I was diagnosed as having sero-negative RA in 2016. Methotrxate was successful for many years but began to fail in 2021 . I tried various other drugs and I am now on filgotanib. I started this in April 2023 but got covid 2 months later. At the moment 7.5mgs pred has been added gradually reducing over 6 weeks to kick the filgotanib into action. On pred I find I hard to control the grief at the loss of my former life. I am very limited and dependent now, the opposite of what used to be me.
how do people cope with loss of former life, any tips... - NRAS
how do people cope with loss of former life, any tips please
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meadow-mogs
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it can take a while to adjust to a diagnosis and mourn the life you used to have, especially so when your RA is not controlled and you are physically suffering too. Pred can affect some peoples mental health too. Have you spoken to anyone about this as talking therapy can help as can talking here so I’m glad you felt able to share with us.
NRAS have a helpline that might be useful to you, emotional support or advice ( not medical) and lots of publications you can download with helpful information.
Hopefully your meds will start to work soon and you can get back to more of the things you like to do or find new things you enjoy that you can still do if you’re having a bad day. 🤞🏻 for you. 🤗
Lovely, thoughtful response. Thank you.
I am in some similar circumstances (severe sudden onset seropositive RA) & have been treated horribly by medical personnel & family (been told I’m “faking”).
Sometimes, I have no words 😶 (too damn fatigued/ done. But sending a simple understanding hug 🤗, because ppl don’t understand/will never understand what it’s like to walk a day in your shoes x
Thank you
thank you
It’s difficult but I try to focus on positive things I can still do and the new opportunities that I’ve had because of RA. However, when you’re in the middle of a flare it’s not easy - I was diagnosed 16 years ago and I found myself crying a couple of weeks ago because my hands were so painful I couldn’t lift the milk out of the fridge to make my breakfast.
Steroids can also play with your emotions, so they might not be helping.
The NRAS helpline are very good if you need to talk to someone.
Hope the steroids and medication work for you soon.
Thank you as well
It is always difficult when you have a slip back….& Covid has really thrown a spanner in the way a lot of RA drugs work….I know it must seem a lifetime to you..but getting over Covid takes time & realistically you have only been Filgotanib for a very short time….so your drug hasn’t had a real chance yet.
You have discussed with your doctor how soon you can realistically be weaned off the Pred….& until you have managed to do that it will be difficult, but things will get better…..I was taken off Pred when it caused central nervous system problems & advised never to take it again,…& although it wasn’t simple…I never wanted to have those symptoms again….so I have managed to stay off steroids now for about 10 years.
I hope you have a support network to help you….if things get too stressful, do ask your rheumy team if there is a support therapy team in your area.
thanks
It’s pretty horrible when your life changes like that, I used to say ‘where is the me I used to be’.
I developed Graves’ disease in 2012 that was awful, I got through it but I’ve never had the same stamina - long distance walking was one of my hobbies. Two years later I developed sero negative inflammatory arthritis - no fun, then in January 2020 I broke my wrist and they discovered I have osteoporosis then I got CRPS which was awful. . No fun at all.
I’ve gradually lost the things I loved doing, I loved cycling but I often fell off my bike so I’m not keen to get on my bike again - I fell off so often and was OK that that was one reason why the osteoporosis diagnosis came as a surprise. My hands aren’t great now because of the CRPS that developed when the cast came off, so out went my patchwork and they are very wobbly when it comes to art and photography plus I no longer have the strength do do heavy duty gardening I’ve always done so I’ve lost a lot of the things I loved.
Unfortunately I can’t give you any great advice other than in my case I’ve just got used to how things are, that and living with pain and I’ve found other things to do. I don’t know what age you are but I suppose with age that sort of thing probably comes to us all in one form or another but if you are younger (I’m 74) it must be much harder to accept although I’ve known some amazing young people with juvenile arthritis
It sounds like pred isn’t doing you much good if it is making you feel like you do so it would be worth speaking to someone at NRAS about it as KittyJ recommends or speak to someone at your rheumatology dept.
