I am a 26 years old Hungarian girl living and studying in the UK. I was diagnosed with RA a month ago but I had symptoms like morning stiffness and wrist pain for nearly 10 years now. I am on Sulfasalazine but it hasn't taken any effect so far. I am just wondering if there's any young person here who could share their RA stories. I feel so frustrated and depressed as I have always been so independent and active, never ever wanted to ask for help.
Now I am in the college and also work (where I am bullied because our work is mostly manual and I am much slower than others and sometimes need help as well) to pay off my tuition fee.
It is incredibly hard to manage pain and fatigue as I still have 1-2 flare-ups in an average week and after a working day I have to ask my friend to come and help with cooking, household, etc. and I am just 26! Overall it makes me angry as I had so many plans (making new friends, moving job, going to the uni) and RA stops me almost every day. My GP looks concerned when sees me and the local pharmacist was surprised that such a young person could have RA. I want to be just normal again!
Agnes
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EasternBunny
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I'm 22 and have RA. I was originally diagnosed as a child but when I was 15 I'd had no symptoms for quite some time so was discharged. My arthritis came back 2 years ago and it's worse than it ever was before. Like you, I'm really struggling with the important aspects of life like starting a career, getting through higher education. It's upsetting and frustrating when your illness stops you from doing what you want, or even need, to be doing.
It's appalling that you're being bullied at work. If I were you I would go see a manager about it and see if there's any way they can intervene. Keep a diary of what is being said to you and by whom.
In terms of medication, methotrexate managed my arthritis when I was younger. When it was under control I managed to live an active life but was always careful that I didn't do things I knew were too risky or likely to result in injury. Now though I've tried methotrexate and sulfasalazine without any success. I've recently started leflunomide and Humira but it's too early to say whether they're helping yet or not. The only thing that has helped so far is steroids but I don't want to have to rely on them as they're really bad for you.
Medications for arthritis can take up to 6 months to start working so you need to be patient with it (I know it's really hard to be and that's something I struggle with). I suppose we're in a time where we have the world at our fingertips and can usually get things almost straight away so it's hard when there's something where it could take a while to work. Some people never find a medication that works. Some are lucky and the first one they try helps. For some people the medication will help for so long and then just stop helping. No one knows what will happen for you as everyone is different. It's just a case of trial and error.
Thank you for your answer. Hope, you're doing well and Leflunomide and Humira have already kicked in What subject are you studying just now? (if I'm not too nosy
In my opinion, as a young person sometimes it is hard to understand that you should spend more time with medical appointments than in a pub, studying or just going out somewhere.
Bullying is getting sorted as my supervisor and co-workers eventually understood what is going on with me and I accepted my condition as well. It was tough cause I used to work about 30 hours before and my supervisor refused to give me the same working hours after a sick leave so we had many arguments about it. She even didn't believe me that I'm slower than anyone else because of my RA and not because of the lack of concentration, willingness, etc.
Wish you all the best
EasternBunny
Hi eastern bunny
(Love the name)
Welcome to health unlocked.
I'm older now but was 26 when I was diagnosed. I too had symptoms for years before. RA is not uncommon in this age group. I started on sulphasalazine too after diagnosis and it worked really well for 2 years. Then I got very very stressed organising our wedding single handedly and I had a flare. Stress affects my joints and eating sugar and junk affects my fatigue.
RA is hard but once your meds kick in you will get the hang of it. Try to rest when you can and look after your joints. Try to avoid repetitive movements like cleaning, typing, carrying heavy objects, driving, if you need to do these things take regular breaks. That's what's worked for me.
I was at uni in 2012 and got lots of support from student services. I would go see them. I got extra time in exams, equipment and they offered to get me an assistant. I found the ergonomic mouse especially useful and extra keyboard so I could stack my laptop up on books as my neck was an issue. My course was only 6 months but had I been doing a degree I would have qualified for a grant to help buy equipment.
About your job, you are well protected by the equality act. An employer cannot discriminate against you because of a disability. I suggest you call the national rheumatoid arthritis society (NRAS) helpline to talk to them as they have lots of experience of helping people with RA in your situation. NRAS can also put you in touch with other young people with RA and in your situation.
I am now 36 but never felt good! As long as I can remember. I then met my husband, had our child and went on living my life but in pain! I just got help 2 years ago but and was diagnosed with PSA. Still 2 years later - with treatment - I still struggle! I cannot even get off of steroids! I think we all do - with who we are. Whether to give up or give in! Whether to accept our limitations or conquer them, full well knowing we will pay dearly for them. No pain, no gain - right!!???! It is really hard and depressing most days to accept the fact that life, for us, will be an uphill battle of knowing what we have to do to control our disease. But always remembering that we cannot let it control us! It is always the little devil on our shoulders!
