Recently diagnosed

FionaMary
FionaMary Member Posts: 8
edited 25. Jan 2016, 04:40 in Living with Arthritis archive
Hi.
I'm in my mid twenties and was diagnosed with inflammatory arthritis last year in October. So all still sinking in and accepting my condition. Would love to hear your stories about what your going through, had gone through when you were first diagnosed, and how you kept positive through this tough time. I feel isolated and lost at the moment. I've had a lot of time off sick and will eventually have to find a different job/career as its too physically demanding and aggravates my joints. I have also had to stop doing my yoga and running. My life has dramatically changed but I'm still smiling! I know I'll find my way back again. Look forward to hearing your stories and advice :)

Comments

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

    Welcome to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    All best wishes
    Mod B
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Fiona, let me start with an apology. I'm late and can't stay right now but I will be back and I'm sure lots of our lovely members will pop in in the meantime. Watch this space :wink::D
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh dear, I am so sorry to read your post, this is indeed a tough time. :( I stoutly maintain that if you are coming at this from a healthy background then the shock is all the greater but, luckily for me, I've never known good health so it was more of the same - which must be an equally odd concept for you. :wink:

    My lunch is ready (so I have to go) but I hope to be back later. I wish you well. DD
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hi Fiona and welcome to the forum - I`m very pleased you found us, as we know exactly how you will be feeling right now. It must be so much harder when you are diagnosed at such a young age.

    I`m ten years in now, with RA, and some OA too, but I can well remember the shock of diagnosis, along with the anxiety, the bewilderment and the uncertainty. You sound a positive person, so I`m sure that will stand you in good stead. For me, it took 18 months before my RA was in anyway controlled, but you just have to try and take one day at a time - not easy, I know. I found my GP a great support during this period. Be assured there is light at the end of the tunnel, and we will support you when we can.

    Do keep posting,

    Tezz x
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Hello again :D I think you're right. I think you will 'find your way back again' because you sound determined and determination is a good weapon in the armoury against arthritis. You also seem to have a helpfully pragmatic take on it re the demands of your current job. I'm sure you'll be aware that stress is not good for arthritis be it physical or emotional.

    I can understand the need to give up running but you might eventually find you can resume yoga, though maybe not at the same standard as previously. We all need to find some way of keeping our muscles strong and joints active and yoga (which I've never done) is usually considered good. Basically, non-weight bearing exercise is good.

    I was diagnosed with RA (OK, Still's Disease to be exact) at 15. I was sublimely ignorant of all that might be involved and just pleased that it wasn't 'just chilblains' on my fingers as my Mum had diagnosed :roll: My ankles soon joined in and school and exams were difficult but there were no DMARDS in those days (1961). There have been some tough times but also some very, very good ones.

    There's some excellent advice on the 'Managing Arthritis' tab above. And please don't ever feel isolated and lost now that you've found us. We get it. Indeed, we've got it :wink: even though we wish we hadn't :lol:
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hello Fiona

    Sorry you've had to find us. It sounds like you have a fantastically positive attitude which will stand you in good stead, and enable to seek the information and support that you need.

    I was diagnosed with RA around 12 years ago, but had had intermittent symptoms for perhaps 3 or 4 years before diagnosis, because I have sero- negative RA tests done by the GP had come back negative on 2 occasions. I started with palindromic arthritis(inflammation in single joints moving around the body) which over the course of 3 years became RA, and I now have OA in several joints. My RA is fairly well controlled now by a cocktail of 3 meds, and because I have associated lung damage I am unable to take some of the more effective and newer meds.

    I suppose RA affects just about every aspect of my life, and I gave up teaching young children at 55 because I was too fatigued and in pain so wasn't able to give them the best of myself, added to which the immune suppressant drugs meant I caught every germ going and had multiple chest infections.

    Over time I have learned to pace myself better, modify activities that mean a lot to me so I can carry on doing them, and get timely medical help when infections crop up. I still enjoy walking in the countryside, but need to rest every so often, I like handicrafts and baking and have tools etc with easy grip handles to make life simpler. One thing I have learned is that sometimes I need to ask for help with stuff because my grip isn't great and some joints don't work so well, but it's ok to ask, ok to admit I can't do everything I once could, and by and large folks are happy to help.

