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Working with rheumatoid arthritis fatigue

Posted , 11 users are following.

sam58547
sam58547

Hello I dont know if I can realistically stay in work

I work in a clinical setting in the allied health professions (NHS) seeing patients (children). However I'm usually running late and I cant keep up with my report writing either - It takes all my energy just to focus on the patient.

I have asked work for adjustments - they agreed I needed them. However they ignored occy health recommendations so we agreed a compromise but it took 2 years to get there. The interim period made me stressed and depressed and i got really unwell had tremors, vomiting, urinary incontinence and my performance at work suffered.  Occy health recommended that I pace myself  Ideally by having a small 5 minute gap between patients. However that  wasn't practical for them to implement. One of the compromises was that I would get a laptop to do reports when it suits me - everyone at the department get admin time - my adjustment was to do this at home. Work our now moaning that this isn't giving them much flexibility and would like me to come into the department. I don't know if i can through the ball ache of the adjustment process again.

They again complained that i'm slow are would like me to keep to time naturally. I do try but this morning i woke up in pain and just completely out of it - i knew if i went to work id fall behind and be criticized. Normally i'm not really emotional but i cant really face the criticism and embarrassment of not being able to keep up and do what I'm paid to do so i just called in sick

My job is vocational I've been doing it for a decade but I've not progressed thats disappointing but not really my priority as I just want to stay in work. I thought about starting a new career but its scary because i'm already vulnerable and what i do is vocational - so I cant transfer easily. I thought about going back to uni to do something like accountancy more paper based but this has too much room for error - my fatigue and brain fog makes it difficult for me to study and concentrate - Ive spent 3 month studying a working related topic so its familiar and could tell you all i know in about 5 minutes. I really dont know what to do - if i move to a different department  i'll have the  same problem. I need a job thats not physically demanding, not patient orientated and doesn't require much brain power. However I dont want to take a minimum wage job when i've got a degree and average paying job which Im good at albeit slower then everyone else

I'm in my early 30's and have had rheumatoid arthritis for about 5/6 years now. I have tocilizumab infusion once a month and hydroxychloroquine. Without my treatment I cant do basic tasks and am in constant agony. My pain is more manageable now but my fatigue is really problematic. I get up go to work - finish eat and go back to bed. I used to be on methotrexate which really helped me but had to stop because it was damaging my liver. I also have addisons disease and take fludrocortisone and hydrocortisone to manage that, but stress makes that harder to do. I have hypothyroidism (levothyroxine), vit d deficiency (pro d3) and coeliacs disease so I keep to a gluten free diet.

I guess I dont know how im going to cope long term - I have no plan - no ambition and when I do have a rare good day and think about how I can work on improving myself I find im soon bought back to reality. I dont have any social life and just need to vent really. Sorry its so long

0 likes, 11 replies

11 Replies

  • gaz1234
    gaz1234 sam58547

    Posted

    Hi

    Your not having a rant or venting your just doing what we all do. The Doc's give us our meds whatever they may be and we take em, sometimes change them a bit but in general we just hope like hell they work and hopefully in the main they do. But lifes for living so we gotta do all we can to get off our backsides n get out and enjoy things. I dont mean to sound like some preaching type or a clever bugger im honestly not, ive had this RA fora hell of a lot of yrs and its bloody sore. So we can be sore indoors watching the tv or be sore outside having a bit of crack with our mates and a laugh. No contest eh. Take care and all the best

    • sam58547
      sam58547 gaz1234

      Posted

      Hello

      Thanks for the reply. I cant even focus on TV just sleep which also hurts - but I guess I need to focus more on improving my social life. I think it might distract me from work and the fact that im just getting slower, thicker and still living at home. I've lost contact with my old friends as they're all over the place. When we went out nobody wants to wait an hour for you to walk down the road. I've also developed a love for velcro and elastic waistbands as I can get these on myself - but its not really a good look for anyone. Especially when my friends are super pretty and dressed up to the nines. I need more sedentary activity like cinema and eating which I only do very rarely now. I need more friends which is depressing in itself

  • martin31040
    martin31040 sam58547

    Posted

    Hi, I know exactly how you feel regarding the fatigue, I've had RA over 15 years and fatigue has always been an issue, it's part and parcel of RA and I suppose many other chronic diseases, in my case I seem to be able to do so much and then it hits me and I feel totally done in, fortunately I am retired now because I definitely couldn't work, I think I read it's a high percentage stop working within 2 years of getting RA.

