Hi Everyone - newly diagnosed and feeling lost

lisa91
lisa91 Member Posts: 4
edited 18. Feb 2015, 04:51 in Say Hello Archive
Hi everyone;

I'll try and keep this brief; Just before xmas i was diagnosed peripheral spondyloarthropathy with enthesitis (bit of a mouthful i know). I've been suffering with it for about 3 years but it was only when it spread to my legs in september that my doctor started to believe something was wrong and got me to see a rheumy.
Now i've been diagnosed it feels like a weight off my shoulders, and at first I was just happy to have an answer, now though i've had some time to think about it i'm feeling more lost and scared than ever. Up until recently i was a mental health support worker, which i've had to give up and take an office based role because the pains in my legs leave me incapable of doing the most basic tasks. After talking to my rheumy, i know there's not much he can do as the drug he would give people with my condition would most likely bring back my childhood epilepsy, so it looks like a life battle with pain and stiffness.

So what i guess i'm getting at is does anybody have any advice on how to come to terms with accepting a diagnosis of arthritis?

Comments

  • moderator
    moderator Moderator Posts: 4,082
    edited 30. Nov -1, 00:00
    Hi Lisa

    Welcome to the forums where I'm sure you will get a lot of help and good advice from all the lovely people on here.

    It is a little quiet being the weekend, but I'm sure that someone will be along shortly to help.

    We are here if you need any support to do with using the forums. Many of the mods have some of the many varieties of arthritis and we all know about the feelings that go along with having it.

    Do read and post across the different topics that you will find here.
    All best wishes

    Mod B
  • barbara12
    barbara12 Member Posts: 21,236
    edited 30. Nov -1, 00:00
    Hell Lisa and a warm welcome from me..has we say glad you have found us only sorry you had to look for us in the first place..
    What you are going through is normal , its a sort of grieving period..but there is life after Arthritis, there are many positive story's, and I would say read those, and any questions you have , just ask away in LWA ..
    I was training to be a fitness instructor before arthritis struck..and like you I was so down..but slowly I have learned to accept the things I can do, has for the things I cant do I still try... :) hope to see your name around the forum very soon..x
  • stickywicket
    stickywicket Member Posts: 26,623
    edited 30. Nov -1, 00:00
    How to accept a diagnosis? I honestly don't know, Lisa. I was 15 when diagnosed with RA – young enough and stupid enough to think it wouldn't make much difference. I guess it didn't with the main things. I went to uni, got married, had kids. But all the other stuff had to go. Maybe that's the solution – concentrate on what's really important to you and let go of all the other stuff.

    I'm sorry I'm not very well-informed about spondylo-arthropathy (though I think it was my original rheumatologist who first 'discovered' it). I have few back problems and would like things to stay that way.

    I hope the very least we can offer you is space in which to 'tell it like it is' among people who do understand the pain and limitations of the dysfunctional family Arthritis. I think talking is the best means of coming to terms with stuff. We'll help in any way we can.
  • lisa91
    lisa91 Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks you all for your replies; it's nice to find people who really understand what it's like to have arthritis and know what i'm going through. Certainly looks like a great place to get helpful tips in coping, I will certainly be sticking around the forums and talking to you friendly helpful people :)
  • Ladybrown
    Ladybrown Member Posts: 130
    edited 30. Nov -1, 00:00
    Hi Lisa
    I have OA so a different condition but am also currently having some problems coming to terms with it and all the things I am slowly giving up. I have only been on here for a few days but it is helping me to feel less alone and more in control.
    Hopefully a positive journey for us both starts here :)
    Fay
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Hello, it is a shock on the one hand and a relief on the other: you know now why things are as they are but how to move forward? To be honest none of us know that, we each have to find our own paths and ways of coping. I have two kinds of arthritis plus fibromyalgia, and my life has changed a great deal, but I can usually cope and am very fortunate in having a supportive spouse; he doesn't fully understand how things are but he never criticises or complains when he has to iron his shirts. :)

    There are two articles on the internet which might be of interest to you, The Spoon Theory and There's a Gorilla in my House: both give simple explanations of the troubles we face in living with chronic health conditions and it may be worth friends and family having a read - employers too! I am eighteen years in and still adjusting and learning, the meds have not achieved much in some respects but they have slowed the progression of my auto-immune arthritis, which has to be a good thing.

