I have commented on a few posts but this is my first OP.
This week marks the first anniversary of when strange pains developed all over my body, which I later came to understand as Sero Positive RA. Prior to this I was working and active, swimming around 60 lengths, twice a week. Within six weeks I couldn’t even dress myself. I eventually got seen by rheumatologist in May and began treatment. I’ve been lucky to have regular nurse led care and I’ve had Pred injections when really bad and have had my dose of MTX increased twice so far.
I have a fantastic husband and feel fortunate to have a loving family but I feel like the last year has been like wading through treacle, with just about everything being bloody hard work. I know we have to ‘be patient’ and ‘keep trying to find the right meds’ but my usual optimism seems to have deserted me and I find myself dwelling on the last year, when I usually look forward.
Does anyone have any tips on how to deal with coming to terms with the new norm that RA brings?
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I was diagnosed in 2022 with the same. I am now into the first six weeks of sulfasalazine after having a long period of time on just Nurofen and codeine, and then trying Methotrexate. I felt exactly like you for a long time & have finally started to feel like I am coming out of a haze, altho my hands are still a bit stiff in the morning. My feet were painful for ages before I started this stuff. But, I am now getting to be more active again, I even went skiing over Christmas. So, from my own v limited experience, be patient with yourself. Know that you are going to look after yourself and take more time to rest. Ask when you need help.
The bonus is that you’ll always have a good excuse to get out of anything you cannot face attending (hahaha!).
try not to put pressure on yourself and try not to feel guilty when you feel unwell, easier said than done, if you keep putting pressure on to keep up with everyone else you just end up even more tired and in pain, pacing is best and just plan one thing not try and fill a day with lots of extras, easier said than done and takes a long time to accept being that way but it will help.
We all have a story to tell on how it effects us,how it's possibly changed our lives ,having to give up things we loved to do. Not only physically but mentally too. Apart from medication there's also talking therapies available with no charge. The list is as you can imagine quite long. Our mind is just as important as our body
⁷When I was first diagnosed just over 7 years ago someone on here talked about 'spoon theory'. I found it extremely helpful as did my husband. I showed it to him and it helped him understand my fatigue. Which I still have. Anyway below is a link I have just looked up. I'm not sure it's the best explanation, someone else may have a better link or better suggestions. It's a start and it helped me.
I've just tried the link above and it's much more than just the article I was sending. If you look up spoon theory RA it will be quicker. Hope that helps
I know how you feel, but there are only so many spoons to use up, and then you get them replenished only if you pace yourself. Mainly I would say be kind to yourself and don't be hard on your body, it's trying hard and adapting/getting used the new way of functioning.
I'm saying this in hindsight, I gave my body a hard time ie being disappointed and harking back to before diagnosis.
I also would say listen to everyone then choose what suits you, your body and your circumstances.
when I wake up each morning I assess my pain and stiffness level per joint and then decide what I can an can’t do that day. This way I’m not disappointed and each day is s surprise.
Note my diagnosis is Adult onset Stills Disease which for me manifests as rheumatoid disease and is less severe than RA I think .
I do a few easy stretches when I waken and before getting out of bed. I agree it really helps me know I'm likely to feel like in the first few hours of getting up.
Hi, I was diagnosed in 2009, but I know exactly how you feel. It took me 18 months to get to a point where I could take complete charge of my life again. Your new norm is a very fluid thing. With hard work doing my exercises religiously, the help of my rheumatology team and NRAS I was in remission after just 4 years. I lead a very active life and getting through all the adversity has made me stronger and more compassionate than I was before. Self management is an important part of living with RA. If you haven't done so already, I suggest you contact NRAS, have a look at their website. You'll find a lot of reliable and helpful information. SMILE -RA is a series of interactive modules which are extremely helpful for self management.A long story cut short: there is hope and thousands of people live very well with RA. I'm sure you will be one of them.
it takes time and sometimes a lot of time and nearly 5yrs for me and I still have moments of “grief”’for the old me! I accept she has gone but finding the path that is right for you is the tough one what works and what does not is a huge learning curve. Sometimes funny as you try a new exercise- mine was going to yoga and realising I could not get to the floor so slid down a wall much to the amusement of the group and then getting back up liked a beached seal! It’s a learning curve.
