Welcome to the age of 25, you have RA...

alarkra

OK, so I'm very new to this, but I just feel like this is the right place to say how I feel and see if there is anyone else out there in the same situation as me. Apologies if I have got this in the incorrect forum...

This is my story and I want to share it with you all as I hope that there is someone out there who understands what I am going through.

After a year of having various swelling and joint pains in my hands and feet, it gradually got worse with 3 major flare-ups, with the last one getting to a point in June this year when my entire body hurt absolutely everywhere including my voicebox which was hoarse. I couldn't sleep properly as every time I moved my body was in such pain and woke me up. I was bed-ridden for 2 weeks and left utterly exhausted by it all. I finally got to see a consultant and he literally just looked at me and gave me a positive diagnosis of Rheumatoid Arthritis. Having had my suspicions and done a bit of reading about it, it was a relief to have a diagnosis for the hell I had been going through. However, having turned 25 the day before my diagnosis, it was a shock to me as I am such an outgoing person. To be told that this is something that with drugs they hope to control is a positive thing, but the fact that there is the very real chance of having an unbearable flare up again or that the cocktail of drugs I am taking may fail and so I will have to try something else, is actually rather scary. I'm all for trying anything and everything it takes to get back to 'normal', but it's the fear that my life will never truly be the same again. I've now had 2 steroid injections and so that is helping me slowly and am on triple treatment of Methotrexate, Hydroxychloroquine, Sulfasalazine and Meloxicam and so am having an entertaining time ramping up the Methotraxate fortnightly and feeling high pretty much all of the time... but only time will tell if these drugs are actually working. I know that if they fail there are other options, but it's just accepting that I have RA and that this is my life for the moment which is the hardest thing. Last week I had a session at the hospital with a physician, physiotherapist and occupational therapist which was very interesting, yet hard hitting as I came out of my denial and also had the reality that I had been actually coping very well with my symptoms but in truth I am still rather ill with a very active disease and that I still have a long way to go. To go from being very headstrong and taking life by the horns and going for it, letting nothing stop me, to being told that I WILL have to slow down while the drugs kick in and accept that this is what I HAVE to do in order to get better.

I know people are diagnosed with RA every day, but what I want to know is that is there anyone in their mid-twenties who has only recently diagnosed with RA and how are they dealing with it? I just am at a bit of a loss right now, it's rather hard to deal with it. I have only told a couple of my close friends, but I knew that they don't really get it and I don't expect them to because I still put on a brave face and try to get on with my life, even if my body is hurting every where or I am feeling so fatigued. I guess I still can't really accept it and think that by not telling everyone stops people bringing it up all the time so I can quietly fight it and try not to think about it every minute of every day...

Thanks for reading.

dippydoodah

Im sorry you have gone through so much of a tough time.

Unfortunately I actually can't help you as I have OA but Im sure someone will be along shortly who can offer you some support and guidance/experience.

You have come to the best place, you cannot be amongst a better group of people and I hope you get some answers.

Welcome to the forum Someone will be along soon Im sure x

valval

hi what ever age you are when they say you have arther it is a shock to start with you are happy that it not all in your head then you get to angry that it could happen to you also depressed comes along eventually you get to right i have it what can i do to live life as i want to you will get your head around it and work out what works best for you but there will be days when you do to much and he bites but when meds sorted you will feel much better and more incontrol good luck the young peoples forum has younger posters but do not know what age

lindalegs

Hi Alarkra,

Welcome to the Forum but sorry you need us because of your RA

I've had RA since I was 27 and I'm 52 now.

Some people are diagnosed in their childhood or puberty so you're not alone.

It is so difficult for you at the moment because you're still coming to terms with having a life changing illness and it is such a shock.

I have led a full and happy life with aggressive RA, still in the same marriage and with two adult sons so don't think this is the end of the road. You'll just learn how to live with your RA and approach things differently. There will be tough times ahead but with the correct medication you will come through this and start to feel better.

There will be others come along to help and advise you.

Hope this helps a little.

Luv Legs

caprica

Hey! Sorry to hear about your diagnosis, just thought I'd say hey.. I'm 24 and was diagnosed last december so I totally understand the complete and utter shock. I have always been a very healthy person so I have no idea where this came from!!!! Unfair, eh?

