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If you're young and have arthritis please read... :)

canyoufelixcanyoufelix Posts: 7
edited 27. Feb 2013, 06:03 in Young people's community
So hullo there!

I'm 24 and was diagnosed with Psoriatic Arthritis just before my 24th
birthday, almost a year ago now. I'd been suffering with minor joint
pain for some years before but never enough to think that I might have
a problem.

Over the course of last summer I started noticing that my
wrists/fingers/knees/back was tender/painful, lifting things, opening
door etc made me wince in pain, walking started to become difficult
and I just felt constantly worn out and irritable. Convinced I was
dying, I went to see my GP who referred me to a rheumatologist and I
was quickly diagnosed from there...

I'm now undergoing treatment for my arthritis and I'd say I'm about
halfway there, I very much doubt I'll be 'the same' again (i.e. I
doubt I'll be playing 5-a-side anymore, my ambition of becoming a
professional guitarist looks pretty much dead in the water) BUT I'm
definitely heading in the right direction. Which leads me to my
point...


Whilst the rheumatologists have been great in talking to me about
treatment options etc, the one thing they can't do is talk to me as
someone who REALLY understands not only what it's like to suffer from
arthritis, but to suffer from it at such a young age. They could read
every textbook ever written on the subject and still not understand
for even a second what it's really like, anyone reading this will
likely know that the physical aspect of the condition is only a part
of the effect it really has on us.


So...

I'm looking to get a 'group' of similar aged people together, maybe
all add each other on facebook or something. It'd be great if there
were people to talk to who really 'got it,' who've been on the
receiving end of THAT look when you tell someone you can't make
a night out/planned activity, and just like me, wish they had some they
could moan to who can respond with "yeah I know, I've been there" instead
of "well you look fine to me."

So yeah, post on here, drop me a PM, smoke signal etc :)

Comments

  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    Hello! I'm also 24 and was diagnosed 3 years ago with RA. I'm a mature student, doing a BA degree and struggling a bit with managing general life and arthur.

    I'm happy to add you on FB/be added. Feel free to message me as I don't want to put my full name on here if you don't mind!
  • katkat Posts: 23
    edited 30. Nov -1, 00:00
    Hi :)

    I'm 20 and i was diagnosed with JIA 7 years ago but had it since I was 9 (took a long time to diagnose :( )

    I'm not on Facebook but I'm on here if you need a chat. It really does help having support and advice from this forum as like you say friends and family don't quite understand sometimes.

    Hope the treatment is going well.

    Kat x

    P.s you can moan as much as you like here, :lol:
  • MelrymaxMelrymax Posts: 226
    edited 30. Nov -1, 00:00
    Hi I am 25 and was diagnosed with oa when I was 23. I had been struggling with the same pain for 9 years before diagnosed. It's nice (not in a nice way) to see that there are people who are around the same age and understand how life is for us. I am married mum of 2 and in a couple of weeks that will be 3 !! :)
  • d3r2000d3r2000 Posts: 19
    edited 30. Nov -1, 00:00
    Hi, I'm 24 suffering with PSA for two years it started one day by going to sleep and not being able to wake up at first I thought it was maybe I had pulled a muscle or nerve went a and e they thought it was a nerve pulled gave me pain killers went again 2 weeks later they said it was nothing went back then it started in my hands, where I had an electric like sensation odd type until one of my fingers couldn't move and got into great pain. Later on got admitted was diagnosed with PSA mainly looking at family history as it occurred mildly and I had suffered from psorasis which flared with it.

    I went from painkillers to diclofenac with naproxen to steroids to mtx and after dropping the steroids had sulfasalazine added. It has greatly effected my quality of life before then I used to go gym regularly was socially very active to the point of mainly sitting in a chair, I did however in the time manage to complete some academic educational courses was a painful period. As I sat I did observe many of my friends from university getting married realising that with the immunosuppresents and symptoms the likelyhood of a life partner goes down, so it was a slightly depressing time however realising I did manage to improve on my diet. Did add in some omega 3 fish oil tablets which helps. At the moment I am considering the option of anti tnf treatment which is now opening up as an option.

    One thing to add PSA and psoriasis is greatly affected by mood and stress, so positive thoughts to go a long way to avoiding flare ups. Good tips on managing stress is planning, preparing things, so allowing time for journeys without rushing arriving 15 mins early to appointments, thinking positively mindfully, changing the environment around you both hygenically and positively (getting rid of carpet helped alot in my case, plus mould on walls with pain, adding extraction fans to toilet helps). Keeping an overall appointment diary helps, also always bare in mind to keep socially interactive and rest between spots to take it easy with the stamina affected. Cherry and garlic help reduce inflammation generally.