NRAS and the Wren Project are great for a chat about where and how to move forward. What’s right for you could be wrong for me but you just need time and PACE and rest too!
your head space is important so recognise when you need help or talk too. My hubby knows if I say can we sit in the garden it means I need a chat.
Thank you all so much for the replies. I think it is a kind of grief for my old self and an important part of that will be acceptance. I have found NRAS to be very helpful and reading posts from people who actually DO understand has made me feel less alone. Your advice is greatly appreciated. I am generally a glass half full kind of person so hopefully when I'm in a bit less pain I'll get back to my optimistic self. Hopefully I'll be back on this forum with a post about my much improved self in the not too distant future. Until then I will continue to wade through the treacle knowing that there a many wading with me and a few more that have got though to the other side and are waiting for me to catch up.
Acceptance…….don’t get in a state & do go with the flow…..once you get the right drug combination you really will start to realise RA can be lived with well …& you can live a good life.
I’m living proof…diagnosed in 1997…with Sero+ RA…..started off optimistic….then when the drugs didn’t seem to work….felt hard done by…..but it has all turned out for the best ….27 years on..I lead a life comparable to my peers…….& the odd hiccup is overcome. So gave it time & hopefully you will do the same.
Of course you will read of those who do have a very hard time…but don’t let that pull you down……we all make the RA journey with trepidation…..but most of us do live a good life.
Read all the posts here..but don’t dwell on the unfortunate few who haven’t yet found a good place.
I hope you soon settle on the right meds …… & start living a good life again.
Well, you probably haven’t yet reached your new ‘norm’! It took two years in my case to find a treatment that I can tolerate and also works. But I have had a very good (nearly normal) year 3 with RA after two years of intermittent hell similar to what you describe. Be sure to track your symptoms and drug reactions and be sure to be proactive with medical care as much as possible. And try not to despair too much (easier said than done, I know!)
I too, am in a very similar position to you. It is roughly 12 months since I started having odd aches and pains, some unbearable. Initially, I was told it was my age, I'm 52, which seems to be a default answer and it has since taken me 12 months to get a diagnosis of sero positive RA.
I feel like I can't remember much of last year at all. I just plod from one thing to another, not fully engaging with anything. I am finding it hard to accept that I can't work at the pace I used to or fit as much into my day. What is equally frustrating is getting people around me to understand what it's like and that I'm not the person I used to be, at the moment. I'm finding it hard to accept and I know I'm putting too much pressure on myself.
I am now on methotrexate, today will be my fourth dose, and I have had so many comments from friends along the lines of - oh well you'll be better soon. I have fatigue like I've never known but all I need is a good nights sleep apparently- if only! Its got to the point where I want to shout and scream at people around me to try and make them understand.
This may sound like I'm really ungrateful - I do have some fantastic people around me too who are genuinely trying to see life from my new perspective and help me.
I know it's going to take time to find my norm but I'm there wading through that treacle with you and believe it or not we will get to the other side.
Oh Mel, I could have written every word of this myself! If one more person says, ‘Hi, you look well’, or ‘well you’ve got your medication now so you’ll be ok in a couple of weeks’ I think I’ll scream!
I’ve been reading lots of positive stories this last few days and hope that we will, one day, get out of the treacle and lead the best life we possibly can.
I wish I did . Wading through treacle is how I express it to family and friends. 7 years down the line I’m afraid this is still the case . I live in hope one day it may improve and I make the most of my good days even if there is payback. Can’t predict the good days and if I pace myself and still get payback I feel I missed an opportunity so I now just go for it .
That's kind of you Mel. Unfortunately I'm not so great still. My dose of MTX was increased before Christmas and unfortunately I feel no better. I've been in touch with Rheumy team because I was supposed to have a review but they're 'short staffed and can't tell me when that will be'. I have 16 painful joints in wrists and hands and seven more in ankles and toes today. Feeling a bit fed up and am worried that I will be of no use when my daughter gives birth to our first grandchild in 3/4 weeks time. Week 8 is still early for you, they say 12 weeks is more realistic for results. I'll keep my fingers crossed for you (well I would if I could 😂) xx
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