Just wondering how many people carried on with their normal jobs after RA diagnosis or went part time or gave up work? After spending 10 years building up my business I am struck with this illness and struggling with work activities. I haven't had treatment yet and hoping that may help but also thinking maybe I should just give up and try and survive some other way.
Do you keep working with RA?: Just wondering how many... - NRAS
Do you keep working with RA?
I would suggest you get treatment first as this can be life changing.
Ok, will probably reduce my hours until I get some meds though because there are things I just can't do atm
See if you can get some help from friends and family for any physical aspects of the job, or with laundry, cleaning, shopping, meals so you can devote energy to work over domestic tasks. There may also be some government or foundation help available.
Unless you are approaching retirement age already, I wouldn’t be too keen on retreating from work. While it seems like it might be a relief, long stretches of physical and mental inactivity aren’t good, either. And the social isolation can be the hardest of all.
Look for alternatives in your daily activities that will save your effort and energy that can be skipped, done less frequently or by someone else. People who know and love you are waiting for an opportunity to do something for you. Let them. You’ll both feel better.
definitely don’t just give up, yes it can be really hard but when you start treatment and find the med that works for you, as madmusiclover said, it can be life changing. Can you reduce your hours for a while or get some extra help short term? You don’t say if you have a rheumatologist appointment booked already or how long you have to wait but some people see a rheumatologist privately at first to be seen quicker then transfer to their NHS list. I did have to leave work when diagnosed because I couldn’t even get myself up in the morning let alone do anything else but once meds worked I went back to work albeit in a less physical job and not such long hours. So don’t lose hope keep coming here for support, ask any questions you have and we will try to help you out with ideas to make your life a bit easier whilst you are waiting. 🤗
Hi, I haven't seen the rheumatologist yet, still on waiting list but am getting a bit of help with work. This thing is really aggressive, went from totally normal in January to almost can't walk now. Had blood tests etc, just waiting for diagnosis but reading the posts in this app is a bit terrifying!
I was much the same. Went on holiday to Peru to hike the Inca Trail and came back hardly able to walk. It took quite a while to get a treatment plan sorted but one I was stable I have been ever since.
just remember that most of those with RA that found their meds are off getting on with life and don’t feel the need to post. Forums like this will always get the scary stories because people are seeking help and answers and a lot will be early in their diagnosis so it’s not a fair representation of what could happen in your RA journey. I was diagnosed 34 years ago when there were far fewer meds to try and no forum like this so I didn’t hear any RA stories which in some ways is better but then I didn’t have the support of a group like this when things were tough. I’d try to concentrate on the fact there are many meds now to help you and as soon as you’re diagnosed you’ll be prescribed something to try. 🤞🏻 for you.
Hi. Just to say I was diagnosed 2023. Like you went from totally normal to couldn't do anything. My GP was wonderful. Blood test result showed RA and made an urgent referral. I was seen by consultant within a fortnight. I was also very lucky in that the medication I was put on has worked well for me.
Best wishes Fluff. Hope you get some help soon.
(Push for that urgent referral if it's not forthcoming.)
Remember the majority of people who post on forums like this are the people looking for support. Those who are doing well on their medications are busy getting on with life.
I know several people with RA who are working full time and living life as normal. Don’t give up yet. Hopefully once you start some medication things will be much better. You could try contacting the rheumatology department in your local hospital and tell them you’d be willing to accept a cancellation at short notice.
I was diagnosed 40 years ago. 2 knee replacements and different meds have kept me going. I do most of the things I always did, I walk loads, hardly ever sit down, so live a nice life compared to some other terminal illnesses so don't give up. Get meds sorted. Hope this helps.
Your onset sound similar to mine 2 years back. I started with sit bone pain in Feb, then couldn't easily stand up and by Apr, could barely walk or lift my arms beyond waist height and standing up was sheer agony. I reduced to 2 days a week at my worst (I worked from my bed as I could not even sit at the time). I now work 4 days a week and probably could work 5 days but have added care responsibilities with elderly parents. For me a course of prednisolone while I was waiting for the MTX to be prescribed and then another course while it was building up, really helped me get back. I would say that I'm probably the best I can be now and would liken my situation to being able to do most things but doing them in treacle so everything is a bit slower and more tiring.