All meds take time to work and sulfasalazine is the less of the evils. I too, tried that but had to turn to MTX soon after. I am now on my 8th week of Humira and waiting for that to work. MTX, 18 months later, has caused my liver some problems. I have to eat clean and green because junk makes me feel awful. On the bright side, clean and green eating is the best for a diet and weight gain from prednisone!
Patience with treatment is necessary! Good luck in all that you do!
I am 29 years old and was diagnosed at age 25 (after a year of worsening symptoms). Now I am in remission on Simponi and Leflunomide. Your post reminds me so much of what I was like after I was diagnosed and before I got the right combination of meds!!
I too was working in a busy and physically demanding job and was trying to write my PhD propsal as I meant to continue my career at university having attained my MA degree in 2010. I was living in Belfast then but had to return to Switzerland when I was unable to work because of RA and as running out of money!
I absolutely HATED asking for help and I still am uncomfortable with it. But I hope my story shows you that it's possible to get this stupid disease under control and live a normal life again. I'm planning to return to uni and get my PhD finally or maybe do another MA degree. What are you studying?
I'd love to chat to you some more, you're very welcome to message me
Sorry, for my slow answer, it is just so busy around me having 1-2 medical appointments a week, writing my proposal and looking for another job. Hopefully we can find some time to chat soon
It is hard, because I came to the UK after my graduation from an MA of secondary music teaching. I didn't mind that I had to start an entry level job, far from my original profession as I wanted to work in the UK and study in the future. Now I'm on a sound engineering course and working in the hospitality
Life is like a rollercoaster as I don't want to rely on NHS, benefits, etc. cause I came here to work and study but I need help just now. One day I want to run back home then I want to stay and fight on the other day. Insane, isn't it?
Wish you all the best,
Agnes xx
Hi Agnes,
Sorry to hear that you have been diagnosed with RA. While the average age of diagnosis is 40-60 years, it's not uncommon to be diagnosed so young - RA can present from 16 upwards.
As Kikideelili said, our website nras.org.uk has a wealth of information on RA and we also have a helpline team, who are available on 0800 298 7650. They can put you in touch with one of our younger telephone support volunteers if you'd be interested in chatting to someone of a similar age and situation. We are looking for more younger volunteers though as we are getting more and more requests from people under 30! The helpline can also give you some information on your rights in the workplace so you may want to ask about this too.
This is a great place to connect with others so I hope you find it a supportive place to visit when you need to speak to people who understand what you are going through.
Sorry for the slow answer, trying to sort everything out round me
Thank you very much for your kind words. It is just hard to believe that arthritis can stop you when you are only starting your career and finding your ways and boundaries in life.
Bullying at work is a really sensitive question because I see my supervisor's point as well and she is right in a way.
She has an employee who is slower for some reason than anyone else, and I only asked her initially to ignore that I work 1/2-1 hour more than anyone else as we're paid equally. I also wanted to keep my working hours though. So we had many arguments about it...
First she didn't believe me while I was waiting for my diagnosis then she didn't understand why I want to keep my working hours when I'm "ill".
What eventually led us to a compromise was that my rheumatology nurse investigated my joints and told me that probably we would have to add methotrexate as well and I have to take my condition seriously and don't work as much as I used to.
I'm thinking about moving back to my family after my graduation if I cannot find any lighter job. It is a bit easier to let things go for a while as I realized, my health is more important now than my career.
I'm Vicky and i'm 23 this year. I was diagnosed in August 2013 and i'm currently on Sulfasalazine and Methotrexate. If you ever need to talk just message me :).
At first it was hard to come to terms with the fact that I was a 20 year old (a couple of months off 21) and had a 'serious medical condition'. These past few years have really helped me to come to terms with it and i'm not letting the condition define who I am. My bloods are still relatively high with inflammation but will hopefully see a difference in the coming months. I still have a few flare ups every now and again but i can cope - i swear i've got a higher pain threshold now than before i had this condition!
Thanks very much for taking the time to respond With the support of fellow warriors here and a great medical team, I am getting better day by day. But I'm pretty sure last year was the toughest time in my life. RA is a sneaky condition and it is difficult to explain to the others why you're not able to walk that distance or work 40+ hrs when you look absolutely fine (even if you want to run 2 marathons). However RA taught me to be patient and to appreciate more what I can achieve. I would be happy to chat sometime
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