I have had the year from hell. Lots of pain and new meds which didn't work
.Finally bloods starting to improve but no energy just pain. I am selling my house lived here since I was 4 . I am 59 in November but need a bungalow. Dont want to go out cant be bothrted getting dressed . Wish to god I'd stayrf on medication from last year but got swapped by Consultant . New medication similar just had enough thanks listening
Dear Kath
I'm so sorry to hear you have been having such a bad time. Constant pain is so debilitating and when added to typical RA fatigue it's difficult to find the energy to do anything some days so I can quite understand how you are feeling. I had a very bad time 12-18 months ago but am now in a fairly good period at the moment and count myself lucky.
I've read some of your previous posts and see you have other health issues too which adds to your difficulties. I'm not surprised you're feeling so low. Have you tried contacting your rheumy to let them know how you feel and to ask whether your meds could be reviewed, or what else they could suggest in the circumstances. If that hasn't worked perhaps your GP could refer you for some counselling. My only other suggestion is that you could contact the NRAS Helpline so you can talk to someone about how you feel at the moment.
Having to sell the home you've lived in for such a long time is very hard but I'm sure a cosy bungalow will suit you better with no stairs to have to climb on any bad days. I've only managed to stay living in my two storey home with the help of a stair lift, a walk in shower and some gadgets the Occupation Health therapist brought me.
Be kind to yourself today, accept how you're feeling and think of it as just an off day. As Captain Tom suggests, tell yourself that tomorrow will be a good day. I find listening to uplifting music, watching some comedy videos on YouTube or a good book to escape into all help me to lift my mood. Who cares whether you are still in your jimjams or not!
Sending you my good wishes and virtual hugs.
Thank you. I am always being told i worry too much about what other people think
Hi Kath,
Sorry your feeling down , we all know how you feel. I’ve had a crappy 18months and I’m still struggling.
I’ve been taking Baracitinib and Steroids for the last year and I’m still in a constant flare with three out of seven days spent in bed.
I don’t care what anyone thinks anymore as I’ve learnt to put myself first! as a lot of people don’t understand what we go through on a daily basis.
Don’t worry about getting dressed, washed, or even combing ya hair, just try to get through the day with the help of some pain relief.
Please contact your Rhumy team or any helpline where you can talk through how your feeling.
I’m 65 and live in a bungalow and found it so much easier with RA.
Stay safe & well 🤗X
Hello Kath I'm so sorry to hear this and in a way I am doing the opposite in respect of trying to buy and move back to my family home of 51 years which has the facilities I need such as a stairlift and wet room and am encountering problems with this and my health. Way too much personal stuff to go into but I can appreciate how emotional it must feel for you growing up and living in a home you have only known. I was almost 5 when we moved to the home. Again on top of this you are trying to deal with your health and while your bloods have improved your pain and energy levels haven't. Please know that I hear you and as people are telling me, don't be hard on yourself and while there is so much going on emotionally, mentally and physically this also can impact greatly upon your energy and pain levels and also your well being. Again given the unpredictable times we are in will no doubt only serve to make it's unwelcome contribution to how we are feeling too. It's so hard and it does make you feel like as you put it not wanting to be bothered to go out or get dressed. It's ok to have a 'duvet/ PJ/ be kind on yourself' day, sometimes we jolly well need it to garner the strength to keep going! My parents gave me a framed verse a while ago titled 'Don't quit' which when I am struggling, I remind myself each day is a new day and no matter what is happening to me right now either health wise or in more personal matters I need to keep going. I see life like chapters of a book some chapters are short, some go on for what seems like an eternity, some you wish never to re read or go through again others you want to hold onto dearly and some you would like them never to end. Your family home is very much a part of a chapter in your life....and while it is a place you have known for all this time, I guess you have to decide if moving to a bungalow could be a new chapter that could help you here and now and in the future health and happiness wise. Please take care and if you feel you need to talk to someone as Lolabridge has already mentioned the NRAS helpline or perhaps a talking therapy service that could be be helpful so you can express and off load any worries, emotions and feelings you may be experiencing. Sending you some supportive wishes, Love Pip x
Thank you hope you get sorted soon
Hi Kathy
Most of us struggle from time to time with medications not working.
Your rheumatology dept must listen to you and endure everything is done to find a suitable drug, and to give you better relief in order to live as normal s life as possible.
It has taken over two years to get mine to the point of good relief and better mobility.
It certainly can drag us down. Hope you soon see light at the end of this tunnel. ✌️
Thank you
Hi Kath
Lovely replies from some of our sweetest and most helpful people above. 😍 I love what was said by Pip about life’s chapters and some are short and some are long. Did you mean you’ve been swapped to a biosimilar from an original medication which worked well for you? I’m sorry anyhow that you’ve not fared as well on the swap/change.
I can only echo the advice given to talk to NRAS helpline and think about another phone therapy service where you could have several sessions of talking through your feelings. They helped me so much to talk things through in the past when I was worried about taking new meds. This helped me but it was ftf 25 years ago when first diagnosed and I lost all my fitness and couldn’t compete in athletics and other sporting events. The offloading to an impartial person was invaluable. Although the move may seem a huge upheaval I feel too as the others have said it would be so much better for your health to be in a bungalow/smaller place sooner rather than carry on with struggles at home.
Although I am a very patient person I wouldn’t keep on with a med that didn’t do enough to help, when I’d given it a fair try, especially when the previous one worked so well. 😑 I feel too you need to let your rheumatologist know the new med isn’t as good as the previous and you’re not doing well. Don’t suffer this and put up with pain and feeling awful. I’ve been there/been too patient and thought it will be ok .. but then I had to move onto a higher spec med as my RA went of control. I’m much more mobile and in a good place now with the RA. I’m sure you can be too. It won’t be like this always. It seems an eternity when you are in a flare/limbo. Let’s hope this bad spell is soon turned around. Hope you can soon talk to the people you need to to make things improve (and they will) and feel better. I’m all for the comedy dvd box sets too.😁 Working my way through them all this year. (Frank Spencer always creases me up!) I’m an avid reader too and like to lose myself in some good fiction or fact. Good luck.
Neonkittie💗
Thank you
Ahh bless you, I know how you feel but you just got to hold in there, your tired because of the pain then that gets you depressed, you will start to feel better, you just got to hold in there, get plenty of rest, have a lovely bath with epsom salts, hot water bottle
sending you lots of love and big hugs xx
Thank you
I hope you feel better soon, lovely advice from so many people on here. Believe me when I tell you moving to a bungalow is not giving in to RA it's simply amazing what a difference to life it makes, no more anxiety about getting upstairs to do things yes its different and you may not have as much room but once you get settled in you'll reap the benefits of one level living. Good luck with it all and I hope things improve for you.
Hi Kath. I am so sorry you are having a bad time right now. I have lots of questions: Have you told rheumatologist how you are and how much pain you are in? What medication are you on now? How long have you been on it? Do you have any family to help you? Are you going to have help to move? You sound very down. Have you seen GP? They might be able to give you something to help, short term. Please post,again if you need to talk. You know the saying, a trouble shared is a trouble halved.
Morning. Sorry to hear you are having a bad time. It doesn't matter about getting dressed every day but it does matter that you ask for help. Please speak to your RA nurse , my team are fantastic, email or phone and they always help out. This RA doesn't care if u live in a castle or a bungalow! Its about time you had some help as this is no fun for you. I hope you get a break from all your troubles soon. Take care.
Oh Kath I’m so sorry to hear how your feeling & it’s totally understandable, I’ve been in a similar situation (I’m 58). Each new med hasn’t worked or I’ve had really bad side affects, I’m 4 days in to my new med so fingers crossed.. you don’t say if you have family around for support & moral boost. I know we feel a burden at times but we shouldn’t, sadly it is what it is, do take care my lovely & make sure you share all these sentiments with your consultant on your next visit or call & chat with the Rheumy nurse, they need to know your true state of mind, they are there to help us & can only do so if we give them the truthful information to act upon, take care
Thank you. I will . You take care too
Thank you all for your lovely comments
Feel for ya get the same too.
Started my antidepressants again few weeks back which help me with clearer brain and be better motivated.
My other go to is listening to music.
Pain is the same mind. The fatigue from it, is unbelievable and impossible to explain to others.
Agree with Lolabridge to be kind to yourself etc.
The other thing I do is do a mental check list of what I have achieved, got up, lol, got washed, dressed , cooked a meal all things I did in a blink of an eye at one time with not a second thought.
Easy to say try not let other's views of you bother you, but if you can realise they have no idea what you're going through and probably cope less well than you if they had the illness.
Chins up m'dear 
Thank you
Feeling really fed up
Fed up!
Fed up
fed up
