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Rank: Member
Groups: Registered
Joined: 7/20/2012
Posts: 25
Location: Maidenhead
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Hi,
I'm 24 years old and have been diagnosed with RA for the past 4 months. I'm finding things very hard at the moment. I've had a badly damaged knee since the beginning of last year, but then fell pregnant with my second child(I have a boy of 3 and a girl of 8 months) and drs couldn't do much for me. By the end of pregnancy I couldn't put weight on my left knee and couldn't even get a pair of trousers on unless they was jogging bottoms it was that big! I finally got to see a consultant and had keyhole surgery in February, after being told everything will be ok after the operation and some physio, the least I was expecting was to be diagnosed with RA.
I've only just started my medication of sulfasalazine(started on 500mg, now on 1000mg and will be on a final dosage of 2000mg) I've also had 2 steroid injections. I couldn't start my medication as I had a dangerously high liver count but now have come to the bottom of that! I have to use a crutch for walking and find it very hard to look after my 2 children!
I've lost many of my friends due to having RA, they don't seem to understand what I'm going through and how bad RA can be. On bad days and flare ups everything goes stiff and hurts, I've never felt pain like this, my back neck, wrist, fingers etc all go. A lot of them expect me to be out all the time, doing things they want to, I physically can't! They say im young and should be enjoying life..I wish I could! Luckily I have a very supportive family and fiancée around me.
Sorry to ramble on but sometimes just need to get things like this of my chest, especially to other people who understand what I'm going through.
Thank you for listening :0)
Natalie x
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Dear Natalie. I found your post really heart breaking. I'm quite newly diagnosed too but I'm so thankful that I got to the age of 47 before getting RA and that I'd had the chance to bring my son up without it affecting me back then. I'm really sorry that you've not been so lucky. I've had full blown RA for 15 months now and I promise you things are very likely to get much better for you than they are right now. I know a lot of people who have been diagnosed in the last few years because I belong to a few RA face book groups. Most of them say that the first year is the worst and that things usually settle down a bit after this. It takes quite some time for the medications to take effect for a start. Often as long as six months. Even then the consultants often add in other medications until they can get the best outcome for you as an individual. Secondly, I want you to know that you are not alone in being a young mother with RA. I think it would really help if you can hook up with other people similar to yourself with RA because you need people who really get what you're going through. as I said before there are plenty of on line groups, but also a call to the NRAS helpline could help you connect with a 'buddy' who's recently been through what you're going through right now. As for your friends, you will learn through this who will and who won't be there for you. People who are real friends will make the effort to learn about RA and how it affects you and they will be there to support you. Others I'm afraid will abandon you (as happened to me) but maybe they weren't worth your friendship anyway. Also you will meet new people through having RA, some of which will become very close friends for life. I have met a woman in the States on line who is the same age as me and in the same stage of RA. I count her as one of my best friends now and we plan to meet one day. We chat at least twice a week and our friendship means so much to me. I honestly don't think I'd have coped so well without this support. Anyway, enough now from me. I know other people on the forum will respond to your post and offer the support and friendship you need to get through this difficult time. You have made such a good move in joining NRAS because not only will you get accurate information about what to expect but you will get so much support and understanding from other members too. Love from Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 Hello Natalie Welcome to a place where people are so lovely, helpful, and able to offer advice. Sorry it had to be this way with us all having ra! Don't worry about your friends, concentrate on you and your family. I was diagnosed when I was 34 years old, just had baby. Really strange time for me, happy I'm a mum, but shocked I was told that I have ra. I asked the hospital if I could chat to a mum with ra, the consultant came back and said that no one wanted to talk! When first diagnosed, I was on maternity leave and stayed at home being mum and taking the steriod tablets and other tablets. Once this kicked in, I was able to dog walk, pram walk and drive. As my daughter got older, if things were painful, we would watch cbeebies!! On the bed or on the sofa. I only joined nras when I turned 40 years old in May.......I don't walk about it to anyone (my way of dealing). Bosses at work know, not sure if they fully understand. I try to laugh (and be positive)......Mr Tumble on cbeebies tv. I went to soft play with my daughter.......got her dad to climb up the equipment and down the slides because I couldn't do it.my husband does things that I cannot...we went to peppa pig world last year and he climbed up lots of steps with my daughter to go on the water ride!! I was happy to take photos of them coming down! Its been a strange experience learning to be a mum and adjusting to ra, humour to me is important and letting small things go so you can have happy times and not get worked up with stress. Naomi suggestion for you to call nras helpline for a buddy sounds a fab idea - see if you can get paired up with other young mums. I wanted to go to nras meeting, but can't go as too far away (post foot op). Do speak to your ra nurse/consultant if you have any questions, they are a good font of knowledge. Sadly I have been off methtrix for two years trying for baby, nothing has happened - I have got to the stage of wanting to go back on for the sake of pain. I've got a flare up and hospital cannot give me anything whilst my pins are in...they come out end of July, so I'm gearing myself up for then.......pain is pants! I found it easier to have a three wheel buggy for ease of turning - mothercare own good. Do things in your time, ask your elder one to help you if you drop things. I wish you well, sorry we had to meet like this - weather looks good for the next few days - free vitimin D! Take care Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Natalie
Welcome to the forum, so sorry to hear about all you have been going through, really good you are here as we all understand this awful illness and how it dramatically effects our lives in the early days.
I am fortunate having only had RA for three years when I was fifty three, it can take time to get into the right medication that suits you as we all tick differently with the drugs and what suits may not suit another. Over recent years there has been a huge amount researched into the condition developing brilliant drugs to control it and bring you into clinical remission, which has happened to me. Be assured, it might take time, but you will get your life back, its truly hard to stay positive when you are suffering so much but try if you can, you won t be this poorly forever. There are regional Nras groups dotted around the country, so possibly you could go along to one of them, so you don t feel quite so alone with it.
Keep posting and let us know how you are getting on,
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Natalie - welcome to the forum, although I'm so sorry that you've got RA. You'll meet lots of people here who really understand how tough RA is - I myself have suffered for about 3 years before I finally got a diagnosis, about 2 months ago. I was on steroids for a month and am now in early days with hydroxychloroquin and methatrexate, and my symptoms have settled down loads. Everyone here says that it's really tough at first while your meds start to take full effect and often it's the fatigue that is hardest to cope with. Having a toddler and a baby is relentless work without having to deal with RA as well, so it's no wonder you're finding things hard - you sound like a miracle worker to have got to this point - so pat yourself on the back and keep reminding yourself that you're doing the best job you can - and that's better than many out there. I remember when my eldest kids were small and I got very depressed because I found it really hard to manage (and that was long before RA). Even something as simple as going to the loo required planning and organising the children, and then inevitably some crisis would happen while I was occupied!!!!!! I was desperate for some peace and it never seemed to happen! But those times do get better - the children get older and slightly less "needy", so hold onto that thought and never give up hope that it will get better. In the meantime, you could talk to your GP - you might want to try something to lift your mood if things are really bad. I still take Citalopram and they don't conflict with my RA drugs, and certainly help me to cope with the difficulties of the RA. Wishing you well, and do keep posting - we're very good at listening to whatever you want to get off your chest Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 51
Location: Blackburn, Lancashire
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Hi Natalie
Sorry to hear you have RA at such a young age, I was 33 when I was diagnosed 11 years ago. Although I do not have children I know what you mean about friends wanting you to go out as you always have. It sounds as if you have lots of family support and this was the way I coped at the time.
Things will get easier with your RA as time goes on and your medical team find the right combination of drugs that suit you.
I sincerely hope that things get better for you soon but if you ever feel like a good moan do not hesitate to come on this forum as unfortunately we are all in the same boat and sometimes it just helps to speak to people who are going through or have gone through the same things you are experiencing.
Best wishes
Lisa
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Natalie,
so sorry to hear you've been diagnosed at such a young age and with two little children.
i've been diagnosed 2 and half years now i was 56 and i know how hard it was for me to come to terms with it and also get over the fear factor of starting new medication etc. in fact i lost over half a stone with stress in the week i was diagnosed.
the first thing i learnt was each drug takes time to work .. and that you have to learn to pace yourself, i know this will be difficult with two little one's to look after.
i found the NRAS Helpline a great support at the beginning as well, talked through all my fears and questions, although i am very fortunate to have a great Rheumy Department and Rheumy Nurse along with my GP who is very knowledgable re RA.
for me i took it one day at a time, and basically still do now.
your true friends will come through for you ( although i know how hurt you must be at losing some of them ) i don't think people really understand RA and just think you get the odd ache or pain, i know i didn't know much about it before. it's good you have support of your family as at the end of the day they are the one's that matter.
