My first time here

Hello everyone. Well this feels strange and I don't really know what to say if I'm honest.

I was diagnosed 6 months ago at a ripe age of 32 So the last few months have been a struggle at times. I have a 16 month old daughter who is quite the hand full and I work. This has affected every aspect of my life as I have struggled mentally with not being able to do certain things at times due to the pain, you know the simple things like picking up my baby from her cot. The things that were never an issue before RA. My relationship with my child's father has fallen apart as he didn't understand and clearly didn't want to understand how I was feeling whilst I was trying so hard to maintain a work and home life.

Medication so far hasn't worked so I am waiting for funding to be approved for a new drug but it's all a waiting game in the meantime steroids again at 25mg which I understand is a high dose and I worry I will affect my bones with the constant use of them.

I guess for someone who didn't know what to say I've managed to waffle on a fair bit.

22 Replies

  • Hi Kelly82,

    I just wanted to say a quick hello and to say also i know how you feel... I was 32 when i was diagnosed and my little girl was 6 months old. That was a couple of years ago, it's taken a while and I've tried a few medications but I'm doing alot better now.

    In the early days i had quite alot of support from the occupational therapist at the hospital who gave me splints and wrist supports as totally understand re: your comments about lifting your baby out of the cot, i also used my forearms alot to pick her up.

    I used to visit this site all the time, when i was first diagnosed and I found it really helpful. It was a huge support.

    Take care xxx

  • Hello Claire

    Thanks for your reply. I found myself doing that with my forearms too or pushing doors open with my elbows as my wrists were so weak. I was given splints for both wrists by my specialist nurses at the hospital which I still use time to time, kind of look like a boxer and are usually asked loads of questions if I'm wearing them.

    I'm pleased medication is making life easier for you and your well. My body is still trying to work out what it wants, methotrexate hasn't worked for me.

    Reading some of the comments on here are so supportive it's unreal. How can strangers be so kind as to reply let alone have a caring ear and kind words when our nearest and dearest can not sometimes

    I hope you continue to feel well x

  • Hiya Kelly82 & welcome. I'm sorry you've had need to find us but obviously pleased you did, it sounds as though you need some help & support from people who understand how things are now & how you've changed since being diagnosed. I'm sorry your partner didn't feel he could accept you with a disease you didn't ask to fall prey to. Oo that sounds awful, especially as I have a wonderfully supportive husband but believe me you're not the first I've heard that's happened to. Anyway, I hope the new med you're waiting for isn't too long in being approved for funding & with fortune on your side you'll show him what he's missed out on.

    Has your Rheumy not suggested you take another med to protect your bone density if you're to be on steroids for some time? I've been on low dose for a while now & take a weekly bisphosphonate & a calcium/VitD supplement daily as I'm borderline for osteoporosis. I don't know if at your age it's necessary but it might be worth asking, he will say if he thinks it is & put your mind at ease. It might also be worth asking about referring you to Occupational Therapy, thinking about caring for your baby girl. You will have to admit you're struggling which you may find hard, but you are & it'll be neither good for your little one or you if you can't enjoy this precious time with her so please don't be brave & think you can cope if you can't.

    I hope you enjoy coming on the site & don't be a stranger, someone here will be able to help with most anything RD related! If you get a mo (like you do with a baby!) have a look through the NRAS site, it's full of all things RD related. :)

  • Hello and thank you.

    It's strange as my family are so supportive it's unreal. Constantly checking I'm ok and asking after appointments. My bosses at work are also very supportive who have allowed me to cut my hours as at the moment working a 40 hour week is too much. Fingers crossed funding won't be too long.

    I was sent for a bone dentist scan a week before christmas but the results have not come back yet due to the christmas period but I will definitely ask at my next appointment about protecting my bones.

    I have been assessed by an OT who has given me things for the home yo make it easier which have been a help. To be honest, I have always been a strong women and my friends and family always comment about it but at times I feel vulnerable which isn't how I imagined my life to be at 32 years old. Thank you again for being so supportive, I'm glad I came across this site

  • I'm so pleased your family are supportive, it can make a world of difference. That said it may be difficult at time for them to fully understand just how things will change, how you will need to rely on them more than you have before so do keep them updated, even taking someone with you to your appointments if that's possible.

    it sounds as though your Rheumy is checking your bony density in readiness for the steroid treatment. I guess it's a bone density (auto correct perhaps?!) scan he arranged for you (DEXA scan). Hopefully that will come back fine but even if it doesn't he'll likely prescribe similar to what mine does to protect your bones for the future. Referring you to OT was great, I hope you find the things they gave you help. Sounds like you have an excellent Rheumy who has recognised you need help & set things in motion without fuss. A good Rheumy is worth their weight in gold, believe me! I started on hydroxychloroquine 400mg then methotrexate 15mg was added but that didn't work so the HCQ was dropped & MTX injections plus low dose steroids, NSAID, plus the usual suspects works for me fortunately.

