Greetings from a 40 year veteran

[Deleted User]
[Deleted User] Posts: 0
edited 5. Jan 2017, 06:43 in Say Hello Archive
Hi all,

Thought i'd start at the beginning with an intro.

Brief history i guess, I had Still's Disease from about the age of 8 and although the worst of that cleared away about the age of 16-17, I've lived with arthritic pain all my life. Some good days some bad.

Hopefully it will be interesting to chat about living the life.

Cheers
Ludd

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Dear Luddite welcome to Arthritis Care Forums.

    As mods we are here to help with any problems you may have using the forums.

    There are many lovely people who use the forums with a wide range of experiences. Have a good look through the different forums and pick the ones you feel are best for the information you seek.

    Best wishes,

    Em
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hi there, Ludd, and good to meet you.

    I, too, was diagnosed with Stills. I was 15 at the time but it probably all started with 'rheumatic fever' when I was 11. Mine kind of morphed into RA but fortunately I've had none of the Stills 'extras'.

    That was all a long time ago. These days I muddle along well on methotrexate and hydroxychloroquine. How about you?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I was born with auto-immune troubles so my arthritis shouldn't have been the surprise it was :wink: I have psoriatic arthritis and the joint damage that caused has led to OA; fibromyalgia has also joined the party because it received an invitation issued behind my back. I take injected humira and methotrexate for the PsA and pain relief for the OA although I am currently off both thanks to a vile cold and cough.

    I hope you had a good Christmas and enjoy looking round the forum. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello Ludd and a warm welcome form me..I have heard so much about stills disease ..I really do feel for you...and glad you have joined us its so good to talk to people that understand some of what you are going through..
    Love
    Barbara
  • [Deleted User]
    [Deleted User] Posts: 0
    edited 30. Nov -1, 00:00
    Hi Stickywicket,

    Luckily I "grew out" of Still's about the age of 16, having onset at around 8-9. Had a good 8 years of normality before things started to deteriorate again in my mid-20's. The only "extras" i carried were a bit of eyesight damage and some hearing loss. Oh and digestive trouble, but I've always put that down to the experimental medication i was given.

    Nowadays, I'm increasingly immobile. Although not under a specialist since a serious bout of swelling about 7 years ago, back then the specialist um'd and ah'd and suggested I may now have a form of psoriatic arthritis.

    I live as normal a life as possible through the pain and intermittent swelling (with this and sciatica).

    The only drugs i take nowadays are codeine to manage the pain.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    It might be worth asking to see a rheumatologist again. If you still have the pain I'd say you still have the disease in one form or another. It might be that at least some of it is OA by now. I've 'done the double' after my early years came before the Disease Modifying Anti-Rheumatic Drugs (DMARDS) really hit the market. I'd suggest you keep a diary of symptoms (especially rarer ones) and take photos of any swellings and rashes.

    Psoriatic Arthritis can be hard to diagnose because it's one that gives sero-negative blood results. A bout of psoriasis can aid diagnosis. However, if you do have it, you really should be on DMARDS to keep it in check.

    Immobility just makes everything worse and ushers in more problems. You could ask to see a physiotherapist to get exercises to do. They really do help, as strong muscles support joints better so the joints ache less.

    Sciatica is nasty. I had it in the latter stages of my second pregnancy when my son settled himself down on my sciatic nerve. I also had a bout recently caused by leg length discrepancy. I got my surgical shoes altered but also had to see a physio who gave me exercises which sorted it out amazingly quickly. It's not returned.

    Codeine is OK as far as it goes. I keep co-codamol in and usually take a couple at night. But they only deal – not too effectively – with the symptoms. DMARDS tackle the cause. They are by no means a panacea but my life has been considerably better since I was started on methotrexate and hydroxychloroquine.

    As for stomach problems...tell me about them! Anti-inflammatories did for my stomach and gave me ulcers and a hiatus hernia many years ago. I can't take them now but still have to take a daily stomach-protecting med to deal with the after-effects. Have you ever had an endoscopy to check out your stomach?

    It can be very discouraging to feel we're all alone with this. We do, increasingly, have to do our own admin, chase up appointments etc. But there is always a feeling of empowerment and achievement once we've gained a minor success. And, on these forums, we're very good at encouraging each other because we know we're all in the same creaky boat.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright