New to site and recently diagnosed with RA

Hi there,

I was recently diagnosed with RA and at the age of 31 feel as though my life is falling to bits. I have been having symptoms since I fell pregnant with my little boy in 2008 and soon after his birth in 2009, things went from bad to worse. I get dreadful swelling and pains in my hands and wrists and also in my feet. Working as a childminder this can make my day very difficult and sometimes near on impossible.

To be told I have RA was a complete shock as my own ignorance led me to believe that this horrible illness only affects older people. How wrong was I?

I was told to start an intense course of medication straight away and am now on my 7th week of Methotrexate, Hydroxychloroquine, and folic acid.

The side effects from the tablets seem to be causing me more problems than the RA itself. My hair is falling out and I am constantly feeling sick and beyond tired. As a result of all of the above I have become very depressed. So as well as taking all of the medication for the RA I am now on anti-depressants as well!? My husband had been amazing through this whole thing and has been incredibly supportive and reassuring; I'm not entirely sure how he has put up with me to be honest.

It seems really selfish to keep going on about how awful I feel when I know that there are people out there who are so much worse off than me, but I really can't seem to pull myself together?

I am glad I found this website. Having a group like this is a great idea, and it lets you see that you are not alone, I would be very grateful if anyone can share their experiences with me and perhaps give me a good kick up the backside and tell me to stop feeling so sorry for myself lol? It would be really helpfull to know how other people with this awful illness cope and any advice will be gratefully received.

Kind regards MrsMac07

15 Replies

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  • It makes me so sad to read this as it brings back so many memories of when I was told I had RA. I had just had my first son and within six months my world had been turned upside down. I've now got two wonderful boys, who, although are hard work, keep me going and make life worth fighting for. I would never tell you to stop feeling sorry for yourself, you are allowed and it's all part of dealing with what has happened. You will cope, having RA is like being a new parent you think I'll never manage; but you do, you have to. I have written many questions and blogs about being a mother with RA and other just having a good moan about life. Their are some great people on here who will offer support as they are in similar positions, parents with RA. Just out of interest when I first started my RA medication I had about 6-9 months of feeling sick (worse than morning sickness) hair falling out in hand fulls, I also lost weight; but that may well have just been stress and being a new mum!

    Good luck

    Regards Mel

  • Hi

    Welcome , i dont wright alot but this site has been of great support,its great to be able to ask questions to .T here will be good days to come and right now you feel how you feel and that to me is all part of the journey.I have been there to and often return to those feelings,for me its just part of it all . x

  • mrsmac, when the methtex8 kicks in ,you should feel better but its early days as I am learning too,just stay positive and try to get strong for your toddler,god bless ya.

  • Hello, feeling like you are is not unusual with ra. I had a moan on here about how i feel a burden and my pride gets in the way of asking for help. We will all cheer you up when we can,when you ask for help we will be here for you. It takes a while for the meds to get sorted, but it will get easier, Don't be apologetic it is normal to feel like that. I've got to learn aceptance which i must say is hard. I'm also on antidepressants, it is just another pill,but it helps thats what counts. Yes i know there are people out there who are woese than you, but it doesn't help you, try to let it go you have a illness and just because you don't look ill it doesn't make it any easier to you.

    Well my luv, will go now. Keep your chin up. sylvia. xx

  • Thank you all for you're lovely comments. I can see that having a site like this is going to be very helpful. Its great to know I'm not alone in the way that I am feeling, and that there are others who really understand RA and the effects that it has on you.

    Thanks again xxx

  • Hi

    Nice to meet you

    I too thought RA was a disease of the elderly -mu grandmother had it and i just remember thinking oh no my life is over.

    However i've been diagnosed for 6 years now and things do get better -the first 6 mths were hell while they tried to sort meds etc out but now i feel fairly positive about things-i still work and i also have a very supportive family which makes a massive difference

    The NRAS helpline are brilliant if you just need to talk but MTX can take up to 12 weeks to work-have you been given a number for your rhuemy nurse? maybe call her about the hair loss for some advice.

    Hope you feel better soon

    Take care and look forward to hearing from you on the forum

    Julie xxx

  • You're going through the "dark days" at the moment, be strong.

    I too thought RA was for older people (i,m 50 yrs young, not old)

    As I did some research in the early days I soon realised it can come at any age and that then put it in to some sort of perspective for me, even kiddies get it, that broke my heart and gave me the strength to grit my teeth that little bit harder when my RA gets bad. Great to hear you have family support, me personally have a 4 legged fat lazy tom cat to keep my spirits up (once fed and squidged) even in my darkest days he makes me smile/laugh so when ever possible if you can laugh or smile...take 100mgs of it :)

  • I've had Juvenile Idiopathic Athritis for 26 years now (diagnosed when I was 14) and even after all this time I still have periods of time where I feel the world is falling in and I've lost control of my life but it does get better! I felt more empowered when I researched my condition (we all become experts on our particular illness) and although I had a dreadful period of anger and frustration (and maybe denial) I've pretty much accepted arthritis is part of me and makes me what I am today. The meds will settle soon - I need steroid injections as well as methotrexate and that helps balance the hair loss so there are silver linings to some things! It sounds like you have good support (not everyone has) and you have the blessing of a child - always try to look to the positives in your life while the negatives are tearing at your body and eventually one day you'll realise you've turned a corner. There are so many places you can find support and we can all help each other in some way, you're never alone (unfortunately - this disease doesn't seem to be going away anytime soon!!) so use us to find out about our experiences and responses to changes in meds & procedures!!

