I have recently been diagnosed with RA, and i am due to start treatment this week, anxious, and confused and so tired?

I have a 6 year old, and 5 month baby, and was diagnosed 3 weeks ago and I have met care team and due to start treatment next week. Methotrexate, I am anxious incase this diagnosis is wrong. Will discuss my fears with doc on Tuesday. I got a steriod jag 3 weeks ago, which helped a lot, but i feel that pain is returning, and I am so tired all time. By dinner time I get so tired I could cry, I am off on maternity leave and worrying about returning to work with constant fatigue, and will be juggling motherhood as well as work. I am scared of thought of taking such strong medication that will surpress my immune system, and any tips of how to overcome this fear and anxiety would be much appreciated.

many thanks for any suggestions or tips,

31 Replies

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  • It's scary when your first diagnosed but methotrexate did help me with the fatigue.BEing a new mum is so tiring anyway so it must be so hard for you. You should be proud of yourself. I felt a bit sicky when I first started it so was advised to take the folic acid the day before AND the day after which stopped the sick feeling. It does take a while to start working but has helped me. Keep yourself hydrated the day before and after...does help. Rest when you can(not easy with little ones!!) I find it hard at times to get my head around it all,the fatigue is awful but it should ease once MTX kicks in. I feel for you and hope I have helped a bit. We all air our feelings on here. It's so great to see it written down and know someone else REALLY understands. Take care and good luck. Be kind to you x

  • Hi linnieh

    Thanks so much for replying, that was really helpful, I hope the treatment helps my constant fatigue. I have double whammy with kids and new diagnosis, I also struggle with wwhole thing just now, I'm sure my anxieties are probably normal. It is so good to get other peoples experiences too, my nurse specialist suggested I join, was so good to see this site! I hope your keeping well and looking after yourself. Thanks again for your kind words. Take care xx

  • can anyone tell me how you get a diagnoses of rumatoid ive had a few blood test erlier on with zero even mri on me knee said medial cartlidge wear but in last 3 months everything has gone worse cant walk to far cos feet hurt and back feels like i have a short left leg would it help to go see a shiropodist to streighten me out

  • Hi ... We all have the same fears .... Im on MTX and salaz and ive tolerated it very well and was so scared about the side effects .... to be honest i used to sit on the computer and read loads of things about MTX in the end i stopped because i was starting to believe everything was gonna happen to me ... MTX takes up to 12 weeks to settle into your system so you've had a steriod injection and maybe he will say also take paracetamol and theres also tramadol if you are really bad ... ask your rheumy for advise on that ...

    i do hope you start to feel less pain soon and be able to enjoy your time with ya babies

    debs x

  • Hi Debs

    Thanks for your reply, means a lot. I have strong analgesics and anti inflammatory too, whilst I'm waiting on treatment. I do feel this is putting dampner on my time off just now with my kids, but hey ho, need to stay strong n try n be positive that it can be treated. I think your right about reading all stuff online, it does freak me out a bit, that's good advice not to do that, thankyou. I hope your keeping well and looking after yourself.

    Take care xx

  • Hi there, please don't worry that you've been given the wrong diagnosis (but v sorry that you have got RA). Docs really won't prescribe Methotrexate (MTX) unless they are sure you need it, but I think all of us do go through a period where we hope it was all a nasty mistake. Unfortunatley it's not like giving you a course of antibiotics just in case.

    There are a couple of people on here with young kids, and hopefully they'll pop up and reassure you that things will ok. Wiliby is one that springs to mind, as I think she was diagnosed soon after her last child was born, but a year later is in remission and skipping around by the sound of it, rather than changing nappies with her teeth.

    Debs' comment above I think is really important - believe that things will work well, and try not to worry about things that may never happen. The first few months are often the worst, so be nice to yourself, and try not to sweat the small stuff like housework and so on. If a few things like that slide for a month or two, well so what! Try not to get too tired, so take short breaks when you can, even if only 5 minutes. And wear sun block, just in case you're one of the people that the MTX makes sun sensitive. Take care, Polly

  • All amazing words and totally agree with you helix and debs. Nice to know someone cares. Keep well x

  • Although my children are older I know how you feel. I started mtx in march and the fatigue was so draining. Take as many quick rests as you can even if it's just ten minutes sitting down. It will help. I try and have a quick rest between finishing work the school run and getting tea I know when I haven't! Best of luck I know it's not easy but don't let it take over your life. Xx

