Devestated newbie

Sweetbride77 Member Posts: 3
edited 20. Apr 2014, 08:57 in Say Hello Archive
Hi everyone yesterday I was finally diagnosed with RA and I feel like my worlds crashing in. I've known for 4 years something was wrong...I collapsed you see and was admitted with almost stroke like symptoms I then proceeded to have collapses and varying symptoms for years without any diagnosis then one day last April my doctor said he's had enough and I was subjected to every blood test known to man which finally uncovered the fact that I had hypothyroidism and it looks like that was the original issue all those years previously for this we're seeking some sort of answers from our health trust. Then about 3 weeks after my diagnosis one day I just couldn't bend down my knees just wouldn't allow it from that point on the pain was unimaginable but I'm sure you guys know exactly how that feels. I've had a year of intensifying pain with diagnoses ranging from polymyalgia to fibromyalgia. The thing is I knew all along this is what it was and my specialists kept skirting round it saying it but not quite saying it and then yesterday they confirmed it with blood tests and even though I knew I feel like my worlds crashing down around me. My other half is the kindest man alive and I'm very lucky but he just doesn't get it...don't know quite where to go cos my smiley is gonna crack soon. Sorry to be a moaner I'm normally quite a happy person :D [/color]


  • stickywicket
    stickywicket Member Posts: 27,297
    edited 30. Nov -1, 00:00
    Hello sweetbride77 and welcome to the forum. I'm sorry you had to join us and diagnosis can come as a big shock to many while, for others who have undergone a long period of tests, ifs and maybes, it can actually come as a relief to finally have a name and treatment. In your case, I doubt the specialists have 'skirted round it'. These auto-immune diseases can be very difficult to pin down. You have clearly had a long period of 'not-knowing' and I do hope that getting settled on some treatment will make a big difference for you.

    A diagnosis of RA is not the end of the world, just the start of a rather different life. With luck, the meds will work quickly for you and you may even find it's a much better life than the one of indecision and fear which you've had for some time. (Which meds have been prescribed, by the way?)

    As for your husband/partner – not many 'get it'. Indeed, mine still doesn't after 46 years of marriage to me :roll: Which of us really understands someone else's disease? You could download some of Arthritis Care's leaflets from this site. That might help him get some idea but we always walk a bit of a tightrope between keeping them in the loop and not overwhelming them with every ache and pain.

    I do hope you will soon feel at home here and your happy face will be back :D Join in anywhere on any thread. You'll be made most welcome.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    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 a creaky foot in both arthritis camps, one is my auto-immune (psoriatic) and that has led in turn to the other, osteoarthritis which is in a number of very useful joints. Luckily I've never had good health so, as far as I am concerned, this is just more of the usual.

    Of course your chap won't get it, even the doctors don't from time to time; they deal with the theory whilst we plod on with the reality. Mine has been beside me for every day of the past seventeen years and is still surprised to learn that I am in pain 24/7. I don't bang on a bout it 'cos there's no need - he can't help and my moaning won't change anything so on I plod. :wink: There are a couple of very good articles on the internet, one is The Spoon Theory and the other is There's a Gorilla in my House. Download and read, then hand them over to him because they make a very good fist of explaining our ups-and-downs of everyday life.

    We know what it's like so here is a refuge, most people hang out on the Living with Arthritis board but, because it's Easter, it's pretty quiet on here, it's the die-hards like me and Sticky who are still doing our regular forum patrols. :) I look forward to seeing your name here and there. DD
  • Sweetbride77
    Sweetbride77 Member Posts: 3
    edited 30. Nov -1, 00:00
    I actually feel better today it's a bit weird how the rollercoaster of illness affects you and I know that just because I have my positive head on today doesn't mean that tomorrow my weepie life is a bit crappy head won't reappear lol.

    I've been started on Methotrexate so the lowest dose at the minute I started taking it yesterday and I'm fine at the minute but I know this may change so I'm just gonna plough on.

    In my case the doctors really did skirt round it they messed up in such a way that we're actually suing the health trust because for 4 years I was told it was all in my head despite the fact that I had physical symptoms it changed me from being this all confident retail manager who could manage anything and anyone to a shell of my former self who for a long time believed that the doctors were right and I was going doolally tap he he he.

    The H2B is the best he just buries his head in the sand and believes that I'll be fine I won't get any side effects or any reactions which frustrates the living heck out of me but again I know it's because he wants to shield me from what could be...i guess it's hard to be the other half too watching your partner be so ill.

    I'm just gonna deal with each day as it comes and If I feel like sitting down and crying I'm going to let myself do it cos who cares and then I'm gonna pick myself up and carry on because what's the alternative really?

    I'm starting myself on a gluten and lactose free diet in order to see if that has any help with the other issues I have so time will tell if that has any affect on my RA and thanks for the ideas for the articles will have a nose...not gonna promise there won't be another post that's a bit sad and down but for now my head is up and I'm going to try and keep it that way :D
  • barbara12
    barbara12 Member Posts: 21,279
    edited 30. Nov -1, 00:00
    Hello and a warm welcome form me
    Sorry I cant offer any advice apart form talking to us will really help.. :) you are getting your head round it now and taking control so that has to be will get lots of info from the forum and the lovely people on here offer support to one another x
  • stickywicket
    stickywicket Member Posts: 27,297
    edited 30. Nov -1, 00:00
    Hello again. I'm glad you had a better day. Yes, life with arthritis can be a bit of a rollercoaster so it's important to enjoy the good bits :D

    I think reading about the meds scares a lot of people at first but many of us get few, if any side-effects. I've been on meth for about 14 years – 22.5mgs at the highest – and the only 'side-effect' I get is occasionally feeling very tired the day after I take it.

    I don't think there's any evidence that a gluten and lactose-free diet will help at all though a generally healthy one is recommended. In the past I've tried odd diets that were supposed to help. None did and I actually got worse probably, I suspect, because they were so restrictive I wasn't getting essential nutrients. However, you go for it and I wish you luck.