I've a had a lot on so I've been away for a while.. Recently I've been feeling a bit more down about things and as I get older I worry about how I am going to cope with certain things. I am 24 this year and I'm trying to buy a house myself, I plan to have children at some point and they should all be exciting times but I'm terrified im not going to manage on my own. I'm terrified that pregnancy will be the worst thing ever and im terrified that when I do have children I am going to struggle with them as I cant bend down to pick them up etc. My knee is totally damaged and I feel the pain every day. I walk with a constant limp and I cant bend it right up and I cant exercise much if at all. I tell every consultant this and what did one of them come out with? I've to cope until I cant cope anymore.
Honestly the worst thing I have ever heard. I'm so frustrated because I want the best quality of life now in my twenties, but they wont give me a better quality of life until I'm much older and get a new knee. I'm helpless, they're helpless. What can you do.
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AmyDee207
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11 Replies
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OOh... There are some young people on this site. One posted two days ago. i hope you have some responses soon. (Old uns would be pleased to support you too.)
Sorry you're feeling so low Amy, that's a useless comment for them to make, why can't they give you knee op now if it's impacting on your life that much? Sympathies x
If you would like to have a chat with somone who has had a baby whilst living with RA, we can arrange a call with one of our Telephone Support Volunteers. We have some excellent, lovely ladies that can offer you some support and guideance. Do give our Helpline a call if you think you might like to speak to an NRAS Volunteer, or for more information, call 0800 298 7650 or email helpline@nras.org.uk.
So sad and so wrong! See your GP a hundred times if it takes that Amy and ask to be referred to another Rheumatologist. Until someone listens to you - keep going! Easier said than done -I know. When fatigue and pain has to accompany you too but you have your whole life ahead of you. It's YOUR life -not theirs.
Just signed up because I saw your post, I’m 31 and was diagnosed at 14 with sero positive RA and joint hyper mobility syndrome it’s been a long road and at 28 I decided it was time to have my babies I was fearful of everything relating to how I’d find the physical strength to care for them and was offered some great support from drs and midwives for my first pregnancy, RA went into remission with both pregnancys as I believe it more often than not does thus making pregnancy really quite an enjoyable time and now I can quite honestly say that the worrying was pointless because even on my darkest most painful days these children create strength in me I never knew was possible, so please don’t worry about it, just keep heading in the direction you want to go in you will be amazing!
I was diagnosed at 19 (now 51), sero negative inflammatory arthritis, which started in my left knee and gave me lots of grief until it was replaced when I was 48. In the meantime I had several arthroscopies to try and help. Also had children at 21 and 23 and then again at 33 and 35 (changed partners and as he did not have any we took the chance). Yes it has been hard and several periods of struggling with treatment. The children have taken it in their stride although the older 2 say that the treatment I was on after having the last 2 meant I could do more with them. I wish I could have had the knee replaced much earlier but as they have a relatively short life span and a second replacement is often not as successful they left it as long as possible.
As Farm123 says there is a real reluctance to replace knees when you are young, because of having to redo them, so it might be an uphill battle to get agreement to it depending on how damaged your knee is. So maybe try an alternate approach?
Have you asked to be referred to a proper physio? Not one that hands you a leaflet and tells you to get on with it, but someone who will guide and suppport you to strengthen the muscles that support your knee. I had arthroscopies in one knee which helped. But what really made the difference was proper structured exercise which reduced the pain and disability hugely. Also if you strengthen your knee a future operation is more likely to be successful.
You've been dealt a poor hand, and stupid comments by the consultant aren't helpful. However don't let this stop your plans and dreams, just recognise it will be more difficult - but not impossible!
I cannot imagine what you are going though with regard to having a family, but after reading your post it seems to me if you are going to get your own home plus wanting to start a family at some point then you are a very determined young lady, yes you would not be human if you were not scared about the future at your age,we were the same at your age starting a family and making sure that they are safe, hopefully there is someone in your life in the future that you could share your life with who understands your condition and can help, please never lose faith when all of the old ones are no longer with us people who get this illness would look for some help and you will be the one to answer them because you have the strength to keep going very good luck for the future you can do it
Hi Amy and hang in there. You are so young to have to worry about the effects of this grim disorder. But you also have it within you to bring your dreams to life. Sometimes they don’t come about in the way we might have imagined in a ‘perfect world ‘, but please don’t let the RA make you think you can’t have these things. We all have to find ways to get there in our own ways. Sometimes the path might be different than we imagined but we get to the destination in the end.
I did not have RA when I had my children but did develop other autoimmune and neurological disorders which came to light as a result of being pregnant, so lifting, carrying, bending, holding etc once I had babies to care for was difficult and painful and I was scared what was wrong with me before these were properly diagnosed. Despite all that, my children are bright shining lights in my world, I would not be without them despite all the physical stuff that came along and it is all worth it. I have heard that in fact pregnancy can be great in RA terms as it all calms down but I totally understand your worries about the unknown. Maybe just take one step at a time and try not to worry about the bigger picture. Often the things I spend ages worrying about are a waste of time and something I never thought of comes along instead!
You don’t mention if you have a partner you plan to have babies with yet. Remember that you won’t be the only person involved and for me, my husband has always been very involved with the children partly due to some of the things that happened to me. That has been very special in itself. In a similar vein, although it has been really hard for my kids when I have been very unwell and limited with the RA, they are so resourceful and compassionate deepened by this experience and they have an understanding of people living with disability and differences that not all children have. They are also practical, well able to pitch in with chores and generally be helpful and accept that life isn’t always easy and we have to figure out some ways to manage. I think children grow from seeing that they can contribute in a useful way and are actually needed.
With the house buying, this is big for anyone the first time. Would it help to write down exactly what it is about it that worries you? Is it about keeping up mortgage payments if you are ill, etc? Then you can look at each worry one by one and see if you can think of how you could deal with it IF that thing happened. This can help to make worries more manageable and gets our brain into a more useful problem solving mode and out of worrying in a loop.
If you can speak to someone else through NRAS I really recommend that as I used that service when diagnosed and it was such a relief and helped me think differently and get hope from someone who is further along than me.
Hi, I was dx 1971 age 6 but went on to have 2 healthy children. It was extra painful coming off MTX during pregnancy and coping with new born baby afterwards, without help, only husband in evenings/weekends, but if you want children, you'll find a way to cope.
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Knee update 
3 forward 2 back
Finally here!
Methotrexate and waiting 
Rant alert! Sorry...
