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Rank: Newbie  Groups: Registered
Joined: 11/16/2010 Posts: 6 Location: Crawley
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Hello,
I am Sharon and 25yrs old. I've been diagnosed with RA since last week... I still struggling to accept it because I like to be active... The forum seem a good place to be...
I am trying my best to understand myself.. I am feeling a bit irritating since the last 2 months... It's a bit confusing all the stuffs I am reading.... But I know with the help of you guys i'll be fine and im sure i will be educated how to deal with RA. Since the last 2 months I am feeling very tired all the time specially around noon... I keep falling asleep and in the evening im already in bed by 7 30pm.. this is not usual for me... seem like Im missing things when I sleep... I found myself sleeping a lot...like just dosing off i cant help it.. I feel so tired and exhausted even after 10 hours of sleep ... IS IT NORMAL?????? I feel like my ankles will break when i walk. and im feeling a bit weird with all the medications. feeling nauseous and stomach pain. Sometimes I feel i cant carry my body anymore....
the weather also is not helping.... I feel like many people are not aware of RA and they don't understand RA.... i myself wan't aware of RA... Everything is new to me..... I 'M so scared.
I just want to educate myself how to cope with RA.
Just need help..
Thanks in advance guys.
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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HI Sharon, I'm Lorna, I am 51 and have had RA for 3 years, I am married and have three grown up daughters, the youngest being 16. It was dire when I was first diagnosed almost every joint in my body was affected. I could not do anything. But I was diagnosed very quickly and have been on the triple therapy, and I am so much better, so it will get easier. Sorry you have RA and are only 25, I can understand how you are feeling, I was devastated. Glad you have found us on the forum, there is always someone to help answer your questions. The cold weather does cause joints to ache, so don't worry it's normal. Regards the sleeping your body must need the rest, I've slept up to 14 hours at times. Your body is healing when sleeping, so do not worry. Keep a diary and note things like that down and how the drugs affect you. What drugs are you on ? Hope they kick in soon and give you some relief. Take care, thinking about you. Lorna x 
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Sharon,
Welcome to the Forum you will find lots of advice and info on here. So sorry you have RA at
an early age though. Yes, you must be devasted and scared. Lots of input on here will help
and I hope you have a good Spec and have you been given an RA nurse yet ? (she is great)
I am Rose 56 from Somt diagnosed 2 yrs ago bujt still am not on correct medication.
Failed on 3 DMARD so now awaiting to go on TNF.
It is a horrid thing to be lumbered with but keep posting Sharon
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Sharon, and welcome to the forum, though I`m very sorry you`ve been diagnosed with RA. It`s quite natural to feel upset and anxious, and fatigue is a huge part of RA - things will begin to improve once you get the RA under control when your drugs kick in. The worst part is waiting for them to have some benefit, so try and be kind to yourself until then. Were you offered a steroid injection when you were diagnosed? If not, you may be able to ask for one to help until your meds get established. Keep posting, there`s lots of help on here. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sharon,
Welcome to the forum but sorry you have RA at such a young age. I always feel "lucky" that I didn't get it till I was 51.
It's only natural you are feeling scared and you are right, people do not understand RA, the only people who really understand it are those who have it, so you have come to the right place! You'll get lots of help and support on here.
Looking forward to getting to know you.
Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 51
Location: Blackburn, Lancashire
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Hi Sharon
My name is Lisa and I got RA 9 years ago when I was 33 in my shoulders, hands, hips, knees and feet. I always thought it was something older people got.
It will probably take you some time to come to terms with it and the limitations it causes . Looking back it took me about 12 months to fully come to terms with the changes it meant.
The key is gettng the right medication for you personally, to enable you to have the best possible quality of life. In the meantime you need to rest as much as you need to and pace yourself through the day.
I sincerely hope that you your RA team will soon be able to sort out the right medication for you.
Best wishes
Lisa
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi sharon, welcome to the forum but sorry you have RA. You'll get loads of support here and its a real godsend. The early days are sometimes the worst as you dont have a clue whats going on half the time! It will take time to come to terms with what you can and cant do and also for the medication to kick in. Do you have a good rheummy team? Hopefully they can guide you through.
Be kind to yourself and rest as much as you can.
Heather xxx
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Sharon,
I know where you are, I was diagnosed 3 weeks ago, waiting desperately for the drugs to kick in and can't get my head round it at all. I only have one pace, full throttle and some! Its very hard especially at your age but I found after my 'Hello' post that just knowing there are others out there who know what you're going through and are willing to share their experiences and advice is really comforting. So keep posting and hope you can work through it all and take control of your life again, that's what I'm trying to do, I'm really scared about the future as well because I'm self employed so no sick pay or pension scheme, its lucky I enjoy shopping in charity shops! Also being so tired all the time seems to be par for the course, I just carry on until I just have to sleep, I thought going to bed before 10.30 was illegal until now but when needs must.
Take care
Sara
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
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Hello Sharon and welcome- you must be feeling like your heads in a total spin right now! As you get your head round RA and your meds start to kick in, hopefully things will settle down for you. The frustrating thing is that it CAN take quite a while to get the right meds at the right dosage for you.. And sleep?----I could sleep for England!  YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Sharon,
so sorry you've been diagnosed at such a young age ... i was diagnosed in June aged 57 and to be honest i am still coming to terms with it.
fatigue is all to do with the condition.
what medication have you been given also did you have a steroid injection to help kick start you..?
i still don't know all the in's and out's of RA ... i prefer to learn as i go along as we are all different.
keep posting you will see you are not alone,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Sharon
A warm welcome to the forum and pleased you have found us as you will receive so much support and understanding. I am sorry to hear you are going through so much at the moment, once the RA gets under control your energy level will improve so much and of course all the worry and stress of recently being diagnosed adds to all the tiredness.
Keep us posted on how things are going for you, hopefully you will be a lot better very soon.
Julia xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Welcome Sharon
I am Jenni, now 34 having got RA when I was 20.
As the others have said, the fatigue is a real issue and with good treatment of the RA, fatigue is lessened.
One thing you ought to do is get a few appointments with occupational therapy and not only talk about joint preservation, but about energy conservation.
you need to pace yourself in a way you have not had to before.
when you are tired- rest (your body is not making it up!), but try not to sleep more than 40mins in the day and then set a bed time (say 9pm to start with). Keeping a good sleep routine is important or you end up having rubbish quality sleep and wake feeling unrefreshed. I have been downloading some progressive muscle relaxation on itunes to listen to in bed.
there are several methods you might like to try for fatigue management like using the traffic light system.
Anyway- there are several younger members about. I have lead a very full and exciting life- (NEVER dull thats for sure!) been able to hold down a primary teaching job for 9 yrs, adopted 2 children, been through a divorce before meeting mr right 2 nd time round and then had a baby who is now 3. Busy doing a course every tues at the moment for becoming a social entrepreneur. Church, family, friends and business with house and home is a full time role for me.
I have severe disease, 3% of RAers get this. It has not been a bed of roses and have had a lot of time in hospital and have failed a long list of drug treatments. I am pretty much f-t in the wheelchair now but have pa's etc to help. i am waiting for Abatacept treatment.
All of us who got RA in our younger years have spent time mourning what we have lost, struggled to come to any terms with it and found it tough going at times. I would suggest when explaining it to people try the spoon theory american site but handy analagy.
Come and find me on Facebook and I can intro you to a few like minded others.
Jenni B-l on there
Jenni xhow to be a velvet bulldoser
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Rank: Newbie Groups: Registered
Joined: 11/16/2010 Posts: 6 Location: Crawley
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Hello everybody, A massive thank you to everyone who spend your precious time replying to me... To be honest reading your stories and replies, make me a bit better...... Thank you so much.. I'm glad I'm hearing from you guys  ... I am still trying to understand myself I am feeling aching, tired and weird all the times. Especially I am having strong pain in my right hand and it always feel like it numb. i can't wait for the drugs to kick in. I am on prednisolone (steroids), folic acid and methotrexade. Since starting my medications I am having stomach and sleeping more..... I have started a diary today because I myself can't understand how I feel sometimes. When my fiancee or collegues ask me how I feel I find it difficult to explain the pain.... Also I get strong headache in the morning and night..... I am feeling extra thirsty these days and I lost me appetite since I started the medications last week. Sometimes when I told to my collegues about RA it seems they don't understand even though I know they care. Thank you so much you all been really helpful.... I know now that one day I will understand myself and RA a lot better and I am sure I will be able to help others. Cheers guys Sharon
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sharon,
If you are on steroids and mtx you would benefit from a stomach protector such as Omeprazol, most of us take these and they do help. Ask your GP for it, and also tell him what side effects you are getting from the meds, he may be able to help. Or do you have a helpline number to ring to speak to a nurse? You don't have to just put up with side effects, it's worth seeing if there is anything that can help.