    Also living in the moment the present to forget the past and not let the baggage hold you down in depression and to forget about the future so you can avoid anxiety and live now. Anger management tips are not holding very high expectations and realising things go down to be calm and move on, without loosing composure to carry on, because things always do go wrong things or people who make you angry will you can't change them but you can change your reactions to be more positive and not allow yourself to feel the heat or grudge of someone else so you can be more calm, happy and healthy. Meditation helps plus good sleep patterns and a routine.
  • tanyakenttanyakent Posts: 23
    edited 30. Nov -1, 00:00
    hi im 20 , i was diagnosed just yesterday with RA .. kind of hard to accept but explains the last 4 years of terrible joint pain.

    id love for someone to talk to, doctors just dont understand, even friends and family as supportive as they are they just say your gonna be okay, which im sure i will but it would be nice to talk to someone who is going through the same thing ??
  • SezeelsonSezeelson Posts: 133
    edited 30. Nov -1, 00:00
    I'm 21 and diagnosed at 16 months old.

    Started in my hip and spread to every joint in my body at an early age! Greatest achievement in life: still managing to avoid the dreaded wheel chair! :)
  • Bydand1980Bydand1980 Posts: 35
    edited 30. Nov -1, 00:00
    Sezeelson, my arthritis history is almost the same as yours. I was diagnosed as having Perthes Disease before I started school but I can't remember what age but when I was 5 years old I was eventually diagnosed with Arthritis inthe hips. One thing that has kinda intergued me is the number of people who have said that arthritis started in the hips before spreading, many of them round about puberty. Does anybody know why this seems to be particularly common?

    Canyoufelix, my one bit of advice is simply never give up on dreams and the things you enjoy doing.
    When I was 17-21 I was pretty fortunate to have work where the manager understood arthritis as she had it as well and although friends couldn't understand how I was feeling, they did accept it and that it would fluctuate. Some of them were really supportive and there are still some that I keep in touch with now.
    That was a pretty rough time but when I was 22 I moved to Denmark and met somebody who was able to help me build up strength slowly and I guess that building up slowly and being active meant that the muscles were better able to support the joints. For the next six years I was able to take part in sports right up to international level despite having arthritis. The last couple of years have not been quite so good and I've only managed one game in two years but I always knew that there would be a limit to how far I could push myself.
    I don't know how the arthritis effects you but I would ask about hydrotherapy. Swimming is particularly good for you, start off slowly and just doing a couple of lengths at a time and build up. Try walking from side to side of the shallow end, the water takes the weight and pressure off the joints while the resistance helps to build up the muscles. I tend to stick to front crawl because the movements for brest, butterfly and back crawl can be painfull at times. You yourself will know how far to push but if/once meds help settle the arthritis at a comfortable or manageable level then things like playing 5-a-side really are not out of the question at all. It's all about being sensible and knowing your limits.

    Playing the guitar as another thing not to give up on. I play brass instruments and there are times that I struggle with pain playing more technical pieces but for the most part I don't have a problem. Guitar is something different though, I can't manage the controll and dexterity to play chords but I do occaisionally play bass and when the hands are not so sore I can manage some pretty big riffs although most of Dream Theater's music is a bit beyond me!!! One of the other things about playing bass is that there seems to be a lack of really good bass players (and drummers) just now and bands round here are screeming out for good bassists.

    I tend to try to avoid the "S" word when talking about arthritis. Rather when it's sore and causes problems then I "cope" with arthritis rather than "suffer" arthritis. When it's not so sore or flareups are for short periods then I treat it just as if I had a cold or flu or some other wee thing. In saying that, my current flare-up has been going for more than 2 months now and is begining to get on my nerves a bit!
  • SezeelsonSezeelson Posts: 133
    edited 30. Nov -1, 00:00
    No idea!

    My mum explained how one day, I woke up and i refused to walk or crawl and just couldn't move my hip. Mum rang our GP and he said there was a possibility I broke my pelvis and so I was rushed to A&E. X-rays ruled out any breaks and they sent us home! Mum had to take me in over 3 days before anyone would listen her and they finally took blood and run some tests. It spread very quickly as I remember from about 4 I had to wear splints over my knees and ankles and my elbows and wrists. Over the years it took over my back, shoulders, jaw etc.

    Never ever give up, don't let the disease win! I've been put down, called a liar and lazy, waste of a person... I'm sure you know what it feels like but I wouldn't be the same person I am today without my old mate Arthur! I have a real passion for motorsports, love my motocross and jet skiing :mrgreen: a good blast can put me out for up to two weeks but its well worth it, I've still got a life to live. I have tried to work to no avail and so I have gotten into the world of dog training! Something I can do at my own pace and be my own boss. It's about finding that happy medium of what you can do :)

    Muscle mass makes a huge difference! I had a severe flare up and suffered a great deal of muscle loss. I was given an 8 week steroid treatment and 2 weeks intensive physio! Boy was it intensive! I would basically wake up, eat, exercise, lunch, exercise, dinner, exercise in the hotel, sleep!? I was like hulk when I got out and it did make a huge difference over the years until I suffered another flare up and again suffered more muscle waste. I'm currently swimming 3 days a week and walk my dog at least 1 hour a day to try and keep myself fit! My left wrist is almost totally immobile and I will not let that happen to my leg joints so daily stretches and exercise is an absolute must! I can't run anymore but I can walk and hobble at speed :D
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