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Suspected PA and Spondilitis

crazyscottishgirlcrazyscottishgirl Posts: 14
edited 28. Jun 2011, 13:17 in Say Hello Archive
Hey guys n gals.

I am 24 and am so frustrated with all things medical!!!

I was diagnosed with Raynauds Disease when I was in my late teens and the specialists in Dundee labelled me with "suspected" PA and Spondilitis of the spine. At the time, this didnt seem like it meant much because I felt fine but 6 years down the line, my pain is increasing but I still don't recieve any help form my GP.

I am at the end of my tether (As my mum would say) I care for my mum, who has just reached pensioner age who has OA, PA, RA as well as spondilitis while working fulltime but paracetomal and Ibprofen just aren't cutting it anymore.

I have gotten to the point now where all I want to do is sleep or scream, my bosses are moaning at me for the time off I have to take off because Im too sore to get out of bed.

Sorry for the rant everyone (I'm usually pretty upbeat)

Anyone any ideas what I should do?

Much Thanks

xxxx

Comments

  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Well, crazyscottishgirl, first off welcome to the forum and secondly I think it's maybe your GP who is crazy, not you.

    You have potentially had this for 6 years and are being treated with nothing other than Ibuprofen and Paracetamol. You are also holding down a full time job while caring for your mother who has several forms of this rubbishy illness.

    My suggestions:
    1. Call the helpline who will be able to advise you on several aspects of this nightmare that you're going through.
    2. No, I'm not allowed to say what I think you should do to your GP. Just get down there, make it clear you need to see the specialist NOW & tell him to get his **** in gear.

    You say you're frustrated. Flippin' 'eck, I'm frustrated for you. I do hope you can get some much needed help asap.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • crazyscottishgirlcrazyscottishgirl Posts: 14
    edited 30. Nov -1, 00:00
    Thanks StickyWicket,

    I wish I knew about this site before, even if it just for a wee rant.

    The only other form of medication I have been offered are muscle relaxants and I can't take them because they zonk me right out and I need to be able to hear mum, incase she falls.

    My GP is of the opinion, that because it is still in what he calls "early stages" I can't be in that much pain.

    xx
  • traluvietraluvie Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi and welcome from me too..

    Your Gp needs sacking..That is dipicable that he has left you to suffer like this for 6 years on ibruprofen and paracetamol..!!
    Most on here will know that with a full coctail of drugs things can still be hard but to just be on that is shocking..
    I really feel for you.. you deserve a medal..working full time and helping your mom.. no wonder you need to rant..We all have to have a rant every now and then know matter how upbeat a person is.. It's good to chat.. and we can understand too..
    What sticky suggested about ringing the helpline is a good idea.. they also have lots of info sheets for you to look at too..
    Regarding your GP.. well ???? dunno what to say without getting my hand slapped :wink:
    I really think you need to see an alternative Gp.. explain exactly how you feel and whats going on and that you want to be taken seriously.. say you have talked to a few people and explain that they have suggested something is done..Hopefully they will listen and get the ball rolling for you and get you on some better meds to help with your pain..
    Regarding work can you be referred to occy health and speak to them, they can be very helpful and will work with you to make things easier at work..
    Keep us posted on how you are getting on..
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    The pain is only one aspect of it, crazyscottishgirl. The other side to it is the disease itself and, if you have definitely have PA and/or Spondylitis, you should be on something that will slow down its progress which Ibuprofen and Paracetamol certainly will not. Nor will muscle relaxants. It's 6 years on and you need to know. Please insist on being re-assessed by a specialist. I really can't emphasise this enough.

    And come back for as many 'wee' or large rants as you wish.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • crazyscottishgirlcrazyscottishgirl Posts: 14
    edited 30. Nov -1, 00:00
    Nice to meet you as well Tracy.

    I think I shall be making an appointment with my own GP first and if he/she doesnt listen to me this time, I will be asking for a second opinion.

    I have heard there are quite a few different drugs on the go now to slow the process down, but I always thought I was as the doc put it "in early stages" so they wouldnt apply to me..... but now I see its my GP's lame **** excuse to get out of doing his job lol

    I have been referred to physio a few times, but they keep telling me there isnt much they can do, the free massages felt good though hehe

    :D
  • traluvietraluvie Posts: 2,579
    edited 30. Nov -1, 00:00
    Physio said to me that because iw as having problems with so many joints they couldn't help.. maybe they were thinking the same with you..
    I am in early stages which is why my doc wanted it dealt with asap to slow the disease process down(inflammatory arthritis).. the sooner the better..
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • crazyscottishgirlcrazyscottishgirl Posts: 14
    edited 30. Nov -1, 00:00
    Can I have your doc? lol

    I have to laugh, my mum has the same GP and she has meds coming out her ears!!!

    I aint asking for much, just one day.... virtually pain free... doesnt have to be completely pain free, but bareable lol without having to stay in bed!! :)

    x
  • traluvietraluvie Posts: 2,579
    edited 30. Nov -1, 00:00
    I'm lucky .. my doc and rheumy been great..
    With them behind me it's all systems go..
    Hopefully when you have gp on your side, things will improve for you.. I don't think there is anyone on here that can say they are pain free from taking the tablets, but taking the edge off certainly helps and makes things that bit better,,You booked Gp appointment yet??
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • AnkyspondAnkyspond Posts: 626
    edited 30. Nov -1, 00:00
    Hi,

    Quite new to this site as well but had great support and comments from some lovely people (some who have posted on yours), I too wish I had known about it a long time ago. Make the most of the advice and support available.

    Please demand an appointment with a rhumy, if you have not already got one and if you have then get a second opinion. You cannot go through life suffering with this and living like this. We all know meds won't stop it but can help with your quality of life, I can vouch for that with Anti TNF (I have AS).

    If you continue as you are your life will spiral downward in all areas, you have a right to be treated I am sure you have paid your taxes while you were at work.

    Good luck I hope all goes well for you.
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I am astonished by the attitude of your GP who should know a damn sight better than he appears. There is a genetic link to these conditions and given your mum's history you are right in the firing line to develop this dross, as you are proving. You need much better medical advice and support than you are currently recieving. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • crazyscottishgirlcrazyscottishgirl Posts: 14
    edited 30. Nov -1, 00:00
    Hi guys n gals,

    I have made an appointment with my GP for next week, although I dont really know where to start with him, but I know I need to do something.
    I have only ever seen a "connective tissues" specialist but that was for Raynauds Disease (bad circulation) They were the ones to tell me about my PA and AS, but cannot prescribe or refer so I was back to the GP.

    I have had a read through some of the AS stuff on here and Im a textbook case lol How typical.

    Can you guys tell me what kind of things I should be asking for apart from a rhemy referral??

    xx
  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hi crazyscottishgirl

    Welcome to the forum. I think you may well get more replies to your questions if you post on the Living with Arthritis zone because many more forum members look in there than here. This zone is more for introducing yourself and saying hi.

    Kind regards
    Moderator EH
  • AnkyspondAnkyspond Posts: 626
    edited 30. Nov -1, 00:00
    First and foremost you need a refferal as you know, to be honest in my experience the rhumy is the one to save your questions for as the normal doctors are not specialists if you know what I mean.

    I have AS and it took me over 18 years to get diagnosed but eventually did and tried couple of difffernt meds and no on Anti TNF which works a treat (for now). Read as much as you can, learn as much as you can as well about everything, make notes to ask them. Have a look on www.kickas.org its an American site but dedicated to AS and some great stuff on there, also a lot about a diet (never tried it but going to). They also have discussion board and lots of good advice.

    Keep in touch.
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
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