Hi my name is Connie and I was diagnosed with RA January 2019 at 17 years old. I'm double sero-positve and I was initially put on methotrexate and hydroxychloroquine. I struggled with both of these drugs due to feeling ill the majority of the time. I have now been put on the biosimilar Amgevita, whilst also taking 10mg of prednisolone and am due to take my 4th injection next week. My pain is slightly better, but I'm desperately hoping I will be pain free soon.
Also, more importantly I've been struggling mentally, especially during lockdown. I am usually a very sociable person, and lockdown and isolating has been very difficult for me. Being on group chats where my friends are constantly making plans which I have to keep rejecting is making me feel even more isolated. I've found having RA as a teenager quite difficult as I feel none of my friends can truly understand or relate.
Thank you for listening to me, and any advice or tips would be really helpful and uplifting.
Connie
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conniegraham
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Being diagnosed with RA at any age is a blow and I have no idea how I would have coped at 17 years of age but you will. It may take a while to get your meds exactly right and when you do you will lead a normal life like everyone else. I was diagnosed with RA at 47 (8 years ago) and have always been fit. I played football at a good level and after retiring got into weights and the gym. My advice is keep moving, keep exercising as much as you body will allow.
Listen to your body, being young you will always push to do more, doing less is more beneficial to you. I am also a qualified PT instructor and qualified in dietary and nutritional needs.
Exercising will help your mental state and accept that people even those close to you will not understand how your feeling. I look normal (whatever normal is) and no matter how I try to explain my physical limitations it falls mostly on deaf ears so accept that and try not to get too frustrated with people.
Every joint in my body was affected from my toes to my jaw (polyarthritis), absolute agony and off work for 18 months but I got there and continue to train with weights and cycle. Avoid impact sports and running, I would say resistance weights to keep your synovial fluid thin to feed your joints. There’s is a lot of twisting and turning in tennis and only you will know what you can and cannot do.
I am sero negative and believe (I could be wrong) sero positive has more corrosive properties within the blood which may have some impact with your fingers for example, therefore staying active is imperative and should be part of your lifestyle. Do some research in relation to eating the right food, there is plenty on-line re- what to eat and avoid.
Meditation works for my mental well-being but it has taken a few years to get it right and still have a way to go to master. Check out Wim Hoff on-line with breathing exercises, brilliant.
I think I have went on long enough and could go on forever about the subject. Stay positive no matter how difficult and make some lifestyle changes. I hope this has helped even a little. Remember ask questions and discuss with your rheumatologist.
Take care and stay safe and if you want to ask anything at all I will try my best to help from my personal experience.
Thank you so much for your reply, its filled with so much helpful advice! I found your suggestion about staying active is so inspiring. Often with RA when I'm in pain I tend to stop being active completely which worsens my mental state - so I'll be more careful not to fully cut exercise out. Meditation sounds like a great idea, i'll definitely check out Wim Hoff.
Thank you for sharing your story with me I've found it so encouraging and helpful in how to move forward.
Happy to help, please don’t push the boundaries if your in pain but I get where your coming from. Too many people feel sorry for themselves and park their backside on the couch eating crap. I’ve seen it for myself, they will never get better because they are not managing the dis-ease physically or mentally.
I have a good feeling about you ConnieG, I’m 55 and fit as I can be and I would say down to my diet.
Check out Dr Bruce Lipton on-line, the guy is ahead of his time re- genetics.
What a pain - being diagnosed, and so young. I work in a primary school and used to support a young lady who was very poorly. They weren't sure what was up - the many specialists who were involved. Parts of her body would swell, for no apparent reason. I remember her doing her SATs and her eyes swelled up! I bought in this massive calculator for her - she was so determined to carry on! That was 16 years ago; I now work with her mum in the same school. She was eventually diagnosed with RA, but is still determined and continues to lead a full and independent life. She has RA, yes, but that doesn't define her. I suppose what I'm saying is - try and keep talking with your friends about plans etc - you need normality in your life; we all do. But you must also continue to be honest with them about how you feel and how you might have to adapt your taking part. They are your friends and will understand. I'm not saying they will all stick around because they won't- that's normal too! Keep up your hobbies as much as you can, and learn some new ones. Accept help offered and ask for it too, to enable your learning to continue at school etc. People can't guess how you feel - you have to keep talking. I feel like I've been lecturing you 😅🤭 sorry for that. I just remember what helped my friend's daughter become the strong young lady that she has become. We are here on this forum too of course, but keep talking to your family and friends too. 🙂
Thank you for your reply and advice. Reading this has been so uplifting, and you're so right it's easy to forget that RA doesn't define you. And don't worry not a lecture at all! What you've said about friends and family is so helpful, and I'll definitely bear it all in mind. And I'll definitely try and take up some new hobbies!
I was diagnosed last May at the grand old age of 59 and my medication is still being tweaked. I teach one to one at universities and discovered that one of my new first years had had RA since childhood. She's on a biologic and I found her experience of the disease quite inspiring. She's basically in remission, although she occasionally has sore wrists and she coped well with university life; I was one of the few people who knew about her RA, not because she tried to hide it but because it didn't affect her that much. So please believe that there is a good, happy life ahead of you. It might be slightly different from the one you'd previously envisaged but there's nothing to say that it won't actually be better.