There is a lot of good comments already so I’d just add that being positive helps and RA is not terminal it’s a journey that takes time and patience. I look on the bright side, RA was a blip but CKD a life limiting disaster some 6 years ago. However every day is a bonus and I’m still here, alive, well and leading a near enough normal life. I can’t walk up Snowden but again but done that once with RA and so I’m going to get a mobility scooter next week and so just might motor up and walk down. Try to see that life goes on and it’s what you can make it. I hope your positivity returns soon and stay strong. X
Rosie-NRASPartnerNRAS
Good afternoon Meadow-Mogs, sorry to hear how you are feeling at the moment. Our Helpline is here to support you, so if you would like to chat, please give us a call. We are open Monday to Friday, 9.30am-4.30pm, and we can be reached on our freephone number;0800 298 7650. Kind regards, Rosie @ NRAS.
You could try the the lovely people at the wren project. They exist to help people living with auotimmune. It’s a free service- wrenproject.org/
Or you could try your GP.
On better days I focus on what I can do and make lists of things to consider doing on days when my brain is foggy. On bad days: you know how that goes…
I had support from the Wren project - and after one to one support has ended they have monthly sessions for support for people suffering from all different autoimmune diseases - it’s a safe space to discuss how you are feeling ( all on screen) and I always come away having learned something to help me. I had a tough time getting diagnosed (see my profile ) but I have since learnt many people do. I also belong to a support group. I hope you are feeling better soon-big hugs 🤗 xx
I've been having this struggle to. Especially this past year. Diagnosed sero negative in 2017, when I turned 40. Mtx alone hasn't helped, I'm currently on 20mg pred after my week in hospital, which was all down to a massive flare. Even the medical consultants I initially saw didn't recognise it and the GPs hadn't over the previous month.
However, life is for living and in its infinite variety we find the things we can do.
I think you need to sit your consultant down and say is this as good as I can be. It's not easy to pin them down. The last doctor I saw seemed confident that there were other treatments to try and I could be better. I'm clinging to this hope.
In the meantime I'm trying to listen to my body and respect the boundaries. It is a journey one day at a time, some good some not so good.
You describe how I feel perfectly. Have a hug from me.
One word, counselling.
I’d never had any kind of counselling before but I knew I had to try something and it worked.
Trying to get through it on your own doesn’t work for everyone and if it’s not working for you which I suspect is the case, ask for help. You may not find the right person first time or even the second. But when you do you can hopefully get to a state of acceptance and that life may be different, but it can still be good.
You deserve to enjoy your life, so give it a chance and it might just work for you.
, do what It took me quite a while. For me, it is similar to a period of mourning for your old life. But there comes a time to move on and do the things you can and not worry about those you can no longer do.
Acceptance is the key. I find talking to fellow sufferers has helped, as well as being out in nature. ACT therapy may help if you are struggling; it is an effective way to help deal with times like you are experiencing. Even if it only confirms you are doing the right things.
I wish you better times with all you CAN do.
I get this. Having had RA for 34 years I have managed my way through the ups and downs, the pain, fatigue and the frustration of no longer being able to do what I want to do in terms of physical activity and I’ve accepted quite a lot of it. For the last two months I’ve had a herniated disc, sacro-illiac inflammation and sciatica and a tooth abscess so due to antibiotics I’ve been on and off my JAK. Yesterday I saw my rheumatologist who says I now have steroid myopathy in my legs (steroids for 34 years) so I sat down and howled.
My great pleasure has been walking but I’m off balance and not confident about slopes and stepping off kerbs. For someone who has, despite having had RA for so long, coped, I now feel at 71 I’m no longer able to do the things I had planned so I too am mourning the life I led. It’s a beautiful day and I won’t now let this get me down but it’s hard and too many of us have to face revising our lives and how we live due to this disease. My back problems will resolve I know, as will the tooth but everything chips aways at your confidence. Positivity is definitely the way to go, RA isn’t terminal but now and again, we all have to let it out and this forum is the place to do it as the only people who understand the trials and tribulations are right here. Ra ra the NRAS HU us!
Your so right. Now and again you just don't have the fight to fight on. However, knowing your not the only one and that there is always the chance it could be better you get up the next day and carry on. It's a burden you can't carry yourself so you have to get help, even if it's only telling us it helps.
I know how you feel, one minute you are bowling along as you had planned and then out of the blue things change - in a bad way. It’s tough.
When I fractured my sacrum I lost a bit of confidence in walking especially as my physio had stressed the importance of being very careful when walking on mud or fallen leaves and they are good for kerbs and uneven pavements. I got round the lack of confidence by using Nordic poles. We did a course before my husband had his hip replacement years ago ( I thought it might help straighten him up ) so I knew how to use them.
Don’t ask me how but they take the weight off your knees, hips and back. You can use them to power you up hill or for balance when coming down slopes. I got over feeling a bit odd using them in town. The poles are amazing. The ones I’ve got have a quick release grip, you wear a sort of glove on your hand and you can unclip it for full use of your hand without the pole attached. Definitely worth paying extra for that. They are like having an extra pair of legs or extra long arms that reach the ground. Great for keeping you balanced and I also find I can ‘rest’ on them and take some weight off my back when I’m standing still.
Oh thanks, I shall investigate and give them a go! X
The starter classes were good, about six people to the group plus the instructor and his wife, they are quite sociable and if you wanted to continue for the social aspect you could do that. We didn’t because we just wanted to do it the correct way ( there is a correct way to do it) we learned how to use them on hills up and down too - you don’t even need to buy poles to try it out, our instructor had them and set them up for us at the end of the course we bought our own poles from our instructor and off we went.
Thank you very much -very kind of you and I shall certainly look out for a local course. I live in hilly Shropshire and see lots of people using the poles on the hills. Have to say I’d never thought I might but needs must!
Honestly Nordic poles amazing, they seem to lift the weight from your hips and knees. It’s funny when I’m out and meet other users we nod to each other knowingly. Shropshire is a lovely county, we live in east Anglia which is flat as a pancake although we are on the edge of the Chilterns so we can find hills if we want to. Not like Scotland where we come fr9m though. 😉
I’ll let you know when I’ve been and gone and got them. First, going on a 14 day cruise round the Med with friends at the end of this month which I feel is richly deserved! 😀
That will be amazing have a wonderful time🤗
That is obviously the goal and for some achieved relatively easily. For others it takes rather longer.
It is horrible to feel this way. But in some areas the NHS knows and does somethign to help. In Gloucestershire for example we have a Live Better to Feel Better course as part of what's called the Gloucestershire Health and Wellbeing College run by one of the NHS trusts here. They take an educational approach rather than a clinical approach to help people to feel better. We also have a Living Well with Pain programme run by the acute trust.
Not all NHS areas will have this, but it might be worth digging around to see what is on offer in your area. I know that even in Gloucestershire where they do promote these courses, many people still don't know about them possibly because the GPs and consultants don't know about them so don't pass on the information.
Hello meadow-mogs, I was diagnosed with RA in 2009/10 and the first 18 to 24 months were horrible, but gradually I turned the corner with the tremendous help from the Rheumatology team and NRAS. I learnt about self management and acceptance very early on. Of course you want your life back, everybody does. It's a completely natural desire. With today's modern medication you will get better and will be able to rebuild you life. It may not be the one you had before, it may be different and it maybe even better. I certainly found that thanks to having to live with RA I got stronger (physically and mentally) and have more compassion and feelings of gratitude. I got to remission in 2014. Next came partial prostate removal, the a total knee replacement and last Monday a had a radical Cystectomy. All life changing. My urology surgeon said "Don't limit yourself. Aim high, challenge yourself, but take very small, achievable steps. Set yourself goals and try to achieve them. Don't beat yourself up if you don't get there in one go. Have a look at you goal and see if you can get there in a different way". He said a lot more but I won't repeat it all here.
And of course there is NRAS. A wonderful bunch of dedicated compassionate and knowledgeable people. You'll find many hints and tips in their self learning and self management programmes on top of a wealth of information about all aspects of living with RA. MyArthritis app has brilliant self management courses as well.
I'm looking forward to my new life and I hope you will get better and lead a fulfilled and happy life once your back t a successful medication regime.
My best wishes and love.
Thank you
Nothing is definite with drugs and RA sadly.
As a newbie I can relate to how you are feeling. I think it is completely understandable to feel grief at the loss I am experiencing. I find not being able to manage the little things are the worst - when the bath taps have got the better of me or the porridge packet remains resistant to my best efforts. Very early on someone said to focus on what I could do and after a long think I decided that it was probably mouth painting with watercolours, as I wouldn't be able to get the tops off the oil paint tubes but things have improved and I can now do the ironing. I have started doing Talking Therapies to give me some strategies to make me more resiliant and even after my first session I have a better understanding of pacing and having manageable goals. I also know that there is a chance that tomorrow is going to be better and there are supportive people who understand the challenges. Virtual hugs.
Thanks
Sorry you’re feeling low Meadow-mogs. I think we’ve all been in that same boat more than once. It’s hard but the positive I’ve drawn from having RA for 10yrs is that I really appreciate the simple things now.
I can’t deny I look on and watch similar aged mums bombing around doing things I can’t and even last night, we went out for an anniversary meal, I’ll never wear heels again and I feel sad about that on those occasions.
I say having a life long condition and all that comes with it, can make you take stock, step back and smell the coffee so to speak.
Wishing you well and hope you feel better about everything soon x
I keep my high heels & favorite (before RA) things. Believing in a Higher Power helps me imagine dancing & fellowshipping again (in heaven) with all my beloved people; & seeing everyone in ship-shape condition!
Here’s to that!!! 😊
Thank you
I was diagnosed about 18 months ago, seronegative RA. I had no relief for the first 10 months, not even steroids helped. I have always valued life quality not quantity and I was determined to end my life if things didn’t improve after 12 months. Friends and family respected that position and dealt with my rage at how I found myself and what I couldn’t do, but never stopped being there for me. And it was that love, respect and understanding that allowed me to hang on.
Then things did improve, we found a medication that worked, and I started to hope I might be ok. But after a few months the side effects meant I had to stop and I was right back to the beginning in terms of pain, brain fog and fatigue.
A few months later, still trying to find something that worked, and feeling even more in despair because something that was working had been snatched away, I had counselling. I was not there to be saved from myself but to talk about my options and choices, about how I felt about my life. I found this really helpful. I also went back on the medication that worked with a joint decision to take the risks associated with the side effects for longer rather than coming off the drug as quickly as I had previously.
Counselling taught me that I still thought there was enough quality in my life overall, even if I couldn’t do what I wanted all the time. Accepting that it was ok to be angry, to grieve for my lost life took a lot of time. Alongside that acceptance, I have been fortunate that going back on the medication has meant that my quality of life is almost back to normal (after a number of months) - something I didn’t think possible at all during the various other attempts with other medications. I have found that stress and pain are directly linked and that I need to manage that stress, and am still learning how, but my pain is pretty much gone, as is the brain fog and fatigue.
This is my journey, and every journey is different. It look a long time to find what worked, and there were times when I questioned why I should keep trying. I was angry and frustrated at what I was expected to tolerate. But ultimately I found being able to explore in a very neutral space what I still valued about my life helped.
I hope you can find something or some way of finding a space that helps you.
My experience:
After diagnosis (sudden onset, severe, seropositive RA): I laid bedridden (& wracked with pain & fear), for months, being attended & treated by bad drs. Experienced joint & neurological damage.
My friends & family ignored, insulted, disrespected & turned their backs on me. My house & car were sold (& most of my money, belongings were stolen or taken) & I was left in a hotel room during COVID to take an Uber to the hospital for more bad treatment (in USA, private pay, with good med insurance). Discarded like I was trash & my life had no value.
My life was finally saved by the intervention of kind, intelligent pharmacist. But what is my life about, after all this betrayal?
Glad things worked out for you.
I would rather have died. And I look forward to peace & love in heaven.
(P.S. I am educated, Christian, agreeable & accomplished & so are my friends & family.
There’s no accounting for the maliciousness of human behavior,)
I've had RA for over 20 years. I still wish I knew the answer. I had a paddy today because I was struggling to wash the carpets. I couldn't press and push. Grrrr.
I find it's better to be thankful for what you still have. There are much worse diseases out there for sure. And for the other days a bottle of red and a good film does wonders.
You are right it is grief. Quite a while back I had one to one counselling and it helped immensley
Pred affects my mental health, makes me feel sad and weepy (not my usual self at all). Try without the Pred (or an alternative) and see if your mood improves. When I stop the Pred I revert to my normal self.
Know you'll have had loads of fab info replied to you.
When I was diagnosed I asked hubby what he thought the results were he gave 2 usual type replies, I then told him and started crying. My reason for this response was I knew his life would never be the same & he'll not cope with me so ill.
Briefly I went from a very active walked and cycled miles etc etc person to bed ridden. This occurred because I was diagnosed 2012 and the consultant I saw wanted to start me on treatment then. I explained I'd got trip to E. Malaysia booked that Autumn, she says no problem can carry on treatment there. This was incorrect I needed to be in the UK for the first year. I go to E. Malaysia with low dose steroid injections my GP let me have to administer. By December they stopped working, symptoms flooded in & by January hubby had to change flights so I could come back. Anyway treatment was started within 2 days of return, I cannot praise the medical staff I saw enough, all them were brilliant.
I'm a very pragmatic person so looked at all aspects weighing up do what I can, learn to adjust to what I can't. However a grief or loss process takes place, interesting learning curve discovering who is there for you & who aren't. Also way ones just generally deal with someone who can look frail, old. I also used anti- depressants for particularly difficult depression, as well as talking therapy by phone. Music lifts my moods, & I love my massage times which refresh me in all ways.
Energy levels are very finite so I refuse to waste it on any thing that's negative, useless, unproductive. I was able to return to E. Malaysia for fewer months travelling on my own with airport assistance. Covid ended that, had 2 hips replaced during Covid excellent experience. I set days aside to meet up with good positive friends, was able to have a full involvement with our grandson, had him 2 days a week while mum worked.
Vaccines & boosters plus infections caused me painful flares & I had to have intramuscular steroid injections & one directly into my knee joint. Those days are debilitating & you praise yourself for just getting up & making a cuppa.
I'm in remission, pain minimal absolute heaven and has allowed me to enjoy a weeks holiday with the family, & I'm going on another weeks holiday with a company that cater for ones with disability, going on my own. However learning to be less independent asking for help has been useful, though so against my disposition.
I feel for you, recall those days you refer to but can only say it improves, you will get joy back in your days, weeks , months. Take it an hour at a time for now and know we're with you in spirit.🤗
Thank you
Agree so much with your comments and those of the people who answered you
Over the years I have had a series of new diagnoses, the latesr being limited cutaneous Scleroderma, i have has raynauds for many years and now I have problems with my teeth, with dry eyes and a recent hip break has led to the need to take bone strengthening meds.
Sometimes I am so tired , I feel helpless and i dont know which condition or medication to blame., But I can keep going, I can walk now, without aids now and I have found new hobbies and interests
Yes I get down, I was crying at breakfast today that I darent comit to a fancy and expensive night out tonight after what I knew would be a challenging but enjoyable day with my grandson.
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