i have just been diagnosed with this thing

i was diagnosed with this thing in june, i thought i had got used to the thought of me having this thing. i had a injection the first time i went to clinic, a few days later the inflammation in my hands and feet went down a bit, i am on methotrexate and folic acid too, i have bloods taken every 2 weeks, the last visit to the clinic the meds were upped, and my god do i feel tired all the time, i have had a few good days but i go back to work on Monday (i work in a kitchen) i have got it in my feet and hands, i have bought some new trainers as the nurse said they are better for my feet, i have got them a size bigger than i would normal to allow for the swelling, what i am most upset about is that i have had to take my mums rings off, i only lost her in November, i guess i am not used to it at all, my other half is brilliant doesn't molly cuddle me but is their when i need him :) i am sorry this is a rant but i don't know who else to talk to about this thing.

20 Replies

  • So sorry to hear your news, I think everyone on this forum has felt the same. It's such a shock to get a diagnosis of this wretched disease, and there is so much to learn.

    Firstly, you're not alone any more, this site is brilliant, supportive and a great source of help and advice. Secondly, you can get lots of info from NRAS, if you go to their site, and there is a free helpline.

    This is a recognised disease, and you may be able to get assistance at your workplace to help you carry on working, again, NRAS can give you information about that, or gov.uk

    I do hope that you get all the support and help that you need, it's a long road, but you don't need to travel alone! M x

  • Hi

    Please give the NRAS helpline call and we will do our best to support you at what is a very trying and difficult time. Our helpline is open from 9.30-4.30 Monday to Friday 0800 298 7650.

    Best wishes


  • thank you Lorraine i will

  • Hi Lorraine in nearly 14 years of having RA I have never heard of this. Is for help and advice x

  • Hiya so sorry to hear of your diagnosis. It is a shock to feel sore and unwell and yes people don't understand the tiredness well exhaustion you feel. Do call the nras helpline, they are amazing. I think I called everyday for a week when I first got diagnosed and the website nras.org.co.uk is really helpful.

    I'm glad your other half is supportive and do ask questions or chat on here. Sending internet hugs xxx

  • just spoken to my nurse at the hospital and she not heard of that side effect, being tired and sleepy and dopey and grumpy good god its the dwarfs lol i have to laugh now if i don't i will cry

  • Well I'm lost too if the symptom you are talking about is swelling cos it's one of the biggest symptoms as is stiffness and fatigue ??

  • that make two of us then my best friend and lover has just got in from work so off for a nice long kiss and cuddle.

  • Firstly, welcome to us here & secondly I don't think your first post is a rant but more of a moan!! We all have them now & again & when we're really cross we have a rant & most understand exactly where we're coming from.

    It's the worst time you're going through at the mo but will be made somewhat easier having been given a steroid injection & that will hopefully cover you until the MTX starts to take control. With having your bloods taken so regularly you're being well monitored & that will probably be reduced once it's determined how well you're reacting to your meds.

    The fatigue will lessen more than likely. It's generally when we're not well controlled that fatigue takes hold or if we overdo things as we can be apt to do when we're better controlled. It's finding the happy balance but it should pass if you just listen to your body & when it tells you to rest then rest.

    I'm sure you're upset about taking your mums rings off. I understand & I was upset me too when I had to have my wedding ring cut off as it's made out of my mums, nans & my h's grans wedding rings & it now has a random piece of 22ct in it :( Can you thread them onto a chain & wear them as a necklace until your swelling goes down? That way she's still close.

    Whenever you want some help, experience or advice or simply to rant just pop on here, there's always someone on who'll recognise or relate to whatever & you'll be sharing your experiences in no time I'm sure. :)

  • thank you so much flower, (sorry every one gets called flower) i have just been on the phone to my nurse at the hospital, and she has said she has not heard of the medication making people tired :O, so she has told me to knock my mtx down to 4 again, i am fuming, i now feel as if its in my head or have i just lost the plot altogether, but why tell me to knock it down if that's not the case,

    Right on charmer note lol, i cant wear my mums rings on a chain because i work in a kitchen and it health thing, might as well as go jump of the bridge now (joking wont be doing that got the best man in the world that loves me and looks after me) its just one thing after another, xxx

  • A Yorkshire gal would call me flower, used to it as my h's lot are fron tother side ot border so don't apologise!! I'm a Lancashire lass by the way. I think if you asked the good people on here they would disagree with your nurse. I've been taking it for 6 years, both in tablet form & injections & can personally say though taking it in injection form I have far fewer side effects I am always iffy the day after I take my MTX. In fact yesterday from 12.30pm I spent 5 hours in bed because I was so pooped & had a piece of toast for dinner & nothing else all day except for water.

