I'm new to this! I'm 23 years old and have RA. Sadly I've had it for as long as I can remember, actual diagnosis was when I was around 7. I've been on many medications over the years, methotrexate, sulphasalazine, humira, cimzia, actemra.
More recently I have had significant joint damage to my knee, jaws, and elbow. my RA is now causing osteoarthritis but at only 23 this is very daunting. Wondering if there are any other youngsters going through a similar thing? (hopefully not but if so, talk to me!)
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AmyDee207
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Hi I'm young too and I know what you mean. Everyone looks at you and assumes you are young, fit and healthy. Especially at work. I haven't developed any OA yet. So that must be even worse for you. I'm mainly here like you to talk to more young people. It always seems like we're the only ones suffering.
Totally agree! I think people struggle to understand the effect it has on you because of the fatigue side of things. It's not just joint pain. But they look at me and think wow you're young, you should be full of energy.
Yes I'm completely with you. The tiredness that comes with this disease can be more debilitating, especially while you're at work. The problem is as well that your employer expects you to give 100%. That creates pressure and stress and that affects my RA symptoms. It's difficult to juggle everything. I personally would like to work less but bills still need to be paid and I've only just started my adult life.
If ever your spirits 👻 👻 lag, consider these even younger folks, who are working through the disease: Katy, Cole, Jenn, Joseph: healthunlocked.com/nras/pos...
Very best wishes to you AmyDee207, Crazyxxx, & all you young’ uns out there.
You can do well & have much realistic hope (& 🕰) on your side. 😌 🙏 🍀 🌺 🌞
(Very welcome, AmyDee207. 😌 🙏 ) Kindly keep laser focus 👁👁 on improving/ healing ( healthunlocked.com/cure-art... ) as best you can in each moment. You’ll do as well as your youthful peers & become a ‘living example’ of what is possible. 👍👍
Hi, I was dx age 6 in 1971 and have lots of joint damage. I hope you are receiving better treatment than was available when I was younger. I was one of the first to go on MTX, but I have to say its been the best drug so far. I too had joint damage early, at 24 - I can remember my right shoulder seized up and was excruciatingly painful when I was typing at work. Since 1998 I've been offered shoulder and elbow replacements but still haven't had it done. My surgeon says he wont be retiring for another 20 years, so just let him know when I'm ready! I managed to continue working for 22 years. Good luck!
I think once the joint is damaged then there is no going back. So I've been told to still continue with the medication to keep other joints from being affected by RA but its unfortunate they cant do anything about the already damaged ones.
At NRAS we run a Telephone Support Network where can put you in touch with someone around your age who is also living with RA, i can think of a couple of our volunteers that would be good for you to chat to. If you would like to know more or think you might like to speak to an NRAS Telephone Support Volunteer, please call the NRAS Helpline on 0800 298 7650 or email helpline@nras.org.uk.
Hello... I’m not as young as you but went through something very similar. I was diagnosed with late on set JIA. I went undiagnosed for over 10 years. At the same time, I was also diagnosed with Osteopenia. To be honest, at the time I felt numb and didn’t properly come to terms with what I had. I’ve always had the attitude of just getting on with things and there are people worse off than me - which is fine, but I think I’m hindsight I should have paid more attention to it. That’s not to say I should dwell on it, but it’s a fine line between letting this disease consume us and define us against giving it the attention it needs. I have a bone density scan on Monday next week. They are keeping an eye on it periodically. At the mo, in addition to DMARDS for my JIA, I take alendronic acid for the Osteopenia. I’m struggling taking the Calcium & Vit D supplements as every type affect my stomach. How are you feeling about it? Has it impacted you significantly? Gentle exercise helps me and I’m trying not to get stressed which causes flare ups! X
You are completely right. Because I've had this condition for a s long as I can remember I have learned to just deal with it. And that sounds like a good thing but the unfortunate thing is I have missed out on other problems. Because my body is usually in some sort of pain at any given moment I ignored some extra aches and pains I maybe shouldn't have and I can't help but wonder, could this have been prevented? It is unfortunate that the medication bothers your stomach as much as it does. I struggle now as I get older where I'm nearing an age of moving out and starting a family. The mental side really does begin to take its toll on you. Take care
Hiya, I'm 26 and newly diagnosed. Had joint problems for years with Hyper-Mobility.
On treatment now and hopeful although feeling nauseous with it so far. Trying to work though the pain and fatigue because my career is starting to kick off, but long journey to and from work is a killer. I have one child too so busy life but my husband is fantastic.
That's lovely to hear you have such a supportive husband! It's also interesting as I too have hyper mobility. I was diagnosed with this first I believe. Good on you for managing the career and a child. All the best
hi amy..I was diagonised with seropositive rhuematoid at 22yrs with jo1 antibody positive.really the pain is unbearable.bcz of the medications evn my sgpt,sgot levels increased along with constant stomach pain and vomating,was feeling so weak with all of these.and evn those low platelete counts,but now coping all these day by day.feels so tired with all these in work.
Hi, sorry to hear you are having to go though this. I am 24 and was born with it but did not start any treatment till I was 12, after my 4th surgery. I hate this condition as it is mostly unseen so unless you have it most people do not understand why you are tired or sore and do not want to do something. I am waiting on my 8th surgery now for my knee and hoping I get it soon as I am supposed to start classes in September. What is the most annoying thing to you??
Seems like you've been through a lot! Yeah, its definitely hard getting people to understand that it isn't just pain, its fatigue and total exhaustion without them thinking you are lazy or pretending! I can't live my life to the fullest and it is the hardest thing. They refuse to operate saying that I will definitely need a new knee in time but its too early at my age. Frustrating that I want them to understand that I want a good quality of life now though
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