    I wish you well and hope to see your name here and there around the boards. DD
  • lisa91
    lisa91 Member Posts: 4
    edited 30. Nov -1, 00:00
    I've had a look at both of those articles and they are amazing, explaining it perfectly I will certainly be passing on to those who aren't quite understanding how much arthritis takes it our of me. Thank you for this :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    Sometimes it's hard for us to understand so it's much harder for those who are untroubled by health issues. I'll add my signature - that sums it up very well. DD
  • Sonia50
    Sonia50 Member Posts: 33
    edited 30. Nov -1, 00:00
    HI Lisa ... I can totally relate to you. Even though our health issues are different, I am struggling to deal with the changes I face as well. I was diagnosed with OA just before Christmas and have already experienced some pretty dramatic changes to my joints. The Drs have been great, but sometimes you feel just like another number to them ... I guess taken a day at a time helps ... and talking to folk on these forums ... everyone is very helpful ..
    Sonia
  • TrishaW
    TrishaW Member Posts: 109
    edited 30. Nov -1, 00:00
    Hi Lisa,
    I have a similar diagnosis-undifferentiated spondyloarthropathy and also have entherisis. I was diagnosed in 2006 but looking back had had random symptoms before then. I must say in my experience my disease 'flares' and settles quite often, so on good days you would never know i had anything wrong with me. Even on 'bad' days it dosn't really show (which can be annoying as people don't realise and don't understand!) My hands and feet are the worst affected, but I've learnt that if i have a 'bad' day, the next day may be much better...it's very variable. I still work (as a specialist nurse but in an out patients setting so i dont lift anyone etc) and have a family to manage.
    The tips I would give you are....1) On bad days remember there will be times when you feel much better 2) Avoid 'triggers' for swollen joints (mine are too much writing /chopping (I use a wonderfull chopper from QVC called a Ninja) 3) Pace yourself and save your energy for nice things eg if you are going to a party in the evening, don't clean the house during the day! Then you can use your energy chatting/standing (and possibly dancing-usually when I've had a drink and forget i have arthritis!) 4) Obviously you may be prescribed medication , but if medication dosnt help ( in my experience DMARDs, Biologics etc didn't help and just gave me side effects -though you may be very different) talk to your Rheumatologist about IM Depo-Modrone injections....they can reduce a flare and make you feel 'well' (I'm allowed 2-3 per year) I'm not sure everyone is offered them, which is why i mentioned it (obviously it will be up to your doctor!) 5)If you are working you are covered by the Disability Act (that may sound hideous but it is useful)...at my work I got a new chair, flexible working etc etc to make life easier for me. 6) Consider 'mindfullness' training to help manage any pain and to help come to terms with things.I had this both privately and also on the NHS via my GP
    Before I developed arthritis I was a really active person -mother of 3, nurse, walked 4-5 miles per day, ran 3 times a week, with a 'lively/busy' type of personality (last to leave any party!!!). I've had to come to terms with a slightly different lifestyle, but i'm still me....loud, lively, chatty....most people have no idea!
    I guess I'm saying you are still YOU.....life will go on and you will adapt/adjust. Use you energy for the things that are most important to you. Please don't be distressed reading horror stories on the internet either (I did that myself in 2006!)......be yourself and find your own way!
    Love Trisha
  • moderator
    moderator Moderator Posts: 4,082
    edited 30. Nov -1, 00:00
    Hi Trishaw

    Welcome to the Arthritis Care Forum from all the Moderation Team. We are volunteers and we each live with arthritis. If you have any questions let us know and we will try to help you become familiar with the forum.

    New members often post here on Say Hello first, please start a new thread each time, then be brave and respond to any posts in any of the public forums where you will find a friendly, diverse group of members who will listen and offer support, advice and encouragement as well as chat and distraction from your cares and woes. It's easy to begin a new thread when you are ready, click on the new topic button at the top of the list of threads. Give as much information as you feel comfortable with, but never post your contact details in the forum, and think carefully before sharing such information by 'pm' or private message

    Your first 2 posts will not immediately appear on the forum, instead they go into 'moderation', a place where a moderator will read your post and either approve or disapprove it. You will get a pm - personal message - either way. All posts from genuine new members will be approved - we moderate to remove as many 'spam' posts as we can before appear on the forum.

    You will find the forum rules here
    http://www.arthritiscare.org.uk/GetInvo ... orum-rules
    It's worth having a read of the rules before you make many posts just to get a feel of what is and isn't allowed.

    Once again welcome, it's lovely to meet you, come on in!

    MODA

Who's Online

4
Baloo
Baloo
Sophieff21
Sophieff21
+2 Guests