  • Hi everyone

    Thank you do much for all your kind and helpful words and tips. Trying to balance housework and my day to day tasks is so tiring, so rests albeit it even small ones I will start to do. I know when I've done too much as by teatime I could cry with tiredness, obviously I don't as got the kids, I feel like I'm grumpy to my 6 year old as he is such a live wire and wants to do lots so trying not to as I snap combination of tiredness and pain and I feel awful when I do, he is so messy too and tea time is a busy time in our household. I got consultant tuesday to start treatment. I hope methotrexate helps. I love the gym and everything has went on hold just now so I hope to return to my feel good things when I can. Thanks so much for words of support it means a lot. My nurse suggested I join this site as its real people sharing experiences and everyone is lovely. I hope you all have a good day. Take care xx

  • Hiya.ivw got a 7yr old and 5year old,but have had RA since before I had my kids.it really is exhausting but how you are feeling sounds just like classic RA .i work as a family support worker in our local children's centre,you can find where your local centre is through the internet.its defo worth giving them a ring and asking for some family support.i do lots of practical help and info about your rights and work life etc.hope they can help

    5ry and take it easy

    Callendargirl

  • Hi Callendargirl

    Thanks so much for your message, and words of support and advice, everyone has been really nice and really know their stuff! Cant believe how good this has been.

    I will look into childcare etc. I am off on mat leave but due back and will need to use childcare then, also summer holidays just now so got both kids at moment, hopefully will get my treatment and will help with some of symptoms. Im really dreading going back to work but i need to take time to look after myself and concentrate on me and kids and not worry too much, hard but trying not to. I hope your keeping ok, and you and your family are well. You take care too xx

  • Hi Lyndah -- welcome! Sorry that you've been diagnosed with RA and it's impacting on your experience of having young ones so much. I was only diagnosed last year in November and have three teenage sons - two living at home still although all at home plus a girlfriend this summer. I often think how hard it must be for those with new kids or very young kids - and there are many on this site in this situation so you aren't alone. The only good things I can say about having young kids when you are saddled with a chronic illness is that the kids do seem to become naturally more compassionate and caring as they grow older whereas when they haven't experienced a parent in this situation and are teens they tend to dismiss or forget or not really understand that life is very different for us all now.

    As Polly says there's no way the rheumatologist would have let you go on MTX unless he or she was quite sure you needed it. I've been through all that denial period and come out the other side now. My advice would be try and put your precious energy into getting the RA better rather than into querying whether you have this disease or not too much because the sooner you accept it (and it is very early days) the sooner you give your body a chance to stabilise with the drugs and rest (but daily, gentle exercise has also been the saving of me think so do try and keep it going if you possibly can).

    Having been on MTX for 8 months - plus another DMARD added in now I can say that this drug really does make a huge difference to pain and other aspects of RA once it kicks in so please don't let your fear of side effects put you off. It is generally a well tolerated drug and although I've recently started experiencing side effects from it at a raised dose I would be extremely reluctant to come off it now despite these. Good luck and keep coming here whenever you can it's a great place and I know it keeps me sane (well sort of sane!). Tilda xxx

  • Hi Lyndah, I'm the one like you diagnosed after having a baby; (as mentioned by helixhelix)

    It brings me to tears when I read posts like yours as I know exactly how you feel; it's terrifying wondering how your going to cope with a baby. I won't go on but please click on my profile and go into my blogs; read 'a very positive blog'.

    This site is amazing, without the advice, help and support I don't know how I would have coped.

    As for MTX, It hasn't been too bad for me; glad for the routine blood checks which put my mind at rest.

    take care and keep in touch x

  • Hi Wiliby

    How nice you got in touch!! Yes i heard about you, I will go check out your blog now. Ive been busy with kids and this is first chance ive had so will check it now.

    Im glad your doing well, your giving me hope already, you are testimont that treatment works, im crapping myself, but need to stay strong! I will be ok, just taking time to get my head round it all.

    I hope your having a good weekend.

    Take care, will check out your blog, xxx

  • Hello Lyndah

    It is natural that you will be concerned over the diagnosis and the thought of taking strong medication when so far you have possibly only taken paracetamol or other for the odd headache. That's how I felt when I began my treatment. So it is good that you will be discussing your concerns about your diagnosis and medication with your doctor.

    While everyone's reaction to or tolerance of a drug is different I had a very positive experience with Methotrexate (MTX). In tablet form it didn't work for me but the injection form made an incredible difference. I had no nausea and didn't feel any different on the day I took it to the day before or the day after. While all around me younger, fitter people succumbed, I did not get colds or other illness while on it.

    MTX does take a while to kick in but you presumably have another 6 months before you anticipate returning to work so take advantage of any help you can get resting as much as possible. You are wise to look ahead and plan on how you will organise work and homelife while your children still require a lot of physical input. If you haven't already contacted them, NRAS have some really good publications that might help you in planning to get the balance right. Someone on their Helpline (0800 298 7650) would be happy to discuss your concerns with you and point you to appropriate booklets.

