17 and a little frightened

I was diagnosed with RA one month ago along with a complication of anemia. I am 17 years old and painfully curious, so curious that I've done a lot of research and found less than encouraging prognoses and stories. I have an appointment with a rheumatologist in a week and would rather not go in with so many fears and disconcerting feelings. Any advice and/or stories that may help? Thank you, in advance.

22 Replies

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  • Use us here for rants worries etc. I find writing all I am thinking down helps and be strong if u dont agree or understand speak up .. good luck xxx

  • hello there,

    Sorry you find yourself facing illness at such a tender age, it's good that you are researching etc, but try not to dwell on negative stories you read a little positivity goes a long way too. I hope all goes well for you at your appointment x Bev x

  • Hello

    Welcome to our site, you will be able to get support here from like minded people.

    Generally speaking your Specialist will ask for a urine sample and the nurses will also weigh you, and take blood pressures. You will be seen by the specialist and they will look at the effected joints, He may use a scan to look at the joints, Xrays will most probably be taken. They will take bloods and suggest medications.

    Generally this is the process you will go through on your first appointment. Your Guardian can ask on your behalf for copies of letters sent to your GP. You will get a further appointment for the results of tests etc. Sometimes these appointments will be sent through post,or you will be given it before you go home

    Please do not worry, it is a well trodden pathway to treatment

    Good luck

    BOB

  • A lot of what's on the net is based on what used to happen, not what happens now with the modern drugs. There was a big change about 10 years ago or so, and now the future is much, much more positive. There are still some people who have a really dreadful time, but this is only a small percentage of people. Most of us do ok.

    When I was first diagnosed I basically thought that my life would be ruined, and I scared myself witless with reading stuff. I was nearly bed bound by then and had trouble getting across the flat let alone going out. It took a long while, about a year, but now I'm about 95% normal again and have been mostly stable for years. I have to take a bit of care about what I do, and look after myself more than I did, and get used to taking lots of pills and injections. But it's really ok. In fact, if it wasn't for the RA I'm probably healthier than I've ever been!

    just make sure that you ask the rheumy about everything that's worrying you, maybe write down all your questions in advance. And make it clear that you want to work with them to get back to normal. It's a two way thing so you have to try to help yourself as well as learning to deal with the treatment. So try not to waste energy fretting, and save it for better things.

  • Can't say better than above, we all feel frightened at first, but have faith you will find the right treatment in time!

    Meantime we are here if you need friends

    Luv M x

  • Now young lady there is a life with RA,not the life you imagined or wanted,but it is yours to do as you see fit. This is going to be hard very hard. I am not going to sugar coat it for you. When you get your meds sorted out you will get relief. You can let it get the better of you or you can say bugger it i am not going to let it beat me. You can come on here and rant all you want and we will be here for you anytime you want. There are others on here better qualified than me about medicines and treatments,i will cheer you up anytime your feeling down and i will support you anyway i can. I hope you don't mind my post as i know new patients are scared of the future and what will happen to them. Love Sylvi.xxx

  • My dear, I think it is very important to go to your consultant with a list of ALL your fears and disconcerting feelings as he/she is the best person to explain things to you and to reassure you. There is a lot of very good medication now and scientists are working on even better ones to, hopefully,eventually a cure one day. Write your list down to take in with you as it is so easy forget things. I wish you well. I do hope you find this site helpful, encouraging and supportive xx

  • Hi,

    I was diagnosed at 19 (27 years ago) and indeed very frightening but you learn to live with it. I had always thought of it as 'an old person's illness' but many younger people are affected. Like others have said treatment nowadays is very different and a lot less deformaties are seen although on the other hand you look 'normal' so people assume you are OK. Everybody's 'journey' is different and what suits one will not suit another. Unfortunately it can take some time and changes of drugs to find one that will help and many of the drugs used have a long list of side effects but please do not let that put you off. It is a very long road with many bumps in it. Both NRAS and ARC websites have lots of information including drugs available. Bear in mind that people whose treatment is working are not as likely to post or write on the internet so you do not hear so much on the positive side. farm

  • Hello, the advice that the other people have given you is really good, and you will find this site such a support when you feel that no one can understand what you are going through. Know that every thought and feeling you are having at the moment are really normal reactions to working out how to deal with your diagnosis. I hope you have a friend or someone in your family who you can talk to and they will support you through this time. If you need to the nras site have volunteers you can talk to anytime, and they also have loads of information that can help you in understanding about treatments and what you might expect to happen at the moment. Tell your rheumatologist everything and if you have a good GP use them for support too. Also there may be a support group in your area where you can meet people going through the same things as you. remember you can write anything on this site no one will mind, there are some lovely people who know what you are going through. try not to look up too much info on the internet unless it is on a recognised site like this. it can be totally overwhelming and scary to read some of the stuff and confuses you further. Take care, keep posting how you are doing, and hang in there. xxxxxxxxxxxx

  • Hey!

    I know exactly how you're feeling I'm 21 and was diagnosed at 18. Its scary stuff. I found reading everything online pretty overwhelming, what I have found to work was writing everything down on a piece of paper ( questions, concerns etc) and taking in to the doctors office with you ( sounds a little lame I know!) But then before you leave quickly reading over it to make sure that all of your questions have been answered. I still feel overwhelmed at times but all of my worries have been addressed so its much easier to deal with

    Good luck! :)

  • Hi, I was diagnosed at 16. Exactly the same - RA and anaemia. What can I tell you? Well, I finished school, went to university, worked abroad, and have worked my way through a fairly successful career. Right after I finished my degree, I met my future husband. We married seven years ago and have two beautiful daughters. My point is, that RA won't stop you if you don't let it. I've had surgery once, to straighten my toes (wearing the wrong shoes didn't help!) and otherwise been managed by medication. I'm 35 now - so I've had RA more than half my life.