Like you, I couldnt stop thinking about it and was in a total state for about 3 months. But slowly once the shock wears off you realise that life goes on.

But right now you need to cry, be angry, do whatever you need to do to let all those emotions out because it IS a horrible thing and you have every right to feel down. I felt and I guess still feel really pissed off that this happened to me at such a young age. I also fear the future. This is normal and something you'll just have to learn to deal with. As impossible as it sounds, slowly you kind of start to put it at the back of your mind. I still think about it most days but not in that 'OMG TERROR' way. I've slowly began to find hope again. Lean on your friends and family because they'll want to help and you'll find that talking really does help you sort your head out.

I used to cry every day about it but I haven't for months and months. Physically I feel much better now, I know I'm lucky but I can say that most days I don't feel like I'm ill at all and I never have to miss out on anything so there is hope and you might find yourself feeling a lot better soon. Sometimes it can take a while to find the right drugs but just try to stay positive!!

Ok i've rambled on but I just remember how horrid I felt a year ago. So I hope this has been of some use... Good luck and keep posting and talking!!!!! Oh and I've met lots of young people through the Arthritis Care groups in my area, it's worth checking out, give them a ring and see if there's any in your area. Makes you feel less alone!

cazaline

Hi Alarka,

Welcome to the forum, if you're going to get help and support about this then you have found the right place, everyone here is lovely.

I'm so sorry to hear about your diagnosis, it must be a very difficult time for you. I was diagnosed with RA at the age of 6 and I am now 23. Being that young I can't really remember what it was like being diagnosed, but I have made it this far and have recently undergone two total hip replacements due to the damage RA as done.

There have been so many developments with RA drugs recently which can help keep pain and damage at bay and as others have said, you can live a long healthy life even with RA. You just gotta learn how to pace yourself and know your limits.

I know exactly what you mean about friends not really understanding. I went through 3 1/2 years of University putting on a brave face before the replacements forced me to reveal my RA to them, some stood by whilst others didn't and those who don't, don't deserve your friendship. RA doesn't make you any less of a person!

I know speaking about how Arthritis and other related conditions is difficult to talk about with those who don't have them, but that is what is so great about this place. We all understand exactly how each other feels and can offer support and advice so please feel free to keep on posting .

Take care

Caroline.

dori123

Hi Alarkra

I'm reasonably new here myself having posted only one time over a year ago!

I'm 25 and was diagnosed with rheumatoid arthritis when I was 20. At first it was hard to get my head around and i found it hard to do things at a slower pace but my joints sure made me aware when i had over done it javascript:emoticon(':roll:')

Over time you learn to plan ahead so you don't do too much in one day and look for ways to make your day to day life easier to manage, like not lifting heavy things, not hoovering the whole house in one day and personally my electric tin opener comes in very useful!

You'll always get moments i think when you feel down about being so fatigued all the time and never knowing when your going to have a flare up but I get through it by actually feeling thankfull that I don't have a more severe condition. I can still go to the shops and see friends just for less time and at a slower pace, it can be hard to deal with a chronic illness but on the positive side there is still alot you can do javascript:emoticon(':)')


To be honest I can't actually remember what it's like to not have arthritis which may sound rather depressing but hey i don't know what i'm missing!!

I hope my comments have helped and not made you feel more anxious. I'm always making jokes with the family about being arthritic at 25! It helps me to look at it in this way but of course at first it is overwhelming.

If the people closest to you are supportive and helpful then that goes along way to helping you manage better.

Try researching 'the spoon theory' on google, it really summs up living with a condition like arthritis.

Take care

Dori Xx

alarkra

Thank you all for your kind words and support.

On reflection of it all, it is just accepting it that I'm finding the hardest as in my head I still think I can run around and do everything all the time and it's the resistance my body keeps putting up which is hard. I know over time it will get better, it's just being patient.

I have been very fortunate recently as I start a new job on Monday. I was interviewed for it and didn't mention my RA as I was so headstrong I thought I'd be able to do a full time job and commute to London from the country every day (just as I have always done). However, after my MDT clinic on Tuesday, they told me I'd be insane to take on a full time job right now and that it would be best to wait a couple of months until all the drugs have taken effect. That afternoon I was offered the job. I came clean with them about everything and said I could only do a part time job right now. They went away and had a think and they came back to me and offered 3 days in the city and 1 day at home, leaving the Friday for my medical appointments. I was stunned as I was expecting them to withdraw the offer and offer it to someone 'healthy' who could do 5 days a week in the city. To be fair, it's on a trial basis for a couple of months as I hope to increase my time in the office as time goes on, so if it doesn't work out, we are in agreement that it will be given the best shot. My OT said that I was being brave to commit to something like this, but she agreed that it was worth a shot if I felt that I was physically up to it as I will get Wednesday to rest at home while working. I may be trying to run before I can walk,but I need to have a job right now to stop me going crazy.

I feel guilty for saying how tough I'm finding it right now when I know that there are people so much worse off than me right now, and I know that I am essentially lucky that I've been diagnosed so quickly and that I have the disease at a time when the medical advances in treating RA are such that I will be much better off than someone in my situation 10 years ago. I am grateful for the fact that the support is there and that everyone's approach is to try and get me better. I am my own worst enemy right now and so accepting it is the big thing for me to work on right now.

**HUGS TO YOU ALL FOR BEING SO LOVELY**

It's comforting to know that I am not alone.

dreamdaisy

Sometimes we are all our own worst enemies. You have the right attitude, spirit and determination. Congratulations on the job, I sincerely hope it all works out for you, alarkra. Good luck with it all and keep in touch. DD

cthornley

Hi Alarka

sorry to hear that you are going through the wringer, I've been there and I know its not much fun, I just wanted to say that there is light at the end of the tunnel.
Things will probably never be the same again but that does not mean that they will always be awful.
I was diagnosed at 19 part way through my 1st year at university.....at the beginning of the year I was the life and soul of the party, out everynight, all nighters in the studio, drinking and dancing etc later that year I couldn't even make myself a cup of tea, open my front door or get myself dressed so I do know where you are coming from.
I just wanted to say that I am now 31, I still have RA and take a high dose of MTX to generally control it, I still have flares but with the MTX its never been bad as at the beginning. BUT I have also completed a very demanding university course, well 3 actually and have 3 degrees, gained my professional qualifications, got married to an infuriating man and have a wonderful child, I work in an interesting demanding and stressful job which sends me not only around the country but the world.
Life is not the same as if I had never got this damned disease but it is far short of a right off.
A combination of getting the right meds, learning to adapt and cope and having the support of your friends and family and now this wonderful group of madcap and kindhearted online friends and your will get through it.
I’m glad that you’ve found us and I hope that we can help through the tough times, if you ever want to talk there is usually someone around online or feel free to message me directly.
Hugs
Chrissie

skezier

Hi Alarka,

I am so sorry you have had this diagnosis and though I don't have ra I was told I had oa in my mid teens. It was very hard to get my head round it but had this forum been around I think I could have done so easier then.

You have had a shock and now have a load of meds, some of which may not make you feel so good but one thing I do know is it does honestly get easier.

I used to be so scared of what it would do to me but in reality its not been as bad as I used to think it would be.

I do so hope the meds will start to help you and you will feel a bit better soon. Welcome to the forum and please post how you feel as that honestly does help. Nice to meet you. Cris x

alarkra

Thank you all for your continuing support!

I made a big step for myself on Friday and saw a group of my close friends and told them all about my situation. I feel so much better knowing that they know, however, only one of them truly seems to 'get' it and so the others will continue to sympathise, but I don't think that they will actually really understand that this is something permanent because I am so headstrong and stubborn they think I'll 'get over it' in time as some of them said 'but you'll be fine, you'll fight this and it will all come right in the end', which you and I know will not ever completely be the case! Hopefully over time they will actually grasp that this is something that I will learn how to manage and that they will all stand by me and comprehend the implications of it all. If they don't, then it will just be a good test to see who my real close friends are.

I start my new job tomorrow and am very excited, it's going to be a wonderful refreshing start for me.

I hope you all have a wonderful week!

dorcas

Hi alarka

It took a lot of guts to speak so openly to your friends.... well done for taking that step.

you sound much relieved to have had that chat with them all... and I do hope they support you and over time have greater understanding of this long term condition.

good luck for tomorrow :!: you've got a great attitude on life and deserve the best.

remember .. we are always here and interested in what happens to you .... the ups as well as the downs (which I hope will be few and far between)

Iris xx

marion1952

Hello Alarkra

Congratulations on getting the job - you must have really impressed them to have offered you the part time hours and working one day from home - that's brilliant!