do keep posting and let us know how you are getting on, there is always someone here to help and answer questions .. we have a wealth of knowledge on here.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Natalie, Welcome to the forum! I`m so sorry you`ve been diagnosed with RA at such a young age, and with a young family to look after as well. I was fortunate in that I was 56 when I was diagnosed - on my first grandson`s first birthday! Someone said the first year is the hardest - with me it was the first 18 months, with so much to take in, so many limitations to learn to live with, and so many different meds to try. I have a very good GP, and in all honesty he kept me sane. I know I got quite depressed, as I couldn`t pick up my grandson, or lift him out of his cot etc. However, once I got on a drug which worked, things did improve, so by the time my second grandson came along, I was feeling much more positive. Like you, some of my friends just "didn`t get it," and urged me not to give in, put mind over matter etc, etc. My real friends understood, and also I have a wonderfully supportive family, thank goodness. Yours will help you through the bad days and celebrate the good ones with you. Things will improve - one of the things I found hardest was waiting to see if the various drugs would work. I`m not noted for my patience, but found this very difficult, especially as so many drugs either didn`t work or had to be stopped for various reasons. There are, however, lots of drugs out there now, and one of them will suit you. Take care, and do kep posting, Kathleen x
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Rank: Member
Groups: Registered
Joined: 7/20/2012
Posts: 25
Location: Maidenhead
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Hi Ladies,
Thank you all for the comments, They all put a smile on my face! Just thought I would update you - things still aren't going very well and still finding things very hard. I've now been on sulfasalazine for 5 weeks but just doesn't feel like its doing anything. The pain was that bad on Thursday that I had to visit my doctor for some more pain relief as nurofen just wasn't working! He put me of voltarol and paracetamol till next Thursday when I finally get to see my rheumatologist! I physically can't wait for the appointment! Everything seems to be hurting twice as much now, even my 'good' knee has started to give way and click alot and my right hip is really painful! Fingers crossed they can help me! I've had a couple of steroid injections which have helped but only seem to last a week, then back to square one! I feel amazing after an injection! I'm not sure they will start me on steroid tablets though!
Life as a family is still very hard and very frustrating, especially with it being summer holidays! We went to Legoland last Tuesday which was totally the wrong thing to do as I was hurting real bad after, but the children had so much fun! My little boy is really good and understands when I'm having bad days and doesn't ask to go out to much! I guess I just look forward to what I will be able to do when I'm better and found the right medication!
The good thing about not being able to get out much is that our wedding planning is coming along very well, so some things do have a positive side!!
anyway enough from me! hope everyone's well and enjoying the nice weather!
Natalie. xx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Natalie - you sound like a real fighter and a wonderful mum - that's a great combination!!!! You definitely need to ask for more pain relief and your GP should be able to help - when I was really bad before diagnosis I tried the ibuprufen route - max dose 4 times a day EVERY day and it did nothing! My GP prescribed Naproxen which is stronger and lasts longer, it was marginally better, and I keep taking it even now that my symptoms have settled. Plus I had a course of steroids from the rheumy - which helped massively. Of course you can't take them for too long because of the side effects but as a short term boost they are really good. You mention having steroid jabs - was that in your knee? Re days out with the children - I expect you're loaded down with buggies, nappies etc, but do try to avoid carrying too much - easier said than done I know. I've just written another reply about my hiking poles and little tripod seat, so I won't repeat it all here, just to say that I find it essential to be able to sit down very frequently - not just for the pain but also to enable me to pace myself during a long day out. But while you've got a flare you'll probably feel better if you stick with really simple stuff like a mum and toddler group, or a playground with swings and a sand pit. Keep positive because you will feel better once your meds are sorted out - you're young and that will help you bounce back -good luck Sylvia Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Natalie Regarding the pain control, I found the higher strength co codamol 30/500 worked very well for me, its does however cause constipation as a rule, but I ate dried apricots/figs which seem to combat the problem  You could suggest this to your doctor for his thoughts, I did have a go with tramadol, but made with feel heady and sick but that can work well too. There are Brutran patches as another alternative, didn t find they helped me all that much though. Perhaps speak to your doctor, I sometimes think they really don t understand just how painful it all is for us, that can be a problem. Take care, Julia xx
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 Hi Natalie Wow, you've done lego land how cool! Haven't been yet. Did paultons park, Hampshire (peppa pig world) last year. My husband did the energetic rides which involved climbing up steps (for water rides) and low bending knee rides. I did the in between, and said to my daughter I'm the family photographer of the day! She was happy dragging her dad on the rides! We joined national trust last year, chuffed to bits I climbed up corfe castle last year. This year has been awful for me getting round/mobility. I've relied on wheel chairs at national trust after my foot op. Yesterday we went to kingston lacey in Dorset, I used my walking sticks from timpson the cobblers, I didn't walk far but said to my husband you two go off and I shuffle around! He took my daughter up the stairs of the house and I sat on chair watching their tv of filming of the house for people that can't make it around. I've had ra for 5 years since having my daughter and learnt adapting as well as being a mum! I think there is no right or wrong. I stopped using baby grows for my little one as the poppers were too fiddly for me, and bought elasticated clothes for her with minimal buttons/clasps. My husband and I never mention arthritis, as we want her to have a childhood without worry. She knows her dad takes her on rambles/hills for walks, cycling and anything energetic and her mum does duck feeding, craft, baking and shopping! We love swimming together. When she was younger her dad would lift her out of her cot during the nite and I would be happy to to the feeds! Having my hubby and working together as a team is fantastic. Sure, I have pain.....late at nite or early hours, but I look onto my day time with our family unit and next adventures we do together. Good luck to you. Try peppa pig world. Jane
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