New to this!

alisunny

New to This - Thats both the forum and relatively new to the disease as well!
Hi Im Ali and was diagnoised with RA 11months ago.
I have been researching and reading etc etc but am struggling to find information on how to deal with arthritis, (I am not doing that so well,) at a young(ish!) age. I am 28.
I found out about courses 'Challenging your Condition', which sounds good, but unfortantely there isn't one near me!
So I thought i would join dicussions on here in the hope to meet people around my age who also have this. Or infact just to meet anyone with arthritis would be useful!
Any advice on how to improve things? I am forunate enough that methotraxte injections are finally beginning to kick in! And i am now beginning to do more, trying to swim and shift weight etc. However I am at the stage where I just seem to get angry that I cant do what I did previously....how do I get past that?!?

earthspirit

hi ali welcome! im a week older than you on the forum and have very severe aggressive RA which i had since childhood but never diagnosed until last year.

it IS very difficult to deal with the limitations on your mobility but hopefully if methotrexate is working for you now, your condition might just go into remissions and you will regain some of what you have lost.

i too struggle with the severe limitations but having dealt with a lot of pain over the years i would say you find ways to adapt. keeping strong physically when you are not flaring is the best possible method, along with a healthy diet and if you smoke snub them out. ( i am a long time smoker)

i think diet can play a large part in helping you feel better and although no foods perhaps make your condition worse, it is worthwhile keeping note of anything that may aggravate you condition.

i have gone a lifetime with this disease, im now 52 and before diagnosis used many alternative therapies to deal with flares and pain. they worked.

you are fortunate the treatment is working as this hopefully will prevent joint damage if you were going to be prone to this ( i am bad but very little bone damage as a result)

i was a long distance swimmer and this kept me fit and the flares to a minimum and i also have done yoga as a daily event. my fitness probably stopped me getting the diagnosis but i was able to deal with the modifications to my life with rest, ice and cold cloths

there is a good chance at your age that you will go into remission and may only suffer flares when you overdo things or i had it a few months after each of my children.

your disease might be on a different pathway than mine but my life has not been bad despite this disease being untreated. the only thing i would possibly have changed is the fact that i smoke.

good luck and hopefully you get some more replies when the forum regulars come along

stickywicket

Hello Ali. Welcome from me too. I think you'll find we're a friendly lot and, between us, know a fair bit about arthritis - in fact we'd rather we knew less :roll: I have to go right now but I'll pop on later.

dreamdaisy

It's lovely to meet you and I am glad you have found us. I am starting my sixteenth year of inflammatory arthritis which has led to OA and I am reminded daily about the things I cannot do (mostly by people who post on here ) but hey-ho, it matters not. All of us are compromised in one way or another and adjusting to it is not easy, far from it. The good thing for you is that you appear to have had a quick diagnosis and that the meth is doing something, and good for you for doing the exercising etc but it is important to learn the severe art of pacing oneself. I found it best (and still do) to stop when I think I can do more, OK after fifteen years the what I can do and length of time doing it has shrunk over time but I still follow the principle.

It is also important to listen to your body. Tiredness is a factor of arthritis and it is vital to rest whenever you can, if you need an afternoon nap then have one and don't feel guilty about it. It is part-and-parcel of the disease but possibly hard for those around you to understand. I tend to look reasonably well but the fatigue can be so debilitating.

Right, my hands are troubling me so I have to go for the time being. Take care and please keep in touch. DD

frogmorton

Hi Ali

You are so welcome here and I am glad you found us

when this first happened to me I too struggled with the realisation that I was not as I was before...in fact i bawled my eyes out for at least 7 days :oops:

Whatever age you get this it is terrible, but I know it can strike at any age - we have children with it whose parents' post on here.

I think that part of the problem for me was that I had a plan....and this was not in it! However time, talking (on here is excellent as it saves our loved ones from having to listen to us :oops: ) and getting reliable information helps enormously. (here is good safe info)

For me knowledge is power and the unknown is frightening. I have done a challenge your pain course (was on the list for 2 years) and it was a great help Find your nearest area and suggest one on the AC map.

There is life after diagnosis (you know that already), mine is not the same, a little different but pretty well ok

Love

Toni xxx

PS I swim 2xs a week and WALK on a treadmill at least another 2xs when possible.

phoenixoxo

Hi Ali,

A warm welcome from me too. As the above posts show, you've found a friendly place here with a lot of care and support

I'm 33 and I was diagnosed with PsA at age 12. It's been a rocky road for many reasons and I remember well the anger you're feeling right now. For ages I fought against my body, pushing it to the limit in my determination to stay in control. Eventually I ended up in hospital in 2006 in need of some serious rehab! When I emerged, my rheumatologist arranged for me to see a therapist to talk through a few things, and this was especially useful for me as I'd never felt able to discuss my illness openly with friends or, particularly, family. The experience enabled me to come to terms with my physical limitations, and a burden lifted.