You've had some good advice from the other people who've responded, so I won't add much.

Like one of the previous peeps, I think about all the people who ar worse off than me and who have worse illnesses and I'm 'glad' that I've 'only' got RA.!

You sound a very strong person and I wish you all the best. It does take time for the diagnosis to 'sink in' - it took me about 8 months, and unfortunately, because you're not wearing a plaster cast or other visible sign of illness, a lot of people/family/friends find it very hard to understand - and that can be very hurtful/frustrating/maddening at times...

Take care - and if you've got time, keep in touch on the forum.

Marion x

alarkra

** HUGS!**

Thanks Dorcas **and Marion (I think we posted at the same time so I missed your post!)!

I've just read the spoon theory. I think that it's going to be a really helpful way to explain RA to everyone as I know I'll get further questions about it when I start work tomorrow. Keeping positive is the only way forward.

Starburst

Hi Alarkra,

Welcome! I'm glad you found us, although I'm sorry you've had to join the arthritis club. This forum has been a major source of support to me, especially in the early days.

I'm 22 and I was diagnosed almost a year ago with RA. I went through a huge range of emotions and it's only been in the last month or so that I've been able to accept my 'new life'. I find it hard to be honest with my friends and often brush off my symptoms. Although, when I'm honest, I find they understand me much better. Giving them a clear explanation of what RA is has also helped me a lot. I found that many of my friends had no idea of exactly how my illness affects me or what it entailed. They just thought I occasionally get sore knees. It was easier when they knew that it's much more.

So, it's late and I'm tired but feel free to get in touch if you need a friendly ear.

Sophie

dreamdaisy

Hello alarkra, just popping in to wish you good luck for today, your first day of your new job. They obviously wanted you as they have designed things to suit you so that is good support from the off! I hope your day goes well. DD

alarkra

Hello!

Thanks for the good luck wishes DD!

My first week at work has been EPIC! Thrown in at the deep end on Monday as everyone was super-stressed and in crisis, so it was down to me to try and learn as fast as possible AND keep on top of the work while assisting to deal with said crisis... Tuesday was just as bad. My work from home day on Wednesday I thought would be calmer not being in the stressy office, but I was wrong and felt overwhelmed just as I did while in the office. Thursday I woke up feeling so very, very tired and wondered if I can actually keep this up. Luckily, Thursday wasn't so stressful and so I managed to keep up a bit better and so left the office last night feeling like nothing had been left unfinished so I could put all my focus on today. Today was a follow-up at the physio and then onwards to have yet another blood test. I joked at the doctors surgery that I am feeling like I never leave there at the moment! It's all a necessary evil though.

Since my disappointment and anger when I started this post, I have calmed down and appear to be accepting of my RA, making a point of telling a couple of people at my new work of my situation as there were murmurs of dismay that I was doing only PT - people were already starting to make out that I was being precious, so I decided to nip that in the bud straight away! Maybe it's working that's taking my mind off it, or that my steroid jab appears to have worked for the past couple of weeks as I have been a bit brighter. However, I'm already starting to cease up again and even though I appear to be happy and optimistic about my situation, I actually fear that this is just my denial kicking back in and that I haven't accepted it at all and that it won't take much - just a stiff morning or very fatigued day - to push me back into angry and irritated land!

My physio today said that she was surprised at how well I was dealing with it all and my optimism was great... but I just don't trust my own reaction to my RA. Deep down, if I'm honest, I do think that if I'm positive about it to other people and they are encouraging then maybe I'll start being OK about it... I'm in such a weird place right now! God I'm glad this forum is here otherwise I do think I'd go totally insane and completely lose the will to carry on...

xx

woodbon

Hi, I don't have RA, and i'm an ancient 55, ( dont tell anyone)

I would just like to welcome you to this forum. Their are lots of people out their who have just the same problems as you and I'm sure someone will be along. Of course you're in just the right place, everyone on here is friendly and you will see just how many people your age or younger. You may also pick up information and tips about how others manage to do things that will help you.

Anyway, hope to you decide to stay with us. Love Sue xxx