Hello,
I’ve recently been diagnosed with R.A. as a young male. I went from playing sports most days to being almost bed ridden within the space of a couple of months. Reading through other posts I noticed people mentioning exercise in moderation. Is it actually achievable to go back to playing sport/lifting weights etc down the line or is this just unrealistic? I was told my blood test came back very high, I believe it was the Anti CCP that exceeded the testing range at <300.
Thanks!
Hi,
Sorry to hear about your diagnosis but welcome!
It very much depends on how it goes with your treatment, dmard's take a long time to get going properly and may need to be tweaked or changed along the way but if they work well for you then lots of things could be achievable. Everyone's journey with RA is different, just have to be patient and see how it goes. I'm now in remission after 15 months and can now do my 10k steps every day, some days it really knackers me though! (but I'm an old girl 😂) and I'm aiming to get back to swimming and step aerobics (possibly) when the leisure centres reopen.
Hope it all goes well for you!
I second what you have said darling. It won't happen overnight though so JFlay is right when they say is be patient and i mean patient as you won't be sorted overnight.xxxx
Thanks for your replies.
When I was first diagnosed 4 years ago I was a fitness queen and my meds worked quickly and I continued 95% of my fitness but slowly things deteriorated and last feb RD spiralled out of control and as the year went on I did less until September when my classes stopped. I still haven’t got the mix right on my meds . Fatigue is an issue after exercise but my joints struggle. Some people on here do marvellous . I hope I can eventually be one of those. Very early days for you don’t push yourself while your disease is uncontrolled you will do more harm than good. Sorry this has happened but you have come to the right place for support collectively the knowledge on here is brilliant
I personally believe that this forum can be a bit unrepresentative, as at any moment in time the people who are mainly active on here are the newly diagnosed and those who have the most problematic disease. There are others (like me) of course but not as many of us “managing just fine” crew.
Here is an old post from Lucy11 who was and still is a competitive endurance athlete. It might help you feel optimistic
healthunlocked.com/nras/pos....
I'm managing just fine too, thats a great expression. Thank you I just take the meds and carry on regardless under house arrest of course. lol
Thanks for your replies, like with everything on the internet there appears to be a mountain of conflicting information so it is encouraging to talk to people going through the same issue.
I can't comment on the sports aspect as I'm the original couch potato 🥔🙄 but when my GP first referred me to Rheumatology she warned me to be careful what I read - particularly on the internet. I stuck to "official" websites as much as possible and followed her advice to ignore anything older than 5 - 10 years old as medications are improving all the time.
My medication is still being tweaked but since starting it last May, I can honestly say that I'm 70 - 80 % better and I have high hopes of continued improvement.
This is a fantastic place for information and support but as Helix says, it's the nature of the beast that the many members who are doing well have less time (and inclination) to post as they are busy getting on with their lives 😊
That’s encouraging to hear, thanks.
Hello Rashford, welcome to this site. It's a difficult one to answer really as we all will have things in common having RD but will also have things that are different and unique to us. I was 37 when I was diagnosed 18 years ago, prior to this I was a very healthy, active and fit person. Initially my RD began 'testing' my body affecting different areas one minute then gone the next. However I was able to work around this and more or less continued to live a normal life. I'm not saying it was always easy but I managed, then way down the line something happened in my life which had the capacity to turn this all around and the effect of this have dramatically changed my RD and now it's associates (other illness) that has crept on board. So in essence what I'm trying to say is each person will be different and be affected differently, as you may read some still hold down jobs, some will be in remission, some may continue to exercise while others will struggle with their health and day to day activities. It's a complex disease and our fine wiring within each our bodies is so different. What I would say is listen to your body, get good and reliable information and advice about RD and apply this to your own unique situation and journey. Life isn't over with RD, it's about perhaps looking at it in another way and making changes or adapting if and when needed. Never let RD define you. Take care
Thanks for your reply. I’m in my 20s so it’s a lot to take in but you’re definitely right about looking at life in a different way. I’m fortunate enough to have an office based job where I can work from home regularly so I can hopefully continue working for the foreseeable future.
I suppose the worse thing about the illness is the fact that it’s almost laughable (at least to the younger generation) where you receive the same old comments ‘isn’t that what old people get’ etc etc.
If I and others on this site had a pound for every time people made or have heard comments about old people getting it or 'my uncle had a touch of that in his big toe' or all the misunderstanding comments we get having RD we would all be very rich by now. 
Wishing you well and all the best to you.
🤬🤬🤯yes those comments I’m afraid show the ignorance not just Joe public but some medics as well. I refer to it as Rheumatoid Disease it does stop the silly comments to some extent but I truly believe it should be redefined as it is just much more complicated than just our joints. Not everyone agrees
Kids get it too!!! You'll learn to laugh at them or join NRAS and be an ambassador to spread the real truths!!
There is a good chance you will get back to your sports, possibly not quite to the same degree as previously. I was diagnosed just over a year ago aged 70 and I was a keen mountain-walker, going to the Alps and Dolomites. Similar to you I reached a point early on where I could not even get up from a chair and it was heart-breaking. However, last summer I went on a gentle hiking holiday in pretty flat terrain as a way of getting back to the mountains in due course, We have a couple of hiking holidays booked this year in Austria and the Dolomites, which I currently feel quite capable of doing, but now we won't be able to go because of covid-19. Sometimes fate is horrid!
You have most of your life ahead of you. There is time for you to get back into doing sport. I can't promise it will definitely happen as the disease can be quite (apparently) haphazard in its effects on different people. One thing I would say is that the doctors are wary of raising people's expectations too high and they will tell you what is likely to happen to an average person. They are not able to tell you the upper limit of what you will be able to do because that is partly down to the course of the disease and how well you respond to the treatments they can give you (incidentally there are lots of these) and it's partly down to what you commit to doing to help your condition, e.g. keeping moving, pushing yourself a bit, but not overdoing things.
I feel sad that you have this so young and I understand how awful it is to going from being strong and active to being dependent on someone else to help you dress etc. Many people have given you good advice and support here from their own experience. It takes time for the drugs to start working and that is hard for everyone.
Best wishes. Let us know how you get on.
Thanks for your kind words.
Hi Rashford. It's early days for you yet. The thing in your favour is your youth. It's hard to imagine that you will ever be free of pain when you are in the midst of a flare but it is definitely possible with the right combination of medications. Treatments have improved tremendously over the years. You don't say which meds you are currently taking but the sooner you start the better if you haven't already. I wish you well
Thank you, that’s encouraging. I’ve started methotrexate recently and have been taking pred tablets for a couple of weeks. I find the pred tablets don’t really do anything but have had several injections which were a god send.
Hi,
I was diagnosed last year and my Rheumy gave me MTX plus another couple of drugs to deal with this. It took 6-8 months to get me under control but now I’m about 90% back to normal, I still get tired but overall I can’t complain. Regarding exercises with weights, I was told to use machines to pull down (that is expand the joints) rather than push up and compress them. Just be aware that you’re not going to be able to do everything exactly as you used to, but you can adapt to doing most of what you did once you have this under control. Hopefully you can see that this doesn’t mean a complete change in life, just working with how you feel on the day. It does get better, just not overnight!
Best wishes
Thanks for your reply
Hello and welcome !!! I got RA in 2011 . And like you got it smash bang wallop!
My docs told me I was the worst patient to get it as I was always out doing stuff!!
They told me just get it into your head your body us telling you to rest a bit and they got my meds sorted. I certainly am now ( pre corona) back to getting out and going to gym and at my festivals.
If you havent found them already go on NRAS.org .uk website. Loads of info etc there .
You'll find people here looking for answers so dont be put off, ask questions here and just remember your looking for something that helps you.
Weight lifting with inflamed joints might make them worse and probably will hurt so find something you can do gently in the meantime until you can get back to doing what you can. I do find however resting up when I'm sure helps, same as if you strain a muscle, rest it up.and start gently when your numbers improve.
Most rheumy units have a physiotherapist and you can ask to talk to them .
So I hope they sort your treatments soon xxxxx
Thank you
When you are able to start back at exercise, you need to pace yourself. It might be helpful to find a suitably qualified sports instructor who knows about guiding people back to exercise from disability.
I seem to remember that the woman who runs our aquafit class said that she was a 'level 4' instructor (that's in Wales) with special training to help people with disabilities. And she has been very good building me up to managing to participate in most things, after I had originally had sessions in the hydrotherapy pool with the physios to get me moving again.