    I do think that finding out about your disease is good, it helps with understanding and acceptance, but don't always expect to get the worst aspects of everything. Ask your medical team to explain stuff, and take a second person to listen so that they can pick up stuff you might miss.

    As for your job, well there may be modifications they can and should make to enable you to continue working, Occupational Health can do assessments and give you good advice, and sometimes supply equipment. Be open with your boss, you probably have a wealth of experience which is important to them.

    We're here when you need to unload, and always happy to offer support if we can.

    Deb x
  • FionaMary
    FionaMary Member Posts: 8
    edited 30. Nov -1, 00:00
    theresak wrote:
    Hi Fiona and welcome to the forum - I`m very pleased you found us, as we know exactly how you will be feeling right now. It must be so much harder when you are diagnosed at such a young age.

    I`m ten years in now, with RA, and some OA too, but I can well remember the shock of diagnosis, along with the anxiety, the bewilderment and the uncertainty. You sound a positive person, so I`m sure that will stand you in good stead. For me, it took 18 months before my RA was in anyway controlled, but you just have to try and take one day at a time - not easy, I know. I found my GP a great support during this period. Be assured there is light at the end of the tunnel, and we will support you when we can.

    Do keep posting,

    Tezz x

    Hi Tezz,
    Thank you for your reply!
    I already feel more happier and positive thanks to you guys.
    Fiona x :))))
  • FionaMary
    FionaMary Member Posts: 8
    edited 30. Nov -1, 00:00
    Hello again :D I think you're right. I think you will 'find your way back again' because you sound determined and determination is a good weapon in the armoury against arthritis. You also seem to have a helpfully pragmatic take on it re the demands of your current job. I'm sure you'll be aware that stress is not good for arthritis be it physical or emotional.

    I can understand the need to give up running but you might eventually find you can resume yoga, though maybe not at the same standard as previously. We all need to find some way of keeping our muscles strong and joints active and yoga (which I've never done) is usually considered good. Basically, non-weight bearing exercise is good.

    I was diagnosed with RA (OK, Still's Disease to be exact) at 15. I was sublimely ignorant of all that might be involved and just pleased that it wasn't 'just chilblains' on my fingers as my Mum had diagnosed :roll: My ankles soon joined in and school and exams were difficult but there were no DMARDS in those days (1961). There have been some tough times but also some very, very good ones.

    There's some excellent advice on the 'Managing Arthritis' tab above. And please don't ever feel isolated and lost now that you've found us. We get it. Indeed, we've got it :wink: even though we wish we hadn't :lol:

    :D
  • lynnemarie1123
    lynnemarie1123 Member Posts: 295
    edited 30. Nov -1, 00:00
    hi
    Hope your coping ok. I was diagnosed with inflammatory arthritis at 32. About 8 years ago.
    ( unspecified seronegative arthritis). It is a complete shock at first. I was diagnosed one week before Christmas, started on medications in February. They took til June to start kicking in! ( sulfasazaline, anti inflammatories) your right it does Chsnge your life and yes you'll have to make changes but it's not too bad. My aim is to be in control of the disease and not the other way round! I say aim I still haven't achieved it lol :roll:

    If you have any questions please shoot xx
  • pot80
    pot80 Member Posts: 109
    edited 30. Nov -1, 00:00
    I think it always comes as a bit of a shock to be told that you have a permanent condition. I crashed out in a big way when I was 76, five years ago now, with a polymyalgic onset to sero-negative RA. The GP got me to a consultant within three days (two of which were a weekend). The consultant, who I find absolutely superb,wanted to keep me in but one of his team said that there no spare beds.
    Once I started methotrexate things gradually got back to a normality and a situation that I can live with and accept. I am an outdoor lover and can still do what I like doing but on a reduced scale.
    I am sure that you will find that once treatment gets under way things will settle to a situation that you can accept but it may need a bit of patience early on. Best Wishes.

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