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Newbie saying hello

WappyladyWappylady Posts: 4
edited 3. Aug 2016, 11:11 in Say Hello Archive
Hello :)

I am joining the site as I have had a look through and get the impression it seems a friendly site and welcoming to new peeps.

I have been ill on and off since the late 90's and all was well controlled until last year when meds started to fail. My rheumatologist questioned the diagnosis in April and took me off everything in order to get a "baseline" assessment via ultrasound...

To cut a long story short the scan revealed Ra and osteo in feet and hands, I am now on methatrexate and a whole host of other meds...very poorly... working part time from home and wondering what on earth happened! Anyway I feel quite isolated, a little fed up and hoping the rheumatology nurse is right when she says I will feel like a different person in 6 months!

I know there are some of you who are in a worse state than me and my heart goes out to you but any advice on how to deal with the sudden decline (both mentally and physically) would be very welcome. :D

Thank you, Wappylady

Comments

  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Hello Wappylady
    welcome to the forum, as you already know it is a friendly place to get information, advice and support from all. It sounds like you are having a rough time indeed. Hopefully the methotrexate and other medication will start to work soon but sadly these things do take a bit of time.
    You might find our information on rheumatoid arthritis https://www.arthritiscare.org.uk/what-is-arthritis/types-of-arthritis/65-r-rheumatoid-arthritis and the one on osteoarthritis https://www.arthritiscare.org.uk/what-is-arthritis/types-of-arthritis/62-o-osteoarthritis a good place to start on gaining some basic information.
    Best Wishes
    Sharon
  • WappyladyWappylady Posts: 4
    edited 30. Nov -1, 00:00
    Hello Sharon,
    Thank you for your reply - I have had a look at the links you sent and have also downloaded some information on pain management :)
    Wappylady
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello and welcome to the creaky gang, the club that no-one wants to join :( but we have regardless. :wink:

    I have PsA and that in turn has led to OA and fibromyalgia. I take weekly injected meth, fortnightly injected humira and daily sulphasalazine, my PsA is well-controlled but of course they do nothing for the OA. I was self-employed when my troubles began and I was able to work for some time as things deteriorated but I finally gave up after a double carpal tunnel op.: I decided that enough was enough but I am fortunate in that The Spouse remains in full-time employment.

    Isolation is a problem that many of us face, friends don't necessarily understand that some times we can do things and some times we can't - I routinely refuse long-term appointments such as weddings because I have no idea how I will be months ahead, I cannot even forecast tomorrow! Our families can also struggle with understanding, have you read The Spoon Theory or There's a Gorilla in my House? Both articles are on the net and they give good, clear accounts of living with variable conditions. I remain the only person in our social circle with arthritis but, as they age, they are beginning to get some idea of how difficult it can be when your body no longer obligingly does with ease the things it used to twenty or more years ago which is most amusing to yours truly. I am in my twentieth year of this nonsense but as I was born with auto-immune troubles it's just an extension of a rubbish start in life.

    I hope you find the forum to be of interest, we know our stuff and completely understand the frustrations our conditions bring, not only to us but those around us. Please keep in touch, I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello Wappylady. I'm another who has 'done the double' with RA and OA. In my case, the OA arrived because, back in the Dark Ages when I was diagnosed with RA, there were no DMARDS available. Now I'm methotrexate any hydroxychloroquine and things are much better. What was your original diagnosis and what meds were you on for it? (I ask because it seems a bit odd to take you off them. Most inflammatory forms of arthritis are treated much the same.)

    Please don't feel isolated. We are all in the same arthritic boat here so we understand how tough life can be and we are pretty good at supporting each other.

    As you talk about a 'sudden decline', I presume things were much better until last year. Unfortunately, our bodies can sometimes get used to the DMARDS and we have to try another one. The interim period can be difficult to negotiate but will be here to help and encourage you.

    If you have any questions just ask away, preferably on the Living With Arthritis forum where more people will see it.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • WappyladyWappylady Posts: 4
    edited 30. Nov -1, 00:00
    Hi DreamDaisy and Stickywicket,

    Thank you for replying to my post.

    My new Rheumatology nurse told me of the spoon theory which has been really good in explaining things to family and friends. I will look up the Gorilla int he House.

    In answer to Stickeywicket's question, I had a rough couple of years with bereavements and family illness (not mine) and I think that caused a lot of health problems. I was on hydroxychloriquine but the consultant for some reason started to question the original RA diagnosis and wanted an ultrasound scan with a view to referring me to a different consultant and drugs trial. She was very sketchy on details. As it turns out the trial was for OA and as mine is only there due to damage caused by RA I am not eligible. However the scan must have been alarming as suddenly I have referrals everywhere...OT, podiatrist, RAMS clinic etc. SO maybe this will be a good thing? The methotrexate make me sick though :cry:
    Anyway, thank you both again for replying and I will explore some of the other forums I think.. :)
    WL
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Stress makes any kind of arthritis, and no doubt many other illnesses, worse so it's not surprising that yours has decided to have a bite.

    Hydroxy is a very mild DMARD. I take it with my methotrexate. I know there is at least one hospital where a trial is going on in which knee OA is being treated with a small dose of methotrexate but normally it's for autoimmune types. Maybe your consultant thought that you might only have OA, not RA hence the ultrasound and taking you off meds.

    I hope the meth will help you as it has me. If you find the nausea too troubling just ring your rheumatology helpline. You'll probably be told to take your folic acid on more days but don't do that without them saying so. As for all the other referrals – that's good. I'm pleased you'll be getting the help you need.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Rach101Rach101 Posts: 165
    edited 30. Nov -1, 00:00
    Welcome Wappylady! I am also a newbie and found this forum recently. Everybody is welcoming and helpful!
    Rachel x
  • barbara12barbara12 Posts: 20,904 ✭✭
    edited 30. Nov -1, 00:00
    Hello Wappylady and a warm welcome from me
    The one thing about this forum is we all like to support one another..has well as all the info you can get..so you are not alone now ..just jump in anywhere .. :)
    Love
    Barbara
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