28 year old newbie!

loranelss
loranelss Member Posts: 2
edited 4. Feb 2020, 10:57 in Say hello
Good evening everyone, I have joined this group as I am beginning to become very fed up of others not understanding that arthritis is a painful disease. I have not yet had a confirmed diagnosis, my Rheumatologist believes I have Palondromic inflammatory arthritis.

I recently had an x-ray which showed the bones in my ribs were thinning but not heard a thing since about this!

I've tried every pain killer going but nothing seems to help. It's been going on for nearly three years now, I get a lot pain in my left groin, knee, back and ribs. I think sometimes the Drs think we are making it up? But we know we really aren't!!

Any suggestions would be greatly appreciated,
Love to you all x

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Welcome to the Versus Arthritis Online Community on behalf of the moderating team loranelss.

    I am sorry to hear that you are being investigated for Palindromic Rheumatism (also known as Palindromic Arthritis or PA). We definitely have people using this forum who have this type of Arthritis, but pain is pain and everyone on here can relate to that. It’s not easy for the medics to pinpoint which type of Arthritis we have when our bloods don’t give them a clear answer.

    You may have already read up about Palindromic Arthritis, but in case it’s of use I am attaching a couple of links for you:

    https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/


    http://www.palindromicrheumatism.org/

    If you have any specific questions just ask away everyone will do their best to help.

    Please do join in wherever you like you are sure of a warm welcome.

    Ellen
  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    Hello and welcome to our creaky gang :wink:

    All forms of arthritis are painful and those without it only rarely understand how it is for us though, in all fairness, how much do any of us understand about diseases we don't have.

    You write of painkilers but nothing else. Have you not been prescribed anti-inflammatories or even DMARDS? If not, maybe your rheumatologist is still struggling with a diagnosis. Arthritis is a wily old beast and often tries to defy all the tests. We just have to be patient patients :roll:

    I guess the rib problem would make it more confusing. Arthritis only rarely affects the ribs. Was it an x-ray or a DXA scan that you had? Tests for osteoporosis, which does thin bones, usually mean DXA scans and usually lead to medication from your GP.

    I suggest you read the exellent link that Mod Ellen gave to the Palindromic Rheumatism setion of the Versus Arthritis website especially the secion on diagnosis. It really is quite difficult. Meanwhile your GP might be able to provide a change of meds though nothing completely removes pain.

    I wish I could help more but mine is RA and OA. Here to answer any questions I can, though.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I began my first arthritis when I was 37, it was accurately diagnosed when I was 46 (which changed nothing) then my second, osteoarthritis, was diagnosed when I was 52. I am now 60 with no idea what it is like to live with a different kind of chronic condition and do not expect people to get what living with arthritis is like: why would they, especially when they don't have it?

    My auto-immune arthritis is one of the sero-negative kinds (psoriatic) even though I don't have much in the way of skin trouble. It damages the joints differently to RA and OA and I am fortunate in that I do not have visible joint deformities as yet. Pain relief is a misnomer because they relieve nothing, merely dull the sharper edges. I am an old hand at pain and used to living with it, life certainly became easier when the number of painful joints finally outnumbered the pain-free ones. Distraction is my main weapon in dealing with it, if my mind is focused on something else I don't feel my pain as keenly: I'm off now to focus on putting my washing on the airer. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben