Are there many younger group members?: Hi, I'm 23 and... - NRAS

NRAS
26,705 members30,641 posts

Are there many younger group members?

td09
td09
54 Replies

Hi, I'm 23 and was diagnosed with RA about a year and a half ago. I have good and bad days, like everybody, and although my family and friends try, they don't understand how bad the pain gets sometimes! I haven't met any young people with RA, and it would be nice to hear from people with similar experiences.

Tracy

54 Replies
oldestnewest
sylvi

Well i'm not young any more,but i can tell you that there are younger members on here. One name i can give you is little em,she is now eighteen,hope this helps.xx

1 like
Reply
td09
td09
in reply to sylvi

Thanks Sylvi x

Reply
Danab

Yes there are quiet a few young members, I was 23 when I was diagnosed with RA 6 weeks after having my 3rd child. Now 13 years on I am a network group coordinator and run a local NRAS group. There are different ages at our group, the youngest is around 20 years old and the averag age is 30-40ish. I would suggest you to go on to the NRAS site and see if there is any local groups to you and go along if you can, it should help you t talk to others in the same sitiuation as you. People assume it is all old people nut that is not the case with NRAS and RA as you can get RA as a child, hope this helps, good luck Dana

1 like
Reply
td09
td09
in reply to Danab

Thanks for the advise, will look into it. I know what you mean - so many people think (me included before I was diagnosed) that it only occurs in older people. Do you have any advise?

1 like
Reply
CptJen

Hi Tracy,

I just turned 29 on Wednesday and was diagnosed last year, I still think I'm too young so hope I can include myself in your camp?!

I found that pain aside, the mental part of getting round this at such a young age was so hard. I'm terrified of whether or not I be able to stop my drugs when I want to try for a family (which is way way way down the line!) and get so annoyed and not being able to just go out every other night with my friends.

I do struggle a lot as. Despite having brilliant friends and family it's very difficult finding support in our age group. I found everyone on here is great and know there are much younger people but it's still a struggle. RA is just relentless!

I am on MTX and anti-TNF as I did not respond to other combinations, I absolutely hate the injections but just hope they are doing some good.

What are you taking? X

1 like
Reply
td09
td09
in reply to CptJen

Hi,

I completely understand where you're coming from - it took me a long time to adjust, especially not being able to go out with my friends whenever I want to! For me the biggest issue was the pain - before I wan diagnosed just getting up off the sofa was a big struggle!

I don't really know anyone who has RA, and when my sister found this site, she thought it would be a good way for me to meet others with RA, (like you!) and share stories, as even at the hospital I haven't come across anyone our age.

I am on Methotrexate and Sulfasalazine, and thankfully they seem to be working! I had an injection in my elbow, and it brought the swelling right down, so I hope they are helping you too! What other combinations did you try? x

(oh, and happy belated birthday!)

1 like
Reply
CptJen

Hey,

Thank you! Certainly a little less painful than last year.

I luckily seem to be able to block out a lot of last year, I think it's kind of self preservation. When I sit and think about it I remember the horrendous pain and the just not knowing why. Trying to explain to people you were so sore but hadn't injured yourself so was no apparent reason.

When I was diagnosed I was practically bed ridden, but having just moved house and job I was so determined to stay strong. I couldn't and did eventually succumb to it, so as soon as I was diagnosed I was put on massive doses of steroids. They worked remarkably quickly so I then had the mental challenge.

I hated the hospital visits as everyone was so much older and I have no idea what my colleagues thought- to be honest I have now got to a place where I can a lot of the time just disregard what anyone thinks. Not so much on Wednesday - I was at the hospital, was incredibly sore and so parked in the very close disabled spaces (I do have a badge), I got a dirty look from an old man, because obviously at 29 there must not be anything wrong with me. I got into the hospital and burst into tears :(

It's just good days and bad days, and I suppose I take each day as it comes. I do tend to overdo things a bit when I'm feeling ok as the flares are so unpredictable and you just don't know from one day to the next.

I've had a lot of changes in my life aside from the RA meaning I just need to look after myself a bit more, it may come across as selfish but your true friends know it's not. I split up with my boyfriend of 2&1/2 years as it was all just too much - it is a hard thing but it doesn't dictate life, we just need to get to know it - friends close, enemies closer!

I was on MTX up to 25mg and added in hydroxychloroquine, these didn't work for me and the side effects of MTX were no good. Started on Cimzia in March and reduced MTX down to 15mg, determined to reduce it more when I start feeling better. I struggle with pain relief, now on tramadol which works ok in combination with paracetamol but only in large doses so can't rely on.

Steroid injections - try to keep the joint immobile for at least 24 hours, longer if possible - you might already know that but i didn't at first.

X

Reply
td09
td09
in reply to CptJen

You certianly have been through alot! I understand how difficult it is to get people to understand what you're going through - I've come to the realisation that it doesn't matter what anyone thinks, the people who care about you are all that matters!

No I didn't know that - have a swollen knee at the moment - hoping that goes down, so I won't have to have another injection!!

I was really sick when I first started the MTX, but the folic acid really helped! With pain relief - I found naproxen worked really well for me, don't know if you've tried that?

Take Care x

Reply
Danab

Hi Tracy

You need to find a balance between rest and movement after 13 years I still find it hard to find the balance sometimes. The worst thing I find hard is the fatigue side of the illness, one day you will feel fine and do some general things like housework or shopping then later on you just feel shattered and tired, I say to my husband that I feel tired and worn out and he replys "well go to bed then" but it is not that kind of tired. It is really hard to adjust to a different way of living and adapting things to make it easier for yourself especially being so young, like CptJen says when the man looked at her in a disabled space because she was young, but the fact is we don't look ill, people think that you have to be in a wheelchair or walk with a stick to be disabled but you don't, it's just that we can't walk far without pain, I always park in disabled space to do shopping because after I have done my shopping I'm shattered, it takes it out of me so I dot do much else for the rest of the day.

I did read a very good book by Alice Peterson called "Another Alice" or "A Will To Win" who was becoming a famous tennis player in her prime and then was struck down with RA. It was very inspiring and it reminded me of all the emotions and similar problems I went through, I think it will also be good for partners or family members to read as it explains how we feel and wha we actually go through. Hope it helps you.

I am currently on MTX 20mg as well as sulfasalazine 3 tabs 3 times a day and folic acid, paracetamol and tramadol when needed. I used to be on hydroxychloroquine too but that was stopped a while ago. I was on Enbral self injections for 7 years and they worked wonders, but after that long I started to get more flares and it wasnt working as effectively as it should so I had to come off of that and am now on rituximab which is an infusion in hospital for about 5 hours, you have the first two, two weeks apart and then another one between 4-9 months after. I have just had the one double dose in dec and touch wood I seem to be doing well at the moment, currently awaiting follow up hosp appointment.

One thing I will say, don't let people get to you, you know yourself how you feel dot let other people tell you how you are or what you should do, you know yor body and listen to it when you are in pain, you have probably done too much, take things steady and pace yourself take regular little breaks, there are lots of people who know exactly what you are going through, you will get there but it might take a little time. Take care

Dana xx

Reply
td09
td09
in reply to Danab

Hi Dana,

Thanks for the advice, will see if I can find the books. I have now realised (the hard way!) that I need to take it easier - this site is great for realising you are not alone. Wish I'd found it earlier!

Hope you continue to feel alright, and you get a follow up appointment soon (I know how annoying it can be waiting because the doctors are in demand!)

Tracy x

Reply
WiseSarah

H Tracy,

Check out RheumaGirl. She has a blog on line and she is 24 I think. I was diagnosed when 34 so I'm definitely in the oldies camp. RheumaGirl is very interesting and you can find her on FB too.

Sarah x

Reply
td09
td09
in reply to WiseSarah

Hi Sarah,

Thanks, will see if I can find her, and 34 is still too young to have RA!

Hope you are doing well.

Tracy x

Reply
fizzy
fizzy
in reply to WiseSarah

hi, I wouldn't class 34 as being in the oldies camp...I'm 36 and I although I'm not as young as some of us on here, I certainly wouldn't class myself as old!!!! ;-)

Reply
Hidden
Hidden

Hello Tracy, I am 49, so an oldie, but I have just returned from a trip down to Bristol where I was exhibiting and talking about an artwork to lots of younger artists. I stayed with a friend who is an artist in her mid sixties and is very fit and two of her friends and colleagues who were both even older and we walked around Bristol together. What struck me was how ageist they all were - calling me "the youngster" (which was fun of course!) but refusing to allow for my RA and my need for a rest. It was really difficult because I had just taken my Methotrexate and felt pretty wiped out as always, but they seemed to have boundless energy and I couldn't convey that with RA you are as old as you feel often - ie ancient! Also on buses yesterday with a heavy bag I couldn't lift onto the luggage rack and a very swolen and painful ankle I had to use the disabled seat and got so many dirty looks from older people but I just couldn't stand or get up the stairs - it was awful.

These experiences have given me an understanding of how lousy it must be to be young with RA because older people who don't have it seem to be the worst offenders re having no concept of the pain and systemic side of RA as well as the meds we take. Good luck finding younger ones on here and elsewhere. TTx

Reply
td09
td09
in reply to Hidden

Hi TT,

I know exactly what you mean about the buses - sometimes the pain is just too much - sometimes I just have to sit down! I feel really bad - but I just can't help it! Just make sure you take care of yourself - forget about other people - you probably won't see them again anyway!

Thanks for taking the time to reply - do you have any advise?

Tracy x

Reply
SootyB
SootyB
in reply to Hidden

Hi Tilda, I can sympathise with that - although I'm still awaiting a diagnosis! I took my aunt and my Mum out to celebrate my aunt's 82nd birthday. My Mum is 65, and both of them were moving faster than me (my Mum slightly slower than my aunt, because of OA in her knees) - at 32, that's not what you want! I like to think that time is only relative, though, and - at my age - I hopefully have longer to get there anyway, so who cares? ;) xx

Reply
Sheepish

Hi Tracy,

When I read your question I thought hey I'll reply I'm young, then remembered that I'm actually 42. However there are a few blogs with young people:

Not standing still's disease

It's time to get over how fragile you are

Feeling swell: my life with RA

A flared up: an arthritis blog

I know there are more but can;t think at the moment.

Take time to work out what things are good or work for you. It is finding a balance so you can do things you enjoy but stay relatively well or not in too much pain.

Big hugs to you.

Lx

Reply
td09
td09
in reply to Sheepish

Hi L,

Thanks for taking the time to reply, will have a look at the blogs.

Hope you are keeping well

Tracy x

Reply
mayap

Hi I'm 35 and was diagnosed only a few months ago. I too thought I was too young for ra so I can just imagine what you are going through. I am on MTx 15mg at the moment and lots of pain killers. I am still trying to come to terms with the disease my self. But I have been reading a lot of the blogs on this site and it's gives me more awareness of the disease and a good read lol .

Maya

Reply
td09
td09
in reply to mayap

Hi Maya,

I felt the same when I was first diagnosed - it does take a while to get your head around everything!

I think that the most important thing is to make sure you go at your own pace, don't overdo things! Reading some stories can be a bit daunting (was a bit overwhelming for me at first!) but once I realised the RA effects everyone differently, I found that its nice to speak to people who understand what you are going through.

I remember my first few months were hard - especially dealing with the pain! But once the medication kicked in I could really feel the difference! I hope it is the same for you. How are you getting on with the medication?

Tracy x

Reply
mayap
mayap
in reply to td09

Hi Tracy

It's been hard for me too, how long did it take for the medication to kick in? I was initially given hydroxychloroquine with the MTX, but stopped it due to side effects, now only on MTX, been on it for just over 3 months but still in pain.

My work is also very active on and off my feet all day, so shattered when I get home!

How are you coping?

