Hello from Emily

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emh1291
emh1291 Member Posts: 2
edited 15. Sep 2017, 05:31 in Say Hello Archive
Hi everyone

I’m Emily, I’m 26 and I currently live in North London. I am suffering with what I have been told is Reactive Arthritis since February 2017. Out of the blue, I woke up one morning with stiff hands which I put down to possibly clenching during the night(!?). Throughout the course of the next week a red, hot line would appear down the palm of my hand along my bones and would move day-to-day to a different finger. Over the coming 4 weeks, the pain moved from joint to joint, knuckle to knuckle as well as my wrists and wrist bones. Not only this but I was waking up in the mornings hardly able to move with pain all over my body (shoulders, neck, hands, hips, knees, ankles, feet…). I honestly felt like I was about 90 years old, having to use the banister for balance to get to the toilet and my boyfriend having to help dress and undress me, even cutting up my food!

After a bad experience trying to register at the doctors in my new area and having blood tests etc, I finally got referred to a Rheumatologist in June. Luckily, I had taken a photo diary of all of the swellings and he didn’t hesitate to diagnose me. I was told that my Rheumatoid Factor was within normal levels although on the higher scale of normal. He was confident that it would get better and prescribed me with some strong anti-inflammatory tablets along with a stomach liner to take once daily as well as a one-off steroid injection. The pain went away for 7 days but on the 8th, it returned again and with such difficulty seeing my doctor I have not had once since and I am currently awaiting my next appointment which is not until the 22nd November!

What I’m surprised at is how much this is having an effect on me both physically and mentally. As well as dealing with the pain, I’m surprised at how tiring ‘hurting’ is. I feel so down to be suffering with this as such a young age and am more often than not, finding that I am excluding myself from social situations as I know I will have the pain and fatigue to deal with afterwards. It’s like a vicious circle.

I do gentle exercise in the form of Pilates (anything more energetic than this makes me bedridden) and I eat healthy as well as try to introduce natural anti-inflammatories into my diet.

I’m wondering if anyone has any unusual coping mechanisms or general lifestyle tips that work for them that I could adopt/try out.

Meanwhile, I will surf the rest of the forums to find about your stories. I look forward to speaking with some of you. :)

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi and welcome to the forums - there are many members on here and I'm sure you will get the answers you seek,in the meantime please read our leaflet (living with arthritis,link below),if we as moderators can be of any help just ask.
    https://www.arthritiscare.org.uk/living-with-arthritis
    Al
  • TheLordFlasheart
    TheLordFlasheart Member Posts: 302
    edited 30. Nov -1, 00:00
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    Welcome to the forums Emily, as one of the more younger un's here (well 36), I have an understanding as to what you are going through.

    I have osteoarthritis in my left knee, and was diagnosed 4 years ago, and it was a massive shock, as I was very active and loved to hike around where I live.

    I too found the effect both physically and mentally on my outlook, and at time do feel down and go out less now, and this is all part of the arthritis "rollercoaster". But I have found these fourms to be the best place to go when I feel rubbish and have a general moan, knowing I won't be judged.

    As for coping strategies, i've found distraction by far the best, so I tend to read, listen to music (or both on way to work). You'll find out soon what works for yourself.


    Alastair
    "Stoke me a kipper, I'll be back for breakfast"
  • stickywicket
    stickywicket Member Posts: 27,710
    edited 30. Nov -1, 00:00
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    Hi Emily and welcome from me too. You have just given a very comprehensive description of how arthritis can affect us. I'm sorry you've had to learn all this. Yes, it's the mental and emotional stuff as well as the physical plus the social isolation, especially when you are young and contemporaries just don't get it.

    Pilates is probably a very good thing to do and I can see you're being sensibly cautious about it as being bedridden is definitely not good for us. You say you eat healthily too which is also good. None of these things will cure us, alas, but they do make our lives much better.

    You are in the early days still and still finding out what helps and what doesn't re meds. Perhaps next time the rheumatologist can prescribe something that will help more. My own tips (I was diagnosed with RA at 15 and I'm now 71) are:

    Use distraction to get away from the pain. Anything that absorbs your attention.

    Prioritise. Let the arthritis take away the less important things. Focus on seeing how to keep hold of the more important stuff.

    Don't moan incessantly (I'm sure you don't :wink: ) but equally don't exclude your nearest and dearest from your pain or else they will feel isolated too.

    Try to do something every day that will make you feel good.

    Keep as independent as possible. Check out disability aids (It all looks very scary at first) to see which might enable you to do things for yourself ie dressing, food etc.

    Thank your boyfriend when he helps. It gets boring :roll: but they have needs too.

    I don't know if you checked out the page that Al suggested but each section has references to booklets that can be downloaded and they are very good.

    I'll leave it at that for now. How are things today?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
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