This situation is difficult for everyone and it must be hard being away from your friends but I'm actually finding that it's a chance for me to get my medication right and meanwhile rest up without having to cancel work (I'm currently working from home) so I'm trying to make the most of it. Don't assume that you won't be able to join in with things in the future, it sounds as if your meds are starting to work which is great. I'm currently putting work things into next year's diary even though I know that I wouldn't be able to cope if they were scheduled for next week 😊
You're so right! I'm in my first year at university and although I've found it mentally and socially challenging, isolating has allowed me too actually get better and focus on trying to find the right medication. I've been ill and in pain most of my year at uni, so now is, as you've said, a perfect time to rest up so that I am actually able to plan ahead in the future.
Thank you so much this has made me feel so much more positive. I wish you luck with finding the right medication and hope you achieve your diary plans!
Well, you've done amazingly well to have started a university course so soon after your diagnosis 👏 As you say, you've now got the chance to take things easy, give your body a bit of a rest and allow the medication to work.
I took things very easy last summer and managed to return almost a full work schedule in the autumn but I did put various coping strategies in place and turned down some work (not natural to me as I'm self employed!) when I felt that it might be too much and put me in danger of flaring.
This might sound corny but you really have got your whole life in front of you so it's worth taking a bit of time now to get your health sorted out. Don't be afraid to asked for help with your course if you need it - there should be plenty of support available - and think about telling your friends what you're dealing with too.
You'll find lots of support here, of course and please feel free to message me if there's anything I can do. 😊
I do feel sorry for you , I have always said I would rather have it than my children , hopefully you will eventually get your pain under control it’s just getting on the right drug, Im a lot older than you , but from my experience when you have a good day just go for it and enjoy your time with your friends. Keep a journal of each day sometimes you don’t want to go on about it , as you say the only people who know what you are going through is the people who are also going tho it .
Thank you I will try and do that. And in regards to the journal that's a really good idea, thank you. Feels so nice to have people that finally understand
As 193639 said, it is a terrible blow to be diagnosed with a chronic illness when you are so young. Several things spring to mind when I read your post. It is great to look forward to being pain free, remission should be your aim and that of your consultant team. It's just a question of finding the right meds for you. Keep aiming for it. Remember, as you are young, you will benefit from all the research going on into personalised treatment and eventually a cure.
Secondly, it doesn't matter if you are 7 or 17 or 77 events such as illness, Covid 19 show us who are real friends are. I have learned that out of no where can come hands of friendship- people who might have been on the side line turn out to be the most generous and caring people. So keep yourself open to developing other friendships along the way. Give your friends time to adjust to your illness and gently remind them that you are doing your best but at present you may need some support.
Lastly, sometimes having / experiencing something like RA can help us develop tremendous strengths including compassion, determination, empathy, insight all of which can make us wonderful and powerful individuals. I would harness these and use them to make yourself a strong,determined and caring young lady. The very fact that you have reached out to us is fantastic.
Funnily enough, I often remember things told to me when I young that have stuck in my mind (although I may have ignored or dismissed them at the time). Mostly, it was good advice or observations on our fellow beings that now make me smile, as now I fully appreciate them and they give continue to reassure me. Keep strong, keep reaching out, contact NRAS they may be able to put you in contact with younger members. I do so hope you find the nuggets of advice and support you seek. Let us know how you get on.
P.S Do you like Jane Austen - if ever anyone is making you want to chew your leg off -have a read, if nothing else she was the most amazing observer of human nature and her phrases still make me roar with laughter as I can easily see people in my circle who could be one of her characters. Always uplifting and light relief. You either love her or will be indifferent but it is good to find a hooby, good book etc to take you away from present difficulties.
Thank you so much for your reply. I've found what you've written so warming, I hadn't really considered that through RA I can better myself and find new qualities in myself that I wouldn't previously think I was capable of. Its a nice way to put it into perspective isn't it? Using our diseases to better ourselves
Also, my family and I are massive fans of Austen (especially pride and prejudice, we always compare each family member to a character) and have watched all Austen's tv dramas, therefore I will definitely give reading her novels a go, thank you!
I must admit that I have read your responses to everyone Connie and I applaud you. They are so thoughtful, reflective and do you credit. I think your mother and yourself will make a formidable team and I wish you all success. Take care.
P.S My favourite JA quote at present if anyone annoys me is "save your breath to cool your porridge'. Gives us all pause for thought.
Hello Connie, I am sorry you have to join our community. You have some very good advice already. When I was diagnosed I thought the only way anybody is going to vaguely understand what I am going through, with constant pain and fatigue, is if they read about RA themselves as well as me trying to explain. I ordered leaflets and printed off some from the NRAS website and asked my friends and family to really study them and then talk to me about them. This helped my friends and family and me a great deal because it created some sense of understanding between us. NRAS have so much information and good advice, including peer to peer support. If you haven't been on their website, I would strongly recommend you go and have a good look. All the best and stay in touch.