Are you in the uk? If yes remind them that they have to met certain timescales to ensure you do not suffer too much damage while flaring.
Yes, really? How long is that?
I had to take some time from work until my meds were sorted. After that I worked full time until I retired. I was diagnosed in my early forties. My job wasn't physical, if it had been I wouldn't have had the energy to work full time. After starting on a biologic, I have been in remission but have never had the same energy or strength as before diagnosis. It took about a year and three months for me to achieve remission.
I was diagnosed in 2004, aged 49. I was working as a primary school teacher, which I found difficult until the right cocktail of drugs was found. I eventually gave up when I was 59.
Gave up meaning retired or because of the illness?
I had originally decided to work until 66, the new women’s retirement age. When I was 59 we had a bad OFSTED and I couldn’t face a series of HMI inspections. OFSTED caused me to have huge flare ups. In the end I decided I couldn’t do it any more, and there was more to life than work.
I did and no issues at all but I was Local Government and they were good employers. I did eventually opt to retire early but I had full pension and wanted to do other things.
I sadly had to give up I just couldn't do it anymore. But by god what I would do now just to even go to work for one day. I pray they find some medication to help but I've went through loads 🙏 don't give up keep at it 💪💪💪
Can I ask why you haven’t commenced treatment yet? If you have had tests & been confirmed as having RA, please don’t think you can tough it out & it will go away….because sadly it won’t….& you really will live to regret not starting treatment.
I think most people here will agree, early treatment can control RA very well , not cure it…but make work possible…….the longer you go on trying to cope without DMARDs the harder it will be for your rheumatologist to get control of this horrible disease.
I was diagnosed 20+ years ago - I commenced treatment immediately I am now leading a good life.
Please make an appointment to see your Rheumatologist , if you haven’t already seen one do get a referral as soon as possible from your GP.
You say you run your own business, so I cannot say how important it is you start treatment asap. Your best action now really would be to get a private initial rheumatology appointment, because you could quite likely waste a lot of time - & miss opportunities to get a grip on this disease…..because you really could wait over a year to see a Rheumatologist on the NHS.
Good Luck….and do make that appointment…..RA very rarely just goes away without treatment.
Still on waiting list for rheumatologist but the GP and knee surgeon both are pretty certain it's RA. Once I get to see the rheumatologist I'll take whatever they offer!
I don’t want to alarm you …but RA doesn’t hang about…if you end up with a really long NHS wait…that time might not be clawed back.
If you can manage just one private rheumatologist’s appointment …..you will be able to start on Disease Modifying Anti Rheumatic Drugs which could mean you could keep running your business, be out of pain & as the drug name suggests..modify the disease early
Just one caveat …..Make sure the rheumy you might choose also has an NHS practice….then when your turn on the NHS waiting list comes up…you could be transferred on to his/her list, you will be further assessed & a suitable course of treatment prescribed for you.
RA is controllable…but sooner rather than later is best!
Ok thanks for the advice
Also, keep on at the rheumatology department. Mine went unresponsive for months. I'd tried sulfasalazine and methotrexate, and they'd taken me straight off both of them because they were having a bad impact on my liver enzymes. But then there was nothing. I felt completely abandoned and after about 6-8 months of getting nowhere I complained to the patient liaison service (PALS) at the hospital. That gave them a kick up the bum, and rheumatology got in touch to say they wanted to start me on a biologic. That drug has been nothing short of miraculous. Apart from getting a bit more tired than I used to, I get on fine day-to-day and have successfully held down a full-time office job.
I did go via the private consultation route and the consultant had to wait until my NHS appointment to prescribe DMARDS for some reason. He gave me Pred to help me on my way but I still waited 6 months from getting a sero positive to getting medication. I saw a different consultant at the NHS after my private consultation who wanted an MRI done before prescribing. Again, the waiting list was so long that I got that done privately but the NHS make you have a private consultation rather than accepting the MRI results so saw the original private consultant who got me an NHS consultation with himself and prescribed the drugs but it was such a kerfuffle and I think it could have been just as quick if I'd stuck with the NHS - though I do prefer the consultant that I saw privately to the other NHS consultant and so I'm glad I've been transferred to him in the NHS.
Know what you mean about kerfuffle, feels like project managing my health care is my new part time job, on top of my paid job!
Yes then if you continue & need Biologics….you have to stay with the NHS, because the Private sector isn’t allowed to prescribe them…but at least you are being seen.
I was diagnosed in 2019 and lockdown actually helped me as some of my work had to stop and some moved online which made it easy to spread it out. Now that I'm pretty stable on medication I can do more although I don't do as much as pre-RA. To be fair, that's partly because I don't need to but I haven't got the stamina to do as much as I used to. Of course, that could be due to my age (64) as much as anything but I do have less energy than my friends and as I have the luxury of not needing to earn as much, I can choose what to do! My husband had a stroke 10 years ago and although he's made a pretty good recovery, we did rethink our lives and he chose to give up his well paid job and focus on working on what he loves. We were surprised how well we managed on less so when I developed RA, we were fairly relaxed about being able to manage without me working as much as before.
Try not to overthink it (difficult, I know) and wait until you're stable on medication before making any big decisions. If you can slow down for now, it will give your body (and mind) a chance to deal with the beginning of your journey. You'll see a lot on here about pacing and that's really important.
You'll find lots of understanding and support here but please realise that many stop posting once things are going well - probably because they're too busy getting on with their lives - and so the threads can give you an over-pessimistic view of RA; try to stay positive and believe that you'll be one of the lucky ones!
Have a look at the NRAS website - lots of great information on there 😊
Hello, I am still working it helps to keep me sane , gives me an identify not focusing on my health all the time .. plus I enjoy it. But, having said that it hasn't always been easy mainly trying to get my Employer to understand about RA and any adjustments I need ,I work for a very large organisation and you would think they know better but nope but that's another story! It's a very scary and worrying time when you're first diagnosed and waiting for medication, but there are meds that can and do work, and there are more arriving all the time. You may have to make some adjustments or you may not..but there are many of us still working or that have worked. Best wishes and hope your medication is sorted soon.
I had some time off at the beginning -2016, but since then, I've been in full time work. Wishing you lots of positivity 🙂
Same onset story for me...it all happened so quickly! I took some sick leave from my job as an estate agent at first. The computer work, appointments, driving, climbing stairs and opening tricky door locks etc all proved to be impossible. The agent I worked for was a small local firm with very little patience or understanding tbh. However, I am fortunate that I have two final salary pensions from previous jobs that I was able to draw early, so after a few months, I decided to retire. It wasn't just about whether I would get better, many factors came into play. I have a new baby grandson, my mum is advancing in years and my husband is already semi retired, so it seemed to be the right time for me. I also wanted to be in a position where I could enjoy wellness when it eventually came and not waste it working for someone who cared little about me. Everyone has different circumstances but I agree with advice already given...take your time and do what's right for you and your family. I hope you get seen by rheumatology soon and I wish you all the best.
lots of replies but diagnosed in the June saw Ra doc in Sept treatment Nov but already work had to adapt my hours spent 4 months struggling and COVID furlough gave me 6months to try and get back in my feet. However I took redundancy that year as I knew I could not do the job or in a fit state.
So it’s a path no one can dictate as no one knows what will happen and how your body responds to treatment and the disease. The meds normally given a 13 week window to start kicking in. Took me nearly 2.5years to find a medication I could cope with.
Pace pace pace as stress is not good for RA and write a journal so you know how you are and how you respond to meds so you don’t forget !
I would also wait for treatment to start and bear in mind it can take up to 12 weeks to kick in. I was diagnosed in 2010, worked full time. Then gradually had to reduce hours and now do 16-20 per week from home which is flexible. It’s really important you take breaks and pace yourself. The initial months after diagnosis are the hardest. Good luck x
I carried on working full time for 15 years, then 3 day week for another 5 before I retired early.
At times it was difficult, but finding a drug that controls the RA is enabling.
Try to stay positive, find your way through.
I was dx. age 6, worked for 22 years until neurosurgery on my cervical spine stopped me. It wasn't easy, but I had a mortgage and bills to pay. Hopefully you'll receive one or more of the newer drugs and things will improve so that you can continue with what you are currently doing. Good luck.
It’s hard at first. I have two businesses and have learned to pace myself. I went on holiday to Portugal and was wheeled off the plane coming home. It was brutal! But I was determined nothing would change (even though it did). At the beginning I pushed very hard and looking back I’m not sure how I did it. 6am meetings wearing compression gloves and getting up at 4am so I was ready. It sounds mad now but I’m a very determined person 😂😂 The meetings could be hilarious. If someone that didn’t know me handed me a cup of coffee it would always end up on the floor as I could not hold anything. I had to adapt how I did things. If I was giving a talk I had to have a chair or a stool as there wasn’t any way I could pace a stage. The hardest part was admitting to myself that things were different.
I delegate as much as I can. I have employees, contractors and outsource quite a bit to VAs too. It probably depends what your business is. Mines B2B so not a physical premises which makes it easier.
I’m now starting a third business so yes, it is possible. It just feels like a mountain when you’re newly diagnosed.
Thanks, I'm so lucky that I can work from home but just wish I'd built up more pension
You and me both! Hindsight is such a wonderful thing
This just flashed up on my screen…might be of help to those young enough t to augment their State Retirement Pension.
“HMRC has today launched the long-awaited online state pension top-up service.
Via the online tool, Britons will be able to check for and fill any gaps in their National Insurance (NI) record to help increase their state pension.”
I have managed to stay working throughout from my symptoms starting in 2005, the long journey to diagnosis and then finding treatment that works well. I have had time off for hospital appointments, but that's it really. I have been determined to keep working as it's felt a really important part of my self esteem and identity. There have been many times when having my mobility reduced, dealing with the fatigue, not being able to do things I used to easily etc. has made me feel like a different person/useless/down. For me, staying working has helped with this (as well as the meds obviously!).
I was a part time primary school teacher (part time because of my children, not the RA) and have moved to full time in the social care sector, which I love. Support from the rheumatology team and the right medication is definitely crucial, as everyone else has said. Hopefully you will get started in treatment soon and then be able to decide on the right plan for you.
Sorry to say this disease sucks, completely fux up most people. Most of us suffer in pain and get pushed from drug to drug. Very few don't need to take time out or change jobs. I'm not gonna moan but its been a horrible journey for me, to the extent that I have been in hospital for the last 8 days with collitis bought on as a result. My advice would be get help quickly and keep moving..
I was diagnosed in 2021 with PMR, then in 2023 with PMR induced seronegative RA. It has taken several trials with different medications to find the ones that work for me. I work full-time at a university so could access sick leave for appointments. So, I'd say that once you get treatment, you should feel better and lead a productive and less painful life. Saying that, I just got one knee replaced in February and will have the other done in November, so that has also helped me. All the best!
Don’t give up. Treatment helps massively. I am on meds which mean I don’t think about it most days, which is a huge contrast to before I got medication, when my husband had to help me get dressed sometimes (I’m 41!!). I have adjusted my diet so I eat much more healthily and ensure I eat anti-inflammatory foods and gut friendly stuff, as boosting your gut health does help your immune system. Also, (rather boringly!) I don’t really drink anymore. You sound like you are at the start of your journey and you do have to adjust your lifestyle a bit so you actively take more care of yourself. There are loads of resources online to help guide you with this. I like to think it’s the universe forcing me to eat better(!!!). Please don’t feel despondent. I absolutely know how you feel, it can feel so helpless at the start but I promise you, there is a way to work through this new situation.
Thanks, I eat fairly healthy and don't drink but I have been trying to improve my diet further, eg reducing sweet treats to a minimum. Just desperate to see the rheumatologist and get my treatment started.
I completely understand. I was struggling to walk for a while before they put me on stuff that worked better. I used to run lots and it broke my heart a bit. But I was on my feet for five hours on Saturday taking my nephew around the Warner Bros studios and I hardly noticed my feet until the end but only because I have a desk job(!) and I was exhausted! Ha!
I thought i was healthy re food but I did a 7 Day Diet “cleanse” run by a nutritionist and her menu ensured I ate so much variety of fruit and veg and wholegrains etc, and it gave me a really good introduction to how to eat a rainbow of stuff, which was fab. I wasn’t hungry at all. Tbh I was v cynical beforehand but it really helped. She’s doing another one in June. It’s around £30 for the week for the recipes, ongoing Whatsapp support and free yoga/pilates access for that time. It definitely opened my eyes to how to really up the nutritional content of my food (although I am realistic. We had a Five Guys on Saturday as a treat!).
ANYWAY. Please chase your RA team to be seen sooner, if you can. I have a v responsive team but still had to stamp my feet for enough support!
