I've experienced more than anyone should

DaveyLeo10 Member Posts: 3
edited 19. Jan 2018, 10:37 in Say Hello Archive

I'm David, I'm 33, single and I live in Liverpool, England.

My family want me to 'get my story out there' so I thought I'd just say hello and see if there is anyone I can help.

So I didn't get arthritis until I was 10, literally came overnight, there was no family history of the illness and there was no obvious reason why I got it. To show how big of a shock it was just a week before I was in a football tournament and was voted best player, was top scorer and we won the tournament.

Anyway this JCA was/is extremely aggressive. I spent most of my youth in a wheelchair and I battle hard until I was finally able to walk unaided when I was 16. Even though I now looked healthy and 'normal' my joints were failing fast. From the age of 18 to now (aged 33) here are the surgeries I've had...

Both hips replaced
Both knees replaced
Right ankle replaced
Left ankle fused
Left foot fused
Both shoulders replaced
Right elbow replaced
Right thumb joint replaced

I'm at the stage now where my joints are around 15 years old and such will need revision surgery to solve the problem because they are noticeably failing especially my shoulders and hips.

Currently I had my right shoulder replaced again. This time It failed. The tendons snapped, other parts were torn or ruptured and I was told I would never get any movement back which was heartbreaking.... then it got infected so they rushed me back into surgery and removed my entire shoulder which was even more heartbreaking. Then the infection kept getting worse so they did another operation to clean out the bad tissue etc and that's what I'm now recovering from (last op was 3 weeks ago).

Eventually they plan to put a shoulder back in but it's going to take some time.

Anyway any questions feel free to ask. If I can help in any way I will :)



  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hello David and welcome to the forums from the moderation team.

    I am very sorry to hear about your diagnosis of Juvenile Arthritis and the consequential surgeries you have required. What a shock it must have been to a ten year old boy and his family.

    Just in case anyone wants to read more about Juvenile Arthritis here is a link:

    http://www.arthritisresearchuk.org/system/search-results.aspx?keywords=Juvenile arthirtis&CurrentPage=1&SortBy=&OrderBy=&ipp=&fb=&cat=

    That is a huge list of procedures you have had despite it all you really do sound to be a very upbeat person.

    I would imagine you will be able to help and support our members facing surgery and I am sure they will support you in return.

    Can I wish you all the best for your recovery from the failed shoulder operation and hope you will soon be able to have it replaced successfully.

    I look forward to seeing you posting in future.

    Best wishes,

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you and yes, you have experienced far more than anyone should at such a young age. Arthritis has no respect does it? The common perception is that it is a condition reserved for the elderly, not a disease that can ravage the young so your story has immense value. I honestly don't know what else to say apart from thank you for putting my issues into perspective - not negating them - but for helping me to see them for what they are. I was ill as a child with asthma and eczema (both in the days before steroid creams and inhalers) so for me the adult-onset of psoriatic arthritis was not a great surprise. Over time OA has developed plus fibromyalgia but such is the nature of the beasts, yes?

    I wish you well and hope we hear from you again. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • DaveyLeo10
    DaveyLeo10 Member Posts: 3
    edited 30. Nov -1, 00:00
    I would be happy to help in any way I can, I guess that is why I've decided to post in this forum. I haven't really spoken to many people with the same illness as me (if I do it's normally with people much older than me) so I've done alot without really being able to talk to people who have gone through similar surgeries etc.

    I've also been on a looooong list of treatments to the point where they've exhausted all options other than trying to manage my pain. Again I can help give any information I can for people who want to know my experiences on treatments like methotrexate, steroids, cyclosporine, antiinflammatories, joint injections, biological treatments like anti-TNF, IV infusions, pain management. I do suffer from anxiety and depression as well and I'm comfortable talking about it especially if it can help people learn not to be afraid of their mental health.

    I'm positive and while things are extremely difficult at times people who know me are always surprised by my resiliency although I put it down to stubbornness, we can't let that evil illness win right?

    So yeah, if anyone has any questions (no matter how small) then ask away!

    Also please don't think I'm in any way saying that my experiences are worse than yours. It's an evil illness and whether you have a sore wrist or your whole body hurts it's still just as difficult and stressful.

    I hope I can help! :)
  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Hello and welcome from me too :D

    You've had a mind-boggling lot of operations in quite a short time. I'm not sure I could manage to remain so positive in your shoes but it's wónderful that you can. I, too was diagnosed as a teenager but I was lucky in that mine was nowhere near as aggressive as yours so I managed 20 years before my first joint replacements.

    The list you give, of things you feel you might be able to help with, coincides almost exactly with what people on here do need help with. Just have a look at the posts on Living With Arthritis and you'll see for yourself. Many people are just anxious about new diagnoses, new meds, new operations etc etc and just need a bit of reassurance and tlc. There are quite a few of us with TKRs and THRs but shoulders and ankles are a bit less common so it's very useful when someone who has experience of them is around to help.

    It will be lovely to have you on board, David. Welcome to our creaky gang :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello David
    'And thankyou for sharing your story, gosh I don't know what I would have done in your shoes, it always amazes me how brave some people are,d and till you go through anything like this we just don't know.
    I felt sorry for myself having to have both hips replaced.. :o I do have a young friend at 14 that has JIA..and his attitude is the same has yours..I do hope you stay with us, and keep us updated with what you are going through..I wish I had a magic wand..x