It's wonderful that methotrexate is working for you and I hope it continues to help

Best wishes,
Phoebe

stickywicket

Don't be too hard on yourself, Ali. Life is changing but not all for the bad. Yes, there's stuff you can no longer do, or no longer do as well or for as long as before. However, there's still lots you can do that you may not have considered when you were charging about being busy. Acceptance is an ongoing thing and we all rail against the disease at times and push our luck with it. (It's called living )

It's harder when you're young and you can't keep up with your contemporaries but you'll learn to deal with it. Years ago, a friend of mine wrote a book called Arthritis, at Your Age? She was updating it and putting it on line when she died. I know her brother planned to get the rest on line. It might be helpful. Her name was Jill Holroyd.

nikkib007

Hi welcome to the gang, I am 28 and havent been on here long, but in the time I have been I have found it a huge support and it has helped me loads to get my head around having arthritis

Keep chating to us - it does really help

Take care

Nikki
xx

alisunny

Hi
Thanks for the advice. Its nice to talk to people who know and understand, rather than sound like i am just moaning to friends and family. I am also so rubbish at actually talking to them and being honest rather than jsut constantly saying 'im fine'!

I think what gets to me right now is the swings and roundabouts of the disease., the fact that I can feel okay, but then my the end of the day be in pain once more. It took nearly a year to find the med combination that is working, which is awesome, but my doctor always gave the impression that once the correct meds were found, i would be 'fine', in the sense that i could go about everyday not knowing i had the disease. That hasn't exactly happened. And i think that that has thrown me over the edge so to speak. I thought I was handling everything so well, but maybe constantly thinking it's all going to be fine. And now I have got to the stage that the meds have kicked in, and yet i am still in pain, and still shattered and although I can do so much more than I could a year ago, I can't do things as I could do before. And that is what I can't get over. Nothing is the same, and won't be the same and I don't like that! I can't quite get over that. Like I said, I am walking and doing so much better than I was so I should be feeling fine and positive. I don't know what I should be feeling. This is so hard

Ok, i just feel like I am blabbering on and not making any sense at all....

I think that I never did the whole anger, upset etc when I was first diagnoised, I was jsut pleased that someone could tell me what it was and help make it better.....I seem to be hit now by all these feelings as some sort of massive delayed reaction and I am just finding that a bit hard at the mo..

Ali

devonann

Dont be hard on yourself I think we all have to change but that doesnt mean we dont want to do things we used to and sometimes try.pace yourself and if going out with friends in the evening try to rest during the day and take your meds when they will be most effective.I have had OA for 15 years along with Myopathy and Post polio syndrome.Enlarge on the things you CAN do and reduce the others.

valval

i remember that feeling when they say yes you have something wrong as had convinced myself they were going to say it all in your head even though i knew it was not. but you have to work your way through so many feelings the people on here will suport you let you scream and shout if you need it what we do best some one has nearly always been there so understands it hard for some one who has not had it to understand how one moment you feel ok the next it as if some one stuck a masive needle in and sucked all your energy out, the meds take months to work fully then we all differ in how much they help as we all differ in how arthiritis affects us stay strong forgive the fools you will meet along the way but enjoy life it is not over just starting a new faze val

bubbadog

Hi Ali just wanted to say hi and welcome to the forum, hope you find it useful and informative as well as fun!

alisunny

Thanks guys
the whole dont be too hard on yourself thing I find so difficult - spent most of the evening beating myself up as i have felt completely shattered today and felt i haven't really done much at work or achieved much......
aaaahhhhhh
it just seems so complicated!!
x

stickywicket

The fact that things are better than they were before the meds got to work doesn't nullify the fact that they are still worse than when you didn't have arthritis. You have lost a chunk of your old life and it has to be properly 'mourned'. You'll get there.

barbara12

Hi Ali
And a warm welcome from me, I cant really add anything to what the others have said, but you just talking to people that understand will help enormously, we are all so different depending on what kind of Arthur we have, and how our treatment is going, but what we can do is support one another.
I do wish you well with everything, and you will get there xx

tjt6768

hi hun. Welcome from me too.. I hope that today has been a good one and tomorrow will be even better..
It's ok to be angry, I've had OA in the knees for about thirty yrs now, I'm 44 and I still get very pee'd off about it..
Thing is, us lot on here will always be here for each other as we understand like nobody else ever can..
So, keep posting mi dear and welcome to the family of Arthurites
Be well