Mxx
Yes I have continued to work even though I struggle but I have no choice
I left employment (was managed out & was too exhausted to fight) & focused on my side job which is now my full time job. I find I go to too many hospital appointment for it to be viable for an employer so I’m glad I work for myself. The first year of diagnosis was horrible on my sense of identity, lots of grief, I was 30 when this happened.
I work 25hrs a week, mon-thurs. I have 3 kids so need Friday to recover from work before the weekend.
Just to note : I have other illnesses aside from RA .
I'd pay to see a Rheumatologist asap, as others have suggested. That's your priority at the moment. When you're on treatment you'll be able to decide about work. I got RA when I was already retired by the way, so didn't have to make work decisions. One thing at once, get stable first (which I'm sure you will.
Hi there ! Sorry to hear you're struggling. I was diagnosed 12+ years ago and with medication have managed to keep working. I now work full time at a SEN school which is challenging . I pace myself and rest. I'm also lucky to have good work colleagues and managers who care about my health condition. I feel very blessed. BTW I am 69 !
So with meds it is possible.
Best wishes ❤️
I haven't yet had a day off sick -I was diagnosed last November- but I am lucky that my employer is good, my job is a desk job and I mainly wfh. Before I got medication I did have to have the odd afternoon nap due to sheer exhaustion/fatigue but other than that have continued as normal other than attending hospital appointments. I would agree with the advice of getting a private appointment if you can. I was at the point of making one due to my GP messing me around but fortunately my local hospital has a fast track initial appointment so once I was referred I got in within a fortnight. I sat and sobbed in the consultants office as like you I had gone from no problem to using a wheelchair in less than 3 months but he gave me a steroid injection and started me on MTX and so far so good 🤞 So I guess it's a case if wait and see, from what I have seen and read its an up and down disease, but then so is life! Most people from what I can tell get some sort of happy medium and lots get to a point where life is pretty much normal. Good luck and hope you get seen soon 😊
Like you my RA came on suddenly and viciously just over 4 years ago when I was 57 and I thought that was it. All of my joints were affected, even my jaw. I was off work completely for several months.
I paid for a speedy private consultation to get help quickly but then chose NHS for continuing treatment. Luckily the consultant I saw did both private and NHS work so I continued with the same guy.
It took 18 months of trying different treatment combinations to feel like my old self again but life’s great now. Not quite as much energy as before but no pain or inflammation at all for 2 years now. I’ll always be on drugs to keep it this way and I try to better manage levels of stress which I know can be a trigger for me, but life’s good 👍
Don’t give up but find a level of work you can manage for now until you get a treatment plan that works for you. If your finances allow, think about a private consultation to speed things up. Good luck 🤞
I worked for 23 years with RA. I have found that stress triggers flares/inflammation. Don’t give up it does get better. Good luck
Hi , I'm still working lots of ups & downs. I found it hard to share my diagnosis at first & realise my colleagues are not familiar with flare ups etc....meds will help.
Yes, unless you have it, you don't really know much about it
Just you wait,.if you are unfortunate to be confirmed to have RA, you will find the World & It’s mother ALL KNOW more about RA than all of us combined.
They nearly all have an Auntie who had it…& cured it- by eating & drinking an unspeakably horrid diet!
Don,t even think of arguing…...,just say you will try it….then run!!
I carried on, I was self employed ( cleaner ) I was lucky after 2 years I went into remission.The first 2 years wasn’t easy I could hardly walk after a few hours but I did it. Upto the last 2 years I have worked 36 hours a week and also run a holiday let. I now have severe OA in my hands so it’s made it impossible to carry on but I managed a good 20 years with the diagnosis. I wouldn’t advise anyone to stop until they have seen a rheumatologist.A physio an OT will help. Your work place should make reasonable adjustments for you too. Speak to the company OH, they are normally very good. It’s very early days and as other comments have said until you are medicated it’s difficult. Phone and see if you can get a cancellation or your appointment pushed forward. Good luck.
Hi I lost my job through covid but as my arthritis affected my hands (and knees) I am no longer able to work as a typist, at one time 60wpm. Now can't mange 10wpm. Have taken early retirement.
I kept working for 15 years as a primary teacher. On bad days colleagues would swap my PE lessons and I would teach their English 🥰
I was diagnosed 2010 I still work full time. I am lucky that now I can work from home 3 days a week which enables me to not have the early morning chaos and commute. This gives me the extra time in the morning that my body sometimes craves.My treatment plan at the moment has stopped working, then I had a severe reaction to the alternative drug. Today I will discuss another alternative drug plan.
When the drugs work, they change your life.
I do believe in exercise. I eat terribly. Sleep is important, for me RA took it away, I either sleep like the dead or am awake for about 20 hours a day.
Give yourself time and medication a chance.
I believe giving up allows RA to win, I also believe that you need to listen carefully to your body.
Ok, I guess I need to get the right balance
Yes and that's the hardest to achieve. Balance. I get it wrong still. Go hell for leather spend days paying for it. For me it was being able to work from home 3 days a week. It created space in my day
I work fulltime mainly from home. I think if I had to commute in London rush hour, I could not continue. The last six months I have noticed I am slower doing things and have less energy and also less tolerant of work stresses! It is difficult to separate out the RA symptoms eg fatigue from a gradual disengagement with work but I am looking at retirement options (I’m 61) as I would like to pace myself better and use my energy on enjoyable things! Your body and mind will tell you if you want to continue with work but I have managed it pretty well. Best of luck
I have continued to work since my diagnosis in 2011. However, I have to be honest, I sit in front of a computer all day - so nil physical. Also I am employed, so get sick pay. I am very sorry for you. My parents were self employed, so I can imagine how difficult it must be for you to continue working with this disease. I hope you can work something out.
Don’t even consider giving up work until you know what you are facing.You could just be one of the lucky ones who find your magic meds first time round & in 6 months time will be surging ahead wondering why you ever considered throwing in the towel.
Also…I think someone mentioned pensions…once you know where you stand…do speak to a financial advisor who can explain there are pensions aimed at people with ongoing health problems.,
yes, until I retired.
I think I would go mad if I stayed at home and stopped working completely. Sometimes during flare ups work was the one helping me to get up from bed and force myself to walk to do anything. Now when I am in remission I in majority function as previously. Maybe with a little less speed and keeping in mind that there is this RA that can show me effectively when to stop. So I paste myself.Get the right treatment first, that's the most important, work less if you can but if you don't take plenty of rest. You will be able to do what you were doing while in remission. All the best. Hope your pain is manageable.
I was fortunate. I was put on mtx and hydroxychlorequine as soon às diagnosed and sorted out medication that worked. Worked full time until retirement. Good luck.
I’m sorry to hear you are struggling 😔
Please don’t feel despondent just yet, there are many treatments out there, you just have to find the one most suitable for you with the help of your medical team.
I work, can’t afford to give up unfortunately and I’m not young at 62 😭
Luckily enough, for now, arthritic fingers and toes crossed, I’ve found the right combination of meds, after a tough time for a while, which I know we all go through.
You can live a full and normal(ish) life ☺️
See how you get on once you have treatment.
When I was originally diagnosed via bloods and X-rays, I was told there was a 4 month wait until I could get a Rheumatology appointment at the hospital. I was off work for 6 weeks, in such pain. Thank goodness my GP eventually phoned the Rheumatology department herself and they discussed my bloods etc, then they gave her permission to give me steroids, in 2 weeks I was back at work. When I eventually saw the Rheumatologist, she was a bit peeved I’d been given steroids before she saw me, but she did understand…..eventually!
I did another 5 years as a Nursing Sister diagnosed aged 65 l did not retire until 70 yrs now helping out as a volunteer facilitator for 2 courses run from hospital now 85 not ready to stop yet despite several chronic problems. I find keeping busy helps me but awarecthis would not be for everyone. Good luck x
Good afternoon like you I have only been recently diagnosed , very similar onset came out of nowhere and very debilitating. Struglled to walk, put my shoes on and had pain in knees and shoulders . I eventually saw the Rheumatoid Consultant and once I got predisilone and mehtotrexate my recovery started.
I am now back at work , office based as HSE Advisor and now just started playing 9 holes of golf , but only once a week .
Keep your spirits up , the drugs will help once prescribed and some normality will return. There are also some really good online modules you can access to inform yourself about Rheumatoid Arthritis versusarthritis.org.
Take care and keep asking questions its tough to start off with but life gets better