16 and newly diagnosed

loopylou94

Heya,

I am 16 and recently been diagnosed with Psoriatic Arthritis. I am about to start Methotrexate and have a course of six or seven steriod injections. I have it in my hands, shoulders, wrists and knees. I was wondering if anyone had any advice on how to deal with the pain until then.

I dont know anyone who has experienced arthritis as a young person and although my friende are really trying to understand they don't really understand and I am feeling pretty isolated.

I am also reallly strugling at sixth form. nobody really understands at school and i feel really different to everyone else. THey all do P.E and I cant. It much worse if ive had a flare up and my friends have to help me out a little bit in opening things and if weve had to sit on the floor or on low benchs for a long perioud of time and i need to be helped up. Everyone looks and no one really understands why and if i try and explain they say things like oh yes but we all problems with our knees and things like that . Although my friends are rweally good to me and try and help me out and they really try to understand, but they just dont. I feel like im stuck in an 90 year olds body.
If anyone has any advice on how to live with arthritis it would be much appreciated.

Thanks
xxxxx :P

elnafinn

Hi Laura

Welcome to the forum but I am sorry that you have had to find us. I am also sorry that no one has replied to you on this zone. It must be so lonely and difficult for you at your tender age, trying to explain to your friends and so on and I can well appreciate that you feel everyone is looking at you when your friends help you on your bad and not so good days. No one likes to be stared at, especially at your age. Peeps do post about ways to help ease the pain and so on, on the Living with Arthritis zone. You could also give the Helpline a call on
0808 800 4050 - they are a great team and many of us on here and others have been helped immensely by them.

Have you heard of the Spoons Theory - a way of explaining to others how you feel. You can google it, if you are interested. Some people find this useful.

I have OA but I find that wheatbags are comforting, those that you heat up in the microwave. I love my electric blanket too.

Do join us on the Living With Arthritis zone. You will be made very welcome. Many of us are older or much older than you :roll: but peeps in their early twenties call in there or even younger sometimes. It depends what they wish to ask as to whether they think us "oldies" may be able to offer advice.

I wish you well

Look after yourself,

Elna x

Lauren.-321

Hi Laura,

I'm sorry school has been hard for you but I can't offer much advice myself! I feel the same in a lot of ways. I hate moaning and groaning though and if my friends sometimes ask me if I'm OK because I'm limping a little I just say I'm fine or laugh it off. They know I have problems with my knees and hips but they have no idea that I'm in pain all the time!

Hope the medication makes it better for you!

Lauren xx

dreamdaisy

Oh loopylou, you poor, poor girl. I am so sorry, I too have PA but I didn't start mine until advanced old age (37, but went un-diagnosed until aged 46). It is so hard to explain this sort of thing to people who are, basically, healthy - no matter what one's age. I do think that you should be excused things like PE - it is far too harsh on your joints - but if it is something that you enjoy then, somehow, some form of compromise would be good, yes? My version did not follow the classical form - and I learned to deal with the pain over a number of years. As you are so young I am not entirely sure what forms (or strengths) of pain relief you can have - I am sure your GP can help on that front. I am certain the things I take are not appropriate for you. I wish I could be more constructive but I am not doing too well at the mo, for very dull reasons. I will keep you in mind and if I have any bright ideas I will come back. I wish you well. DD

stephiey

Hi Lou, sorry to hear about your troubles, I know how hard it is and how alone you can feel. In Stephanie & I'm 18, I've had arthritis since I was 4, was in remission when I was 13 and it came back when I was 16 so it was like starting all over again.
Talk to people at your sixth form, if they ask questions, explain, I know it's quite awkward, I felt weird telling my little story 10 times a day but it helps people understand and raises awareness. I had people helping me at sixth form all the time. Keep positive, try not to get too down and if you do make sure you talk to someone, message us on here, we'll always listen. I try to keep kind of busy, focusing at sixth form was hard for me too when I was in a lot of pain and explaining to my teachers was a big help as I got extended deadlines and breaks during classes, they even sent me home a few times and emailed work. I know it's a very hard adjustment to make but you're definitely not alone! Keep positive Hun and try your best to keep battling on. Remember how strong you are!
If you wanna PM me feel free add me on Facebook if you have it; [NAME DELETED]

