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Hey, new here :)

Jenbo23Jenbo23 Posts: 5
edited 11. Oct 2014, 13:49 in Say Hello Archive
Hi everyone,

I'm Jen, I'm 23 and had rheumatoid arthritis since June 2013.
It started in my feet and has now started in my knee, hips and wrists.
I have tried several treatments up to now, without success but plodding on.

I worked full time but have recently had to reduce my hours to part time.

I applied for PIP and awaiting the result (they didn't ask me to go to assessment).

There are a lot of things I can't do anymore but I'm trying to focus on what I can do :). I have a lovely husband who does his best to help.

I'm going to attend an arthritis self help group in the East Midlands this Friday and I'm hoping that through that and maybe through this forum I might meet some other people who understand the struggles and achievements of living with this condition.

Say hello if you want to :)

Best wishes,

Jen

Comments

  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but I am very sorry that you have had to find us. I have psoriatic arthritis (PsA) which is similar to RA but with the added bonus of peculiar skin, osteoarthritis and fibromyalgia. I'm in my eighteenth year of this malarkey and due to a dithering GP began the meds far too late for them to make any notable difference, so I understand the frustration you may feel from time to time about the meds not appearing to do much butthey will slow the progress of the disease and reduce the damage to the joints, that is very important.

    What meds have you tried so far? I began with sulphasalazine (I'm still taking it) and tablet methotrexate (I'm now on the injected version of that). I like your spirit, you are making adjustments (which we all have to do) and it is worth focusing on what we can do rather than what we can't. Have you come across 'The Spoon Theory' and 'There's a Gorilla in my House' ? These are two articles on the internet and they explain, clearly and simply, the effect of a long-term medical condition on the affected person: they're useful for family and friends to read to help them gain a better understanding of our daily difficulties. One of my gorillas is playing up today thanks to the weather!

    Good luck with the support group, I suspect you may find that you will be the youngest there but don't let that put you off. Please let us know how it goes and I look forward to seeing your name here and there around the boards. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Hi Jen and welcome to the forum no-one wishes to be eligible for :wink: I have RA too. I started at 15 and that was some 53 years ago. There have been ups and downs and replaced joints but, on the whole, life has been good.

    You seem to be doing all you can to help yourself and that's a great start. I'm sorry the meds aren't helping. Which have you tried? I'm on methotrexate and hydroxychloroquine and they work well for me.

    I hope the Friday meeting goes well. Please let's know how you get on.

    And do join in anywhere here on the forum :)
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • hileena111hileena111 Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Jen
    Welcome to the forums.
    I've got OA in lots of joints.
    You certainly seem to have the right attitude
    I hope you enjoy your support group when you go.
    If its like mine its once a month......so give it a fair trial. I know you will be one of the youngest but wse have some young people who find it a big benefit.
    Also things like trips out with them.....social things are all geared to people with arthritis.....you aren't going to have to keep up with able body people.
    That's one of the things I like about it......everyone is in the same boat {one way or the other} so they all understand

    Love
    Hileena
  • Jenbo23Jenbo23 Posts: 5
    edited 30. Nov -1, 00:00
    Hi,

    Thanks for your replies and such a warm welcome.

    I was initially started on methotrexate tablets (15mg) with hydroxychloroquine, that didn't worked so they upped the dosage of MTX to 20mg. That didn't work so they then added in sulphasalazine which worked for a little bit but I became depressed so they took me off it (it's lifted now thankfully). So I was recently offered a choice between leflunomide and MTX injections. I've just had my first injection. I have asked about biologic therapy but my DAS isn't high enough (which I don't get as the scale doesn't include my feet and hips which are by far the worst).

    I am fortunate that most of my friends are really understanding and always ask how I am and plan activities that I can manage, though I am struggling to keep away from alcohol as lots of my friends are still at uni and invite me on nights out.

    I have read the spoon theory and recently shared it with friends and family on facebook, it's a very good way of explaining it.

    I will let you know how my group goes today.

    Jen
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    I hope the meth injections work but at least you know you can add in the lef if not. I don't know why they don't include feet and hips in DAS though I think it's unusual to get RA in the hips. Maybe you, unlike me :roll: , can fathom this out http://www.nras.org.uk/the-das28-score

    Hope the group went well. If not, you've always got us :wink:
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • hileena111hileena111 Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Jen
    Yes do let us know how the group went.
    Its also good that you have got such understanding friends.....I'm OK but I know there are quite a few people who have friends?? that just do not understand
    Love
    Hileena
  • barbara12barbara12 Posts: 20,661
    edited 30. Nov -1, 00:00
    Hello Jen and a warm welcome from me..you do sound positive and this will help you..and talking to us can really help..its good to see you have a good hubby :)and friends.... I hope the group is a big help to you, and yes let us know how you get on.
    Love
    Barbara
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