Newly diagnosed new mum please help

hi there, I have just been diagnosed and took my first dose of methotrexate this week, I am 40 and my symptoms started 6 weeks after giving birth to my daughter, she's now 12 weeks, I also have a 9 and 5 year old. I feel devastated and don't know how to cope with this. My consultant said my ra is agressive, my rheumatoid factor was 217. I am so frightened for the future. My older children are to a previous relationship, after years of unhappiness I met my current partner 2 years ago, and now this, I' m so worried we won't get through it and my children have been through enough already. I am a nurse but have little knowledge of ra, although I have seen it at its worst in my job. I just want something positive to cling to. My relationship is quite new and how I look/my body image is very important as am sure so is everyone's, all I can see at the moment is deformity, I've told my partner I will leave if it gets that bad. I'm so down but have to somehow put on a brave face for my children and partner, when I feel like getting on a plane and disappearing I have good family support but feel so alone

29 Replies

  • Hi Natja welcome by the end of the day you will have all the help and advice from all the lovely people on this page they are a fantastic group don't be afraid to ask anything 24/7 there is always someone out there listening to you , I had RA last year but only diagnosed this January and I have non of the symptoms yet.

  • Hello Natya, nice to meet you! It must have been such a devastating blow for you and sounds like you have a busy life, especially with a very young baby. My advice to you would be don't worry about could happen and concentrate on the hear and now, you've been with your partner for two years which is long enough for you both to know each other but I know how you feel about putting a brave face on, I do that and I've been with mine for over 20 years!!! You've taken the MTX which is a real positive step as you're on the road to getting your RA under control. Like Matt says you will receive lots of help and support on here from all the knowledgable folk on here, try not to worry or stress too much - easier said than done i know!! :) - Good luck with everything xx

  • Thank you for your replies, sorry if I seem so down, I feel like I've gone a bit mad! I'm reading loads of info on ra but getting confused and don't know where to begin. Is it true that 95percent of people manage this disease and lead a normal life? And does early treatment stop joint deformity? Or am I being too optimistic? I have so many thoughts going through my head. I worry about work also, I work for the nhs and am currently on maternity leave, my job is quite physical and I don't know if its possible for me to move to a less demanding role, I have to work, could not afford not to. Sorry if I'm jumping from one thing to the next. Just looking for a little light at the end of the tunnel so I can get back to being myself

  • Had replied to you before I saw this post Yes you can lead a normal life - it's just a question of getting control of this disease and that's where MTX etc help and also prevent joint deformity getting worse. Early treatment does help. I had to wait several months before being put on MTX - other drugs were tried first which didn't work!

    Because of RA you come under the Equality Act which replaced the Disability Act. You will need to let your employers know about the diagnosis (as it is NHS they should know something about it!). If you find you cannot manage your current job when you return to work, you can ask your employers to consider switching you to something less physical. They have by law, to consider it and to make allowances for your condition. They have a legal obligation to help you where possible.

    Hope that helps. Lavendarlady x

  • So sorry you are feeling so bad about this. Being newly diagnosed is a great shock in itself and very frightening - I know it was for me 5 years ago, wondering what I had done to deserve it!

    Having a new baby as well as two other young children is a great strain on you when RA has kicked in too.

    You've been with your partner 2 years and as Angej says you now know each other pretty well. I am sure he will be very supportive and help you when you have bad days. (We all get them).

    Don't even think about deformity. The beauty of MTX and other drugs is they do prevent joints getting too misshapen. You might find the odd swollen joint in fingers and toes but please don't beat yourself up about it. (At present my right little finger is badly swollen on the first joint and very painful as are two toes on my right foot - my partner doesn't think it makes me any less a person because of it and is only concerned whether or not I am in pain).

    When I was first diagnosed my tests were off the scale and my consultant said he had never seen anyone so bad. I was in a wheelchair and literally couldn't move. Ordered straight into hospital and given massive doses of steroids to bring the reaction down. I couldn't use my hands at all they were so swollen, couldn't walk my feet were so bad, and everything hurt so much.

    But now, I function pretty normally. I do push myself and always being told off about that by the rheumy nurse, but I can manage most everyday events, I keep pretty busy and refuse to let this wretched disease take control. I look smart, do my nails, put on the warpaint every day, visit the hairdresser once a month, have a browse round the shops and a coffee with a friend or a lunch. Lots and lots of things you can do.

    You can get some very helpful booklets from NRAS about living with RA and managing it and also a booklet to give to partners so they know what to expect.

    Welcome to our group - we all try to support each other and happy to try and answer any queries from our own experiences. Good luck to you, get plenty of rest, use painkillers when you need them and don't let RA get to you - it's a disease like many others and can be controlled with drugs, exercise and rest. The drugs we get now are a massive improvement on the old ones which never seemed to do much anyway and new drugs are being found all the time. One day there will be a cure.