Good luck, hope things get better for you, remember to keep posting on here so we know how you're doing.
Take care!
Xoxo

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loopylou94

Hi all,
Thanks for all your kind messages and i am going to try and explain it more to my friends. Like you lauren i hate moaning to all my friends but i am going to try and explain to them so they understand. i will try aln keep you all posted xxxx

Lisaa

Hi. Im Lisa and im 19.
I was diagnosed last year with Rhumatoid arthritis, in nearly all of my joints. I know exactally how your feeling. All of a sudden it feels like your independance has been partially taken away, and it feels awful not being able to be the same and do the same as your friends anymore. At one stage i was unable to get out of bed or dress myself without help from my mum, (not much fun at 18... i thought i was done with that when i was 4 :P) and i ended up haveing to leave college.

As for asking for help, that gets easier with time. I now have no problem asking people to open things, even complete strangers when im out if they can open bottles, people are always very nice. Try and go out and enjoy yourself, stay positive. I even managed to go to T in the park last year, camping wasnt as easy as before but my friends and i just had a laugh as they helped me in and out of the tent, up and down from the ground and on and off with my wellies. If you try to see the funny side, things dont seem quite as bad

I'm on methotrexate and get steroid injections too and it has made a real improovement to my joints, i hope it does the same for you

keep smileing
Lisa xxx

loopylou94

Hi Lisa,
Thanx for replying. I am starting to get my head around it all. I am trying to look at it all in a possotive light but that is hard when i am having a bad day but i am giving it a good go. I got some AS results today and have foung that it has affected my grades quite a bit so resits look like the only option for me now so hopefully i will be able to better in my exams in the summer. Its getting really boaring trying to explain to everyone all the time what is going on. Hopefully things will get better soon. Hope you are ok and your joints arent too bad at the moment xxx

skinnylizzie

Hi Laura

I'm really sorry to hear things aren't easy for you at the mo.
On a positive note, there are some great treatments out there for arthritis, so it's a case of finding what suits you, and I hope they work really quickly for you.
I had M.E when I was in my teens and missed out on my high school years, so know how you're feeling with regards to feeling lonely and isolated and trying to explain how you feel to friends and family etc.
It's not easy when you want to be out there doing things! But hopefully once they can get your pain under control and the methotrexate kicks in, it will really help.
It's hard when you see your friends doing things and you feel restricted because of your health, but remember, it won't be forever...you will get there!
With regards to college and things, they should have a student services team who should be able to help you and speak to your tutors on your behalf about your difficulties at the moment, and perhaps it might be worth meeting up with someone from the support team as I imagine it is similar to uni in terms of support and they might have ideas to help make your studies a little easier for you. They should be able to offer extra time in exams so you can move around a bit extensions on assignments etc.

I have inflammatory arthritis and am at uni at the mo, but I'd be happy to chat if you want to, so feel free to PM me as I know what it's like being at school/college with health issues so if I can help in anyway let me know!

Take care hon

jellybean

Hey,

I'm 16 and have had Juvenile Idiopathic Arthritis since I was 3. I am currently on Entenacept injections, I used to be on Methotrexate but found I had a really big fear of it and refused to take it in any form. To cope with the pain I take Paracetamol or Co-codamol (my friends call me 'The walking pharmacy')

I totally understand how you feel with college and friends, especially AS results. I'm definitely doing re-sits this summer.
As well as the Arthritis I've also got a number of other health problems that prevent me from going to college and have contributed to my depression.

I also find it hard to talk to my friends about my pain or if I need help, but I suppose this comes from being bullied when I was younger. I also find it hard to talk to family as well.

I've also said many times that I'm an 90 year old on the inside

If you want to PM me that would be great, I've never really had the opportunity to talk to someone my age who can understand the pain and isolation.

Jess x

loopylou94

Hey, Thank you for all your kind messages and thought i would give you an update. A couple of weeks ago i decided to stop feeling sorry for myself because there are plenty of people who are worse of than me. Over the last wee things have suddenly got much better. All of my friends are saying that i am more like my old self. I think this might be a combination of many things such as the pain has eased i am not feeling sorry for myself and the wether has been better to. So i am feeling much hapier and also less issolated and that is all down to all you loveley people. So I can't thank you enough.
Hope you are all well and things arent to bad. I will keep you posted I would love to hear from you all so PM me any time.
Hopefully speak to you all soon.
xxxxxxxx

Scarlet

Hi loopylou

I'm glad you are feeling more positive about things now. How are you getting on with the methotrexate? Hopefully it is working for you and you are not suffering as much.

I was 21 when I was diagnosed with RA, and like you I didn't know anyone else with this condition. I think I was quite lucky as my friends were very supportive and understanding, which really does make a world of difference. I always remember the time I was sitting in a garden with a group of friends, struggling to get up onto my feet and a big pair of hands came from behind me and lifted me up into the air haha, it made me giggle. I think unless you've experienced the pain of RA you can never truly understand quite what its like, so it must be difficult for your friends to try and comprehend.

I've had RA for 5 years now, so if you have any questions feel free to ask :-) keep positive!

loopylou94

Update.......
Thank you for all the kind messages. I just thought id let you know how i am getting on. I have been on meth for 10 weeks now and it is making a difference the rheumy is really pleased with how it worked. Ive also haqve steroid injections in my fingers and wrists. Although they have worked and my hands are much better. THey got a lot worse before they got better. My friends are coming round to it and they really try to understand. I am trying to get mmy life back to how it was (as much as possible). I went to see the physio for the first time this week and she was fantastic and has given me exersises but also understood and told me i needed to chill. So things are on the up, not perfect but getting better.
Hope you are all well and not into much pain.
i would love to hewar how you all are.
xxxxxx

SaitenMar

Welcome,

Everything you described in your opening post sounds so very familiar, though in some respects I was lucky to have had gold injections and steroid injections that at least helped me for a year or two in my teenage life (though it was a very uneventful life ) I was eleven when I was finally diagnosed (which is a confusing age as it is, let alone adding a form of arthritis to the mix) and I very much understand your pain and frustrated. Friends never really understood the problems I was going through and neither did the rest of the school. You can't make them understand, but you can direct them to the right places providing the right information.

I to at to give up P.E and most distressing for me, football because it simply became to painful. Even after eleven years of living with the condition I'm still learning so much, it can be overwhelming. So advice, I'd say look after your mind as much as your physical well-being. I found that doctors never even spoke about the mental effects of living with a chronic condition. You've already found a community of sufferers who better understand what you are going through, that's important. For many many years I did my best to not acknowledge what I was suffering with. It's only these past three or so years that I have searched for a community myself.

Good to hear that you are doing better though, always encouraging. Don't be afraid to ask for help and advice!

rhianpalmer

Hi lauren

i am 17 and i have recently been diagnosed with lupus. All my friends know and it helps alot when they know...as i have been in a wheelchar and need help getting around even people i dont talk to in alevels have helped me. At first they didnt know what to do but my head spoke to them all saying that nothing has changed that some days and better then others. Im glad to read that someone round my age has a smiliar thing as i get it in the feet hips and wrists. When i got told what i had i felt like i was the only person in the world that was my age i thought you only get arthritis when your about 50 even more i didnt know it was possible to get it at are age!
i havent yet been given any medication as they dont know how bad it is yet so i am still under tests. You have made me realise that there is people are age that have arthritis. hope to hear from you soon
Rhian x

loopylou94

Hi sorry its taken me a while to reply. Im sorry to hear thet you are having a hard time and i understand how you feel. I had no idea you could get arthritis at such a young age either although i had a relative understanding of it because my dad also has arthritis. Hope things are better for you now hope to hear from you soon
Laura
xx