A diary is a good idea, you can see if you are improving or not. Glad this forum is helping you, we are all here to support you.
Love, Doreen xx
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Rank: Member
Groups: Registered
Joined: 9/29/2010
Posts: 27
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Welcome Sharon and sorry that you have RA at such a young age. Once your meds are sorted and your RA under control it is very possible to lead a fairly normal active life as long as you "listen" to your body and rest when you need to.
I was 40 when I was first diagnosed and very sporty and active. I went through 6 to 8 months of not being so active but now am back doing all the things I love. I realise I'm one of the lucky ones on here but keep positive and there's every chance you could be too.
Good luck - you'll get lots and great help and support from the forum.
Dawn.
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Sharon. I'm Sue 58 and a teacher. I was diagnosed last October. I have found keeping a diary invaluable. I take mine to appointments, then when they ask questions I can answer accurately. Also when you look back you can see that there were days when you were OK and maybe identify why some days were worse. It is a steep learning curve and one you would prefer not to be on. You will find that people rarely realise how 'nasty' (my GP's word) RA is. They usually think it is the same as otseoarthritis and it isn't - I find that really aggravating There will always be someone on here to give support and advice. Take care Sue 
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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010
Posts: 153
Location: Kent
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Hi Sharon Welcome, but sorry to hear you have RA and at such a young age. I was diagnosed last year, i was 35 but i remember feeling very scared of what was to come. I've started logging in here a lot more recently because it a place where everyone understands how you are feeling, I think the support we all give each other on here really helps and also knowing that you are not alone. NRAS helpline is also very supportive. I've called them a few times! I understand about the tiredness, I feel like I'm always tired, I also suffer with an underactive thyroid gland so sometimes i'm not sure if its that or the RA but I think fatigue is another problem that RA causes! Take Care Lou xx I love people who can make you smile even when you do not feel like smiling. x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 89
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Hello and welcome sharon, you will find lots of support and knowledge on here, everyone is very friendly Great idea about starting a diary, i did that when i was diagnosed three years ago, it was so helpful to see what what was going on and refer back to when explaining how you feel to gp's/consultants etc.. I included things such as how long the stiffness/swellings lasted, what joints were affected, how tired i was, what i had difficulty with etc.. Also it is useful to have for if you wanted to apply for dla (disibility living allowance) at some point in the future. Hopefully the drugs will start to help you very soon. emilyXXX.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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sharonmb wrote:Hello everybody,
I am feeling extra thirsty these days and I lost me appetite since I started the medications last week.
Please can you get a diabetes check sharon- the steroid can put your sugars up if diabetic (long term doses can give diabetes but your not in that league right now by the sounds of things). You need an HBa51 test ideally. Steroid pattern is that the sugars go up in the late afternoon early evening if you take it in the mornings.
If you are sleepy in the afternoons- it might mean you need to have a bit of steroid in the afternoons.
I do.
Long term, high dose steroids gave me my diabetes and adrenal surpression.
The GP can certainly check the diabetic bit.
Jenni xhow to be a velvet bulldoser
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Rank: Newbie Groups: Registered
Joined: 11/16/2010 Posts: 6 Location: Crawley
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Hi Jenni,
thank you very for your support.....
I didn't know that taking steroids can give you diabetes.. thinking about it since i've been on the meds I am really thirsty my mouth is very dry....
I am going to my GP tomorrow I check that.
Thank a lot to everyone.
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