Hello and advice needed

debs242 Member Posts: 13
edited 19. Jul 2016, 05:00 in Say Hello Archive

I was diagnosed with Sero Negative Inflammatory Arthritis 5 years ago, aged 24, after a bout of cellulitis in my left foot. Days after the cellulitis infection had cleared I woke up one morning and my left knee was the size of a grapefruit and incredibly stiff and painful. The inflammation lasted for about 15 months; eventually recovering after it was drained a second time and I had a steroid injection.

I have taken Sulfasalazine ever since my diagnosis and was in the process of lowering my dose, hopeful that the worst was over. Unfortunately 5 months ago my left hip started to become painful and stiff. This is confirmed as a flare up and my Sulfasalazine dose has been increased. I am playing the waiting game again.

I have decided to look for support after all these years because I am approaching my 30th birthday and am struggling to come to terms with this second flare up of arthritis. A large part of me really believed that it wouldn’t come back again and there had been a mistake with my diagnosis. I accept that I was wrong and hope that the hip will recover, as my knee did.

I have one question about how people react when you tell them about having arthritis. First time round, I didn’t tell many people, including my managers at work, about my condition. I wasn’t very accepting of it and it didn’t affect my day to day life all that much (only a dull pain when walking) so it didn’t feel necessary to tell people. Now it is in my hip I am finding it harder to cope and realise I need to let people know what is going on so they can understand and help me with it.

My concern is that because I am still quite young that people will have a lot of questions and I won’t know how to answer them. Can anyone offer any advice and their experience with this?

Many thanks for reading my post!



  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Debs

    Welcome to the forum, I'm sure that you will find support, advice, light relief and friendship here.

    I'm one of the moderation team, we all have one or more of the arthritis 'hangers on' or look after family with the same. If you need help with the technicalities of the forum just get in touch via a personal message.

    Best wishes
    ChrisK Moderator.
  • stickywicket
    stickywicket Member Posts: 27,300
    edited 30. Nov -1, 00:00
    Hello debs242 and welcome from me too.

    It must have been a huge disappointment to find that, not only could you not reduce the sulfasalazine but that the arthritis was / is making its presence felt again.

    I was diagnosed with RA at 15 (though they later realised that it had probably started with a bout of 'rheumatic fever' when I was 11). In the early years it came and went only moving in permanently after the birth of my first son.

    I agree that it can be hard to know what to tell people. I used to get heartily sick of the “Arthritis? At your age?” responses. I think, mostly, I've dealt with it on a 'need to know' basis. And just telling people the facts. They don't always 'get it'. Or even want to get it. There will be some who, frankly, won't believe you when you say you're too stiff, too tired etc to do things. But you'll learn who your real friends are and that is, oddly, a great gift from arthritis.
  • barbara12
    barbara12 Member Posts: 21,279
    edited 30. Nov -1, 00:00
    Hello Debs and welcome to the forum..
    Sorry I can advise on the RA but I know all ab out trying to explain to people..I just dont go into detail...it goes over there head anyway so I would try and keep it short..I do hope you stay with us, we are all very supportive and there is so much information on the forum..
  • debs242
    debs242 Member Posts: 13
    edited 30. Nov -1, 00:00
    Thanks for your replies, advice and kind words.

    I have experienced the "arthritis, at your age?!" response before and it has put me off talking about it. I also don't really want people to be too pitiful and treat me differently. My husband says I just need to be frank with people and say I don't want to be treated differently and constantly asked about it. I'm quite a quiet person, and not normally that direct, but hopefully will get the hang of it!

  • stickywicket
    stickywicket Member Posts: 27,300
    edited 30. Nov -1, 00:00
    Arthritis, of any type, is a big learning curve. I like your husband's advice and also your own wish not to be on the receiving end of pity.

    Just tell those who need to know what they need to know. You can be more forthcoming with friends. No-one wants to be around a perpetually moaning Minnie but, on the other hand, close friends can feel hurt if they suddenly discover they've been left out of something big in your life.

    I think you might find this both amusing and useful. http://tinyurl.com/z2tv7hb