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Crunchie
Crunchie Member Posts: 4
edited 14. Feb 2014, 05:56 in Living with Arthritis archive
Hi I'm new to this forum.

I have PA which started in one knee and now have it in my fingers, toes, hips lower back, shoulders and now possibly in my neck and upper back (X-rays to confirm). I've had this for 7 years since I was 21. I am on injected methotrexate and Arcoxia.

I'm hoping that this forum allows me to accept my PA.

During my worst times I've not been able to sleep or get out of bed for sometime. The pain has been nearly unbearable and I've had some pretty dark thoughts of what I wish to happen. I have wonderful fiancée who helps me physically and mentally throughout. She is always here to talk but unfortunately I'm not one to open up and be truthful of me feelings or show my pain. I'm a bottler and bottle it until it pops out. I went out with my mates the other night (day after I was told that I know have it in my back) and after a coupler off beers (shouldn't be drinking to that level) explained that I am truly unhappy with my condition and have had dark thoughts in the process. They are supportive and understanding but think this shocked them a lot. I feel such a fool for letting myself down and getting soo upset in front of my friends!!!

Sorry for the long winded first post.

I've read some post on this forum and think you're all amazing.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, it's nice to meet you but I am sorry you have had to find us. You say PA - is that palindromic or psoriatic? I have the latter (I use the abbrv. PsA) plus OA. I also have fibro and, currently, a broken left arm so I won't type much more because it's been a rough day - I wish you well and hope to be more useful and / or informative tomorrow. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • beckie89
    beckie89 Member Posts: 46
    edited 30. Nov -1, 00:00
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    Hi Crunchie,

    I got diagnosed with PsA in November last year, so all of this is a bit bewildering to me as well, I don't think I've fully accepted it yet, and I know friends and family certainly haven't.

    I find this forum a great help, it's comforting to know that there are people who understand and are going through the same thing!

    If there is anything any of us can help with or answer, then just message us or start a thread, I'm sure everyone wouldn't mind helping!

    Bex x
    <3 *Beckie* <3
  • Cariad71
    Cariad71 Member Posts: 99
    edited 30. Nov -1, 00:00
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    Hi crunchie and anyone else I've not said hi to yet. I'm also new to this forum.

    I was the same age as you at diagnosis of arthritis - 21 and am now 28. I've been lucky to be well controlled most of the time and I really feel for you if its getting you down that much. I'm currently having a flare and I know how much that's got me down recently and stopped my life, so can't imagine if you've been battling uncontrolled pain for that long. It sounds like you need to contact your rheum team for advice if your meds aren't controlling things at the moment? Have you ever been on anything more than methotrexate and Arcoxia?

    Like your fiancée my husband tries to be very supportive but it can be so hard for them to fully understand, that's why this forum is so useful because people are going through very similar things and you can vent some of your problems! ive never used it before now but have found it in my time of need! If you're like me I can get very snappy with my husband sometimes when he tries to make suggestions to help me.

    Cariad x
  • Crunchie
    Crunchie Member Posts: 4
    edited 30. Nov -1, 00:00
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    Hi all,

    Thank you for your replies. Nice to have people to talk to regarding this matter. Surprising how talking about it relieves the mind from the arthritis woes.

    DD it's psoriatic arthritis. Hope u have a speedy recovery with your arm.

    Totally agree Bex, family get confused over the matter or get very concerned and ask never ending questions such as u ok can see ur in pain today, ur neck looks painful, or long time no see (working 40 hour weeks with travelling on top feeling very tired and just want to spend sometime being comfortable in my own home with my fiancée). I know they don't mean to be repetitive or intrusive but it can grind you down.

    I was on methotrexate for a few years and stopped for a year as was feeling ill on the tablets and feeling like they were controlling my life. That's when things got really bad and now I'm back on the methotrexate by injection plus the Arcoxia. My rheumy doctor has hinted that I may need to go on the biological medication, I don't know much about this drug. Is anyone on the biological medication?

    Playing rugby from a young age probably didn't help the bones but if I could I would play again to get to get the buzz of the best team sport going.

    Thanks all.
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi Crunchie;

    Feel free to off-load on us anytime :D It can all get a bit much sometimes. Hopefully your friends will understand; the true ones will for sure and be there for you no matter what. It is tough for people to understand what you're up against. That's one of the things that makes the forum so great as we can talk here and not have to be misunderstood. There's lots of empathy here if you need to talk.

    Acceptance is kind of an on and off thing for me. I haven't found a consistent way to maintain it mainly because my PsA/spondylitis keeps throwing new things my way. The drugs I take aren't really working. So, I keep hoping something eventually will.

    Best wishes,
    Anna
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi & welcome,

    I too have Psoriatic Arthritis (PsA), Osteo Arthritis (OA), Fibromyalgia (FM) & Severe chronic Plaque Psoriasis. I have other health issues too but they're irrelevant to you :wink::lol:

    I was 37 wen I was diagnosed with PsA & OA so a fair bit older than you but my hubby was already disabled, wen I was 32, so it REALLY sucked!! The psoriasis decided to say hi n stay on my 25 birthday, I'm lucky like that :wink:
    We'd had our 4th child wen I was 24 years old so the kids grew up with a scabby Mum, lush!! :?

    I'm starting a biologic in around 4 weeks time, I'm now nearly 44. I'm getting it thru my Dermatologist not my Rheumatologist tho. You see my skin took 2 yrs to clear on 25mg oral Methotrexate (mtx) I was off of it one week & immediately started to flare again. I've had UV treatment & burned in 30 seconds, most topical treatments, including Dead Sea mud, burn my skin, as is just a moisturizer (Dermol 500) at the moment, Acetretin didn't work & I'm failing on Ciclosporin so she's tried everything & now I'm eligible :D
    It's called Ustekinumab or Stelara. It's specifically for Psoriasis but also helps the joints in PsA apparently!! It's one of the newer biologics but coz it's from a Dermatologist she can access it more easily.

    I'm sorry for all my waffle ... The point was to try & show you there are other things out there. Maybe ure Rheumy needs to take a fresh look at you?? How is ure skin & is it well controlled with mtx? Have they ever tried any other meds? Wot about pain relief?

    I just don't want you to give up, ure still so young! 2 of my children are older than you :shock:

    Loved ones are clueless but I'm kinda glad of that fact ... I'd hate them knowing the pain of PsA in my hips, neck shoulders etc & I fear daily my kids or Grandchildren knowing the sensation of being attacked & suffocated by their own skin!! I wana keep this burning, throbbing pain I get inside me & from my skin away from them .... My youngest has recently been diagnosed with scalp psoriasis, she's 2 yrs younger than you, I sobbed!!

    Life is a female dog (we aren't allowed to swear as we're all under 2years apparently!! :shock: ) but we aren't ... Are we?! :wink:
    Having said that this is definitely the best place to off load all the idiotic stuff they say & do :lol: As well as any other concerns, worries & struggles etc you are going through.

    Stay strong young un :D The forum members will see you through!!

    ((((Hugs))))

    Xxx xxX
    Healing Hugs
    Debbie.x
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Right, crunchie, I will make a heroic effort and ignore your final five words. (It's the second best team sport as every cricket lover knows :lol: ) I don't think there's any connection between rugby and PsA though OA can always set in where there's been a previous joint injury. Even then I think they reckon the known benefits of sport outweigh the potential downside.

    I was diagnosed (RA) at 15 and couldn't wait to get away from my parents' home and the regular interrogation about how I was or, worse, them looking at me and saying mournfully “Your hand/ankle/shoulder etc looks bad today.” I still – 50+ years on – hate being asked if I'm in pain. Of course I'm in xxxxx pain but I can handle it. If I can't, I'll ask. If I ask just, please, do whatever I asked but don't then insist on also doing all the stuff I can do. (I'm a dreadful impatient patient as Mr SW will wholeheartedly confirm :oops: and my independence, diminishing though it is, is precious to me)

    There are quite a few biologics and, like everything else, it's a matter of horses for courses so other people's experiences won't necessarily be of any help to you. Arthritis Reseach UK has a comprehensive list here http://www.arthritisresearchuk.org/arth ... mards.aspx

    I hope you don't feel you've 'let yourself down' by opening up to your mates. I guess you blokes don't talk as easily about feelings as us women but these things are always 'better out than in'. Believe me, your arthritis will enable you to sort out the real friends from the 'good time guys'. You don't need the latter but the real ones are like gold. Hang on to them.

    Edited due to swearing Mod J
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
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    Hi Crunchie and welcome to the forum, as it is OA I have and don't have a foot in your camp, I can still listen and support. As Sticky said true friends are like gold they are the ones that will stand by you no matter what. Nice to meet you hope to see you around............Marie x
    Smile a while and while you smile
    smile another smile and soon there
    will be miles and miles of smiles
    just because you smiled I wish your
    day is full of Smiles
  • Crunchie
    Crunchie Member Posts: 4
    edited 30. Nov -1, 00:00
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    Cheers guys great hearing from u all. So nice to speak to people in the same boat.
    I have golden mates they are brilliant and i couldnt ask for a better fiancee she is a real diamond.
    Should have got on this forum years ago.
    My reply is abit short as using my phone but promise a better reply tomorrow.
  • marrianne
    marrianne Member Posts: 1,161
    edited 30. Nov -1, 00:00
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    Dont worry Chrunchie,Short and sweet is fine ,a warm welcome from me to ..,Marrianne :)