Hello from Natasha mum to Lilly

Hi to everyone!! just to introduce my self

im mum to Lilly she is only 5 and been diagnosed with Juvenile ideaopatic arthritis ,I don't know much about this I'm new .Still doing researchand is lovey to know I'm not alone :( .Thank you so much for letting me join this group

Comments

  • Tom
    Tom Moderator Posts: 219

    Hello, @Natasha01 (or Lilly's Mum) and welcome to the forum, a safe and helpful space for you find information and support.

    It must be a worrying time for you to be told that your 5 year old has JIA. Here is some information from our website:


    This story may well give encouragement and hope for you and your daughter:

    Our thoughts are with you and your daughter. I hope you get on OK and please keep us up to date with your experiences.

    Tom

  • anneb82
    anneb82 Moderator Posts: 81

    Hello @Natasha01 and Lilly,

    I just wanted to say hello to you both as what you have shared is very similar to myself. I was diagnosed with JIA when I was 2 and a half years old and Im now 38.

    If you ever want to chat about what you and Lilly are going through, then Im always happy to lend an ear, and give you another perspective of someone who has lived through a similar experience.

    I hope that you will find this community helpful and supportive. There tends to always be someone around and we are a friendly bunch.

    Take care

    Anne

  • Judieudie
    Judieudie Member Posts: 2

    Hello I've just joined this site and hope to give and receive tips and ideas!. I have had osteoarthritis of the right shoulder for several years, I try to manage this best I can with exercise and ibuprofen but it is getting worse. I recently had my covid jabs and now have pain and immobility in my right shoulder too. Had an x ray which shows 'mild' OA. But the pain is worse than in the right shoulder and there was never any pain before the jab. I worry if the injection was not correctly sited and it has triggered pain? The GP seems really unwilling to discuss. I am not anti vax in any way but just want to understand this problem a bit more....feel so debilitated.

    Good luck to everyone on their journey x

  • anneb82
    anneb82 Moderator Posts: 81

    Hello @Judieudie.

    Welcome to the online community and thank you for sharing your story with us. I hope that you will find this a safe and welcoming space where you can continue to share and make new friends in similar situations to yourself.

    So I can see from your post that you have Osteoarthritis of the right shoulder and have had this for several years. You have been managing this yourself with exercise and ibuprofen. Since having the covid jabs you have experienced pain and immobility in the right shoulder and seems worse than before you had the jabs. You have had a x-ray which shows that you have 'mild' OA. You feel like the GP is not willing to discuss the possibility that the covid jab may have upset your OA.

    First off let me start by saying, it is perfectly reasonable to want to query the fact the maybe the jab has had a negative effect on your OA. Wanting to talk to your GP is understandable and your right. If you feel like you aren't getting anywhere with them, would you consider talking to someone else at your practice? It is a difficult area because the covid jabs are still so new, nobody can be sure as to how they are going to effect them. I know that I had a lot of side effects after but did not suffer with anything once they had worn off. However, if you spoke to other people, they might tell you that their condition as been worse since.

    Below are a couple of links from the main Versus Arthritis website that you may find useful in the mean time.



    If you have a look at the second link, it will take you to all of the information we have relating to covid.

    I hope these are of some use to you. Please do keep trying with your GP though but do also feel free to keep us updated on your situation and keep getting involved. There tends to always be some one around and we are always looking to make new friends.

    Take care.

    Anne (Moderator)

  • Judieudie
    Judieudie Member Posts: 2

    Thank you I got mixed up with my left and right🤔 its the left that's now causing new problems whereas the right has been a problem for a while. But thank you for your advice 🙂

  • Natasha01
    Natasha01 Member Posts: 4

    Thank you all 💕💕,it is so nice to know we are not alone in this ,Lilly is doing ok so far ..everything is still all new for us ,I need little bit help from you ,while we went to see my mum and dad abroad Lilly complained about shoulder and back pain :( I was panicking so much I booked emergency appointment to see doctor to check just in case she is having flare ...,I send all doctor hospital notes to school,despite the fact of all of this the head teacher ignore and give unauthorised appsence! I don't have the energy tho deal with that on top off everything else 😰😰,I'm so upset atm ...anyone else have to deal with stuff like this ?

    i really appreciate it any help

    many thanks

  • Natasha01
    Natasha01 Member Posts: 4

    No one had similar experience like mine ☹️!!!

  • stickywicket
    stickywicket Member Posts: 26,271

    I seem to remember one paren't who had problems with absences. I know heads do have to account for them. I wonder if Lilly's visit abroad was during school holidays or term time. If she went abroad during term time then, even despite the problems, it would be an unauthorised absence.

    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran