hi everyone! new diagnosis of RA

PenJ
PenJ Member Posts: 36
edited 14. Aug 2012, 10:11 in Say Hello Archive
Hi everyone,

:D

Im so pleased to have found this site. I'm just shy of 30 and have been diagnosed with RA about 4 months ago. I've got a 4 and 1 year old to rush about after (and a big kid husband) and was looking for advise and or support that things will get better.

I've been rattling along on 10 methotrexate a week , hydroxychloro and meloxicam and my massive swollen knee and elbow have gone but I just still don't have any energy, those of you in the know, do you get your energy back or do I just have to adapt from now on? Just doesn't seem fair on the kids, and I'm having a hard time accepting my lot if this is it.

I seem to pick up every cold going, and when I do I get widespread pain and aches in my joints and have real trouble sleeping. My lovely family try to support me and tell me I've only been on the meds 3 months and I just have to be patient but I think I need to hear from people who have been there to get real insight.

Would love to hear from anybody who might have tips and advice, or their stories of fatigue and RA as I can't find a great deal on it.

With great thanks in advance

PenJ x

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you and I am glad you have found us. I don't have RA, mine's PsA (psoriatic arthritis) but the treatments are the same. Fatigue is a common complaint amongst all with arthritis, for the auto-immune types it's due to the disease being active and/or a side-effect of the meds (and despite the meds it is still possible for the arthritis to flare) and for the OA-ers I reckon it's more pain-related (I should know as I have that too thanks to the joint damage caused by the PsA). On a good day I'm swimming through thickish gravy, on a rougher day it's more like porridge and on a very rough day I don't even try as one cannot swim through set concrete.

    I too am on meth (I inject mine) plus some other things. I ocasionally get a bout of extreme fatigue the day after the injection but the last time I felt as though I had some get-up-and-go was in October 2001. It was a nice feeling. :lol: For me everything feels like an effort but the degree of required effort does vary and I have learned to apopreciate the better days when they crop up.

    One coping strategy is to pace yourself and always stop when you think you can do more. Over the years I have had to give up gardening, decorating, country walks, cycling etc and it can now take me a couple of hours to change the bed (do a bit, rest a bit, do a bit more etc) but the main thing is I get it done. Remember though I am much further down the arthritis road than you (I am in my sixteenth year) and I went untreated for five of those years hence my current predicament. You have been diagnosed quite quickly and you are taking the meds so hopefully your situation won't be anything like mine. I wish you well and I hope you find the forum to be informative as well as supportive. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Penj and welcome from me too.

    I thought you might be interested to know that the National Rheumatoid Arthritis Society (NRAS) has a booklet specifically about RA fatigue which might be of interest to you. I have put the link below but if it doesn't work, you can find the booklet by typing "NRAS" into Google and looking at the "Publications" section of their website.

    http://www.nras.org.uk/help_for_you/publications/publication_detail.aspx?id=a0B8000000AUlPUEA1

    If you repost your message on the Living with Arthritis (LWA) forum, I am sure you will get some good replies because most of us look there regularly.

    We are a friendly, knowledgeable bunch and you will be made very welcome.

    Tillyxx
  • PenJ
    PenJ Member Posts: 36
    edited 30. Nov -1, 00:00
    Thank you for the link Tilly, have re posted on the LWA forum as you suggested.

    Thank you for your insight DD, I must be honest, I was hoping that everyone would just say things will be fine but it's not the case :( , but think Im in a bit of denial about the fact that my body is letting me down and just need to have some times to come to terms with what might happen and then try and get on with life.

    Penny x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Nobody knows what might happen and one of the better aspects of RA is that it can (I believe) go into remission so you never know, that might happen for you. It is more than likely that adjustments will have to be made as time goes on but everyone's experience of arthritis is different and there are some on here who are doing remarkably well on just a small dose of meth every week. In fact they do so well they rarely post which is not that encouraging for people about to start! There are pluses and positives for you (early diagnois etc) but that won't be apparent as yet as it must have come as a shock. There is a permanent thread called 'Acceptance' on the LWA part of the forum that might be worth a read-through (although it degenerates into women complaining about their inability to wear pretty shoes :roll:) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben