Hellooooooo!

Greetings to all

I'm new to this site, but it seems to be full of lovely people that genuinely wish to listen/help others, so I thought I would post today....

I'm 40, have been diagnosed for nearly 5 yrs now (since the birth of No 2), currently on mxt, with co-codamol, amitryptilyne at nights. Have had 2 x huge steroid injections since Nov, the last one did nothing to help :( so the Drs have tried me on sulfasalzine - well after 2 weeks, my face was up in a rash and I was having the most incredible mood swings / emotional moments - one phone call to the hospital later, and I was told to stop it and start again in 10 days! Dreading Friday - will tell hubby and kids to hide!!!

I know that I'm not as bad as many people - my mum has had RA for 20+ yrs, so I know what it can do to you - physically, emotionally, mentally. My life has changed though - I do what I can, when I can, constantly juggling day to day life with painkillers and trying to learn when I have done too much, telling myself to STOP!! But i have days when I feel down / extra tired - I have 2 kids (8 and 5), and its tricky to explain to them.

I hate having to explain to people what this disease is, that it doesn't go away when the sun shines, that 5 mins rest makes you all better. I am very concerned about the genetic factor - my mum has it, I have it - can I do anything for my kids?? If anyone has any input / help I would love to hear!

I hope everyone is having a pain free day and thank you for reading

Liz

x

9 Replies

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  • Hi Liz and welcome. You sound just like me. I still struggle to know when to stop. Luckily my kids are older (16, 19 and 20) so I can delegate although they don't always listen!! You'll be amazed as they get older just how much the kids do understand. When I talk to mine now about when they were younger, it amazes me some of the things they come out with. They're really kind and thoughtful boys (most of the time!) and I'm sure it's because they've had to watch me suffer and so know that life isn't always easy.

    One tip: Teach them how to do their own washing! Still a bit young I know but mine could all do their own by the time they were 11. I still fold it and iron it but they sort it out and put it in and out of the machine/tumble drier. One funny story: When I'd just taught my oldest son, he went to stay with his father for a few days. When he came back he said to me. "Dad did the washing but do you know he put all the whites in with the coloureds!!!" He was horrified! lol

    They can also cook a meal and in fact, my middle son is now a fully qualified chef!

    As for passing it on to them. Just keep a watchful eye. I've had the odd panic when they've complained that their knees hurt as I'm sure most people on here who have kids have done, but so far so good.

    B xx

  • Hi Liz and Welcome!

    I am just new to this too. I have Sjogrens and suspected RA (although my appointment isn't until August). Neither of my parents have these conditions or my sister, although my mum and sister do have asthma.

    Hope this helps.

    xx

  • Hello Liz,

    My name is Lisa, and May I be the first to welcome you to what I have found to be an Amazing experience with many, many people on this site, They have been a Godsend. If you like please read some of my blogs They may help if you read the inspirational messages people have left me to support me to deal with my "so called" friends, whom i have spent the past month or two, pushing away because of their negative comments about my illness, and their ignorance and non desire to do the research and find out what RA and Fibro do to you body, Not to mention the MTX as well as 10 other tablets a day. I hope you get as much inspiration and support as I have recieved, and Look forward to hearing all about you, .

    Lisa ((HUGS))

  • Hi Liz,

    Just wanted to say hello and welcome you to the site.

    My kids are grown up so I don't have any experience explaining this disease to little ones.

    As Lisa says there's lots of good people on this site, always ready to listen and just say a kind word if nothing else. Look forward to hearing more from you.

    Mary x

  • Hi Liz, welcome! I always thank my lucky stars that I've had 48 years without RA to contend with because my three sons are now 15,17 and 20. However I do believe that kids who live with a family member with a disease such as RA have more compassion and learn to do more and be more helpful and considerate. My lot haven't got the hang of mum not being well often and the one at uni still looks surprised when I ask him to help me do some basic tasks because it's very new to him.

    I hated Sulpasalazine - my first DMARD and I only lasted 3 weeks. I had identical symptoms to the ones you describe and lumps on my neck and oedema too. My GP took me off it and told me to try it again after a week but I felt so great off it that I phoned him rather tearfully and begged not to try it again and he said okay. This was before I had my official diagnosis but he was convinced enough by my blood results and symptoms to put me on Sulpha while I waited for referral apt with rheumy so he took quite a risk for me looking back. Shame it didn't work as it took 6 months to get a diagnosis and get onto MTX.

    Why don't you ask to try Hydroxichloraquine instead of Sulpha? I'm on this combination of therapies now having read on this site that it was the best combination of DMARDs for tackling early RA? I don't seem to have side effects with it although am struggling with nausea but think that's a viral thing caused by the MTX or maybe the combination of the two since MTX dose was raised. I would ask your rheumy team about this rather than risk the sulpha again. Tilda x

  • Hi there, and welcome. You asked about your kids, and I can imagine that's something that all parents fret about. 2 things to offer. First off, look how much better things are for those of us diagnosed in last 10 or so years after the new drugs came in. So another 10 plus years should bring in all sorts of things that mean that your kids aren't likely to have the same problems. Second, Emmaf posted a link to a talk by American rheumy (in questions) and what came across quite strong was the link to smoking. So when your children are old enough do make sure they understand how important it is that they don't start. Basically what he said was that the research is now showing that the proportion of people who get RA in USA is dropping (yippee!). And what scientists now believe is that loads of people have a genetic tendancy to get RA but there needs to be another trigger to make it "go live". And studies have shown that smoking is one of these triggers.... So with less Americans smoking, less of them are actually getting active RA. ( Personally I think mine was triggered by horrible stress at work, but that's another story....). ANd maybe in years to come people will stop thinking that RA is just what auntie has in her thumb.... Polly

  • Hi Liz

    & Welcome

    Looking forward to reading more of your blogs

    Good luck with meds on friday.

    Take care Joanne x

  • Hi Liz

    Well I have a family history, my Dad and his eight brothers all had severe Ra and my Grandmother did in bed at aged 36 ( u stayed in bed in those days) but still managed to have children!

    I never thought as a child that I might get it, it just wasnt a issue. But when i got to be 40, I got a test which was negative, so I was reassured and got on with my life until it appeared ~~BAM March 2011.

    I know now you can have sero negative RA so I personally didnt feel the test is a help. I of course asked my Rheumy "what about my kids" He just looked and said they might get it , they might not, but at least they are forewarned and can get treated early if necessary, there's nothing you can do so don't dwell on it too much.

    I still do think about it as I would rather they'd not have this pain, but then again I didn't want to them have chickenpos, fevers, baby teeth!!!

    I agree with Polly, let them look up risk factors such as smoking, stress and try to let them know the family history but some peoples RA doesnt appear in their kids. It would be great for the research to continue for our families though, wouldn't it! And dont forget their "growing pains " are maybe just that, but its always worth just to keep a check!!

    Love and hugs

    Axx

  • Thanks to everyone for a lovely welcome to this site - certainly has given me some ideas! i didn't know of any link with smoking as a risk factor!!

    Looking forward to getting to know everyone better

    Hope everyone has a nice day

    Liz

    x

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