    Very best wishes. Lavendarlady xx

  • Wow...what a brilliant reply!! I'm fairly new to this all myself and this has given me hope also Natya. Maybe this reply could be put up as a cross reference for all people newly diagnosed? Not saying that all replies aren't helpful tho :)

  • I agree, there's so much negativity it's great to read this and have some hope x

  • Thank you Lavendarlady, what you have said has made me a lot more positive for the future xx

  • thankyou so much, i fill so much better for reading this lettle, you lovely lady xxxxxxxxxxxxxxxx

  • sorry letter lol

  • Hello Natya

    I am so sorry about your diagnosis and things are so difficult for you. I know that the early stages of RA can be really hard to cope with - largely, I think because you don't yet know what you are coping with if that makes sense. When my RA was first diagnosed, 18 or so years ago now, what I wanted more than anything was a) for it to go away and b) if that wasn't going to happen, for somebody to tell me what my future held . And I think the very hardest thing for me to get my head round was that nobody could give me the definite answers I so badly wanted.

    I know everybody is different, that RA affects everyone differently, but maybe you will take some encouragement from the fact my diagnosis (aged 28) was "aggressive, erosive RA, with a bad prognosis". Yet almost 18 years later, thanks to the meds, I have very little visible joint deformity, even though I know from x-rays that the joints in my hands, wrists and feet are significantly eroded. If someone looked closely at my hands they might notice that they are not quite right, but I don't consider that I have any real deformity. And as for my feet - well I've always had horrible knobbly, buniony, feet anyway and don't think they are significantly different worse due to the RA - and I am very happy to keep them hidden!.

    Hopefully you can take heart, too, from the fact that you seem to have been given a diagnosis and started on meds fairly quickly. That is recognised as being a very important factor in the long term outcome of RA. Because, as with everything RA, there is unfortunately no "one size fits all" combination of meds, it can take a while and be a bit of a rollercoaster ride to find the meds combination which is best for you, but there are many new drugs available these days - and things have changed dramatically in terms of the available drugs even in the past few years, with new RA meds becoming available all the time. You have, as you say, seen RA at its worst but often the people in that situation are those diagnosed at a time when no proper meds were available to help slow down the progression of the disease. When I was diagnosed, it was only just beginning to be recognised that early diagnosis and early aggressive drug treatment was so important - much of my joint damage occurred during the first few years because the rheumatologist was an "old school thinker" who wanted to save the likes of methotrexate until/unless things got worse, rather than acting to bring the inflammation under control as quickly as possible. Nowadays, as you have found, the opposite is true and I know that there are many people who do really well on the meds. Sadly that tends not to be reflected on forums such as this - I think, because, the people who are doing well tend not to post because they don't need to.

    I really hope that the methotrexate helps you to feel better Natya - it's hard, I know, when starting new meds because they can take a good while to get into your system, and it's easy to feel that maybe they aren't going to help. But, once you find a combination of meds which is right for you, hopefully you will start to feel physically better and that you will find that makes coping easier. In the meantime, please feel that you can continue to share with us and talk to us about how you are feeling. Although I have had RA for a long time now, I have found the forums the best possible source of information and support and I feel much less alone with my RA as a result. Do you know that there is an NRAS helpline you can call too, if you would like to talk on the phone to somebody? I know from experience how helpful that can be. The number is on the main NRAS home page.

    I don't know if any of my ramblings are helpul Natya - I hope so.

    Thinking of you.


  • Your reply is extremely helpful Tilly, 28! That's so young to cope with this, life's such a bitch sometimes x

  • welcome to the group, I have just got home from work and everyone has already replied with such good stuff, that I CANT really add any more x

  • Oh, Natja, you have an awful lot on your plate at the moment. As your baby is so young, make sure your health visitor knows as she may be able to give you/find you more support. Ask for and accept all the help you can track down from anyone at all, especially at this early stage. You won't need it forever, but it will help while you are still waiting for meds to take effect. Methotrexate works well for very many people, and yes you should be able to lead a normal or only slightly modified life. I had rheumatoid factor of 644 and anti-CCP of 392, so suggestive of severe aggressive disease, but thanks to swift intervention with mtx I can do most things I want to if I pace myself. It takes a while though. How long is your maternity leave? That gives you a bit of time at least before you need to think about whether you are well enough to go staright back, and things may look very different by that time.

    Hang in there, and good luck,

    Dotty xx

  • hi Dotty, thanks for your reply, I will speak to my health visitor. I have 9 months maternity leave so I should be returning to work around October and take it from there, I do work with a very good team but extremely busy so am not sure how it will work if I am no longer able to do certain visits like bandaging heavy legs, we spend a lot of time on our knees unfortunately and if I was to say I could only perform lighter tasks such as injections etc, I don't think I would be of much use. But I suppose I will have to see occupational health and meet with my manager xx

  • Hi Natja, I'm also a newly diagnosed mum of 2 young boys under 5! I'm only 29 years old and I'm Sero Positive RA with RF of 360. I was only diagnosed 6 weeks ago! I have done months of research on here (before i had definite diagnosis) and asked many questions. I started MTX 3 weeks ago so I know how your feeling, were all in it together! Think positive, the drugs and therapy available now will somewhat lessen the effect on present deformity compared to the pictures we see on google. How did your RA preset itself? Xx

  • Hi Jillybean, it's hard with kids isn't it? I am really trying not to take anything out on them, but it is really hard especially in the mornings when I'm in pain and they misbehave on the school run. My RA start about 6 weeks after having my baby, at first I thought it was from sleeping on a crap settee doing the night feeds, my back was painful at first then it spread quite quickly to my feet, knees, ankles, neck and really painful in my hands, I could hardly walk, and getting up in the night to do feeds was horrendous. I first saw a chiropractor then my GP who immediately did bloods. I saw a consultant privately to get in quick then at my local hospital this week. How did yours begin? I'm taking co coda mol and diclafenac and had a steroid injection on Tuesday, the pain is a lot more bearable, am not too bad during the day but I have terrible pain in my left arm and shoulder especially overnight, I don't know if the steroids have started to work yet. How are you finding the methotrexate? I don't feel any different yet but only started it on Tuesday, how is your pain? Xx

  • Welcome Natja,

    I am a year on from diagnosis, mum of two teenagers and exhausted lol. At times it's overwhelming, I also work in healthcare but in a school. But like most mums we just keep going don't we. Everybody on here is great we all have ups and downs but at least everyone on here understands and that's so important. So no advice really but we are here for you. Lou

  • Thanks Lou, how are you a year on? Are you on medication? And any advice on how you cope? X

  • Hi Natja,

    I have tried three DMARDs and one anti TNF with no success, only because I keep having side effects from them that are worse than the RA. but that's just me each one I think this maybe the one and I'm still sure that there will be one for me. I get cross that I struggle with normal things that I see my friends doing like running up stairs or getting out of a chair without holding on to something until I get going if you know what I mean! But i won't let a diagnosis take over my life, I work full time and look after my family. I do have to just say I need 5 minutes just to sit and rest before doing the next task which is hard, but if I didn't I then wouldn't be able to get so much done. When I got the diagnosis I gave my head teacher the employment booklet mentioned above just in case I ever have problems and it's now on file. I'm lucky that I have a husband and teenagers to help open jars, do up buttons etc. I just think that there are many people who are living with a terminal illness, I'm not and I'm so grateful that all I have is this. Not fun, frustrating at times but I have many years a head of me to see my kids grow up and time to spend with them that many people don't have.

    You are very early on Mtx can work wonders, take care Lou

  • thanks Lou, I am a strong person, but in shock at the moment, I am determined this wont take over my life and like you I often think there's always someone worse off, I have looked after a lot of very young terminal patients and its just heartbreaking, I will get my head around this! Xxx

  • Mine started around Sept 2012 with quite bad stiffness in both hands, went to my GP who initially thought it was because I knuckle crack ( she then learned I knuckle crack to stop my hands from locking ) then I saw a different GP in surgery and he tested bloods straight away and RF positive 360, he started me on naproxen and co codamol which barley touch the pain and referred me to rheumatology. I was seen at hospital 4 weeks later and my rheumatologist is lovely, I explained all of my symptoms, pains, aches, generally shattered ( I put it down to my 3 year old not sleeping ) he did an X-ray on my hands which came back clear :) then ordered an ultrasound on my hands next Tuesday, chest X-ray and he said I had flat feet :/ ( didn't know at the time it was related ) so he did an X-ray on them ( awaiting results) he confirmed RA in the office and started me on MTX 12.5mg to increase to 15mg over 6 weeks with fortnightly bloods. He referred me to a rheumatology nurse who is amazing as I started with a very painful elbow & shoulder ( RA related ) she has answered every question I asked in human terminology haha. I started MTX 3 weeks ago and I'm having a few side effects, nausea, dizziness and blisters on my arms, legs, face & quite badly my chest so back to Dr tomorrow to get checked out x x

  • You poor woman, what an awful time you are having. I have been crying all week about my own troubles which fade into nothing compared to what you are dealing with.

    Methotrexate is a great drug if you don't get any of the side effects. If it doesn't work for you there are many other drugs on the market, so don't give up.