  • robert271163
    robert271163 sam58547

    Posted

    Hi Sam 

    So sorry to hear how much you are suffering, Personally I would be contacting an employment law solicitor asap. For them to ignore occy health and making you work as hard if not harder is against the law, They should be making all reasonable changes to enable you to carry out your job, If you were registered disabled they would have to do it. If you have the recommondations from occy health and can prove they are ignoring their advise my guess is you have a good case of unfair treatment and if you were to leave a good case for constructive dismisal, either way I personally think you have a good case to sue the arse off them. Go seek some legal advise even if it is with the CAB or a free solicitor session. 

    Best of luck 

    Robert 

    • sam58547
      sam58547 robert271163

      Posted

      Hello I could have at one point but I think I'm too late now- you have to do it within a few months of the last incident. My boss argued that the adjustments weren't reasonable as it would affect the service we could provide. HR did however give me other adjustments but they weren't put into place until i went on sick leave. There was just a lack of will but I had unison who in hindsight I think were too tolerant = its when the charged for employment tribunals. My priority wasn't to screw them over just get conditions I could work with. We were eventually heading for a tribunal but really, I didn't want to ruin any chance of future employment  as its a small world. I was depressed and lacked confidence but should have just gone straight to a lawyer as things wouldn't have got so out of hand. I got bullied by my boss and a senior colleague who were snide and derogatory also my boss wanted to put me on a disciplinary for capability. She was saying that patients had complained about my manner  - she wouldnt tell me who, but  all of the complaints were verbal and worded exactly the same and went back 2 years - some of them on dates that I wasn't even in the department. Apparently i don't even have to be present to offend people. I did complain about bullying and lack of adjustments to HR, my boss left before they  investigated but HR agree that the complaints cant be held against me, that was a condition of my return to work that and having at least the compromise adjustments in place. I really should just get a new job but i just don't feel fit enough and when i tell them that i need adjustments, I cant imagine anyone wanting to deal with the hassle.

       

  • lisa82473
    lisa82473 sam58547

    Posted

    Hi, I am so sorry to hear about your health issues and difficulties at work.  I feel like your co-workers should have much more compassion for you than they do especially considering the type of work you do. I really think they need to look at themselves in the mirror.  I totally get where you’re coming from regarding the fatigue.  The fatigue is currently my biggest and worst symptom.  It is terrible.  I go to work everyday and then pretty much home to my recliner.  I walk home from work to force myself to get some exercise but it is only 5 blocks. I have RA, hypothyroidism, low Vitamin D, and Syogrens.  And to top that off I’m over weight.  I take Methotrexate, plaquenil, Levothyroxine, and Vitamin D.  Nothing helps the fatigue.  I work at a hospital but co-workers really don’t get it about how difficult RA is.  They think it is just plain arthritis so they don’t understand why my meds make me sick all the time.  Same with my family.  I’m pretty sure they all think I am just lazy.  I used to walk every single day and loved it.     But then my legs started to feel like they weighed a ton....almost like I had weights around my ankles whenever I would walk.   Now It feels like such a chore instead of a pleasure. 

    Is there an associate health department where you work that could maybe help you think of accommodations that might make your day a little easier?

    I just want you to know I feel your pain and I hope you can find some relief somehow.

    • sam58547
      sam58547 lisa82473

      Posted

      i think its pretty absurd that everyone starts to blame you for not exercising or eating nutritiously enough. Ive tried the Mediterranean, keto and paloe diets have avoided the nightshades and also went dairy free and vegetarian. I think aside from making me miserable they dont really have any effect. I think  being coeliac is restrictive enough. Work colleagues were complaining that I was eating too much junk and thats why Im ill. I eat either a leafy salad, jacket potato with cheese and butter, or a M&S GF sandwich ploughman - they dont sell it anymore - with a chocolate bar as its good for the soul. I know its not great but i dont think thats horrific. The colleague that complained is really underweight and eats half a wrap with a measly portion of carrot and lettuce with a tangerine for lunch so maybe by her standards what I eat is a bit much. i obviously told them its none of their business but have stopped eating chocolate at work. i know they think I'm thick, lazy and incompetent because they've told me as much - ive told them its out of order but somehow telling me I dont have a brain cell is constructive. She was like im having to carry you and give a 100% when your lust giving 50% and slacking. We have completely different workloads but they are a pretty bitter bunch and ive obviously developed a reputation.  They've suggested that i retire to life on benefits given that I have no responsibilities. Well yes of course because theres nothing I want more to live with my mum for the rest of my life. Occy  health have been very good but my old boss and colleagues dont get it at all. i have to admit that  Ive been a little but stubborn and stupid because part of me has stayed out of spite

