Rheumatoid arthritis- opinions on work/life balance from people with experience

[Seacrown]

Hi all,
I’ve recently been diagnosed with RA and am struggling to get my head around it. On decreasing steroids while the methotrexate kicks in. Some days I’m not bad and others in pain throughout the day with no apparent rhyme nor reason. I’m only three months in and I know the methotrexate had to get into my system, but from your experiences, how does your life change and what do you feel you can and cant do work wise? I’ve been off for 7 weeks, I’m a teacher , and attempted to go back twice in this time. Did two days both times and couldn’t cope and just worrying if this will be how I am from now on. Feels like I get told from all health professionals I need to rest and will need to really think about what I’m doing going towards but I just wondered from peoples own experiences how it had affected you in the long term and how your life has changed because of it. My head is all over the place.
Thank you and merry Christmas

You'll feel much better once the medication has had a chance to properly kick in and you've stabilised. Give it time. You also find that you do get used to the pain, as grim as that sounds. You may be in an acute phase before the condition settled down - that's what I had. It was really rough in the early days but things did improve a lot.

Thank you so much for your view, it’s hard to see past it all at the minute and it’s good to know things get better

I’m 44 and was diagnosed at 19. I manage to work full time as a teacher and am quite stable on good medication. I have had a few very bad spells between medications / while waiting for them to work but overall it’s never been as bad as the first year.

I agree you get used to the pain to a certain extent and I think you have to go through a grieving / adjusting process. It’s so hard at the start. I have found pain and fatigue management classes useful.

I really do wish you all the best. I promise it won’t be this hard forever.

My rheumatologist told me that I should be able to do 3 days a week working, but I’ve got other conditions alongside RA. I started biologics in the autumn and the reduction in pain has been significant so I can see how working again might be possible.

In the early days I could do one thing a day, like 30mins exercise, then be on the couch for the rest of the day. Then it improved and I’d just need maybe 2-3 afternoon naps a week. Recently I’ve pushed through the days as doubled up on uni study and managing that, but have brain fog on the afternoons. After about 4weeks of that I had 2 days recently I needed a nap. Hit a wall I suppose. I was diagnosed about 4 yrs ago, and I think mine is early stages so pain is ok. It should get better or at least manageable. I often wonder how I’d manage a FT job, but I think you’ll just get on with it, with a day off here and there.

I’m 44 and have had RA since I was 17. On biologics now, but I have a lot of wear and tear from old inflammatory damage - that’s what gives me the most pain these days, not the RA itself.
I work ft and tbh I am struggling now. I find many nights I’m going to bed same time as the kids, and it’s taken some time for me to accept that’s clearly what I need to do.

As pp have said, you do get used to the pain, and learn how to manage it and the fatigue. That said, for all I’m somewhat limited with how much I can do, I still have days where I do too much (mostly because I just won’t be told!) then find I’m wiped out the next day. Some days I can do more than others, and some days I manage the pain/fatigue better than others too. That depends on how I feel in general - I can cope with more when I’m feeling better in myself but if I’m run down it’s harder to manage.

Hi Seacrown, hope you're ok. It's a bit if an emotional rollercoaster, this, isn't it? I've just been diagnosed with psoriatic arthritis, and start methotrexate on Tuesday. Like you, I'm wondering how much this is going to impact my life - I'd just gone back to work when this started in October, having stopped two years ago because of health issues which I now realise were part of the PsA. I had a steroid injection about ten days ago, which has helped a bit, bit I'm so tired and everything hurts at the moment, it's hard to stay optimistic. How are you getting on with the methotrexate?

Can I ask if you are on methotrexate tablets or injections? Post baby arriving in April im due to transition to methotrexate (tablets) from the steroids I'm on now and I'm conscious of the transition between the two as I don't want to go backwards in terms of pain/ illness/ tiredness. I was in such a bad way pre steroids I don't want to go backwards whilst waiting for the methotrexate to kick in

My DH is 46 and was diagnosed just over two years ago. He is not yet stable, and has recently had his methotrexate upped to 22.5mg per week. He also has 200mg hydroxichloroquine per day, and daily omeprazole as he takes ibuprofen most days. He does a very physical job, but is self employed, and has cut back his work a bit, but he's very stubborn. He's been told he has osteoarthritis in his knees and hips too. If the new dose doesn't help (it's not so far after a month), they will look into next steps, probably biologicals. I think he still hasn't accepted the impact of his diagnosis and is still a bit in denial. He doesn't like to think about what the future could be like 😔