    It's a big learning curve & you will continually learn! I'm 61/2 years after diagnosis & 54 but I'm still learning even though I'm like a dog with a bone with all things RD related & much older than you, I'm not sure how I would have taken the news at your age.

    Anyway, I hope your results come through negative & you get on your new treatment sooner rather than later. Take care.

  • Good morning Kelly,i am so sorry that you have found us, you have found a great group with someone here who will always answer your questions. I am sorry your partner has not been able to be supportive of your disease. His loss. It will take a while to get your drugs sorted so be patient darling. The steroids is not a really high dose as the dosage can go higher . Have your drs given you adcal to aid your bones,if not ask your dr about it, i broke my ankle back in May and afterwards i had to have a dexa scan(to check the state of my bones) and for my age my bones are still pretty dense so ask about them.

    So welcome from me and everyone else on here. Never be afraid to ask anything about your disease as something that might sound silly to you,someone will have already asked said question and someone will always have an answer or some comfort. Luv Sylvi.xxxxx

  • Just to sympathise...... I've also been given a possible early ra diagnosis which kicked off 6 weeks after my baby was born. Also having trouble with getting baby out of cot in the morning. 8 weeks into methotrexate now, so fingers crossed ..... Baby 5 months old now.

  • Good morning. I'm sorry to hear of your new diagnoses. I know too well it's a struggle and can be so frustrating. I'm really hoping your methotrexate kicks in and life is made easier for you.

  • Good morning,

    I only came on here yesterday and have already had more support from strangers on here which is strange than a man who said he loved me. I need strong people around me to lift my spirits at times not ones who will make life harder which is why that happened. It has been 6 months on methotrexate but 4 months at 20mg plus my consultant added in hydrochloriquine which my doctor stated worked so well in combination. But has yet to make a difference to my life. I have been on this dose of steroids for a couple of months constantly and am yet to reduce it as this is the only thing helps with the inflammation. I has a bone scan before christmas but haven't had results yet so I will know soon I guess.

    Thank you so much

  • Hi there. Sorry to hear you've had to join us but believe me on here you will get so much support. I am 42 and was diagnosed in April this year. Like u I have a little one (toddler now) but before I was diagnosed I remember the agony guilt and heartache I felt for not being able to lift him, change him etc.... Belie me though it does improve. It took about six months or longer to feel a difference but hang in there it will happen. And don't forget we are all here for you xx

  • Good morning kelly82. I can see you've had some lovely replies already, I just wanted to add in a hello too. I was diagnosed at 28 when my daughter was around the same age as yours and also found it very difficult to care for her. My husband was and is supportive but works shifts so was at work a lot when she needed baths and bedtime routine etc. I also couldn't sit on the floor to play with her which is where you spend most of your time with a toddler usually! I couldn't get up again if I got down there and couldn't lean back on my wrists as they were too sore along with my elbows and shoulders.

    After starting etanercept injections and moving to injectable methotrexate I was able to return to work and lead a life pretty much that I had before diagnosis. I have learned to listen to my body and not push it too far, that fatigue is now my main symptom and others find it hard to accept that I'm just too tired to do something or have to have a sleep in the day at a weekend (it's a symptom you can't see and some assume I'm being lazy!), and now my daughter is older she understands mummy has "bad bones" and she can't do some things like pull on my fingers as it hurts. She even watches me doing my injections each week bless her.

    I hope that with time your story turns out similarly to mine, and you can stick it to your partner for his lack of support. Just allow others to help you when it's offered, especially taking care of your child, such as bathing her or taking her to the park so you can rest. Fingers crossed you'll get the meds sorted asap in the new year. 2015 will be your year to get healthy again!!!

  • Thankyou for this. It's reassuring, as ever, that we aren't alone. I've found I'm not having to ask my boy twin not to grab my fingers when he wants to show me something. Yes, it's the fatigue. This Christmas has been terrible. Luckily my husband is great as we met whilst my mum was still alive (she had RA for 30 years when she died at 58 from double pneumonia from the effects of all the drugs on her lungs) but you are so right. You feel like you've been filled with lead. Like flu, it's trully horrid. Anyway, Thankyou, I'm not alone. Dad lives abroad and my sister lives 3 hours away.

  • This disease is like a roller coaster with many up and downs. Unfortunately it can take some time and changes of medication to find a solution that is right for you and most need up to 12 weeks to get into the system before working properly. There is no easy way to predict which medicine or combination of medicines will work for you so it is a case of working through them. When you are tired spending time with your child is much more important than the housework as that will always be there whereas your child will grow up so quickly.

    I would suggest you keep your own record of what medicines you have tried with dates and short explanation of why you stopped and any side effects. As time goes on your hospital file grows, doctors and consultants change and it can be helpful if you have your own list as it is hard to remember. Farm

  • Hello and welcome from me too. Mine were teenagers when RA struck and one had already left home so very different and I can only imagine how hard it must be with a young baby and a teenager for you - let alone without a supportive partner.

