Hello

Claire89
Claire89 Member Posts: 13
edited 29. Jan 2019, 11:44 in Say Hello Archive
Hi I'm 29 had arthritis since I was 13. I was first diagnosed with rheumatoid but it later changed to psoriatic. I don't think I understood when I was a kid it all just went over my head to be honest, but now at 29 in constant pain I feel I'm not the person I should be. I'm still young this past year has been the worse I'm now on the sick from work don't know how I will return. My hands and feet are all bent my dominant right hand is loosing power, I can't sleep, fatigue, sore head, my spine has got worse now I can't bend or walk proper. Medication makes me ill. I feel I'm loosing the battle I cant physically cope with it all now and I just get passed from pillar to post like a lost cause. Any tips especially for my spine will be greatly appreciated so I can at least move without excruciating pain 😊

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi Claire89
    Welcome to the forum,sorry you are going through such a hard time at the moment, everyone has some form of Arthritis and will fully understand what you are going through on this forum. Also we are friendly and welcoming to all.
    Just choose a forum and get started Living with Arthritis and Chit Chat being the most popular forums. It won't be long before you get a reply.
    All the best Christine
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    Hello Claire. You have a lot going on, haven't you? I was diagnosed at 15 (some 57?) years ago. Unlike you, they kept trying to make mine PsA as my mother had psoriasis but my body refused to oblige. RA it is.

    Could you give us a bit more information so's we have a clearer picture, please? Such as which medications you've tried and what you're on now. Certainly, they can all produce side effects but nothing like the problems caused by the disease itself if we don't take them. There are also meds which can help you get a better night's sleep.

    I wonder, too, who is passing you from pillar to post? That sounds unhelpful.

    You say you feel you're 'not the person I should be.' What do you think you should be like? Let's try to help you get a bit closer.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I have PsA, I began in 1997 when I was 37 but no-one medical recognised the signs. I began the meds in 2002 and then osteoarthritis was diagnosed in 2011. I will be 60 next year so at a very different stage of life.

    I have always been the person I am, I am not my disease and the disease is not me. My childhood was compromised thanks to severe eczema and asthma (the creams and inhalers did not exist so it was tough) but it provided a good grounding for the rest of the auto-immune dross that followed. You name the medication I have probably tried it, my current regimen is injected methotrexate and humira which is controling matters very nicely (which is about as good as it gets). Of the two I have I prefer the OA because it is more honest in how it presents. I wonder occasionally if I wouldn't have developed that if I had been started on the meds sooner but it is what it is. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Claire89
    Claire89 Member Posts: 13
    edited 30. Nov -1, 00:00
    Thank you for the reply.

    I have tried everything I had allergic reactions to sulphazalzime, and another 1 I can't remember the name I was recently on methotrexate the injection which helped my psorisis but not the pain it also made me sick everyday. I take naproxen, duloxetine and lyrica just now along with co dydramol and tramadol take when needed. But nothing touches the pain in my back it dulls the pain in my hands knees and jaw tho. I just can't cope with my back. My rheumatologist told me to leave the arthritis meds as I had problems with the 5 I've tried. But I think they dnt agree with me as I have bad ibs stomach problems and acid reflux. I've also tried cymbalta, amitriptyline, gabapentine lots if they don't make me sick they make me have low moods or feel irritated and anxious.

    My doctor doesn't listen to me if I say anything he says u need to wait to see rhumatology , rhumatology said the last time I was there that nothing can be done he said if he had a magic wand to take the pain away he would but he can't so I need to Learn to live with pain, so now am passed on to the pain clinic.

    When I was first diagnosed I was bad I had to keep getting my knees drained I was sent everywhere for tests for this and that then they diagnosed rheumatoid then changed to psoriatic now saying osteo. I didnt know it could change from 1 to another every few years.

    I don't feel I'm the person I should be as I used to have friends they are all out doing everything living a good life and I am stuck in can hardly move. It's not a life I don't want to be in a wheelchair in pain for 30/40 however many years waiting till I die.
  • frogmorton
    frogmorton Member Posts: 26,864
    edited 30. Nov -1, 00:00
    Oh Claire!

    You poor thing :( You are really having a rough time and of course you should be out there living your life too with your friends.

    What I will say though, if it helps, is to keep an open mind about pain clinics. Some people here have tried almost everything and pain clinics have actually been the first place to actually make a difference.

    Sending you some feeble ((())) I am sorry you are suffering like this.

    Toni x
    Love

    Toni xxx
  • Claire89
    Claire89 Member Posts: 13
    edited 30. Nov -1, 00:00
    Thank you Toni. 😊

    I'll give the pain clinic a try hopefully your right and they can help with my spine xx
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    I'm sorry I'm so late coming back to this, Claire but I've been in hospital. I want to reply, though, because I think you've not quite understood the diagnosis. They have changed the original diagnosis of rheumatoid to psoriatic. The two are very similar but you don't have both, just psoriatic. As for the osteo – that's not a change of diagnosis, unfortunately, it's an additional one. Several of us on here have both RA (or PsA) plus osteo, usually because we didn't get onto the DMARDS, such as methotrexate and sulphasalazine early enough. The rheumatologist will only deal with your PsA. It's up to the GP to deal with your OA.

    It's such a shame you can't seem to tolerate any of the DMARDS as they are the only things that will hold back the PsA. As for the OA pain – you're on an awful lot of meds for that and, the more we take, the more room there is for problems. I think frogmorton's idea of asking to be referred to a Pain Clinic is a good one. With luck,they might manage to get you on fewer, but more effective, meds for the OA pain.

    As for the 'person you should be', there are, unfortunately, no 'shoulds'. We are where we must be and the trick is to find the good bits. When my kids were young they brought all their friends home and I used to score for them at table tennis r snooker. It meant I could sit down doing little but be useful and it all seemed worthwhile when I overheard one say “I do like your Mum. She TALKS to us.” Try not to think of things you can't do but of things you can. And then do them :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Claire89
    Claire89 Member Posts: 13
    edited 30. Nov -1, 00:00
    Thank you for replying I'm sorry to hear you were in hospital. Hope your on the mend.

    Yes I don't think I understand any of this when I was younger it wasntnt so bad I was in pain but could still do things so I wasn't to bothered I think. But now my hand and feet are all bent If I move my toes pain shoots up my legs. My back is the worst this past year which goes into my hips and down my legs which is making walking difficult no meds help it at all I'm waiting now on the pain clinic and an mri to see what's happening. My jaw is wearing I can't open my mouth or chew without pain and it crunching and cracking the dentist has referred me somewhere else for that.
    I have problems remembering and understanding what people are saying to me I've made more sense out what yous have told me so than you very much.

    I'm just struggling to come to terms with pain, what is actually happening to me and the fact I can't do much now when I'm only 30 I don't want to be in a wheelchair I struggle to use the crutch as my hands all bent.

    But thank you all for the help and replying back in starting to read into it all and taking it all in ill try things like that with the kids that's what gets me down most that if I get worse and can't do things with the kids as I already struggle to find things I can do with them that won't cause me to be in agony aswell