Maya

Reply
td09
td09
in reply to mayap

Hi Maya,

Well I started on sulphasalazine, and I could feel the effects fairly quickly, I think it was in a couple of months (but I was also on painkillers so I'm not sure whether that was also the reason!) But when I was put on mtx as well, thats when I felt really good - RA wise anyway, the tablets made me feel really sick!! (and that hasn't changed unfortunately!)

I'm sorry the mtx isn't working as well for you, but you havn't been on it very long - give it a little time, I'm sure it will kick in soon! Have you spoken to your dr about it? Maybe a different combo might work for you? I've seen that lots of people are on the same combo as me and the response seems to be good.

I know - after work all I want to do is sleep!

I'm doing alright, I know I'm very lucky, thankfully have had more good than bad days! But am having a bad few days at the moment - knees are playing up! So bored of being at home - daytime TV is awful!

Hope you feel better soon :)

Tracy x

Reply
Hidden
Hidden

Hi Tracy,

I'm afraid I only qualify for the younger tag in my wishful thinking (although not with the RA bit).

I just wanted to say that, having read this thread, you seem like an incredible young lady (I can't believe I'm using the phrase 'young lady'!) and a natural ambassador for younger people with RA.

Why not ask your consultant whether there are specific support groups in your area for the young and if not, whether there would be a need for one.

The consultants do sometimes get involved with their local groups as there evidence is that they are beneficial to all both physically and emotionally.

He/She may even be inspired to set one up within the hospital. You never know, it may lead you down all sorts of roads you hadn't thought of.

Judy x

Reply
td09
td09
in reply to Hidden

Hi Judy,

Thanks, that's very sweet of you! And a really good idea! Not seeing her until August, but am seeing the nurse next month so will ask her about it!

Hope you are keeping well

Tracy x

Reply
emsyb1986

hi tracy

i am 26 and got diagnosed 3 weeks ago. i have been an emotional wreck ever since - i cant get my head around it all. i have my next rheumy appt next tusday. but i have found that i had a steroid injection which took the edge of the pain and i felt great for a week, and then i have been signed off work for the following two weeks - i found it painful to walk and have now developed a bakers cyst after a dvt and blood clot scare! i am on sulfasalazine, but i dont think it is effective enough... the gp put me on cocodamol and naproxen which has decreased the flare ups. but i am a school teacher and not being able to walk or drive very well its just frankly crap!

my latest blood test showed my crp to be at 189 which is alarmingly high - i just want answers, and everything to get back to normal so quickly. my family and husband want to help, but just dont quite understand - i feel theyre patronising me with their 'are you ok?' every 5 minutes.

am seriously considering going to the gp and asking for anti-depressants as i am just a nervous, emotional wreck!!

i just hope everything gets better soon

xxxxx

Reply
td09
td09
in reply to emsyb1986

Hi emsyb,

I sorry you're having such a hard time at the the moment - but it does get better! I wish I could give you a quick fix! You've only just started your medication - it took me a while for the tablets to kick in. I started on sulfasalazine too - they then added MTX about 6 months later which really helped. Do you know if you're doctor is planning on putting you on combined meds?

I found it quite difficult to get my head round it too - my initial thought was 'im too young!' I'm sure your family mean well - I think its quite difficult for someone who doesn't have RA to understand. But there's lots of lovely people on here to help if you need it!

Hope your appointment on tuesday goes well!

Tracy x

Reply
emma88

i got diagnosed last year so had it for just over a year now im 24 was 23 when i found out iv sort of got used to it but it can get me down at times specially with the pills im on dont get me wrong they work amazing i dont get no pain nemore well not half as much as i did but theres so many donts with them and well im only 24 i wanna live like a 24 year old im also on methatrexate i was on sulphasalzine or how ever you spel it bu they wasnt working so now on mtx and only problem is iv been told i cant go out and get drunk dont get me wrong i dont need to be drunk to have a good time but i dont go out much as it is once every 6 months if im lucky so when i do go out i would like to be able to have more than one drink has anyone else drank on them or have they been advised not to? im allowed one they said but like i say im 24 and when everyones drinking shots and what not on your birthday and your drinking coke it can get you down especially when i dont go out much as it is does anone else feelthat way on mtx or am i the only one? i sound awful at times as like i say i dont need alcohol but on nights out most 2 year olds like to have a fair few drinks well i do anyways haha :)

Reply
td09
td09
in reply to emma88

Hi emma,

I got told the same too - I know what you mean, don't need to drink, but its nice to have the option!! I don't go out as much as I used to either, but I think a drink once in a while is fine! You can't stop your life because of the RA! x

Reply
helixhelix
helixhelix
in reply to emma88

One or two drinks every now and then is probably ok, but really, really try not to drink any more than that. You've only got one liver, and you need it! Try to find a soft drink that you like, and which isn't as obvious that you're not drinking alcohol. I have schweppes and try to tell myself it's gin. Polly

Reply
Danab
Danab
in reply to emma88

Hi Emma, i was diagnosed 13 years ago and have been on methotrexate for about 10- 11 years, knowing i was going to be on this for a long time and not being able to drink wasn't very good, but i do go out about every 4-6 months or so. I do drink but drink sensibly, there may have been the odd occasion where i have drunk a bit too much and was quite ill the day after, so my hangovers are a lot worse, so now when i drink, i get merry and know my limits when to stop and go on to water or soft drinks. I think they dont like very regular drinking on it, also we do get liver blood tests regular too. Good luck and have a good time when you are next out but within reason, after all you know your own body :-)

Reply
Hidden
Hidden

Hi Tracy,

I'm also 23...I was diagnosed back in October and still struggling to find something that works well for me. Am currently on MTX, Hydroxychloroquine and Prednisolone. Having steroid injections into 4 joints in 2 weeks time...fun times!!

I know what you mean, my family and friends are great but I think there's only so much sympathy they can give! The difficulty is that it is such a constant thing, even on good days when to everyone else you appear 'normal' inside I'm thinking blimey I need to sit down!

I was always really active and busy and it has taken some serious adjustment to stop fighting it and rest. A few bike rides that ended with knees the size of melons kind of stopped that one!

It's nice to hear from someone else 'young' so feel free to contact me any time.

I see other people have recommended books but one that I found really useful is this:

amazon.co.uk/Resilient-Life...

I'm really not into self help type stuff but this was actually really good. The woman who wrote it was diagnosed in childhood and works as an OT so it offers a really interesting perspective.

Hope you are doing well.

Tori x

Reply
td09
td09
in reply to Hidden

Hi Tori,

I know - sometimes I feel fine, and then suddenly feel like I could do with a nap! I found it quite difficult to adjust initially, but I think i've just about managed to get my head around it! How are you feeling about it all?

oh no - thats a shame about the bike rides! My knees give me the most trouble too!!

Thanks for the book info - will try and have a look at it.

Don't worry about the injections, I had one in my elbow and it really helped!! Felt the benefit really quickly - Hope thats the same for you. How are you getting on with the medications?

Thanks, feel free to contact me too!

Tracy x

Reply
sherbygoat

hi, i consider myself as young, im 29. i have had it since i was 14 and it has slowly got worse, in fact the last 3 years it has got alot worse. my friends dont understand and i often feel alone. friends and family see u on a good day and then the next day i can be really bad and i swear they think im putting it on. i dont go out clubbing and havent for ten years, i often find i cant wear fashionable clothes or heels or stay up that late, let alone dance. i ave just covered up hope u get all the help u need from doctors, they can be very good. my only regret is that i had steriod injections as i feel they have just covered up the pain and gain me weight

hope any of this helps or even just makes you feel a bit better.

Reply
td09
td09
in reply to sherbygoat

Hi Sherbygoat,

I'm sorry you've had such a tough time! I understand how diffcult it is trying to explain RA to people - and you are definately not

alone!! I very rarely go out now - and when I do heels are definately NOT an option! There are lots of lovely people on here who understand how you feel! Feel free to contact me any time!

What medications are you on? Have you spoken to the doctor about how you're feeling? Im sure theres something they can do.

Hope you feel better soon

Tracy x

Reply
Hidden
Hidden

Hi Tracy,

It's certainly a lot to get your head around but think I'm just about getting there too! I find you just have to stay positive and be realistic about what you can and can't do and focus on the bits that you can.

