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Date: 16.01.2010
From: jen

Subject: sad newbie

hi guys, new here. ive had RA-like symptoms for about 6 weeks (a few swollen fingers, aches in feet), waiting to see rheumatologist for diagnosis/treatment.

my question is, my GP keeps saying to me that my symptoms are mild and that i'll be ok and that treatments are good and work for many.

well from reading forums, it seems that treatments don't seem to work for anyone!!! everyone seems in pain and unable to live their life like before. or is it that people who ARE fine don't feel the need to write about it? i don't know what to think, i think GP is just lying to me. im just depressed and think there's no hope for my future. i'm 23.
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Date: 16.01.2010
From: KayJay

Subject: Re: sad newbie

Hi Jen. So sorry to read your post but don't despair there will be help for you when you go to the Rhuematologist. Hoping someone else here can come along who is in/has been in the same position as you. I'm an oldie on here [ compared to you I'm 55 ] but I've got 2 daughters around your age. Don't be sad luv :0)
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Date: 16.01.2010
From: Lynn B

Subject: Re: sad newbie

Hi jen please dont be sad wait till you see rhuemy everyone is different, everyone needs somthing different wait and see wat they say, you are far to young to think theres no hope.As Kayjay said please dont be sad xxx
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Date: 16.01.2010
From: Amelia

Subject: Re: sad newbie

Hiya Jen,

I was diagonised with RA when i was 23 i'm 26 now... it's alot to come to terms with and i was in denial about it for so long it's only been the last year that i have started to look after my self!!! There is some good meds about for RA but with alot of them it's all trial and error.

I was the same i didn't even want to get out of bed some mornings i had just brought my first house and had two kids who were under 5 and i was sooo miserable, But with help from my bf and family i got my act together and i feel like me now things will never be the same again but you adapt to having RA and to what you can and can't do i have gone back to college this year and things are really good for me at the mo, we all have good days and bad days and i think your right we do tend to come on this forum to share our bad days more as it's easier to share it with strangers than to keep moaning at our close ones and people on here understand it more and can sympathise with it more.

I hope things work out for you and you can get the right meds etc... but if you ever need advice or info this is the place to look.

(((((((HUGS)))))))) Amelia x
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Date: 17.01.2010
From: sandra lowe

Subject: Re: sad newbie

hi jen i was 21 when i was diagnoised with RA and im 54 now, yes you do have bad days but i always hoped i would have better days, there are so many better meds now so dont give up yet or be sad (that actually can cause flare ups, thats what i found anyway)I suffered alone for years with no one to talk to so this is where you can GIVE OUT,MOAN,CRY, or ask questions and everyone will try and help. xxxxx
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Date: 18.01.2010
From: Angela

Subject: Re: sad newbie

Everything Amelia says is spot on, and also some people on here have had these conditions a long time, and some received the right medications later on in their diseases so damage was done.
On the other hand we have had posts on here where some have taken their health into their own hands naturally and feel much better.
Your advantage is that your GP says your symptoms are mild but he is still onto it early,and has referred you, and once you do see your rhummy, he will hopefully find you the right medications, and this will protect you, if you chose to go down that route that is.
I honestly felt just the same as you at the beginning and I bet many more of us did to.
I was in an awful state 2 years ago when I started with RA,but my GP caught me quick to, and today I still have no damage, I have no bad side effects from the MTX and sulfasalizine that I take.
I dont need painkillers or anti inflammatories anymore.I have plenty of energy.
I dont live the life I did, I try and stay as stress free as possible,because like Sandra says stress can cause flare ups.
Hopefully this will help you feel a bit better about your situation/
Take Care
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Date: 18.01.2010
From: Dennis

Subject: Re: sad newbie

Hi Jen,
Read my yarn under the personal stories section re my experience with R.A and beating it.It can be done with the right attitude and determination.Good luck,Dennis.
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Date: 18.01.2010
From: Jen

Subject: Re: sad newbie

hey all,
thank you so much for the replies, they have given me some hope!
I know I will have to make some changes in my lifestyle, maybe less stress would be a good thing. I dont know, since all this started Ive found Im not getting stressed about 'little things' that used to worry me at work, it's like I've realised how lucky I used to be. Now if only I can stop stressing about RA...
I know the rheumy will try to help and there's ways I can help myself too, but I just need to get my head sorted first and stop all the crying. Someone said to me 'try not to think about it, if you're not in pain, just put it to the back of your mind.' Any ideas on how to do that???? Seriously it's ALL i can think about.
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Date: 18.01.2010
From: sandra lowe

Subject: Re: sad newbie

hi jen its some thing you learn to live with, i have got now that you get on with life not thinking of the pain, focus on the positive things, and what you can do and not what you cant.I tried to keep happy and didnt cry in front of my children so they wernt effected by my RA, so try and not be thinking of it, take care xx
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Date: 18.01.2010
From: Verity