    But I'm very glad to learn that your family have been there for you and your workplace has been good. Six months is still early days and, from what I've read over the years here, the anti TNF drugs may well be the ones that lift you out of pain and keep the RA at bay - enabling you to reduce steroids slowly but surely I hope. I found injectable MTX much more effective for my RA than the oral type so it may be worth asking about switching to this as well?

    Good luck with getting into a new drug regime soon and keep posting!

  • Hello Kelly82

    Welcome. There are lots of people with good practical tips to help you cope with everyday life, and an "understanding ear" on the site. Everyone's journey is a little different, and you will hear about lots of different people's experience of what did and didn't work for them. Remember there are lots of people managing well with their illness who may not be posting - there are lots of good news stories out there, they are sometimes just not so prominent.

    Its hard waiting the months to give the drugs the chance to work - I do hope that you and your doctor find something that eases your symptoms soon.

  • I agree with all the comments below. This is the first RA site I found after being diagnosed back in June. It's very helpful and I'be educated myself from the best people n here because they have it, live it and are one of our best resources for open and honest feedback about anything. I mean anything! Lol. Hopefully you will find something that works for you. I was lucky it took me a about 4 months to work through several meds to find the ones that work for me pain wise and minimal side effects. I take Enbrel and Celebrex and some natural supplements suggested by my doctor. I'm pain free now and I would have never thought it would really happen. I was hopeless at first but now I have such a positive outlook now. Good luck to you! I knew nothing about this disease really until this site. I originally started n this site early June and No More Heals was my most frequented respondee. She's really dedicated on here. I cancelled my account but signed back up a few months ago. I used to get discouraged but not anymore so much. Again wishing you well and there is hope at feeling better :-)

  • :) x

  • Just wanted to say Hello too. I'm 33 and was diagnosed 3 weeks ago, taken 1 dose of Methotrexate so far...

    I have 23m twins (boy/girl) so I do totally understand what you are saying. I worry about the future.

    I spoke to my HV this morning for my twins 2 year check and discussed Homestart help, maybe something there for you too?

    I hope they sort your new drug soon, would be interested to hear what it's called and how it works. This group is great and very supportive. I posted a couple of weeks ago and got a lovely response and very helpful.

    Take care, xx

  • Hi Kelly .. you've had some excellent advice here and I just want to add my support for you and say it will get better once the right combi of meds/right med works for you. Farm is right .. keep your own record of your meds and how you feel and any progress etc or none if that is what you feel. I keep an efficient record (on my ipad WP App) and I print off a copy for my consultant. I also have a binder/file which my med company gave me for recording my progress, etc. I don't have children but can imagine the frustration and upset of trying to do everything you want for your baby and taking care of yourself. There are many other effective RA meds to keep your condition under control if your current combi does not but I think it may be a bit too early to tell, if a new med has been added to the anchor one recently. I hope that now the Hydrochloriquine starts to kick in and combines with MTX to give you some relief. I think too that six months is a realistic time to see if there has been progress. I hope by your next blood tests the results are showing some promising results. I know how hard it is to wait for a slower working med to take effect. Thinking strategically is hard when we hurt now! All the best for 2015. NK x

  • Hi again, I'm sorry I didn't manage to reply to you all individually but was busy at work. I am in shock as to how supportive you have all been and it really melts my heart that people who don't know me at all have genuine advice and care about my progress. It's such a nice feeling so thank you all, I really appreciate your kind words xxx

  • Hi kelly82 and welcome to the site. You will find a lot of support and help here. Just to let you know that if you ever need to speak to someone about your RA you can always ring the NRAS helpline. Our number is:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    We have a very good publication on emotions and relationships. I have put a link below to if for you. Hope it helps:

    est wishes

    Beverley (NRAS Helpline)

  • Hi Kelly

    Hello and welcome. I am so sorry your ex has badly let you down, not at all what you need when you have just been diagnosed! I was 26 when I was diagnosed and I have a son. I can relate to you totally. When he was little he was so heavy, he spent more time in the pram than his toddler group pals but it didn't do him any harm. My hands were a big issue and he learned to climb up on our solid changing table and put his legs in the air for nappy changes. I bought a hippychick hip seat from Perfectly happy people website (£34.99) and it was a big help. It's a Velcro belt with a perch attached and means you can hold your baby/toddler with 1 arm and without crooking your hip if that makes sense? It was brilliant! I too have experience of waiting for funding for drugs. Not what you need but because our drugs can be very pricey our hospitals have to get permission for the funding. If you want to talk on the phone to someone a similar age or with a child similar age to yours NRAS can arrange. It's a good charity to join if you fancy it. I wish you and your wee one a happy and healthy new year. Take care

    Kikideelili x

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