Sorry to hear it's your knees too...I find that knees are difficult as you kind of need them for everything!! When my wrist was bad I could put a splint on and not use it too much but there's not a lot you can do without knees!

I'm glad to hear you found the steroid injections useful...in a weird way I'm kind of looking forward to them as hoping they'll provide some relief.

I'm not getting any side effects from any of the medications really but also not finding that they are helping my symptoms at the moment...although I haven't been on the MTX that long and I'm not yet at full dose so hopefully they'll start to kick in soon.

How do you get on with your medications? Do you work full time...if you don't mind me asking?

Tori x

Reply
Hidden
Hidden

P.S. with you both on the heels...not an option anymore...and I have such lovely ones sat in my wardrobe!!

Reply
td09
td09
in reply to Hidden

Hi Tori,

I know - stairs are my worst nightmare!!

Well my elbow was so swollen I couldn't straighten my arm! I think it went back to normal in a couple of weeks (by the way - this was about a year ago - so might be wrong about the time frame - but it was pretty soon!)

Oh - well im sure that the meds will kick in soon. I started on sulfasalizine, and then added the MTX 6 months later. The meds seem to be working, am doing much better now - I found the MTX really helped! Hope thats the same for you! The only problem is they make me feel sick - having to take 8 of them in a row is horrible!!

Well, I'm doing an internship at the moment, but when i'm not in the office, I work as a waitress - that really doesn't help the knees! But need the money so can't help it! What about you? You working full time?

Tracy x

Reply
Hidden
Hidden

Haha I know exactly what you mean...stairs never used to even register and now wherever I go I'm thinking please be a lift or not too many steps! My Mum and Dad live in a Bungalow so I love visiting them!!

Oh that sounds good...I'll let you know how I get on with the injections.

Thanks. Sorry to hear they are making you feel sick. Have you tried increasing the Folic Acid dose as I've heard that's an option?

Wow I can imagine that being a waitress is hard work with RA. Well done you for keeping going!! I actually work for the NHS so am seeing it from both sides these days! I'm a Dietitian in a big hospital in Birmingham. Have had to take a couple of weeks off at the mo though as running round the wards wasn't helping my knees. Am hoping to get the inflammation a bit more under control before going back as I kept going in and then not being much use to anyone!

Tori x

Reply
td09
td09
in reply to Hidden

I'm exactly the same - I work on the 3rd floor and have to take the lift - everyone takes the stairs but I just can't do it!

My dr did say to increase folic acid - but its just when I take the tablets that I feel sick, its fine after a few hours!

Dietitian - that must be a really interesting job! I'm sorry that you're not feeling great right now, I hope you feel better soon.

Let me know how it goes - keep in touch

Tracy x

Reply
Hidden
Hidden

Tracy you've a had a great response so hope it's made you feel less alone now? It's one thing knowing RA is a disease that can strike at any age but another actually talking to people who are at your age and stage too - or who have had it since they were young.

I just wanted to comment on the alcohol and MTX thing. I have been on MTX (and now Hydroxy) for 7 months and although I've never been a big drinker - I've never wanted alcohol so much as I do knowing that I shouldn't have it now! Both times I've succumbed to more than one drink (on Easter day I was celebrating our wedding anniversary and also flaring often so I went for it with 3 or 4 glasses of champagne. Then on an away trip I had about 3 g&ts over two days) my liver function tests have come back raised and I've had to move down a dose. No doctor has told me to avoid drinking but I've learned the hard way that if I want to the MTX to work, which it really does for me, then I need to take a higher dose than 15mg and that means not drinking at all.

There are a few other things you can do still while on MTX and I'm now aiming to do them more... When joints are good you can boogie the night away like I did last Saturday - having kicked off my high boots first and keeping one ankle steady. And other fun stuff too that I won't go into ho ho .. So if the MTX works in the joints then there are great compensations and you can smirk the next morning when all around you are clutching their heads and diving for the loo!