    My diagnosis of RA came when my elder son was 4 and my younger son 2. The disease progressed rapidly and severely but the drug I was given at the time worked as anticipated and between 3 and 6 months after commencement I felt I had been given my life back. I didn't have the pressure of returning to work but was able to do voluntary work for the school and toddlers group; going on field trips; riding bikes etc. That was 36 years ago and I have been able to work 20 of those years and this is primarily down to the drugs I have taken over the years.

    Good Luck with the MTX. Jude

  • Hi Jude

    Thanks for your message and kind words.

    I am so glad I came on this site, the advice and support has been amazing!

    I am due back to work in 3 months and my work don't know what's happening for me. I want to get bit stronger, hopefully physically and mentally before I speak to them.

    I am dreading for variety of reasons. I will call NRAS thanks for that, and giving me link with there number.

    My gp said drugs are amazing now and they are always making new studies and new drugs too. I have agreed to be involved in clinical research, and I gave them quite few blood samples, hopefully if I can help someone in future.

    I worry with kids being so young, but more and more people like you are making me feel hope and encouragement.

    I hope your keeping well and I really appreciate you taking time to share your experience.

    Take good care xx

  • Hi Lyndah,

    I've just been reading the replies you have had from your question and it has reminded me of how fantastic the people are on this site.

    I'm really sorry to hear about your diagnosis. This must be a scary time for you right now but I can assure you, you have landed in the right place for people to help you through it.

    Wishing you well

    Judy xx

  • Hi Judy

    Thank you! Everyone has been amazing, I am really touched be everyones support and genuine interest and helpful advice.

    I feel that I have definately landed in the right place.

    I hope your keeping well, take good care

    Lynda xx

  • Lyndah,

    I have just taken my first dose of MTX, 7.5. I chose the day and time but couldn't believe how worked up I was getting about starting the regime. Even more than when I was diagnosed. However my OH was quite strict with me (OOH -ER!!) and stopped me procrastinating. I took the MTX on Saturday evening and Folic acid the day after. Honestly never felt a thing, no noticable side effects or feeling ill. Just gotta wait for enough MTX to get into my system before noticing any effects on the RA.

    This site is superb for help, advice and support. Please remember that we are all different so reading about all the potential side effects is worrying and ultimately may give you undue stress. Just try to focus on the fact that you will get better.

    Enjoy the sun, if you can.

    Be well.

    Richard

  • Hi Richard

    Thanks for getting in touch. This site is so amazing and reassuring!

    Good to hear that your well after taking methotrexate, I hope it continues for you. You are so right about the anxiety of starting treatment, I'm the same talking my self into the worse case scenario then talking myself back round. Think fear and denial in there, but getting treatment can only be a good thing.

    My consultant said that being diagnosed now is less daunting as treatments coming on so much now, so fingers crossed for us all.

    I wished I could enjoy the sun but in Scotland its raining, so unfair, the summer has been dreadful here, more like monsoon.

    I hope you continue to respond to treatment and have none of the side effects, that's is encouraging.

    Stay well and lots of luck

    Bye for now, take care

    Lynda

  • Hi Lyndah,

    I fully understand with you and your feelings on taking MTX, the only way I could get those tablets inside of me, was to look at my breasts and think if it was to save these would I take the tablets? The mind's answer was always "yes, so what are you waiting for?" I was then able to take the tablets. I have used the same story for each of step of new treatment offered, this way I can take what ever is suggested.

    Think of something that you know will let you overcome your fears, i.e. being able to play with your lovely children and enjoying their lives to the full. The tiredness will ebb and flow and more so I would think with a young family. I am just jolly glad mine did not manifest itself until my daughter was older.

    Take Care,

    xxx

  • Hi Elaine

    Good advice :-) I like your philosophy!

    Yes not taking treatment is not an option, I just feel that my body is already going though significant change since having my baby, and I already have some hair loss with that, and I've had one thing after another since he was born, quite a few infections, so worried with this dampening my immune system further I may suffer more. Will discuss this with my specialist tomorrow. I am sure all will be fine.

    I hope your keeping well, and your treatment is going well too.

    Thanks for your kind message.

    Take care xxx

  • Hi Lyndah

    I am 42 and was diagnosed in Feb 2012. I was extremely upset and anxious (still am, if honest) . It seemed like I cried for days. This website has helped me alot and I joined a support group in Northampton where I can talk and discuss RA with others like us, I find that extremely helpful as no-one understands the true effects unless you have it !!!!!

    I was put on methotrexate but my blood levels were all over the place, so had to stop twice and made me feel really sick. But I'm now just about to start hydroxychloroquine which hopefully will agree with me.

    So my tips ....

    It is a very complicated disease, so find out as much as you can off the internet etc.

    Maybe join a support group.

    Ask for help from friends and family (every little bit help, my Mum does my ironing for me)

    Try to keep thinking positive (I know sometimes this is hard) but if you are having a down day remind yourself that things will pick up again.