Wow, thank you so much for your advice. Printing leaflets for my family and close friends is a wonderful idea! After seeing this, I asked my family today what they knew about my RA and I was shocked of how limited their knowledge and understanding of it was. It is difficult to sympathise and help someone if they don't understand, so asking them to read some information to grasp even a basic understanding is something that I feel will help me a lot, thank you.
I feel for you. Firstly I’m pleased you are getting treatment. My rheumatology department is shut apart from a nurse helpline. Secondly do not settle for anything less than control of your symptoms. There are many drugs available. It took 5 years for me to work through cheaper drugs that didn’t work before I was put on one that helps a lot. Don’t settle for second best. It’s hard when you are young but stick up for yourself. On mood: there will be good days and bad. Find things to do on the bad that you enjoy and get outside every day if you can. You know the NRAS have a helpline? Just ring: someone will listen and they can put you in touch with other people in a similar situation to talk to. Take care my lovely.
Hi and thank you for your reply! Your words are very inspiring and definitely prove that determination goes a long way. Im glad that after 5 years you have found an effective drug too!
You've had some good advice on previous replies - I just wanted to say welcome and sorry that this has hit you so young. but perhaps that means that a 'proper' cure will be found in your time. So much work is being done - even all the COVID research may shine a light on immune related conditions in general. And also that I find that your generation is much more compassionate, interested, open, and less judgemental than mine (I am ancient!). If you find literature that can explain RA to them you may find them ( or the best of them) to be very supportive.
Thank you for your reply. I have spoken to some of my friends about my RA and whilst most are supportive, there are some that are slightly judgmental and just lack understanding. I think that's why i'm finding this community so warming, I've finally found a group if people who truly understand without me having explain or justify myself.
To simply put it - my mum has been amazing. My mum was recently diagnosed with polymyalgia, so was the one person that could relate to me at least on one level. We are 'steroid buddies' and although hers is not as severe as mine, we can sometimes both feel in similar ways such as tiredness My mum is the person who inspired me to post on this forum and we are, as she says "fighting this disease together". I'm so glad that your mum sounds amazing too.
Some fantastic advice from everyone. I just wanted to say hi and welcome you to our forum. Getting in touch with NRAS would be good as they have so much useful advice and support and maybe put you in touch with people around your age for tips and support. I am fairly newly diagnosed myself in July 2019 at age 43 although have been diagnosed with lupus since the age of 15. Good friends will be there for you always. I certainly have found out who my true friends and who I can lean on when struggling. I still battle with having to cancel plans at the last minute but am slowly learning to stop feeling guilty about this. I am working hard at not putting lots of expectations on myself and trying to take one day at a time. I have a long way to go with this and at the moment have days when I feel like it is one step forward and two steps back. I’m determined to remain as positive as I can though. I am very lucky to have an amazing rheumy team, my employers are so supportive and I also have some fab friends who pick me up on my low days including some lovely people on this forum. My emotions are still all over the place if I am honest but I think this is a normal reaction as having RA diagnosed is a life changing diagnosis and I’m still having my meds tweaked and accepting there are no quick fixes sadly. There are so many treatments available now and hopefully once you find out what works for you RA will be very much in the background for you. Hang in there lovely and sending lots of supportive hugs your way. x
Thank you for your response, i've found everything that you're saying so relatable. I've similarly found it quite difficult to admit to myself that I have to cancel some plans when my body isn't up to it and hope like you I will start to feel better about it. And I completely agree, after being diagnosed with RA my emotions have been all over the place. It's so difficult to get to grips with the fact that RA is a chronic and life changing disease. Hopefully we can both start to use our RA as a positive and move forward :)) its so uplifting to be able to reach out to other people who are going through the same thing!
Everyone else has said all the good advice for already but I thought I would share my experience with you and I hope it gives you some reassurance. I was 14 when I was diagnosed (this was 1995) and it was tough dealing with this disease as teenager. My social life pretty much disappeared overnight, but being 14 I wanted my friends to understand but I found out who my real friends were and those are the ones I’m still friends with now. By the time I started university I somewhat controlled but not in remission and still suffered from raging high temperatures and lots of pain. I changed from methotrexate to leflunomide as I wasn’t coping with the side effects and this made a difference. I made it through university successfully and graduated with my teaching degree. I’m still teaching now, happily married and (before lockdown) I go the gym and exercise. I’ve done organised cycle rides of up to 60 miles. So although I can’t relate to the being isolated and having R.A. at age 18 years old I can relate to having it at age 18. I don’t let my R.A. define me but it is part of me and if I hadn’t had it I wouldn’t have met my husband or realised that some people are better let go while others are worth hanging onto and it has made me stronger. Once they sort your medication you can have a normal life, it might just be a little different to the normal you imagined. 😊
Hi Ruth thank you for sharing your story, I've found this really insightful. What you've said about having a slightly different normal to what I had previously imagined has really hit home for me! My mum and I keep saying that I'm "grieving my old life' rather than looking on at my new RA one. After reading your story it has made me feel so positive for the future. Thank you so much :))
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