Subject: Re: sad newbie

Hi Jen!
I can only agree strongly with what everyone else has said. Everyones situations and conditions are different. You'll learn to adapt in your own way. Im only 24 and just try not to let it get me down. Concentrate on the positives : )
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Date: 20.01.2010
From: Shelzy

Subject: Re: sad newbie

Hi Jen

I'm 32 and was diagnosed with Rheumatoid Arthritis just before xmas and was started on methotrexate at that point. Since I have been taking the meds I have seen such an improvement in my condition, my pain was mainly in my feet where my ankles were so swollen and getting around and up and down stairs was so painful it hindered everyday life for me. I have two young sons 8 and 3 and was really struggling. I was so weepy at first when I was diagnosed for sure (i have had these problems for a year prior to this date and was misdiagnosed as having morton's neuromas in my feet!) I felt like my world had ended, why me? I'm too young? I'm going to get worse and maybe totally crippled soon? is how I felt and my other half was not particularly supportive so felt all alone. This lasted for about 2 weeks and since coming on here and seeing other peoples responses and comments etc and maybe trying to put things in perspective and think yes I'm ok I'm getting better walking about better I seem to be ok at the moment. There are worse things in life and someone else is always worse off than yourself I believe and I am so lucky to have two lovely healthy boys and have to continue and try and do everything I do for them x I am sure you will soon start to feel better once you have seen the rheumatologists and maybe started on treatment. It is very hard to think of something else and not stress about it but believe me that makes it worse I am sure when you stress about things

I'm here if you ever need to ask any questions or need to chat

Shelx
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Date: 20.01.2010
From: Verity

Subject: Re: sad newbie

Hi Shelzy, glad youre feeling better from being on the MTX. It can work wonders for some people. Also really good that you caught it fairly early. I have trouble with my other half understanding the emotional side of it but I just keep insisting that he listens : ) He's starting to get the hang of it now. Have you suggested he comes on this forum to have a little look at how it affects people etc?
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Date: 20.01.2010
From: Jen

Subject: Re: sad newbie

Thanks for the replies again guys, Im not sure I'm making any progress though.

I dont know, I guess I'm just really selfish or weak or something but I can only feel sorry for myself and I just want to scream and shout at the horrible unfairness of it all.

Maybe it's because I don't have kids or a partner or anything like that to keep me going. I feel really alone. I just want my normal, painless, disease free life back and I know I'll never really get it again and, oh, here we go.. crying again.
For gods sake. I'm a total loser.:(
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Date: 20.01.2010
From: KayJay

Subject: Re: sad newbie

No No No Jen you are NOT a loser. You are allowed to cry you know ;0) you are only very young to have to cope with this. Have you got a sympathetic GP ? Don't ever suffer in silence just tell them how you REALLY feel. One day it will not seem so bad - I promise. Lots of hugs KXX
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Date: 21.01.2010
From: Verity

Subject: Re: sad newbie

Hey Jen, dont feel guilty about crying! I cry an awful lot. Sometimes things just needs to be done and if the only way I can do it is by crying during then thats what I do. It lets me get angry and release frustrations whilst doing stuff. I find mornings the worst, but once Im up, dressed and sorted I can get myself together and then be strong for the rest of the day.
Do you get much support from parents or siblings?
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Date: 21.01.2010
From: Angela

Subject: Re: sad newbie

Thinking about you Jen.I know how you feel. In time things will feel better you watch.
Take Care ((hug))xx
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Date: 22.01.2010
From: Jen

Subject: Re: sad newbie

Kayjay, I'm not sure about my GP. I'd never needed to go see him before, since I moved to the area. He seems ok, I mean he did a blood test and referred me so he is taking me seriously but at the same time he's an older man, doesn't say much. He has kind eyes and a gentle manner, but I never feel like I can 'say' much to him, even if I just make small talk he only just kinda nods and I feel stupid going on.

Verity, I'm an only child and my mum's a single parent. I've always been really ambitious and independent because i've wanted to make sure I can help her financially and stuff when she gets old. Now it seems it might turn out to be the other way around. Ha ha..

But no, enough moaning. Thank you so much for the kind words, I was having a really bad night when I did the last post. I feel not so bad today. I guess it'll just be a long road of ups and downs, emotionally as well as physically.
Hope you all have a nice weekend ahead x
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Date: 23.01.2010
From: KayJay

Subject: Re: sad newbie

Hey Jen glad to hear you are feeling a bit better!

My daughter is just the same trying to keep everyone happy - you can't do it all - she has had to give up her Phd becuase of illness and she's devastated as she feels all her hard work and studying has come to nothing.

Re your GP - is there another one you could ask for in the same practice - who is younger than your present one ? just a thought ;0) keep feeling positive [ if poss ] xx
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Date: 24.01.2010
From: Rob Jones

Subject: Re: sad newbie

Hi Jen,

I think Dennis's reply is spot on. You can do anything (within reason) with the right attitude and determination.

I've had arthritis since I was 14, I'm 28 now. I didn't do PE or games through school because of the pain, I became a chubby kid and got bullied because of it. I felt really low and alone at that time.

14 years later, my medication seems to be working fine but I needed a change in lifestyle (the right excercise and diet) for me to manage it. I have my bad days like everyone else but I'm a completely different person that the boy I was when I was first diagnosed - for the better.

Remember - attitude and determination!

Rob
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Date: 29.01.2010
From: Kirsty

Subject: Re: sad newbie

Hey Jen, I no you have had loads of replies but felt compelled to right a reply as you sound exactly like i did 3yrs ago wen i first got ra. (I am currently up at this ungodly hr as cant slp due to the pain but feel this is doin something constructive in helping other people!!!) Im 24 now and was diagnosed 3yrs ago i am a vet student with a really demanding course and job ahead of you. In the first year my ra ran wild and iw as crippled in pain, hardly slept and couldnt get myself dressed v.depressing and embarassing for a independant 21yr old!!! I cried all the time and felt like i was in the bottom of a black hole with no light at the end of the tunnel. Since then i have been through gud and bad periods intially uni were unsupportive and thought it wasnt suitable for me to carry on being a vet but i think i have now proved them otherwise having passed all my exmas although spending time at the hospital and not being able to study and also completed all my vet placememtns with great feedback.

Please try and be positive and dont worry i am a right little stress head but it directly affects my RA making it worse. I now try reaslly hard if im upset worried to have a quick chat/cry to someone and then forget it i also find writing my worried down stops them goin over in my head.

When i first tried arhtritis chat rooms 3yrs ago when i was down i found them the most awful depressive place as it is true most people tend to use them wen they are down - ithen refused to go on them for 2 yrs but recently found this one which is great and there is a really suppotrive community on here.

In terms of drugs there are lots of drugs out there and more n more advanced ones being developed. The problem is differnt combinations work for different people and u normally have to try them for 6 mo at least to no wether they will have effect in the mean time you are lef tot struggle on a bit. I have found a combinatin that worked for me initially although have now become allergic to that and am having to wait tand then try new ones.

But remember you can achieve anything you want to achieve - be positive i defeated staff at the vet sch and will prove them wrong no matter what my ra throws at me, I have also continued to play rugby through sheer determination and get a positive buzz from achieving ti everytime i go.

I hope this long ramble helps you and please let me no how your gettingon.
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Date: 30.01.2010
From: jen

Subject: Re: sad newbie

Rob, I'm really glad you've found a way to manage your RA. I've been giving a lot of though to changing my diet (alongside drugs) but Im feeling too crappy right now, and trying to build up the strenght to sort it out.

kirsty, thanks for sharing your story. im so in awe of your determination to keep going with your course and play rugby. i so hope you find the right combo of drugs for you soon. and for myself, i hope i can develop your inner strenght to fight on. i still cycle every day, i dont want to give that up, i love it. my knees crack but hey.lol i also love my job. i love my life, actually. if i had a crappy life that i hated then maybe i wouldnt mind having RA so much, less to lose! grrrrrr. that's a good idea to write worries and stuff down, i might try that.

but i am ok today, i went to a gig and have had a few pints, so felt a bit like a normal person. :) and it's the weekend. take it easy. xx
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Date: 30.01.2010
From: KayJay

Subject: Re: sad newbie

Hey Jen glad to hear you enjoyed the gig - you have a great weekend xx
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Date: 31.01.2010
From: Jill