charlottestacey

Hey!
i was diagnosed with rheumatoid arthritis last week and am also 16 years old! although its a horrible thing to go through and i wouldnt wish it upon anyone its nice to know that theres people out there that understand and are actually experiencing the same things as i am. I am having the same trouble in the "friend area", they just seem to think im the same active person as i used to be, which im not and thats hard to come to terms with. I completely understand how you feel when you say you feel like your stuck in a 90 year olds body.. my mum was dressing me before my steroids kicked in! If you ever need to talk to someone the same age, just give me a shout! i'd love to know how other people are dealing with this as everyone seems so strong on this site! Take care and i hope you feel better soon! xxxxxxxx

dreamdaisy

Hi Charlotte, it's nice to meet you but I am very sad you have had to find us. I am not as young as you (one day you will be as old as me - staggering but true!) but I can empathise with the shock and dismay of discovering that you have arthritis. I hope it did not take the medicos too long to diagnose you and that whatever meds you are now on are beginning to help. The young persons forum is pretty quiet but don't be afraid to post on LWA or ChitChat, there are some younger people about there too and people will reply. You take care and I hope you start feeling better and getting to grips with it all soon. It's not easy, no matter what one's age - the change to one's life is astonishing. I wish you well. DD

penguinscarf

Hey everyone,

I was diagnosed with rheumatoid arthritis a couple of months back when I was 16 too! I'm now 17 and its in nearly all my joints to some extent so I'm finding it really frustrating not being able to all the things I used to be able to do so easily, especially with going out my friends as its so much harder to get out the house now. Also being on methotexrate and various other drugs means I can't drink which just seems to make things a little harder when you see all your mates enjoying themselves, doesn't bother me too much now but I think it will be worse when my friends start going clubbing and when I go to uni. Would love to talk to some other people my age about it!

elnafinn

Hi penguinscarf

I am sorry to read that you have been diagnosed with RA at such a young age. I wondered if you may think it a good idea to call The Source helplines who offer confidential support for young people and the parents and families of children with arthritis. You can call them on 0808 808 2000 (10am-4pm weekdays).

If you go to Home, at the top of the screen, you are able to read more about The Source helplines and see how many people have been greatly helped.

Look after yourself and I wish you all the very best,

Elna x

Starburst

Hello everyone,

Although I'm a bit older than some of you, (I'm 23 and was diagnosed 2 years ago) I was nodding along at a lot of issues people addressed. A dilemma for me was that I wanted people to know about my RA so they don't expect too much of me but also I want people to remember I'm still Sophie inside. I made the decision to tell a few close friends about how it really is for me and although it was hard, our friendship has improved because they really understand. There's a lot of ignorance out there about arthritis. I don't blame people either. I didn't have a clue about it until I was diagnosed. My advice would be if you're able to confide in a best friend or a close friend, then do. I was dreading it but it's made my life easier. I find my friends include me a lot more without expecting too much of me. I don't want to feel like an invalid but I want to be included too. They know I can't come out clubbing with them but it doesn't mean I don't want to be their friend and now they understand the reasons behind why I can't go.

It's perfectly normal to feel unsure and 'different' when you've recently been diagnosed. Two years down the line and I still get feelings of sadness when I think about how my life could be. It's easy to lose sight of who you are but I know I'm the same person as I was before, albeit with some physical struggles.

Regarding alcohol and methotrexate, I would say you can have a drink or two. I would avoid a drink or five though. When you're young it seems like everyone is drinking but actually, they're not all drinking. I've found that those who drink just don't talk about it but there is absolutely nothing wrong with it at all! If you have a coke or an orange juice, no one is going to know if you have a shot of vodka in it or not. I always used to drink diet coke and say it had vodka in even though I didn't. I've always been on medication (for other issues) and felt really embarrassed when it felt like all my friends were drinking and I wasn't.

Sorry this was long. Anyone can PM me anytime if they need a chat/friend. Sophie xxxx