    Maybe she has no evidence of other patients suffering tiredness or maybe they haven't reported it to her but why she's dropped your tablets to 10mg I'm not sure. Did she give an explanation? I would have thought if she'd have changed anything it would have been upping your folic acid if you're on a low dose.

    I'm surprised working in a kitchen you can wear rings on your hands but not round your neck, but if it's an elf & safety thing I guess rules is rules lol!! Maybe you could carry them in your pocket then or even sew a pocket in your knicks?!

    Take care of your man, they're worth their weight in gold when you get a good 'un aren't they? :)

  • thank you flower, i am from west Yorkshire lol, I don't feel as dopey or grumpy this morning, I have been thinking about what she said yesterday, and i feel as if she was in a rush to get off, just have to see how i get on with me lowering my meds

  • Yup, that's where my h's lot are from! At least you got rid of 2 of the 7 dwarfs kicked into touch so that's good - I'm Dopey this morning lol!

    Whether your nurse is busy or not, you're a patient & when you needed help & reassurance it can be upsetting, especially when newly diagnosed & don't yet understand about how things can & can't happen if you understand me. A little thought sometimes can make all the difference. x

  • Hi sorry to hear you have the diagnoses of RA. But once your drugs kick in you will feel more like your old self. Chin up lovely and hay that is what this site is all about to help each other. Vent all you want xx

  • I for one will never get used this thing has you have named it lol.ive always been in denial even after 13 years coming off medication and self harming threw not been able to cope but RA rules and have know choice but take the meds. I too worked in kitchens but had to give it up as my RA stated in my shoulders. At 35 I was deverstated I thought it was an old age disease.hope you feel better soon x

  • i think the thing is people cant see it, if you had a arm missing or a leg then people can see it, i some times think that other people think stop playing on some thing that isn't their, if that makes sense, i too thought it was some thing that older people got, i am only 44, been told that stress can bring it on too, i lost my mum last November and i am going through a divorce, so i am now blaming the soon to be x hubby for kick starting it lol xxx

  • I've come to the conclusion that with the intervention of meds we seem on a good day as though there's nothing wrong externally & those who are unfortunate enough to have visible signs are considered "arthritic". I'm convinced one member of my family still doesn't get the disease after explaining many times & now learnt to just answer "fine" to avoid the eyes to the sky response as it just grumps me. She's the only one the RD term hasn't worked on & insists when I flare it's the aches & pains of getting older as she's similar age & feels just the same!!! She has a medical problem at present & peevishly resisted contacting her to see how she's coping though have asked through another family how she's doing as I am concerned. Stupid I know but I've been rebuffed so often by maybe being on the other end for once could just make her think?!! It's nothing chronic & will pass with a little help though so maybe my idea won't work anyway.

    Hope you're feeling at least a little better today Gwen or at least a little less tuckered out. x

  • That's strange that because the hospital told me it could be stress due to my very violent marriage and divorce but I thought what a load of tosh.maybe there is true in it. I too have lost my mum and the RA has gone threw the roof putting me threw hell and having to to go on the bio logics.so stress probley is a large factor. My other half asks "does it make you feel a little bit sick" god I wish that's all it made me haha. I've asked him to read up on RA but he just says "sometimes it's better not to know" So at times you feel very alone and suffer in silence and that's what his site is good for we all know exactly how it feels to have RA and the ups and down. X

  • I too have had to remove my wedding and engagement rings as my hands are swollen, I am also on methotrextate and folic acid, I was diagnosed with RA about 18 months ago and I am still trying to come to terms with it. I am considering taking the rings to have them made bigger. I have pains in different areas, one leg is swollen but not sure if it is due to the RA or not, I feel isolated, my Consultant at hospital has changed, I have found this site helpful.

    I hope things improve for you soon.

  • hope things do get better good day today :)

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