Interesting, thanks for your input.
Hi Rashford, so sorry you have had to join us but very glad to meet you.
I can only echo what everyone has said - RA seems like the absolute end of the world when it's flaring up, but with the right meds, the pain will go and you can get hopefully back to doing most of the things you love. I started on steroids like you, then moved onto a combo of hydroxychloroquine and methotrexate, which works for me. I am not sporty but do like to exercise, and I still do so - as everyone said it's about pacing yourself, resting when you need to and maybe adapting what you do if you need to. Don't despair!
Thank you
When you first get it it is awfull, im 59 but got it when I was 57. bed ridden shower 3 times a night to get rid of paid. Found that the doctors never gave me hope in that I believed I was going to be in pain for ever HOWEVER 2 years on 59 never in 20 years felt fitter regularly do 25000 steps a day go sea canoeing for miles. I suspect id had it for 10 years prior to the serious flair hence after the methotrexate stabalized I can bend get out of bed and walk. there is hope
Brilliant, thanks.
Hi - I’m sometimes maligned on here re my exercise comments but upon reflection I have perhaps come across as ‘smug’ at times !
I’m 42 and up until lockdown I hit the gym 5 days a week. Including lifting weights most days; started low and am pretty much back to the weights I was lifting pre-diagnosis.
Upon diagnosis I though my gym life was over but being careful and not over doing it means nothing has really changed for me exercise wise.
Long may it continue......
That sounds really positive thanks for sharing.
Hi
Welcome ,
Yes it's a bit of a shock at first.
Esp when you've been so active .
But you know what you will get on your meds , get sorted, and eventually you will get back to fitness.
Meanwhile keep moving, look after yourself, eat well , sleep well.
Try not to stress , you will get sorted and you will get a life back.
You may need to adjust what you do .
But hang in there try to keep positive.
We are all here to talk to.
I'm 56, had this since I was 40.
Life will go on believe me.
Take care
Dee x
Thank you
Just to say hello and welcome Rashford, I hope you find the group useful. Feel free to post or comment, lots of us have been where you are( I too was diagnosed in my twenties ) and the support from others who know where you’re at is invaluable.
Although I’ve never been particularly sporty (I had a lot of joint problems as a child) I did get back to going to the gym albeit taking advice and learning to pace myself were key. Look after yourself and don’t rush it. I hope the methotrexate starts to make a big difference to you soon 😊
Thank you!
I was in my 20s when I was first diagnosed. Now I'm in my 40s. There's been periods when I've been in remission and I've been a gym bunny and there's periods where I can't get off the sofa.
One word of advice I would give you is listen to your body and don't push yourself. Personally I've learnt pushing too hard can cause inflammation and send me backwards.
Exercise is important to keep your muscles taking the strain off your joints. It might just not be as strenuous as before your diagnosis.
As others have said everyones journey is different. I wish you luck in finding the right drugs for you as soon as possible.
Thank you
I knew a man who woke up one day and couldn’t get out of bed. He was 19 and studying to work in the theatre . He must be about 62 now and he said what helped him the most was Tai chi and that it helped to reduce inflammation and swelling. He also ,when I knew him ,ate very healthily .
It must be terrible to be diagnosed at such a young age and I feel for you. I was 38 with 2 small children ( I’m 67 now ). Read up on RA and people here will give you great support and advice. Try different things and keep an open mind and see if a plant based diet will help you too. It does for some people. If it doesn’t for you well you’ve tried. Tai chi is very gentle but calming as well. I found reflexology very beneficial . Don’t despair life will get better.
Thank you, I definitely feel more positive about things after hearing everyone’s encouraging words. I’ll look into what you’ve mentioned, thanks for the advice.
I am young and was diagnosed with RA. It took me about a year to get back in to excerise but I am doing it. If you have Instagram may I suggest you follow LWRA guy (living with RA) He is a young guy but often posts about the amazing things he is doing, obviously he has off days too but should give you some encouragement! It is early days you will get there.
Thanks, I’ll create an account and check him out. I guess I am an old man (when it comes to social media atleast) 🙈
Ha ha ha , he also has a website and a blog. Just google him. It will take time and you have have good days and bad, but you will get there!
I was 25 when I got diagnosed. It felt like the end of the world then. Now, it’s just something I get on with - in between walking the dog, swimming, painting and working.
Hopefully, with the right treatment, you can keep up your sports. Weight lifting can be hard when you are in a flare - I can’t even manage my 3kg hand weights when it’s bad 😂 But there’s definitely hope...don’t worry!
I know it’s early days yet, but if you can, try to use this as an opportunity to explore new things. Like maybe you could get into water polo (once lockdown is over) or some other sport that doesn’t put so much stress on your joints.
Good luck - and ask any questions, anytime xx
It’s good that you can get on with things, thankfully I have been able to walk the dog. Once I stopped playing football my lower body hasnt been too bad, I’m mostly getting elbow, wrist, finger and sometimes neck pain. Might give swimming a go! It definitely seems beneficial. It’s funny that you mention the 3kg weights, I was struggling to lift the kettle at time’s and it felt bizarre so I get what you mean!
Thanks for your response!
Hi Rashford20, sorry to hear about your diagnosis. I was diagnosed when I was 26 having been a keen runner, kick-boxer and hockey player so it initially hit me for six. I have continued to exercise regularly which I think has been a key factor in getting me into a much stable position with my disease now (I’m 35) I had to stop the high impact exercise though - moving from running to cycling and swimming and doing more body weight exercises rather than heavy weights. Good luck and hope you start to feel better soon!
That’s very encouraging to hear, thank you.
When I was diagnosed back in 1987, I enjoyed walking everywhere, but I could barely put one foot in front of the other. But after being started on DMARDS (Sulphsalazine initially) I was able to ride my bicycle, and took long walks in the countryside. I've never been really sporty though, just take things slowly and don't push yourself too hard. You'll get there in the end.
Thank you!
Hi, I developed R.A. in my mid 30s. I wasn’t super fit but loved scuba diving. I was able to continue diving and eventually qualified as a scuba instructor with BSAC.
Initially I remember feeling very down thinking I would not be able to pursue my favourite sport and talked about this with my rheumatologist. His advice was to continue diving as long as I felt I could. He did advise against high impact exercise. I continued diving into my early 60s until I broke a shoulder and this prevented me from scrambling up ladders onto boats wearing the heavy kit. I also took up kayaking and a bit of cycling after developing R.A. not competitively more bimbling around lochs photographing seals and otters.
Chat with your rheumatologist and a physio, as soon as you are able given the lockdown, to get there advice. Generally if your joints are inflamed don’t hammer them with exercise, gentle stretches to maintain muscle tone and range of movement is best whilst in a flare.
I was like you initially, standing at the bottom of the stairs in tears at the thought of the pain involved in getting up them, Not being able to pull my pants up or do up a button, pick up sauce pan or turn my front door key. It took time to sort out the best drugs for me but although I have never been as fit as pre RA I led a fairly active lifestyle, working and pursuing the sports above, for a good number of years.
So be patient, be gentle with yourself just now, things will improve. If you find you can’t keep up with your old sports try some new ones, I highly recommend scuba, nothing like being weightless underwater.
Thanks for sharing!
Welcome to the site. This is very much my personal experience and everyone is different. It is very difficult at the start until your medication is sorted. It is very much horses for courses and it can take a few weeks for meds to kick in. I have had RA for 18 years now and my life is mostly great now with a few flares here and there. I don't want to give you false hope because I have had some very difficult times but I want you to know that you can live a perfectly normal life apart from regular blood tests and visits to hospital. I hope you are like me and find the medication/s that work well for you. I wish you lots of luck. x
Thanks Sheila
Hi Rashford20, so sorry about your diagnosis. Are you sure you don't have some underlying condition like Lyme disease? Lyme can have a lot of different symptoms, and extreme fatigue is quite common. Since you were once quite active in sports, you may have gotten a bite and not even noticed it - quite common to never have a bull's eye rash, I didn't. I've been treating Lyme for just over three years, had it at least ten years. Doctors kept diagnosing other things because the ELISA test for Lyme they rely on isn't very sensitive and often gives false negatives. I had that test two different times, both were negative so Lyme was ruled out. I was pretty darn sick by the time I figured it out. One of my friends on Facebook suggested Lyme and connected me with her cousin who has it. Communicating with her, I realized that was what was probably behind all my symptoms over the years. I found myself a Lyme literate doctor who was familiar with the spectrum of symptoms. She ordered better tests (IGeneX here in the US; those in Europe probably use Armin labs in Germany). I was positive for Lyme borellia and have been positive for five other co-infections that are common with Lyme.
Hi Tracy, thanks. I did look into it but thought because I didn’t have the rash and live in the north of Ireland where it seems fairly uncommon it probably wasn’t the case. I use to spend a fair bit of time outdoors though so I suppose it’s a possibility. After going down another Lyme disease rabbit hole after you mentioned it I will speak to my doctor about it.
Thanks!
Many don't have a rash, or have it in places where it isn't obvious (such as the scalp). And don't believe doctors when they say Lyme isn't in your area, it is EVERYWHERE.
Don't expect your doctor to be much help. I saw over fifteen doctors over the course of several years, not a single one thought it could be Lyme. After I exhausted the possibilities at my HMO (neurologists, gastroenterologist, rheumatologist, etc.) I went to Mayo Clinic, and then two years later to Stanford Autonomic Disorders Clinic. Both are world class medical facilities and they didn't think Lyme either. To their credit, Mayo did test me but with the ELISA test which has many false negatives, mine was negative (as it had been two years earlier when tested by a neurologist at my HMO).
When I finally suspected Lyme, I told my GP that and asked for another test, a Western Blot. By that time I'd done some internet research and learned that false negatives were common with the ELISA test so I thought maybe I could get a better test. But she consulted the infectious diseases doctor at the clinic, who said since I'd previously tested negative then I didn't have it and refused my request for a WB test. At that point I knew I had no other option than to go outside the traditional medical system and find a Lyme literate doctor (LLMD).
Lyme is a shockingly political disease here in the US. The CDC and infectious diseases doctors deny Lyme can persist after a couple of weeks of antibiotic treatment. There is no insurance coverage and it can be difficult to find a doctor willing to treat with long-term antibiotics. This is because insurance companies have taken some doctors to court over their use of antibiotics and those doctors have lost their licenses and paid high fines. As a result, the LLMDs don't take insurance so they stay under the radar of the insurance companies.
Do some internet research, join some Lyme groups in social media to find others who may be experiencing similar symptoms as you.
Thanks for all the info, I’ll look into it!
Hi
Sorry that you have joined our ranks, but welcome!
There is plenty out there to help you and yes you stand a very good chance of getting back to your sports.
I too was practically bedridden with RD at one time about 15 years ago and was desperate, why me? And felt that life as I knew it had gone. My blood tests were a sea of red figures with one little blue line that showed that one thing was within normal levels the rest were way out!
Your Rheumatology dept is now your best friend, they will take you through the various medications and find the optimal combination of drugs to suppress your disease, but it takes time. 3 months on each drug to see if they work.
I suggest keeping a daily diary of the disease, what hurts, how long, what you can’t do and the emotions of how you feel. If you are really bad, phone the rheumatology helpline and tell you team, they will try to help in any way they can. Before seeing your specialist, condense it down so that you are sure to get the whole situation over to them.
Once they found the right meds for me, the RD is in remission and has been for about 15 years. I cannot begin to tell you how grateful I am for the technology that developed these drugs and the NHS and care that I have received.
You won’t believe me at present because you are in so much pain that you can’t move but trust me and trust your rheumy team, there is definitely hope for a full life, pain free and active. Hang on in there, let us know how you get on.
Best wishes
Thank you!
Hi Rashford
I just wanted to say, usually there is a multi disciplinary team supporting Rheumatology clinics ie occupational therapy, and rheumatology lead physiotherapists so make some enquiries there.
I started back using seated/assisted exercises, because I wanted to stretch muscles, and build up muscle to support the joints I am ready now to move onto a more rigorous class and then try zumba.
Like you, may RA came in with a bang,so as everyone says just be gentle on yourself at the beginning. I am now in drug induced remission, and can't remember the last timeI had a flare. It is a journey to get there but the treatments they have now are really good.
Wishing you all the best.
Brilliant, well done!
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