Hi all

Been suffering now for 2 year only got diagnosed with Ra last year , it started in my feet now my hand , been on Methotrexate for 3 months with no change , now on Sulfasalazine until I see the rheumatology consultant again . I get the pain and medication you have to take , but the one thing I can't get my head around is going from being very active doing most things myself to doing nothing but to sit about and putting things off , and losing interest in most things even work is becoming a burden and stressful with explaining my condition asking for reduced hours , they don't understand only asking will I get better and when can you return to normal hours , this is my first post I hope someone can understand im still trying to get my head around it all ?

6 Replies

  • I'm not sure you ever 'get your head around it' - I am 29 years in. It can take some time to find the right combination of drugs to get your body under control. Everybody's - dare I say it - journey with RD is very different and individual so there are no hard and fast rules as to how the disease will progress but hopefully with the right combination of drugs you will be able to lead a relatively normal life. Because of the nature of RD it varies so much even day to day in how you feel and it is so hard explaining to people that some days you are able to do something and another you would not even attempt to do it. I wish there was a way to get off this particular roller coaster. Farm

  • I too am new to the condition 2013 was the start for me and I can put up with the pain but not the pain of people not understanding and dismissing it as nothing ,I will never get my head around it and the old me as long since walked out of the door ,but the friends I have made on this forum have been a real life line for me ,we have all walked or are waking the same path ,you are young and I am sure you will find the strength needed to work your way through the mine field of rd.

  • I've been travelling with RA since about 1999. Most of the time it has been reasonably under control but they have to get your meds sorted out first dont they. We often talk about pacing ourselves, when I was first diagnosed I was on a research trip to Paris and was advised to try to do one thing (interview usually) a day. So you're hopefully moving forward but taking a rest in between.

    I think people find it better to keep moving, gentle exercise building up is a good idea - I think NRAS have leaflets online about this. Once the weather is a bit better I will try to do a couple of days a week visiting a local pool where I can do walking in a supported environment. But its taken ages to identify somewhere comfortable which isn't too busy.

    Keep talking to people on the forum, I've found it really helps


  • Hi 5teve,

    Firstly welcome to our humble abode-I hope we can offer you some sound advice and good support over the coming months (and beyond).

    Farm123 is absolutely right in that everyone's RD journey is unique and finding one's own way is hard at time which you are clearly discovering.

    I've learnt that there a 3 kinds of people when it comes to responding to the fact that I have been diagnosed with RA - those that backed off out of my life as fast as they could (you could almost see their arms spinning backwards cartoon style - to those I say a polite 'Goodbye'). There are the fixers who want to fix me so that my condition will go away and all will be alright again (to those I try to extend patience - when I can - because in the main they are coming from a place of caring but don't quite know how to respond to my new situation... There are the odd 'fanatics' who I tend to try and avoid or I tell them straight 'this ain't going away and I am living with it the best I can. And no boosting my immune system won't help!'. Finally there are those who get it and support me, or at least try to and see that I am the old Ali on the inside just plagued with RA stuff on the outside, for these I have respect and gratitude because they treat me no differently than before RA arrived other than offer to carry something for me, open a jar if I'm struggling, meet in a nearer coffee shop so I don't have so far to travel - the little things that make it easier.

    As for the sitting around and putting things off I am going hazard a guess that you are feeling a little overwhelmed by things at present (pain, meds, work issues, fatigue etc) and it may help if you spoke to the NRAS help line for some moral support. Maybe speak to your GP about some emotional support via a counsellor (quite a few of us here have/are finding that helpful) and/or tap into a NRAS support group if there is one in your area. IF THIS LAST BIT IS COMPLETELY OFF BASE SORRY!

    Activity wise I have brought my bike indoors and it is on a turbo so that I can cycle in short burst when and when I find the motivation -doing something similar may help. The warmth of a swimming pool is soothing this time of year but it can be hard to find a 'quiet' session.

    All the best


  • Hi Steve I was diagnosed last year and started exactly the same as you, feet first (for about 18mth without realising) then in my fingers. It took about 6 months to get it straight - was on methotrexate and hydroxychloroquine - had some steroids they really helped with the pain in my feet and my feet are perfect now - have other niggles elsewhere but can see some improvement - hang in there......

  • Hi

    I don't think it's easy to learn to live with & I won't say it will get easier it just gets different. I've been diagnosed for 13 years. Like you I started my journey on methotrexate then sulphasalasine, followed by injections, followed by infusions.

    As everyone responds differntly to the drugs it's a bit of mixing to find your particular thing that will work for you. The injections worked for me for a couple of years (humira & enbrenel). I've had my first 2 infusions of Rituximab with no improvement. But I carry on my journey and hopefully I will find what works for me.

    I like many others have sought help for my mental health. when somebody says to me you don't look ill my reply is you don't look ignorant! Usually stops them.

    Good luck on your journey & seek support from those closest to you. Also phoning the helpline is a great service.

    Rachel x

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