How do I carry on? :(

I have ra & fm for 5 years managed to work full time until 12 weeks ago diagnosed with 7'' ovarian cyst ( now know benign ) 8 weeks post op n having very bad flare up, so much pain and am due back at work weds! Very worried I have a very busy job and a husband who can't wait for me to get back to work. Crying lots totally fed up of ill health. Sorry I'm feeling very sorry for myself , anyways words of wisdom will be very much appreciated x

10 Replies

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  • I would suggest you need to contact your GP or rheumy team to discuss meds and if there is anything extra they can give you to help. You have just been through a very stressful time and RD does like to hit at times like this especially if your meds have had to be stopped or altered. I do think that whenever I have had to have ops I take longer to recover than dare I say a 'normal' person.

  • hi Maud1970,

    So sorry to hear how bad you are feeling. If you need to talk to someone about things please feel free to call us on the helpline:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Best wishes

    Beverley (NRAS Helpline)

  • So sorry you are feeling so low. The helpline is really worth trying. Also think you should speak to your gp, maybe you need a bit more time before returning to work. This disease loves to hit you when you're at your lowest. You've had a big op (I had a similar cyst removed a few years ago), and we just don't get over these things as quickly as other people.

    I do hope you get some respite from your pain soon. Thinking of you. M x

  • Thank you so very much for replying. I'm at my wits end. I think I'll ring the helpline tomorrow. I've worked full time for 15 months and never told them officially about my ra, I'm worried now as I went off sick with one thing and am returning with another . I need to go back for financial reasons . My husband was very supportive about my cyst and the surgery but not so much with my ra

  • Unfortunately RD is very hard to explain to somebody else who does not have it - it takes a lot of understanding and acceptence from ourselves yet alone anyone else. We can look relatively normal and some days are 'normal' and others very hard and there is no obvious reason as such for our bodies to behave like this. Try googling the 'spoon theory'. I would imagine there a quite a few people who have to have extra time off after an op therefore there should be no reason as yet to bring RD to work. Please do not put off speaking to someone tomorrow. xx

  • Wow! I've just read the 'spoon theory' it's amazing! I've sent it to all my family to read. It's helped me so hopefully it will help them. Thanks so much again . Xxx

  • Hi maud, I'm so sorry you're having a tough time and glad you found the spoon theory helpful, it really does explain it well.

    If you've not told your work about your RA it sounds like now might be the time to do it. As many on here are now referring to it as rheumatoid disease rather than arthritis that could be a way to go as it seems people listen more to what you have to say as they aren't really sure what it is and don't just dismiss the RA as, we all get a bit of that as we get older!!! Hopefully your employer might surprise you and be very supportive, but if you don't tell them, they can't help you. Chat it through with the nras team as you plan too as they are great at working things through with you. Going back to work too soon may be counterproductive in the long term so I hope your GP or rheumy team is supportive too. Good luck and I hope you soon start to feel better and also get the support you need. Rx

  • I admire anyone who has this rheumatoid disease and manages to hold down a very busy full time job. Having surgery really throws the immune system into confusion but it will settle down, maybe you could ask if it is possible to have some steroid, to get you through this flare. I can understand you wanting to get back to work for financial reasons, you will get there, this is just a temporary blip. I hope you feel a bit better very soon.

  • My pain is worsening and I'm back to work tomorrow , would steroids help? Can they be given by gps? Taking naproxen & paracetamol which are giving slight relief but need something else too. This is just horrible .

  • I feel for you & all you're having to cope with as well as RD. It sounds as though you're not too well controlled at the moment & my guess is recovering from your op is taking it's toll with you having flares as your body is trying to get better from your op & your RD isn't aiding that.

    Regarding steroids, I have been on & off them intermittently since first diagnosed & obviously prescribed them when my consultant felt it was necessary. I'm back on them at the moment & have been for a while which I'm not too happy about as wish to do all I can to preserve bone density but hey ho. Maybe a word with your Rheumy nurse would help & explain just how you're feeling with things as they are & you really need to be more controlled having to return to work.

    Regarding your h not understanding how RD affects you, mine has full & complete understanding as he attends each Rheumy appointment with me & it works for me too as I don't always remember everything in the consultation what with brain fog & I find it difficult to write notes quickly now so we put our two heads together which helps. If you look through the NRAS site together, maybe it will help him nras.org.uk/

    Hope you get some good advice & are on the right track soon.

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