Any young people with RA????

[Marnie87]

hello, I'm 23 and was diagnosed in OCT 10. finding it really hard to cope at the moment with being 23 and having RA and not being able to do things my mates do. Just wondered how everybody else copes in flares ups and day to day stuff??

[nicki18]

Hi Marnie I am 42 so not as young as you but I think you have to take life day by day and let family and friends know when you have a difficult day and get help, as i tried to carry on for a while like nothing that happened but that didn't help me or the sitution. so i took any help offered but still did what i wanted to do without pushing myself. You can also talk to the OT and your hospital for advice on ways to make life around the home easier.Hope this helps a little, best wishes X

[Gina_K]

Hi Marnie, I am also in my 40's but I work with a girl who is 29 and she has RA. she was diagnosed when she was 21, you'll be glad to hear she is doing very well on methotrexate. She does get stiff hands and very occasionally takes a few days off if she gets very tired. She told me she can't do late nights at all. However, she got engaged recently in Paris and is in fantastic good form. She says she naps when she gets home and she paces her life, say she is going to a party she will try and have a lie down for an hour or two that afternoon.

Originally, the first thing she noticed was difficulty flushing the toilet in college and being very tired and losing weight. She is living a fine life now probably just does'nt take on as much stress as those in her age group, I noticed she did'nt go for a recent promotion, but she has a good job and maybe did'nt want any additional strain.

Gina.

[Hidden]

Hi Marnie. I'm 46 been diagnosed with RA for 17 yrs although my first symptoms started at the age of 28.

RA affects us all in different ways, there are also many more drugs available now than many years ago so don't be frightened by it. You will learn to accept and live you life a way in which it helps your ra symptoms. Once your consultant can get you sorted on the medication you need there's no reason why you can't live a good and pretty normal life. You will just need to pace yourself a little more, this is something you will learn over time.

Anything you need to ask at anytime just come on here, or if you just want reassurance or a little moan now and then that's ok too.

One last thing don't try and fight this disease, you will never win it will only fight back harder!! It's one of those diseases that you have to accept as part of you life I'm afraid.

Good luck, oh and welcome to HU! (sorry should have said that in the beginning)

Take care

Mandy xx

[Marnie87]

Thanks for coming back to me. I just feel like it's a never ending battle. My employer im sure thinks I make it up coz one day I'm fine and then calling in sick. Ive downloaded the booklet to give to my employer which has put my mind a little at rest. Soooooo happy I found this site. Definately feel less alone all I can say is thank you xx

[Hidden]

orry in my 40s too there people in their 30s on here.. sorry you are so young ,so hard xx

[Mel_]

Good afternoon Marnie87.

I'm really sorry you've joined the club as to say!

I could type for hours to you about my story; but I'll keep it brief. I was 29 when I thought something was wrong; move on a couple of months and a few blood tests and got a call from GP saying they needed a chat.

I felt that my world had fallen in on me. I was a new mum (baby was only 6/9 months old) and I was finding that hard enough to cope with without this thrown in too. I remember spending two days in bed felling really sorry for myself, which did no good for my state of mind at all. The thing that hit me most was that reading up on the internet I was sure that I'd never have another child; to me that was like a lose, as my husband and I always wanted a big family. But I now have two fantastic boys who make my life worth living, eveything I go through is worth it when I wake up in the morning and see their faces.

Education is key, ask qustions, lots of them. Do not be afraid of making a pain of yourself. I've been through some big highs and some big lows (see living with RA blog) but give yourself a focus, learn to slow down and listen to your body.

If you are not happy with the advice you get from your consultant ask to see a different one, if you are able to.

I'm not saying it's going to be an easy ride but your learn to adjust your life; I'm not saying you'll accpet the fact that you adjust but you do!

If you ever feel that you are not coping then let someone know, don't leave it too late to ask for help. Help is there if you shout loud enough; I've only just found that out after living with this for nearly five years.

Just about to try and answer your question on bloods etc.

Kind regards

Mel

[emandedmum]

Hi Marnie,

Welcome to HU...this is my safe haven, I'm glad you've stumbled across it too (I'm not glad you've got RA though). Ditto to all of the above by the way!

Like Mel I was 29, I had a 1yo and a 5yo and within a few short months I'd gone from doing everything for my family to doing nothing! As a stay at home Mum we were in big trouble but thankfully my OH, my close family, my neighbours and my friends have all stepped into help and we've somehow we've made it to now.

I too spent days in bed crying, in agony feeling like I'd had it, that I wouldn't get to do all the things I used to do (I even missed changing nappies and getting up to my baby in the night!) but those were the worst days and now, although sometimes it does get me down, I can think back to how bad it was then and pull myself up again. It's all part of the process. I think I'm finally getting there now after 4 yrs, mainly thanks to the lovely people I've met on here

I think that trying to pace myself (although impossible sometimes) is really helping, the meds are helping and not being afraid to or feel guilty for asking for help has made a huge difference. Explaining it to the people nearest you is worth doing as the unpredictable nature of RA means you need a few people to be on hand at short notice! Being honest makes you feel better too, if you don't feel up to going into work or going out then don't, rearrange if you can. If you know you've got a big night coming up then plan for it, rest up and I recommend a sleep in the afternoon!

I thought I was young to get RA and still get that reaction when I tell people ...the look of horror on their faces when I tell them I have RA, the look of sympathy when I tell them it affects my whole body, then respect as I explain what I (and my kids) have to deal with on a daily basis. It isn't nice but it's workable most of the time, the hardest thing is accepting it! I have learnt that there are ways to get around the niggles and I can still do most of the things I used to...except maybe the housework, the hoover definitely has my OH's name on it now

Stay in touch,

Jo xx

[Hidden]

Hi Marnie,

Im 33 I was diagnosed Jan 09, however I suffered for at least 5 years with wrong diagnosis before.

The biggest thing that got me down at first was no longer being able to go clubbing and dancing etc not just from the pain and disablity this diease causes but the fatigue, I wouldnt be awake at the time the clubs open now lol.

But Im slowley learing to come to terms with it and finding other ways to socialize more of a coffee and a chat or a meal and a glass off wine girl now.

Make sure you alow your family and friends in and let them help as much as they can.

Always try and pace yourself x

See your Occupational Therapist and get as much help with aids as you can, also see your physio I know excercise and movment might sound hard at the moment, but I find gentle movement excercises and hydrotherapy help me loads.

Ive had to cut my hours at work, but even though Ive had months off at a time I still intend to keep my job as long as possible, it keeps me going not just physically but mentally too.

Keep a good support group around you at all times, here is good, but friends family and your GP and Rheumatology team to you need all the support you can get some days (well I do)

Try and learn as much as possible about your RA, NRAS has some great info and a fab helpline if ever your unsure or worried about anything.

I could go on for hours but hands are killing me now lol

Take care

Julie xx

[Hidden]

Hi and welcome

There are other young people on here - def an 18 yr old who's had it since she was 6 years old and others too - if you click on profiles on the directory it should give you some idea and you can Direct Message peeps.

Haven't got anything to add to whats already been said - I was diagnosed in my 3Os but probably have had it for a good 1O+ years before that but as I was on steroids for another illness it was masked.

Try not to be frightened, it's normal to feel like that - it's a big adjustment but you will make it it just takes time. Information is power, so get yourself well read:-}

Cece x

[ciyoung]

Hi Marine, I am 29 now (still young; though i feel very old!!) and was diagnosed 4 years ago at 25. I try to stay positive, and althought diagnosed relatively young, the medical advancements in last 10 years have been really good, so my consultant says the future is brighter than 15-20 years ago - doesnt always feel that way, but i know he is right.

The main problem i find is fitting everything in, being a young professional and wanting to get ahead in my career, combined with regular flares and complete exhustion. At the start, i rfused to giev up going out with friends, working hard and doing what i want; as i have got older, i've found i need to pace myself much more and luckily have a great circle of friends who understand if i cancel plans at the last minute.

Trust your body and your instincts and ensure you have good support. Being diagnosed at 23 is tough, but you can still live and full active life, there are times i party till 4am - but it is all about being sensible and knowing when to stop, put your feet up and rest!!!

Do get in touch, I found the first few years really lonely, as great as friends and family are, no one understand how we feel - i found this forum a month or so ago, and it is fantastic to know there are positive, supportive people out there who understand and don't think you're silly for worrying about normal everyday life!!xx

[KatyEvans]

So glad to see so many people on here - I'm 28 diagnosed oct 2010 and been terrified ever since! Spent 3 weeks inhospital in November where I was younger by at least 60 years than any other patient and felt very very lonely. Finding this I feel so much better already to know im not alone

Xx