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magentamagenta Member Posts: 1,604
Hi,

Don't know what to do and getting frustrated.
I've been diagnosed with fibromyalgia and put on Pregabalin with my amitryptilline-that's fine. I have severe OA in my jaw which thankfully a surgeon is now helping me with but that took 4yrs and I wonder if the length of time it's taken to get help has resulted in the OA becoming so severe. I've now got OA confirmed by x-ray in my neck but told also I've probably got it in every joint. I now have pain, stiffness, swelling etc.. in all my joints. The rhuematologist that I seen in March of this year didn't want me to return for a follow-up appointment.
I went to my drs last month and he said I have to just get on with it. Returned today to dr about increasing pain and swelling in my ankles, knees and hips. My left hip is becoming very stiff and I've got terrible pain when walking and travels into my buttock and groin area. He's basically told me there's nothing he can do. Told me to go private for hydrotherapy.
He also said I couldn't keep getting x-rays because of radiation poisoning.

I need help. I'm only 41 and when I suggested getting my hip looked at, dr said an x-ray would only be done if there was a decision made about me getting a new hip. He also said that at my age, if I got a new hip 'it would be bu**ered in 2yrs then I would be in a wheelchair'! He said it was possible in 10yrs or so I could get some bone replacements and when I said that would mean 10yrs of increasing and debilitating pain for me, he wasn't concerned. I want to scream at these people, people who should be helping me.
Do I phone the rhuemy back and ask to be seen again? Only problem is my dr is in a different health board so he can't refer me back to the same rhuemy. Is this what happens with OA?

Thanks,
Magenta x

Comments

  • helpline_teamhelpline_team Posts: 2,073
    edited 30. Nov -1, 00:00
    Dear Magenta,

    I think it's not uncommon for younger people such as yourself whose oa is severe to find that the support of some doctors and specialists does not seem to fully recognise the severity of the arthritis.

    It can tax your self-management skills and patience to the limit to get your needs met properly. If you thought the rheumaotologist was supportive then you might explore how to see them again - but keeping the GP on side may be quite key in all this.

    Sometimes if an independent health professional can support your side of things that can strengthen your hand - a physiotherapist or OT might be a useful ally.

    Are you getting support from an AC local branch, I wonder, or would you be interested in our self-management courses?

    I'm sure that other forum members will have some supportive ideas that might be worth exploring.

    I hope that's the kind of thing you were hoping for, but if not do let us know

    All the best

    Guy
  • magentamagenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    Hello Guy,
    Thanks for getting back to me.

    I haven't actually sat down and thought about what I want. I stupidly assumed that drs/specialists would do all that was necessary to help me manage my pain. To find that I'm being left on my own with all this is very annoying never mind tiring. I've had over 20yrs of this lack of support.
    I also received an appointment today for neuorology. I 'thought'-again, rather silly of me, that I would actually be able to speak with a neurologist but no. I had nerve conduction tests done Dec'09 which proved negative. I explained I was still getting numbness and tingling in hands and fingers so rhuemy referred me back again. It's just for another conduction test, no one to one with a neurologist. I also thought that having been diagnosed with fibro, that meant I would be put in touch with a neuro person.

    I have been trying to just get on with it and take each day as it comes but I'm finding it harder and harder.

    Would you be able to give me some more details about the self-management courses please? I will also look up my local branch. The whole thing infuriates me. My poor Mum is pushing me to go private. I never ever thought I would even consider that but now I'm kinda thinking 'why not' but the only reason why I don't go for it now is cos I'm skint!
    Thanks for replying,
    Magenta x
  • helpline_teamhelpline_team Posts: 2,073
    edited 30. Nov -1, 00:00
    Hi Magenta,

    To give you the most helpful information about the courses I need to know where you are in the country, but you can do this yourself by clicking on
    'In Your Area'
    then you can either look up local branches
    or our courses
    and the course calender
    It's worth filling in the online form so that you go on a waiting list for where you are - it helps our regional offices organise their work and get funding for the courses.

    I hope that's helpful

    Guy
  • magentamagenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    Thank you,
    Magenta x
  • skezierskezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Eileen,

    Just answered you over on lw but self management is so good... you kinda get your own way and I know you are young for this and I do how hard it is to get your head round it and not resent it too much... I would have said not resent it but have recently found out how much I do both reset and hate it :wink:

    The xray thing./. got the same problem there... they are getting more aware of the radiation risk flower that's all.....

    Big all eh? Cus I would like to know what both my elbows and shoulders are really up to and which arthritis is in the driving seat for them both :roll:

    Hang i there flower and leaving a ((((( ))))) and for me meditation and visualisation are the only way forwards and at your age I think it was all that got me through it.

    Hope you can find a course near by cus it does help. Another ((( ))) and a cuppa. Love Cris xx

    Oh Helpline folk leaving a happy Easter to you all. x
  • magentamagenta Member Posts: 1,604
    edited 30. Nov -1, 00:00
    Thanks Cris,
    I will look into it. Hope you are well,
    Magenta x
  • skezierskezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    Hi Eileen,

    Not sure if its still there but there used to be a short 3 or so min talk down on the AC site as a relaxation thing... I like the idea of picturing a forest with a path through it and before you enter there is a bin and you stick your troubles and worries, pain or what ever you want in the bin before you enter but then I spend half my time away with the fairies... its my way of coping.....

    or not coping maybe :lol:

    Me... one above a death and that's about it :wink:

    leaving you hugs and hope flower. Cris xx
  • helpline_teamhelpline_team Posts: 2,073
    edited 30. Nov -1, 00:00
    Hi Magenta and Skezier

    Thanks for the suggestion about the relaxation CD and 6minute audio sample online Cris! To save you all hunting for it here is a link and now there is FREE MP3 audi sample for you to download onto your computer: http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Managingpain/RelaxationCD

    Wishing you all a Very Happy Easter from Helpline Towers and a barrow full of chocolate! :grin:

    Simona
  • skezierskezier Member Posts: 12,150
    edited 30. Nov -1, 00:00
    ummmmmmmmmmmmmm Chocolate :lol:

    You all have a good day and I downloaded that one back along and it is really quite helpful :grin: Cris x
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