Hello from a newbie (and a bit of a rant!)

auntie · 11. Jul 2009, 18:53

Hi

I'm very new to this site and wanted to introduce myself as I'm really happy to have found somewhere where I can talk and get things off my chest to other people who understand exactly what I'm going through and maybe get some emotional support! I'm 21 years old, and began having problems (swelling, difficulty movement but no pain) in my knee at the beginning of 2008. I had the joint drained and steroid injections and it seemed to go away for a few months. But then in Nov 2008 the swelling came back with a vengeance accompanied by pain that hadn't been there before, and after a few months it had spread to both knees. My GP referred me to rheumatology who diagnosed me with sero-negative arthritis but for a long time I just found it too difficult to accept and kept thinking that it might just go away - the pain and difficulty walking had peaked around Feb/March this year while I was seriously studying hard during my final year at uni. My dad has psoriatic arthritis which he says is made worse by stress and I assumed that it was all the stress of studying which was making my knees worse and naively thought it would clear up once I'd finished my finals. Now though I have been trying to face up to the fact that it is not just going to disappear and I have to learn to manage it which so far has been really hard as none of the anti-inflammatories or pain relief I've been on has worked very well. I've had sulfasalazine but had to come off it because of low white cell count, and have just been prescribed methotrexate but haven't started taking it yet. It's all quite a lot to take in and I feel a bit overwhelmed sometimes. Not to mention suddenly being so different from everyone around you your age - having trouble even just walking is something really hard to have to get used to. I make myself miserable sometimes by wondering if I'll ever be able to run/jump/kneel down/play sports again. Keeping positive about it is sometimes the hardest thing - does anyone have any advice on this front?!

Sorry for the long ramble!

lindah · 12. Jul 2009, 14:43

Hello and welcome to the site from a wrinklie with o/a/
Can't really help with practical advice but just to let you know that support on here is great.Try the other forums too and there is always the helpline.
Sometimes the acceptance is very hard,even at my age but with the right meds and an exercise programme I am beginning to get a life back.
Hope someone is along soon to offer practical help but in the meantime come on and moan,celebrate,seek advice or even have a laugh with your understanding mates.
Linda H 8)

auntie · 13. Jul 2009, 14:38

Thanks so much for your comments, it's good just even to know there are people out there who know and understand, it's like a safety net to go out and face the world with! I'm just getting started on the road of finding the right meds/excercise programme/therapy but I hope yours carries on working out for you and things get easier to cope with.

xxx

scattered · 13. Jul 2009, 15:55

Hi,

I was dx'd when I was 19 and 2 weeks into in my first year at uni. I've just graduated so I can definately related with the struggles you're having. I have RA pretty much everywhere, knees included.

For the last 6 months I've been in a medication induced remission so there is hope! Getting your meds combo sorted will make a big difference as will having a good rheumatology team. You need to educate yourself about your disease and learn everything you can about living with it and managing it. You can still do everything you want to, you just have to adjust how you get there a little.

In terms of meds, over the last 3 years I've been on (at various times, in order of starting) methotrexate; sulfasalazine and leflunomide. When I started leflunomide I also started hydroxychloroquine, which I'm still on. I'm also currently taking adalimumab (Humira) and azathioprine. I have been on steroids since before I was diagnosed. This combination is what put me into remission. Unfortunately I'm currently experiencing a very bad flare up (due to stress), so I'm having a Depo-Medrol injection on Weds. and a medication tweak later this month. I use anti-inflammatories and painkillers as needed.

You have arthritis for lifwe, but it needn't be a life sentence. Denying it is not going to make it go away. In order to live your life you need to find a way of working with the disease. Good luck.

jceaton · 16. Jul 2009, 10:29

auntie wrote:

Hi I'm very new to this site and wanted to introduce myself as I'm really happy to have found somewhere where I can talk and get things off my chest to other people who understand exactly what I'm going through and maybe get some emotional support! I'm 21 years old, and began having problems (swelling, difficulty movement but no pain) in my knee at the beginning of 2008. I had the joint drained and steroid injections and it seemed to go away for a few months. But then in Nov 2008 the swelling came back with a vengeance accompanied by pain that hadn't been there before, and after a few months it had spread to both knees. My GP referred me to rheumatology who diagnosed me with sero-negative arthritis but for a long time I just found it too difficult to accept and kept thinking that it might just go away - the pain and difficulty walking had peaked around Feb/March this year while I was seriously studying hard during my final year at uni. My dad has psoriatic arthritis which he says is made worse by stress and I assumed that it was all the stress of studying which was making my knees worse and naively thought it would clear up once I'd finished my finals. Now though I have been trying to face up to the fact that it is not just going to disappear and I have to learn to manage it which so far has been really hard as none of the anti-inflammatories or pain relief I've been on has worked very well. I've had sulfasalazine but had to come off it because of low white cell count, and have just been prescribed methotrexate but haven't started taking it yet. It's all quite a lot to take in and I feel a bit overwhelmed sometimes. Not to mention suddenly being so different from everyone around you your age - having trouble even just walking is something really hard to have to get used to. I make myself miserable sometimes by wondering if I'll ever be able to run/jump/kneel down/play sports again. Keeping positive about it is sometimes the hardest thing - does anyone have any advice on this front?!

Sorry for the long ramble!

I'm 25 and was diagnosed with Psoriatic Arthritis at 20/21. I was lucky in that my pain really wasn't too severe for the first couple of years. But then it really hit me and everything was hardwork. In the last couple of years I've really struggled to accept my limitations and it really is hard to stay positive. I had quite a few occasions where I would just break down and feel completely useless!! I am fortunate that I have a very supportive boyfriend and family. (My Mum still accompanies me on every hospital visit). I've been taking sulphasalazine since March and although it has taken a while it seems to be working. I saw my consultant on Monday who seems really pleased. My bloods show my inflammation levels have dropped right down and I'm finding everything much easier.

Being young, lots of people really don't understand. (For example, the looks you get if you have a seat on the bus and there are others standing!!). But try and keep your chin up. There will always be good days and bad days. But there are always people on this site available for a rant when you need it!!

auntie · 19. Jul 2009, 18:07

Hi jceaton! thank you - I do feel better after the rant! And I know what you mean about the bus situation, very frustrating! I'm glad things seem to be looking up for you at the moment and hope the good phase lasts. I think I've moved on from denial and am sort of in the process of discovering what my limitations are - not easy as you say and at times quite upsetting and frustrating.... nevertheless we all soldier on as best we can!

Hello from a newbie (and a bit of a rant!)

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