Daft question but I suspect you have all been there and got the t shirt too!
Had RA for over 30 years and Osteoarthritis has joined in to keep it company. According to my bloods I’m very well ‘controlled’. Good news. However - and there’s always a ‘but’ isn’t there?! I find increasingly I am exhausted, with accompanying pain- not unmanageable -but a regular ‘friend’ when I do anything at all of any note. This can just be lunch out with my lovely family. I know the hospital are looking after me very well and I don’t honestly think there is much else they can do but I do feel a bit despondent that my battery is winding down with no recharger in sight. Compared to many of you I have a very easy time, with a very supportive family but I feel a bit low that I’m not as able to pace life as successfully as I’d like to. Hints and tips from those of you who follow the same path would be very welcomed. It’s a challenging time of year for so many of you and I am appreciative of this group. Kindred spirits! Happy Christmas!!
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Gillyflower70
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One of the most challenging things to manage is fatigue, and all the things that come with such as pain. It can be relentless. The only thing I can say is pacing yourself and not overdoing things or you will probably have a payback day next day.
Regular wee rests, whether you sleep or not help manage things.
I feel the same way. I just had a consultation with my RA doctor. The lab work looks good but I am fatigue every day. There is always some slight joint swelling here and there. On the days I feel less tired, I tend to overdo with my wrist joints (hence more pain and swelling). I have to remind myself not to overdo. Swimming/aquatic PT seems to help reduce my swelling in the toe/finger/wrist joints. When my joint swelling comes down, I tend to feel more energized.
Me too. And I find it so difficult not to overdo things on ‘good’ days - then have a couple of payback days. I have no advice for you as I don’t seem to be managing very well myself- just sending understanding feelings.
Thank you all for your caring replies. It always helps knowing you’re not alone and not being a wuz! I appreciate you taking the time to share thoughts and hope everyone has a much healthier year in 2023.
Happy Boxing Day! I am in the same position as you now and it’s a b…….r! However well controlled my RA may be the new kid on the block has jumped up and down and shouted ‘now me’! Got it in my back, shoulders and knees are not brilliant. The fatigue that goes with the pain is the killer and I have yet to work out how to stop doing all the things I need to do all at once…….
Sometimes sense prevails and I sit down and read in the middle of a bit of gardening but mostly I don’t have an off button and wear myself out and then wonder why I’m tired and hazy the next day. I have no tips for you apart from don’t overdo it as it’ll all still be waiting to be done when you didn’t do it the day before! We are the same age and infirmity I think having had conversations on here before so keep on keeping on and I hope we don’t get any worse!
Ah thank you! Indeed you put it in a nutshell and when someone wise gives us the secret to pacing and not finishing ourselves off we’ll be bounding about like spring chickens!! Until then, as you so wisely say we just keep on, keeping on!
Happy Boxing Day to you too. I appreciate that people have taken time out to answer. Onwards and upwards!!
I think it is always worth asking your rheumy whether this is as good as it gets for you. Keep notes of daily aches, and number of times/days you have to stop something prematurely because your energy collapses.
In the last year I have been hit by osteo, all over, which I’m finding debilitating And it’ s potentially masking whether my RA is actually a bit active (my bloods are always good, so only sign is tender joints - which could all be OA). Anyway my doc has increased my MTX by one dose to see if this makes a difference - in a few months time of course!
What you say makes complete sense. I think I’m feeling slightly down as I know in my heart of hearts not much else can be done. My head careers ahead of my body! Can’t tolerate methotrexate anymore, though it served me well for many years. A trial on biologic didn’t work. I have been well cared for but the RA has shown as subdued in blood tests . It just doesn’t feel like it!!! I am thankful not to be worse but just occasionally I wish I wasn’t so restricted. That time of year when one’s faulty bits don’t help keep the head above water. However I’m paddling fast into the new year and wishing the best for you all!
You're right, many of us can relate to that feeling. I was diagnosed with secondary OA when diagnosed with RD 14 years ago. It doesn’t seem go the better controlled I am the less the fatigue. I'm in the fortunate position that I can go lie on my bed for a couple of hours in an afternoon snuggling my dog, my type of siesta, & if I fall asleep I don't feel guilty, I must have needed the extra couple of hours. I find lying on my back with a hot water bottle round my neck & then switching to my side eases the tension & pain in my back, neck & other any other joints which are sore at any one time.
I am very similar to you. RA for 20 years. Had a great Christmas Eve and Christmas Day with family but I did all the cooking and the buffets, then yesterday I couldn't move my hands for or close my fingers for a while. I had to gently coax them into movememnt and they were very sore all day. Today hands moving fine but shoulders rebelling. Even after 20 years I never know what this disease is going to throw at me but on saying that my disease is well controlled and I am relieved that I got through the important days with my family and I am resting up now.
Completely sympathise and understand. I was very spoilt and did very little which frustrates me as I’m a ‘doer’ at heart. Sometimes we just have to accept we are not Wonderwomen!
I’m like you had RA over 25yrs and it’s the fatigue that’s the problem. When I pace myself I’m not too bad but on days when I feel great I do tend to overdo things and pay for it later. I’m my worst enemy. I find I know when I’m coming up to my next round of biological infusions cos it’s a lot worse. I think if anyone doesn’t know our situation they think we’re being lazy cos on outside we can look well. You’d think after all this time I would know better but I’m someone that likes to do everything myself and still finding it hard to ask for help.
So to you ,and to me , we have to do things in moderation and not push ourselves. Take care x
I have been relatively well RA wise…however was invited out Xmas Day lunchtime ….lovely meal and I didnt have to wash up. I was penned in either side, at the table….for about 3 hours. Didnt want to move everyone as I was getting uncomfortable. Since then my back has gone into spasm….Boxing Day cancelled….just about managing to get about the bungalow with incredible back pain. Note to self….REMEMBER YOU ARE NOT NORMAL! 🥸.
Ah yes! Poor you I so understand! Both for what happened but especially that apologetic feeling of not ‘bothering ‘ others!
We need to politely speak up, as in the end if we don’t look after ourselves we cause others more problems. Sounds easy and logical but then I just need to remember my own advice!! We are indeed in this together! So true.
Hello there.I understand what you are saying. I am 65 and same as you bloods all good, on methotrexate but it feels like my age has caught up with rheumatoid. I don't have the same energy levels that I used to have even with fatigue dictating my life for the 25 years that I have had RA.
My life saver is that I am an avid reader so feet up after lunch seems to fuel me for the afternoon. I can't keep up with busy friends and I don't try. Be kind to yourself is my advice.
Thank you for your sensible advice. I think I’m still coming to terms with ‘taking a break’ is actually productive and perfectly ok. Old habits to ‘keep going’ are daft. It’s about time I learnt the lesson! Great resolution for 2023 with possibly a bit of practice leading up……😉
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