    This disease is really just a day at a time. Some days are " not too bad" and then the next day you could be in pain all over. Keep on this site, there is loads of wisdom and a huge amount of experience that is there for the asking. We all know exactly what you are going through and we are all here to help in any way we can, so keep in touch and let us know how you are doing. X

  • Thanks Jeanabelle, Am already feeling better from all this support xx

  • Hiya,

    Oh my gosh, this was me exactly 2 years ago, diagnosed 6 weeks after giving birth, my RA factor was 1210 and thought my life was over; consultant told me mine was aggressive also; husband had to dress me ect, I could barely walk and changing nappies when you can't bend your fingers!!! I can fully empathise.

    You've had some amazing replies, but I just wanted to let know how similar we are (I'm 40 as well) and I have a 13 year old boy as well and Amy is now 2 and a half.

    Good news is that my RA was under control within 10months and I have been in medically induced remission ever since. I work part time, manage the gym and would say 90% better.

    I wrote a blog about my experience if you fancy reading it, if you click on my profile, then my blogs you'll find one called 'my very positive blog'

    Although I feel very lucky, I often think back to where you are now, it was the hardest time in my life as it is for you right now. I also felt my Husband should just leave and that he shouldn't have to look after me. I never dreamt that I would get back to normal again. This is just a blip, a big fat stupid blip thats a pain in the arse but you'll get there just as soon you find the right meds for you.

    I feel very sad to have missed out on all the things a new Mum should be doing at that time. I make up for it now :)

    Take care and feel free to PM me if I can help at all xx

  • Thanks Wiliby, we have a lot in common! I really feel gutted that I'm missing out on my baby, she's sooooo good, so easy it's unbelievable, it's like she knows her mummy's poorly. It's great you're in remission, hope I get there too, and I will definitely be in touch and read your blog. Just found out today we have sold our house! I've never been one to do things by halves and although I know it can be stressful at the moment I need something else to think about! Have you tried any alternatives therapies and or special diets? What do you do at the gym? I had all these plans to start jogging again after the baby and go on lots of walks in the Peak District, my partner bought me a mountain bike while I was pregnant so am hoping I will be able to get on it at some point!

  • I was just reading the reply you got from Williby. There is a great success story that we are all glad to hear. Now you have each other to compare notes with, great stuff. You girls are an inspiration to the rest of us. Williby, you are one very very lucky lady, medical remission after 10 month, brilliant! Good luck to you both and keep in touch with each other. X

  • Hi,

    That's amazing you say about your baby girl being so good as if she knows, my baby was exactly the same, when she woke up in the night for a feed she didn't make a fuss and patiently waited for me to get to her. Saying that she is NOT nearly so patient now!!!lol

    When she was around 6 months old, I still couldn't walk very far but I did find it easier to take her on the bike, this was my lifeline and we started to get out and about. This also helped build up muscle strength and helped the fatigue. I started a new medication 8 months into diagnosis called Enbrel, this is what worked for me, within weeks I was able to join Curves gym, they were great and supported me until I got my strength up.

    Today, I'm going shopping for new trainers! I've decided to try jogging, something I never fancied until I was diagnosed then felt very envious when I saw someone jogging!

    and you used to jog! any tips? you'll jog again for sure :)

    change of subject, prams were a nightmare, how are you getting on with yours? I started with a bugaboo but that's was impossible to work knobs twisting ect but then I sold that and got a Baby Jogger, that was the best pram, very light and easy to use. A bumbo seat was a must for me as I was able to have her in it securely on kitchen table or at a level that was comfortable as I couldn't get her from anything that sat on floor. I know I really shouldn't do that but I never left her and knew she was secure. By the time she was moving around, so was I :)

    As for diets, I think someone asked a question about this last week.... anyway I found that cutting down on salt, a big no no to any pre-prepared meals and I always keep an eye on saturated fats. Beetroot doesn't agree with me and can make me achy.

    If I feel some inflammation, I take ginger capsules and I use manuka honey for everything from cut/scrapes, cold remedies and stomach ache. The manuka is more for the lowered immune system rather than the RA.

    Have you got a good health visitor that supports you? they can sometimes really help, I never thought of asking for help until my GP suggested it, they arranged someone to come in first thing in the morning when my Husband went to work to help get Amy dressed and even make me a cup of tea and slice of toast! she only came a few times but knowing there was someone if I needed it really helped in the first days of diagnosis. I found it too difficult to ask family or friends for help.

    I'm waffling now, really hope your having a good day :) xx

  • You have such good advice that I feel I can't add anything here except hello,and I know how you feel. I was diagnosed 15 years ago, 6 weeks after my son was born so I know exactly how you are feeling.if I could go back I would ask for more help than I did, educate my close family and take care of myself a bit better, so hard with a new baby. You will get there, lots of super people on here to support you xxx

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