    Sorry for the ramble - hope it helps, and most importantly try to stay as positive as possible, your immune system will thank you for it!!!

    RA Chickies (found on facebook) is also a good forum - theres a lot of people out there in the boat, you don't have to feel alone!!

    xx

  • Hi,

    I felt like you when i was diagnosed, i had just turned 40 when as they say life begins, i thought mine had ended. I paid £120 to see the consultant privately or i would have had to have waited another 8 weeks and i was in agony.

    I walked out and just burst into tears on the car park, i just thought of my dad and aunt who both have suffered terribly with this bloody awful disease, unfortunately my aunt passed away at the age of 44, my dad is still going, still suffering but he tries to make the best of his life.

    So this is what i was expecting for myself but i was very wrong, as you and all RA suffers know, RA is treated very differently nowadays, they start you on the medication straight away to minimise the damage to our joints. I tried Sulphasalazine and Hydroxychlorquin but they didn't work for me, then went on to Methetrexate, after the 12 weeks i felt like a new person, it was wonderful. That was 4 years ago and i still feel great most of the time, i do have times where i have little flare ups but nothing like when i was first diagnosed, i still work full time and look after the family but i am lucky enough to have the school holidays, by the end of term i need the holiday!!

    The only advice i can give is to hold on in there, see how you feel after the 12 weeks on methetrexate. You will get to know your own limitations, i know that if i try and clean all the windows in one go my wrists are going to suffer for it, so pace yourself. I know that is not easy when you have young children and you say you are a childminder, it must be very difficult for you and my heart goes out to you.

    I genuinely do hope that things improve for you soon.

    Take care.

  • Get well soon X

    your not alone!!!!!

    The nature of ra is some days you up, some days you are down, in between days you just get on & persevere. A Bit of moan is good, I say.

    Your in my thoughts

    Sci

  • You're all very kind and it really is helpful knowing I'm not alone in this dreadful illness. The one thing that is getting to me more than anything else is the response and attitude of people who know nothing about the disease, they just assume that because you look ok you feel ok and should just get on with it! I feel like getting a big plaque made. If one more person tells me their hair falls out everyday like mine (who is not on these horrid drugs) I think I'm going to scream!! I guess it's just something you get used to but makes it no less frustrating. ?

  • Hi - I echo everything everyone else has said! Things do get better, and the early days are by far the worst. The thing to realise with the meds is that you don't have to put up with awful side effects. If they are making you feel so bad and have the hair loss possily best to discuss with your rheumy team? There are so many choices out there there is sure to be something that works well and doesn't give you as bad side effects...

    Take care and hope things improve for you....

  • Oh we've all had comments from ignorant people-"your'e to young to have arthritis" etc.I just smile sweetly and tell them that i didn't know that they had qualified as a doctor -that normally shuts them up!

    You will find your own way of dealing with these so called experts but unfortunately there are plenty of them about

    Take care

  • Mrs Mac i really really feel for you and all the mothers on here who have young babies. The struggle must be immense - I have a 6 and 10 year old and they help me at times, i am so full of admiration of you for coping as you do. It does get better though, you are at a really difficult stage and hopefully you will get your medication sorted out so that you can function better.

    Those people - oh i really really dislike those ones, particularly at the beginning of my diagnosis - i hated telling people i had rheumatoid arthritis because they only heard arthritis and would say stupid things like emm i have that in my toe but then i ate cod liver oil tablets for a month and it went away. Or My granny had that but she lived til she was 96 - is that supposed to make me feel good. I used to say i have an auto immune disease, wait for that to sink in and then say its called rheumatoid arthritis. ....

    My family who i love dearly were nearly the worst - they kept trying to analyse me wondering where i had picked it up from, i think there was a secret worry that it was in the blood line but it really hurt me when they would try to make me responsible for having it - probably cos of that accident you have, all those diets you go on, all that weight you lost, all that weight you have put on..

    My line manager continually compares me to someone she knows who has it (sometimes i think this is a fictional character) who doesn't moan as much as me, doesn't really go on about it, just takes her medication, doesn't have as many appointments, just basically deals with it. I still feel really inadequate when she says these things but then catch myself on and give myself a good pep talk.

    But like Julie says you do find a way to deal with them all - I was going to say that those comments don't seem to annoy me just so much any more but when i look back at what i have written i reckon it still rankles me sorely.

  • Mads - I am so with you on the family thing. I'm very lucky in that my husband has really been fantastic and sees this as something we are both going through, which is a great help, but when it comes to extended family, I really feel like I am not believed when I tell them how bad I'm feeling. You know when someone just looks at you as if to say You're making it up! I guess it's something you just have to learn to ignore? Thank you for you're message :0)

    Still I can see that with help from my immediate family and the truly friendly people on here I will get through this.

    Thank you all so much for you're kind words, They really are a great comfort.

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