coping with RA when your young?

[holly2812]

i was wonderling if there is many young people on here in there 20s? i was diagnosed with RA when i was 19, now 22 and my RA is slowly getting worse, i have very good days when im fine and then reality comes crashing down and i cant walk or move for days. my RA effects mainly my knees, jaw and hands, but resently its been more hips, elbows ectt.... Sometimes i just find it hard to cope and wondered if there is any one on here who is in the same situation as me becuase i have no one who understands what it is like to have RA at a young age.

[Hidden]

Hi, Holly, I ,m so sorry to hear you sound so lonely. I' m afraid I am well past my 20's,30's 40's and so on, but I did have RA at 10, and am still going strong albeit with some probs in later life. I am sure there are some youngsters here to sound out with, and I am sure you'll be chatting very soon Can I also, mention Arthritis Care Forums, which have one especially for the young living with arthritis. I wish you all the very best and hope the doctors get you under control soon, there are so many good drugs to help now., and if I can ever be of help, just ask. Lots of luch Jennyxx

[Hidden]

Holly, I have just noticed a blog from td09 asking itere there any younger group members on 8 th June, looks like might be a good contact , best of luck,

Jennyxx

[Beth58]

Hi Holly

I'm with Jenny, way past my 20's but I did have A.S from a young age about 11 if not younger. I wasn't diagnosed until I was 33 and already had 4 children by then, I'm 53 now.

It was an awful struggle at times and I spent many an evening even afternoons crying as my body wouldn't do what I wanted it to, even doing the laundry or hoovering left me exhausted for the rest of the day and I had to force myself to get out to collect the children from school.

I do hope you find someone in your age group where you gain mutual support.

Beth x

[Hidden]

Hi Holly

Although I'm an OAP now (!) I began with RA at age 23. I do feel for you.....My advice is to keep on at the Dr's until they get yours under control. It should be able to be done in this day and age- but you must keep telling them if you cannot cope.It's your body and your life- so persist with them to get relief from it all. When your're having a bad day, remind yourself that a better day is around the corner. Good luck to you in finding like-age people to "chat" to; it will help you to know that others understand what you are coping with. Good Luck xxxx Kath

[Hidden]

Someone else aged 23 asked this question about a week ago so if you look through questions you will find it I'm sure. Lots of people came on and said they were young RAers too so you are definitely not alone. Little Em is 19 and a frequent blogger and hoping to give out information and support for other young sufferers. Take care and hugs - Tilda x

[Hidden]

Hiyai was also 19 when it first hit,now a very old 40 but I do know exactly how you feel.my top tip is get on the meds,not sure what your taking but I tried to stay off the strong stuff when I was young.mostly as people didn't explain to me how the drugs worked and the fact that if I went on th young I could come off them when I was thinking of having a family when I was older.in hindsight I wish I'd got on my methotrexate earlier as it has been life changing.

I remember when I was younger and it just being hard to keep up with my peers.they would spend thier weekends out partying and I knew if I did I'd be bed bound for the week. Still,it didn't stop me I just learned how to pace myself .Also recall the fear of will I be in a wheelchair etc.

If you want to message back feel free,I'd like chat!!

Take care and remember on here people do know exactly how you feel

Jo

[holly2812 in reply to Hidden]

heya, yeah it is hard, i do think my main problem is that i ignore and dont give in to my RA and keep on going though it and then i end up worse in the long term. iv tried alot of the drugs really, i often seem to get the bad side effects of them. im normally on, hydroxicloquine ( how ever you spell it), Vit D and Predisolone and end up taking regualr pain killers. But the steroids and painkillers have damaged my stomach and caused a hole, so i cant take them at the moment. So hopefully going to change as iv got worse since stopping them. when did you start methotrexate? iv heard alot about it and wondering if i should talk to my doctor about it. RA has mucked up my life really, as im currently training as a nurse, which im now wondering if im even going to be able to finish my training.

[Hidden in reply to holly2812]

Definitely talk to your consultant and ask if there anything you can take to slow down the progress of the disease.mxt does this but I think there are others you can try too.pain is a very personal thing but I try not to take much pain relief drugs and use massage,aromatherapy and Pilates instead.i can't say gives me total pain relief but it defo helps to make it more bearable.its also worth taking someone with you to the appointments.in hindsight I wish my mum would have been with me at the beginning of my appointments because she still doesn't get it 20 years later.also ask about benifits,just because your young doesn't mean you're not entitled.

