Please Help

Hello, I am new to all of this and feeling quite overwhelmed!!

I am 23 and was diagnosed with Rheumatoid Arthritis about 5 months ago. I work 40hrs and a week and I am also studying for exams.

The methotrexate and other medley of drugs still make me feel quite sick and my mood swings are so unpredictable! the pain is bearable some days and awful on other days.

Any tips on where to start, how to go about daily tasks and just generally managing everything?

thank you :)

Last edited by

19 Replies

oldestnewest
  • Hi Sorry to hear about your diagnosis. I think the best advice at this stage is - be kind to your self and pace your self.

  • Thankyou, I am trying x

  • sorry for your illness but your in the right place with people who understand its early days yet but if it gets too much give the help line a ring they are lovely people who will help,take care

  • Hello, do you know if you can you call the helpline after 6?

  • No, the helpline is open Mon-Fri 9.30am - 4.30pm, free from a landline. You could email them though if those hours are difficult on helpline@nras.org.uk

  • Hi. You need to give yourself a break. Re exams; see if can get mitigating circumstances. I'm a lecturer so I have helped students do this. You may not be able to rearrange the exams but you may get extra time and be able to sit the exams in a different room where you can walk about and stretch.

    Working 40hrs a week is tough. I had to go part time once I was diagnosed. Take every day as it comes. But that doesn't mean not looking forward.

  • At the moment I haven't told many people. Part time would be perfect, not sure it's very realistic though. I work in quite a small office, Any tips for telling my work that I'm struggling?

  • Being honest is the best policy. Next time you have a flare up let them know. It's difficult but telling them is the best thing to do. That way you can be supported. Good luck

  • Hiya ccw93 & welcome. It is difficult in the early days, I think most us would attest to that. What may be making things more difficult is the way you're feeling due to your meds. Your Rheumy team are aware how they're making you feel aren't they? If your symptoms can be addressed you'll cope better, it's no quick fix but you learn to adapt & listen to your body, if your joints are complaining rest them, they will thank you for it.

    Pacing is the key, that'll probably be a whole new learning process. Have you taken a look through the NRAS website? It's packed full of useful info, treatments, research & personal stories nras.org.uk

    You don't say which other meds you're taking but if you're not replacing enough folate that can make you feel rough. I've been on MTX 6 nearly 7 years & do well on it but it's a whole different story if I don't take folic acid each day (except MTX day), I'm rubbish frankly! Even the dose & how & when you take your meds can make a difference between doing ok on them & thinking they're the devil incarnate! Steroids can be mood altering for many but each of us are different so it stands to reason we'll all react to our meds differently. They're necessary but we need to talk with our Rheumy if we're struggling. If we're in control of our meds & any side effects things can change for the better. :)

  • Yes I have made the team aware of how sick I feel, they have just suggested to stick with it until my body adapts? Not to sure how long that will take!!

    I'm learning to try and be patient , only discovered the NRAS website today, it seems to have a lot of info available.

    I'm taking folic acid every day (apart for the mtx injection day), I'm also on naproxen, hydroclorixon twice a day, iron tablets, the yellow stomach blocker ones and I think that's it? I normally take them all together in the morning after my breakfast.

    I have had two steroid injections and the hunger and my mood swings were ridiculous, I definitely want to stay clear of steroids if possible.

    Thankyou for your message :)

  • Hello, sorry to hear you're struggling at the moment, the first year or so is a particular struggle - getting used to meds, lifestyle and accepting the illness and the impact it has. Just try and take things day by day, don't be to hard on yourself if you need to make adjustments or ask for support, do things bit by bit and try not to give yourself too many tasks to do each day, pacing yourself and listening to your body is really important. Take care and keep in touch with us x

  • Thankyou, that is all a lot easier said then done! But I am really trying got take things slow and a day at a time x

  • Yes it is unfortunately! I don't think there's a quick fix answer. It's good you're trying and I think that's all you can do at the moment and get support from your nurse. Really hope you feel as ok as possible soon x

  • Hi and welcome. This website is a great place to find support , as there are loads of people in this forum who are going through similar journey's to yours. I was diagnosed with RA about 6 years ago and have tried a myriad of treatments and therapies which unfortunately did not help me at first, however, I think its just about perseverance and being patient, giving the treatment time to work, and not being afraid to speak to you rheumatologist about pain relief, which should help. Also doing gentle exercise in the mornings usually helps as well. maybe speak to your rheumatologist about speaking to the rheumatology nurse specialist, as they are usually pretty gd with advice regarding medication and the various side effects and pain.

    Hope the information helps and hope u start feeling better soon. x

  • Thankyou :)

  • Take everyday as a new day , this doesn't have to rule you but you will have to make small significant changes, half of the battle is knowing your not Wonder Woman or just a regular you, your a you with some limit is now. I always find heat good for my joints, at the end of a day and hands being soaked in warm water in the mornings gets the hands moving better. Best part is no one knows you need that little weird boost in the mornings lol!

    I wish you the best managing your pain and treatment!

    Xxxxx

  • Hello and welcome :) I was diagnosed in early Nov, so it's early days for me too. I'm not on as many meds as you, and not MTX, so my nausea settled within a month or so, and the weird swooping feeling went a couple of weeks after that. Its horrible feeling sick and dizzy, so you have my sympathy!

    It sounds like you're VERY busy. I went half time as a way of coping with feeling so ill and tired all the time, even before diagnosis. If you can afford it, I recommend it. :) It might help to know that, once you tell you employer you have RA, you can ask them to make 'reasonable adjustments' that are likely to help you do your job effectively. That might include starting later, working short hours one or two days, having more breaks, or even working part-time. The Equality Act says they must consider your requests and make the changes that are reasonable, though what counts as 'reasonable' might be quite limited, since they're a small employer. Still, you can ask, and the onus is on them to show why what you've asked for isn't reasonable.

    If you need to keep working f/t, then the best advice I can give you is to do nothing much else for a while. I just worked, slept, rested and swam for several months. It does get better, and you should be able to do more as time goes by, but your body needs to adjust meanwhile. Hang on in there!

  • you say you work in a office no much of activity there ,get to the gym( softly )and hydro trust me am 51 and 15 years of A S and working aprx 50 hrs a week on my feet no fear good luck girl

  • It's a constant balancing act between keeping active enough but not overdoing it.

    I was able to have a scribe for my exams because of the RA in my hands and there can be sources of help at colleges and universtities for students with disabilities. It's worth asking. You are juggling a lot and you might have to make some tricky decisions. If you are working full-time can you afford to get a cleaner, just a couple of hours a week?

    Getting the right drugs to treat RA can take a while and as your condition changes your treatment will change as well. The side effects can take a long time to settle down, longer for some people than others, but don't just put up with feeling sick ask your rhematology nurse or GP if there is something which might help settle your stomach.

    Have you spoken to any other specialists? An occupational therapist can chat with you and make advice on changes and aids and adaptions both at work and at home. Stay in touch with other people with RA.

    I've had RA since I was a baby and I'm now 35 but I still learn more about it all the time and still benefit from the support from other people with the condition.

    I hope everything settles down soon and good luck with your exams xx

You may also like...