  • carol303055
    carol303055 sam58547

    Posted

    Hi Sam, it’s so hard, isn’t it? I was a specialist nurse in the NHS (was being the operative word) and I was much older, about 55, when I was diagnosed with psoriatic arthritis. I initially had sick leave due to pain and problems adjusting to meds and took flexible retirement but was increasingly off sick with infections I couldn’t get rid of as well as flare ups when I had to stop my meds.  OH was good with me pointing out to my managers that the Disability Act had to be taken into account but I knew, on one occasion when I returned to work after a long absence, I had to finish. I couldn’t keep my eyes open in a clinic. I was so embarrassed. Thankfully it wasn’t my clinic but it was as clear as that and I knew I couldn’t carry on.  Of course, I was much older at 60 then, though I  still couldn’t get my state pension till I was 66 but I didn’t feel I had a choice.  I agree, look and take advice re your legal position but it is difficult if you know you can’t do your job.  Your colleagues only have sympathy/ empathy for so long then get fed up with ‘covering ‘ for you (me!)  especially given the current demands and problems within the NHS.    I really feel for you and your dilemma.  I’d worked for the hospital 43years but like many women had a reduced occ pension due to time off to bring up my family. And whatever anyone says money (or lack of it) is important.  Good luck and very best wishes Carol
  • treezsh
    treezsh sam58547

    Posted

    Hi Sam, I so empathise with you and of course you arent having a rant, it is a very debilitating disease and I often think the fatigue and brain fog are the worst part.  I worked as a physio in a busy department and had a similar experience.  You really need to get the managers, your colleagues and if not the union involved.  The last thing you need us to not have your work, you can still perform in albeit less capacity, this should be the goal I think.  People are often surprised that our wonderful? NHS is not more accommodating or even "kinder" to its staff who have health problems....as we both know that is not quite the truth.  Your social life will return when you feel better, in time, and for now I would just concentrate on getting well and being kind to yourself.  You have the support of all on this forum and we know and care.

  • Rowbirdie
    Rowbirdie sam58547

    Posted

    Many others have written encouragements for you so I only have a few thoughts to add. Is tocilizumab working well enough for you? You say the pain is manageable  but the fact you have some pain and a lot of fatigue makes me wonder if another biologic would work even better. Can you discuss this with rheumy consultant esp in the context of work difficulties?

    I m sure you have seen the NRAS booklet on RA and work to get as far as you have in getting compromise from your managers. But I completely understand it's the stress if it all that makes the RA worse. Is there any possibility of working part time so you can build in some kind of exercise and social activity. I expect you are doing your job better than you think, but have succumbed to negative thoughts as your colleagues are under pressure.

    Gently remind them that although your disability is hidden these working  arrangements have been decided by management to accommodate your disability. Please hold on in there as a beacon for anyone with a disability to be treated fairly !

  • anthony1801
    anthony1801 sam58547

    Posted

    Hi Sam,

    I am sorry to hear that your situation as an AHP with RA has not been very well supported. It sounds like your manager wasn't very supportive at all.....as an AHP myself and a manager, and also with a recent RA diagnosis, I am hopeful of a more compassionate and encouraging experience.

    Did you return to OH and ask for a review? Would it be worth asking for an OT vocational assessment either via OH or looking privately to have one done? A formal report might help if you do end up having to take a formal HR route with your employer.

    Good luck and I hope things improve for you..... We put so much into becoming AHP's, it would be wrong to lose someone just because of RA

    It really does disappoint me to hear of cases where we cannot take care of our own 😞

    Take care

    Anthony

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