Jo

[emsyb1986]

Hi holly

i am 26 and recently diagnosed i am really stuggling - feel free to message me if you would like a chat

xx

[holly2812 in reply to emsyb1986]

heya,

oh sad to hear your stuggling as well, the problem if its a ' good day' i think i can deal with little it of stiffeness, what am i making a fus about, but then suddenly a bad day happends wich has lasts a good few weeks of when i cant move at all and depression kicks in. my body is so up and down. How long have you been diagnosed for? on any meds, hows it all going? x

[beaker]

RA for me began at 18, l work for many years in factory jobs and sometimes the RA was so bad l had to go home early,sadly l can't tell you its going to get easier,its not, but over the years lv learn to enjoy the good days,and the bad days you just have to work thru them, if you let it get to you, the pain is treble, and being young l was able to lead a fairly normal life,so easy for me or anyone else to say to you, but as some one once said"dont worry be happy and stick 2 fingers up to RA, ps painkillers dont work so try not to take aboce the amount you should

[holly2812 in reply to beaker]

heya, yeah thats whats happening to me, missing work and going home early, luckly my work is very nice and understanding. yeah thats true painkillers only help some of the time, and resently iv had more problems with my stomach from the side effects of anti-enflamtory drugs. i just try to ignore my RA, but its all ways there.

[beaker in reply to holly2812]

ask your RA nurse or doctor about OMEPRAZOLE its apill that coats your stomach, from acid of other pills, whne l run out of it, with in days l feel bad evytime l drink or eat, to stop myself havin to many painkillers l use my mp3 and listen to upbeat music from my era showing my age now like the police. sex pistols, jam,and of course the boss bruce...

[beaker in reply to holly2812]

ask your RA nurse or doctor about OMEPRAZOLE its apill that coats your stomach, from acid of other pills, whne l run out of it, with in days l feel bad evytime l drink or eat, to stop myself havin to many painkillers l use my mp3 and listen to upbeat music from my era showing my age now like the police. sex pistols, jam,and of course the boss bruce...

[beaker]

RA for me began at 18, l work for many years in factory jobs and sometimes the RA was so bad l had to go home early,sadly l can't tell you its going to get easier,its not, but over the years lv learn to enjoy the good days,and the bad days you just have to work thru them, if you let it get to you, the pain is treble, and being young l was able to lead a fairly normal life,so easy for me or anyone else to say to you, but as some one once said"dont worry be happy and stick 2 fingers up to RA, ps painkillers dont work so try not to take aboce the amount you should

[Victoria-NRAS Partner Moderator NRAS]

Hi Holly

There are a few younger people with RA on here, and quite a few that were diagnosed at a young age, and HealthUnlocked is growing all the time, so we hope that these numbers will increase with time.

You are also more than welcome to give our helpline a call any time you need a bit of extra support. The helpline team can also put you in touch with volunteers that have RA. We do not have a large number of volunteers in their 20s and some of our younger volunteers have RA quite severely, so may not be at the same stage of the disease as you, but I am sure they would be happy to talk to you.

If speaking to a telephone volunteer or to our helpline would be of interest to you, please feel free to call us on 0800 298 7650 (Mon-Fri, 9.30-4.30).

Kind regards

Victoria

(NRAS Helpline)

[little_em18]

Hi Holly Im 19 and have had Arthritis for 15 years now. My arthritis has its ups and downs and its being a bit grumbly at the moment! Send me a message or let me know if you fancy a chat about anything

Emma x

[Hidden]

I saw a poster at my work today, it was aimed at young people with arthritis upto 25, it was advertising a fun weekend full of activities, speakers ect..... although this was in Aberdeen I'll check again to see if it was happening anywhere else, would that be any use?

[sherbygoat]

hi, im 29, i was diagnosed when i was 15 and i have to be honest it has slowly got worse. my friends and family dont really understand quite how bad things can change so quickly. one day im fine and the next day i cant get out of bed. i have just started aqua for RA sufferers which is helping, the worse thing to do is to just give up on exercise, as much as u may not feel like doing it it will help. let me know if u want a chat or anything as its always good to talk to people who have it too. take care,

clare x

[Hidden]

Hi Holly

The main thing to note is that you're not alone. This forum and website offers a lot of support and helpful advice (I really should use it more!)

I'm 23 now but was diagnosed with AS/RA at 16. I must admit the first few years were tough trying to cope with a big change in lifestyle, but now it is just a daily routine of stretching and Bi-weekly injections of Humira that keeps me on the up.

My opinion is to tell as many people as you can about your condition so that they can understand what you are going through, at least then they won't jump to conclusions and can offer support

Remain positive as psychology plays a big part in coping with the fact that you have RA.

Aaron

[VictoriaAnn]

Hi, i'm 21 nearly 22 and I was diagnosed at the age of 20! I'm here to talk if you if you want - just pm me

[Dolly84]

I'm 29 and waiting for my specialist appoint....that last comment sounds exactly like me. I'm really struggling atm