    Being curious is good. Ask lots of questions and try to made sure you have had them answered before you leave your appointment.

    I won't lie. You will have ups and downs, but the bigger picture is a good one. If you ever want to talk to me about life as a teenager with RA, please do.

  • You may want to check out phoenixhelix.com. She has RA and describes it and her approach in excellent detail. Try also thepaleomom.com, who looks at autoimmune disease more generally. She wrote a book recently called The Paleo Approach which looks at healing through diet, which you may find of interest. It gets quite scientific, explaining the functions of your immune system and different cells, but I like being able to know and understand my body so that I can work with it, rather than against it. For me, having RA means that sometimes I need to put myself first, and that's ok.

  • Hi and welcome to this site, I think everyone has said everything that is really helpful to you, and remember we are here even if you just want to moan or scream at someone, we have all been in your position and I know it is very scary at first, but always take someone with you to your appointments as 2 pairs of ears are better than one ;-) and write everything down you want to ask before you go. If you get in touch with NRAS they will tell you if there are group meetings in your area.

    Good luck with your appointment and do keep in touch.

    Sending you gentle hugs Wendy xx

  • I think there are a few younger people on this forum, at least one has recently started at uni, so I hope your post will alert them as I suppose there are different issues you're grappling with. I've noticed that there is a big emphasis on how to deal with younger people newly diagnosed and to get them on to the latest biological meds as soon as possible. The idea is that they treat your RA aggressively (I hope they're not aggressive to you!) in the hope that the meds get you quickly into remission. The new meds can make a huge difference and although the list of side effects can be scary, they do monitor you carefully and will take you off them if they seem to be doing something they're not entitled to. So for instance I was on meds that were affecting my liver, I was taken off and liver seems to be much better.

    If you're worrying about the appointment with the rheumatologist (I usually am) I'd make a little list of what I want to discuss. They may not have as much time to spend with you as you'd like, but there's usually an expert nurse who will help. It may be helpful to bring someone with you to the appointment who will sit quietly and take notes. They may need to be asked in advance not to distract attention from you !

    I can't think of much else but dont hesitate to ask us all about anything that's bothering you. I should say that I'm really sure that they will get you back to good health. I really hope so too!

    PS. I've used the NRAS helpline (email usually) and they're so helpful!

  • Hi, I,ve jumped in here as I was treated as Cathy mentioned, agressively treated and now 3 years in NO damage and life pretty much back to normal :) I did the same as you when waiting for first consultant appointment, everything I read was doom and gloom (I hadn,t found this site at thAt time) take care and let us know how you get on x

  • Good to hear about your good treatment.

  • my heart really does go out to you having to deal with this disease at such a young age. i am much older than you but i was only diagnosed 3 years ago. i would be lying to you if i told you that i didn't have a rough time because i did. that was due to my not tolerating a lot of the really very effective drugs that are available today. i have now been put on a drug, that i inject every thursday, and it has turned my life around. other than a very slight limp i look perfectly normal. at one time i was on 30 tablets a day......i am now on 8! my life is normal again. i can do all the things i could do before my diagnosis. i may be a wee bit slower in my walking. i may not be able to reach or lift heaving things but i have learned to find ways around these very small differences to my life. the drugs that are on the go now are truly fabulous. the right treatment will be found for you too and you will go on with your life as others do. so please don't be too down hearted. it may take a wee while to get the drugs that suit you but you will and you will be fine. just keep looking forward and moan and cry as much as you need to on this site. we have all been where you are now. all the very best darlin and stay in touch. XXX

  • I went to a meeting a couple of months ago and the rheumatologist there was talking about how they now treat RA in the early stages clinics. They give you a lot of drugs to start with to try and stop it from progressing and then they gradually reduce the amount of drugs. He said that they were getting positive results with this treatment as long as they catch it early. I was diagnosed in 2008 and then it was pain killers, 6 months later another drug, six months later oh that's not working try another...............so much better treatment now. Take someone with you when you go as it can be a lot to remember and if you like me you will leave your brain at home and not remember anything, also look on the NRAS website, the people who answer the helpline are very good if you have any questions.

  • Hey kid. Don't despair. They'll fix you. My RA is now in remission on a new biological called Tocilizumab (RoActemra) Also methotrexate. Don't be scared of methotrexate. It can be a life saver and most people get no side effects. I was on max dose and didn't get any. Whatever happens you'll be monitored and if there's anything going wrong it will show up. It's one of the safest drugs around provided you're monitored. It won't suddenly kill you, the dose is tiny compared to cancer patients get. It was beginning to wear off for me so they put me on this new one as part of a trial to taper down MTX (methotrexate) Now my ESR and CRP (Blood inflammation markers) are 1 and 2 which is the minimum and no swelling or stiffness so my joints will not be further damaged. I lead a normal life and just take the occasional painkiller like paracetamol for aches and pains. You're only young, when you're my age this condition will be history what with all the new research going on. You'll be okay believe it.

  • Hey just wanted to say. You will be fine don't disrepair once your started on the write drugs for you, You will be able to live your life well.

    Any time you want to rant on here you will always be supported. Best wishes from me xxx

  • Hi sweetie. Not much I can add to all the excellent advice above except that you will find at times you feel as if all you do is come on here and moan or rant or ask endless questions. I just want to assure you that that is absolutely fine - nobody will mind, nobody will judge you and everybody will understand. We've all been there and we all return there from time to time. Before you know it, you'll have positive news to share and you'll find yourself supporting other people. It's a wonderful forum and I, for one, would probably have been carted off to the funny farm without it xx

  • Thank you all for your caring advice and support! You wouldn't believe how much better I feel and how more confident I am in my future, long term and short term. Appreciating all of the above!!! XX

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