    I hope I've helped if anyway

    Take and and big hugs

    Alison

    x

  • Hi Alison

    Thankyou so much for your lovely message. You have just described exactly how I am feeling. I'm so sorry to hear about your diagnosis too.

    I am 41 and I started methotrexate on Sunday there, felt not too bad, but my food tastes a bit tasteless, don't know if that's a side effect, I'm going to see if anyone here can help me with that one.

    I have had a bad week last week and this week too, I have cried a lot today, as I'm so tired all the time and I have a 5 month old baby and a 6 year old and I feel exhausted constantly and that's making me struggle more, then I feel bad for them that I'm struggling. I keep thinking that its a mistake, but there assuring me no. I found out at my app that I have sero positive ra and apparantly that's the most aggresive form you can get, so that upset me too. I have about 3 appointments a week and that's hard its like a flitting getting out to go. Think I'm just really feeling it just now where I'm not feeling great too, and I feel so irritable!

    I like your tips you have helped me a lot honest and your message came at the right time. Everyone on here has been great, I just can't get on much because of kids but I think I need to start coming on more for advice and support.

    I hope your ok?

    You take care too, biggest hugs, stay strong

    Xxxx

  • You are more than welcome for my message and for any advice and help, we are all in the same boat and its message on here that helps me get through the bad days.

    I'm okay, I still have emotional days too, but just try and go with the flow, have a good cry and then try your best to pick yourself up again.

    Hope you're feeling abit better today.

    Hugs and think positive

    Alison

    x

  • Hi Alison

    Thanks again. Feeling bit better today, comes in waves, mostly when I'm really tired and sore. Its really hard emotionally isn't it, I think being female and already having hormones returning full force doesn't help!

    You take care and stay well, have a nice evening

    Lxxx

  • Take hope from the people on here it is a huge shock when you get told.. but with the right meds things become a lot better, speak to your Gp about how your feeling he may be able to help xx

  • Hi Summer

    Thanks for your message. I have been seeing my GP he thinks its just shock of diagnosis and he says its understandable to feel a bit down just now as it will take time, i think my hardest thing is tiredness, with double whammy of having 5 month old baby and 6year old wee live wire, and recent RA diagnosis, i will keep an eye on how im feeling as its not nice. I hope your keeping well and looking after urself.

    Take care and thanks again xxx

  • The diagnosis is a huge shock for us all and doubly hard for you with two little ones, be inspired by people like wiliby as she had young children too xx

  • Hi, I have just been diagnosed with RA aged 32, i also have a 5 month old baby. Im really struggling coming to terms with it at the moment - found out 2 weeks ago and and i am so anxious and very tearful as well as being tired and very sore. I have found reading these messages helpful. I too am on maternity leave. I m starting mtx on tuesday and already on hydrochoquine. Really worried about the future, going back to work and looking after my family. Hope you are all well. xxxx

  • Hi Claire

    So sorry to hear about your diagnosis :-( I know exactly how you feel. I really struggled and still do, but im not as tearful as I first was, i think the first month i was really emotional and tearful. I am not as bad as I was, i am still off in maternity leave, due back in 8 weeks and totally dreading as I have not told my work yet. I must admit I started my methotrexate 9 weeks ago and I dont feel anywhere near as sore, I am due to get my doze increased I started on 7.5 then after 4 weeks 12.5 for 4 weeks and i should have taken 17.5 today but i have a really bad cold and my throat is killing me so my gp said to miss this weeks, so wont know how the higher dose will affect me yet. Allow yourself to come to terms with it all, i thought there must be a huge mistake, i still struggle with was it brought on by my pregnancy as if you jump online and google post partum joint pain, the babycentre has thousands of woman saying they had joint pain post partum but i think the difference for us is they had blood tests done and they all came back normal. Like you I was really anxious and again can still be at times mostly with worrying about the future, work etc and the fear of having a young family, but never being able to dwell in it for too long as never a spare moment with the kids. I cant help but feel sad that my whole maternity leave has been dampened by this, at the moment i have weekly physio and ot appoitments, fortnightly blood tests, my gp every 4 weeks or sooner and my consultant every 4 weeks too, but everyone has been great and so understanding. I really hope you get some relief soon, i feel sad when i read everyones post on here, especially when you have a young baby, i am really tired too but some days its better than others, its hard to say what is normal fatigue from the kids or what is ra. I will keep everything crossed for you on tuesday. This website is amazing for other people getting in touch and offering support, my nurse specialist recommended it to me and i must admit it is great, i rarely get on with the kids but I really wanted to reply back to you as I hope you will get some reassurance that your not alone, and honest I am so glad i started my meds, as the difference is great, i have had two steroid injections as well and they also helped. Big hug, take care and please let me know how you get on. xxxx

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