamechanger
    Hi @lmcarthur :) I just wanted to check-in to see how you were doing today? 
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  • lmcarthur
    lmcarthur Community member Posts: 12 Listener
    Hi there thanks for checking in had an appointment with my gp last week who agreed I was not fit for manual work anymore so he has signed me off on a monthly basis to see how I get on x
  • Tori_Scope
    Tori_Scope Scope Posts: 12,488 Disability Gamechanger
    No problem @lmcarthur :) That sounds like a positive thing, as you've been in so much pain. I hope that being off work helps to relieve the pain a bit! Have you been up to anything recently? Is there anything you can do to keep your mind busy? 
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