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Hello from a newbie

kaskas Posts: 3
edited 10. Aug 2016, 06:27 in Say Hello Archive
Hi Everyone

My Gp has recently diagnosed me as have RA, and I have a rheumatologist appointment in September. I seem to be able to manage the pain at the moment, but the fatigue I find overwhelming .I seem to use all my energy up going to work so on my days off I have nothing left, gone from doing triathlons to a couch potatoes in 10mths, I was wondering if the was anyone on here that feels like this and what have they done to overcome this problem.
Thanks

Comments

  • moderatormoderator Posts: 4,082 mod
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums kas from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Mod John
  • Rach101Rach101 Posts: 165
    edited 30. Nov -1, 00:00
    Hi Kas, welcome to the forum.

    Sorry to hear about your diagnosis, I hope you get some help when you see the rheumatologist. I've been ill for 3 months now with multiple joint pain and swelling and have been unable to work. I feel similar to you in that the pain is usually reasonably manageable but the feeling of 'unwellness' and unbearable. I've been off work and am desperately trying a return now so I don't lose my job but I'm seriously struggling.

    Sorry I can't help but I can empathise. I am a keen runner and have run ultra marathons so am devastated by my sudden lack of ability to even walk upstairs comfortably on bad days.

    Take care
    Rach x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I have another form of auto-immune arthritis and all of us can empathise with the tiredness, it's part-and-parcel of the condition.

    It may be helpful for the rheumatologist if you start keeping a short diary of pain and tiredness levels, which joint or joints are being troublesome, what helps and what hinders, how well you are sleeping, your diet etc. because this will give him a better all-over view of you and how you are being affected. The first appointment is always a tricky one, he may ask lots of questions to which you may or may not have any answers because this is all so new. There may be requests for further bloods to be done and perhaps an Xray: these will happen after the appointment and he may well want to see you again once the results are in.

    RA is an auto-immune condition, i.e. our immune systems go into overdrive leading to troubles within the body. I was born with eczema and went on to develop asthma so for me this is just more of the same but this must be a very big shock for you if your body has behaved up until now. The medications we take are designed to subdue the immune system to stop it firing up, the sooner you begin them the better the long-term prognosis.

    Please keep in touch and 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
    Hi kas and welcome from me, too.

    The fatigue is, unfortunately, part and parcel of the disease. Once you get established on a disease modifying med it should be at least a bit easier if not a lot.

    I was first diagnosed aged 15 and doing my O-levels. I was told to stay in bed when I didn't actually have an exam and only to do one exam per day. There is a good part-of-a-blog on the net describing this sort of fatigue. It's called The Spoon Theory and well worth a google.

    None of this will change your situation but at least you know it's normal, we all get it when things are bad and it will imprlove once you are established on the meds. You might find this useful too https://www.pathwaythrougharthritis.com/
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • kaskas Posts: 3
    edited 30. Nov -1, 00:00
    Hi Everyone

    I am so glad I joined this forum, for the first time since this all started I have finally received information that will help me understand what is going on, after being told that fatigue is not a symptom of RA I find it a relief to find that it is and that I'm not simple lazy, which I'm pretty sure some people have decided that I am .
    Thank you all for your help
    Karon x
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    You are not lazy, kas. Your GP has done better than many in identifying RA and referring you to a rheumatologist but clearly knows little about the disease.

    I know that Arthritis Care is preparing a booklet on fatigue as many of us contributed thoughts a few weeks back. Meanwhile have a read here (Arthritis Research UK is another good, trustworthy site) http://tinyurl.com/hqak9ej .
    “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
    You might find this useful too https://www.pathwaythrougharthritis.com/

    This looks good but how do I register to do the course?
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello again kas, and no, you are not being lazy, far from it. I respect my rheumatologist (and my GP) because they are dealing with my conditions as best they can but (with the best will in the world) only on a theoretical basis: they know the theory but I live with the reality. Arthritis of any kind drains our resources, both emotional and physical: it's a tiring condition. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    Rach101 wrote:
    You might find this useful too https://www.pathwaythrougharthritis.com/

    This looks good but how do I register to do the course?


    I think you just log in - top right on the Home Page. It's a good one. I did it when Arthritis Care were trialling it.
    “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
    Hi stickywicket, I tried logging in but it says it doesn't recognise my email address :/
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    In that case, click on the 'contact' tab and either email or ring them :D
    “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
    Ive emailed them and they said
    Pathway through Arthritis is provided to NHS patients in some NHS Trusts to reduce the impact of arthritis on daily life. Participants are referred onto the course by clinicians.

    She says i can self refer tho :)
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