16 and just diagnosed.

charlottestacey
charlottestacey Member Posts: 5
edited 2. Aug 2011, 15:53 in Say Hello Archive
Hello,
After months of being in pain and trips to the doctors who at first just said it was "lose ligaments" i have been diagnosed with polyarticular arthritis with a positive rheumatoid factor. Im 16 years old and dont really know what to expect yet. I have just come out of hospital after a few days of being on a steroid infusion, i am now on oral steroids, a weekly injection of methotrexate to ease the inflammation and cocodomal and diclofenac to ease the pain. I will be going back in on Thursday to see the physio and occupational therapist and the rheumatolgy specialist. Was just wondering how others my age have coped with this? I used to be very active and suddenly I'm very tired all the time and can't do half as much, i also find it hard when my friends dont understand or when people dont believe me. Any advice would be appreciated.
thankyou. :)

Comments

  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Hi,

    I am not as young as you (unfortunately) but unbeknown to me had Arthritis (AS) at your age. For me it took a long time to diagnose and lots of years of frusteration and pain before I got the diagnosis so in one way at least you know what you have and you can now start being treated for it, if that makes sense.

    I have a 15, 17 and 20 year old so can imagine what you are going through, my advice is to take as much help as you can and listen to your body especially until they get your medication right. Arthritis medicaiton is very much trial and error but once they get the right type for you it should get much better. Surround yourself with a good support network, make sure you keep seeing your friends as much as possible and do things that suit you better when you are out with them. I use heat (wheat bags I put in the microwave) to ease my pain. If you get a blue badge for the car and you want to go to a concert most places will allow you to go to the front of the queue so you don't have to have hours standing. Be strong and always try to stay positive but don't be afraid to cry if you need to. Use this forum to chat to people young and old and you will find the support you get will be brilliant. If I can help with anything else give me a shout, take care. xx :smile:
  • charlottestacey
    charlottestacey Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you very much for the reply. I'm sorry to hear about your later diagnosis and understand the frustration you must have gone through :/ I know i'm lucky i got diagnosed quicker than most, though i probably could have helped this myself if i hadnt kept it to myself for so long just pretending like it would go away.
    Thankyou for your advice also, i have a very supportive family who do everything possible to help me and the specialists helping me are fantastic, and the steroids have made the pain easier to deal with, and at least my mother isn't having to dress me anymore. However some of my friends just dont seem to understand the pain and after endless amounts of times of telling them, i'm now finding it hard! I also find it hard to talk about because i find that some of the things im saying sound silly, did you ever have this problem? Thank you for your advice i'll definaltely continue using the forum to find out more!
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
    Lots of us keep stuff to ourselves hoping it will go away but the best thing is what you have done now and to get it out in the open and get the help you need. I promise you it will get better.

    It doesn't really matter what age you are there are always some people who don't understand it could be down to ignorance, embarassment or sheeer rudeness but you have to hang onto the ones that do and hope that the others will eventually see it from your point of view and to be honest if they don't they aren't worth having anyway really. I have and still do find it difficult to talk about sometimes because as you say you feel silly but its not, its you, me and anyone who has 'Arthur' (thats what we call it on here) and its part of our everyday life and the key is to make it part of your everyday life. Don't shy away from it, let people know if you are having a bad day, let them know if you are hurting, if you feel like screaming or if you can laugh at it (which you will in time).

    Realy glad you have good support thats a great benefit, will rally some troops to say hi later. More people use the "living with arthritis forum" to be honest even some of the younger ones as well. If you look you will see its not all doom and gloom at the minute there is a thread about whats our favourite biscuit is (crazy but who cares), others about family news and funny stories its really worth hanging in there and getting lots of info from people who have had 'Arthur' for years. Also lots of good tips to help with everything you do. Have a good look around the forum and some of it will make you chuckle. Keep in touch. xx
  • rugbygirl
    rugbygirl Member Posts: 691
    edited 30. Nov -1, 00:00
    hi Charlotte

    I can't begin to imagine how you must be feeling with all this going on but you certainly found the right place for support. There is a young person's forum on this site is for people around your age and I think you will be surprised at how many young people actually have arthritis.

    To help your friends understand you could always use the spoon theory which might make them understand a bit more. If you type 'Spoon Theory' into Google you will find it and get your friends to read it too. Although it refers to Lupus use it to explain your arthritis. They will soon understand that things for you are not as easy as it used to be. The true friends will stick around while others aren't really friends.

    Dont let this get you down, its just a case of re thinking how you do things and the best way to tackle things. I hope that this helps you and you are soon feeling a bit better about things
  • charlottestacey
    charlottestacey Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you for all your advice, its really helped, i will check the young peoples forum and the spoon theory! thanks again! xx

Who's Online

10
Anna
Anna
frogmorton
frogmorton
LouisaGunnee
LouisaGunnee
YvonneH
YvonneH
+6 Guests