Subject: Re: sad newbie

Hi Jen, had to make a comment too, altho the ones u got are spot on, over the years i have found being positive(once u r on the correct meds) will help u so much...The great thing is, your R.A. has been caught sooooo early, once they begin u on the correct meds, probably Methtrexate, takes a while to kick in, but once u get that into your system, trust me, damage will be limilted ,possibly nowt at all...i unfortunately got my meds far too late in life,so i didnt benefit until recently, well last few years, i now have less flare ups, and if ŽI do get one, doesnt last as long as b4 the meds, I take Methtrexate, and anti tnf Med called Enbrel....that is amazing for me.....I also have other complications , so I personally have stuggled.....I have been coming on this great forum for a year or so now, read a lot of posts, and i have learnt so much....it seems that people that get the meds early on, do amazzzzzzzzzzzzing!! trust me, trust us....we r a great bunch, proud to say that, everyone is so loving and helpful, u will always get a reply of comfort, u will also learn a lots about the R.A.....but also remember, if someone is struggling, PLEASE do not think that U will also...it is not the case....some peeps have it worwe than others, for one reason or another, or maybe becos we r all different bodies, some can take methtrexate, others struggle with it, some have side afflects, but others dont, so all in all, its Positive that u will get your treatment right? and u will get the right one for u....Rhumatologists take this disease very seriously, U will get the support U need.......I also want to mention, oncve u have your officially diagnosis, please consider claiming for DLA...Disiability Living allowance,maybe other have told u about this, I havnt read all the posts as ive been unwell for a few weeks, but im back, and like the others will support u in anyway that i can.....maybe u know about the be nefit that u r entitled to...there is a huge posting on that around about November time...so much info there, u will learn lots from that.....take care, for now, as hard as it is, stay pos ok, take one day at a time, and attitude and determination like Dennis said is so true, however, U r entitled to feel sad, I still do at times ok, I also get angry and ive had this rotten problem since i was 26, I am now 49, with 5 kids, not all the years were tough ok....these days, so much is and can be done, unlike when i was your age...Verity has been thru so much, shes young like u too, however, dont think age has anything to do with it, as Pain is pain, and blimey we all know what that feels like in this forum, glad u found us all.....take care lots love Jill x
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Date: 01.02.2010
From: Kirsty

Subject: Re: sad newbie

:-) :-) Glad you had a good day and got to go to the gig - thats a great achievement and thats how you have to think about every little thing you can achieve. I also understand wat u are saying - If i have a bad day and then happen to see a person i no who is very lazy/doesnt work hard/or have any goals in life i always think god why cant they have it instead of me!!! But wen things settle down you will leanr to live with it my RA has made me stronger mentally lathough i was a mess at the beginning.
Lots more hugs Kirsty
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Date: 01.02.2010
From: jen

Subject: Re: sad newbie

wow, jill thanks for your post! bringing up 5 kids whilst having Ra, you must be a hero. that's one thing that's really been on my mind, not that I want kids anytime soon, and if you'd asked me 2 months ago i'd have laughed, but now that this has happened i realised having them might be a horribly painful/dangerous experience, as opposed to a happy one. which is really sad. but, that's ages away anyway no point in thinking about it now. but yeah thanks for your kind words, and the advice. from what ive read on the forum you've not been very well yourself lately, so i really hope you're feeling a bit better now!

today i got my appointment with the rheumatologist, which is in a couple of weeks. so hopefully they'll sort me out on some meds. i have some many questions as well, i hope the doctor's nice and actually human.

kirsty i know what you mean, i was with some friends the other day and one of them was moaning about how crap life is because he works in a call centre and can't live his dream of being a musician (*rolls eyes*) and i literaly snapped at him and was like 'no. life is not crap. you're not sick, seriously, listen to yourself.' and then i realised i shoudln't have said anything because it's not his fault im sick and i shouldnt make people feel guilty over it. but still, i couldnt help it. i wish my big problem was that i couldn't be a rock star.lol
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Date: 01.02.2010
From: Kirsty

Subject: Re: sad newbie

Ummm i have had similar thoughts. Just a quick tip i always think i have loads of questions for the consultant and then forget them when im there. So write them all down as you think of them over the next few weeks and then you can always cross off any you decide you dont want to ask or find the answers too before hand take your list of questions with you and atleasst then you wont come out thinking damn i wish i had asked that!!! I always take a list now!!

Also there may be loads of info for you to take in at your appointment and i was really glad i took my mum with me for support and to help me remember everything the consultant said!!! so maybe you have a friend/family member to go with you.

I have a slightly medical background with studying for a vet degree so i understand some of the medical terms but if you dont understand something they say dont be embaraased most people wont - say so and ask them to explain it - thats what they are there for.

Wishing you loads of luck and hope the appoint goes well

K
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Date: 02.02.2010
From: Jill

Subject: Re: sad newbie

Hi Jen...lol im a glutten for punishment....didnt have probs everyday, ive had some good years in between....but 2002 that was when my nhealth took a turn for the worse, infact, ive heard that lots women r fine during pregnancy, also yu r so young yet, had my first when 26, and altho it can be hard, its also sooooooooooooo rewarding....so please dont panick about what the future holds, once u get the correct meds for U, U will get some relief and these days they seem to get ppl on the corrects meds asap...unlike me, was years...also they Misdiagnosed me years ago....anyway, with regards your rockstar m8 LOL, Im like u in that sense, if someone I know has nooooooo reason to moan and whinge, I feel like saying shut the F**K up, how lucky u r etc...But I dont, cos it winds me up far tooo much........however, I will with a goood m8 explain that they have their health....but at the end of the day, until we r in this situation, its difficult for anyone to understand how much pain u r in....anyway, Welcome to our gang, its a goood forum and we do have a giggle....tc....Love Jill x
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