Tilda x

Reply
Hidden
Hidden

Tracy you've a had a great response so hope it's made you feel less alone now? It's one thing knowing RA is a disease that can strike at any age but another actually talking to people who are at your age and stage too - or who have had it since they were young.

I just wanted to comment on the alcohol and MTX thing. I have been on MTX (and now Hydroxy) for 7 months and although I've never been a big drinker - I've never wanted alcohol so much as I do knowing that I shouldn't have it now! Both times I've succumbed to more than one drink (on Easter day I was celebrating our wedding anniversary and also flaring often so I went for it with 3 or 4 glasses of champagne. Then on an away trip I had about 3 g&ts over two days) my liver function tests have come back raised and I've had to move down a dose. No doctor has told me to avoid drinking but I've learned the hard way that if I want to the MTX to work, which it really does for me, then I need to take a higher dose than 15mg and that means not drinking at all.

There are a few other things you can do still while on MTX and I'm now aiming to do them more... When joints are good you can boogie the night away like I did last Saturday - having kicked off my high boots first and keeping one ankle steady. And other fun stuff too that I won't go into ho ho .. So if the MTX works in the joints then there are great compensations and you can smirk the next morning when all around you are clutching their heads and diving for the loo!

Tilda x

Reply
td09
td09
in reply to Hidden

Hi Tilda,

Yeah the response has been great - can't believe how many people took the time to reply!

oh really? I'm sorry that you had to move down a dose! But it sounds like its still helping you. I got told when I was first put on the mtx, i'm on 20mg, that I could only have 1 drink - i'm with you, don't really drink that much, but its surprising how much you want it when you know you shouldn't!! I'm surprised your dr or nurse didn't tell you!

Sound's like you had a great saturday night! :) haha - I completey agree with you - had a night out for my birthday last month - thankfully the RA was good - spent the whole night dancing! Was brilliant!

Hope you stay well and have many more nights dancing!

Tracy x

Reply
Hidden
Hidden

Thanks Tracy - glad I'm not the only one on this site whose been well enough to dance lately! And it was great waking up the next day without a hangover - just feeling really well. RA is very stress related I find and dancing was such a tonic it seemed to get me past the latest flare up.

The day before I was using a walking stick and thought I'd never dance or walk normally again - but thanks to Naproxen I was fine by the time of the party. I love exercise these days - used to hate it - but since the RA it's been on of only things that keeps depression at bay and also helps keep weight down and muscles strong.

Dancing is incredibly intoxicating - this time it was to a live funk/ rock/blues band with an incredible sax player and it just worked like a pulse with me and I had to move. I got loads of compliments afterwards on my dancing style which was a real thrill - especially after a few days of not being able to walk! TTx

Reply
td09
td09
in reply to Hidden

Hi Tilda,

Sounds like you really enjoyed yourself - think we should all go out dancing with you next time! :)

Glad you enjoy exercising! I really need to start doing more exercise - but by the time I'm home from work I just can't be bothered!

Take care and keep in touch

Tracy x

Reply
holly2812

heya, iv just joined the site to see if any one is in the same situation as me. im 22 and been diagnosed since i was 19, but iv prob had it longer. i dont know any one who has RA who are in their 20s. i just want some advice on how do you cope with RA and everything that comes with it?

Reply
td09
td09
in reply to holly2812

Hi Holly,

That's exactly the reason I joined this site!

Well it took me a while to get my head around it! Was given so much information at my first appointment, so spent a lot of time reading about RA.

Well before I was diagnosed I could barely walk! So once I started my meds I felt so much better! Am on Sulfersalazine and MTX - what are you on?

One thing I would say is take it easy! Even if you are feeling alright don't overdo it (I unfortunately learnt the hard way!) You know how much you can and can't do - don't worry about everyone else!

How are you getting on with everything?

Feel free to contact me if you ever want to talk.

Tracy x

Reply
vjbuck

Hi Tracy,

I'm 28 and was just diagnosed in April after quite a quick but very painful onset. I'm on Sulfasalazine, currently boosted with prednisolone, anti-inflammatories and lots of pain-killers. Not sure if its going to do the job on its own but at least I havent had any side effects from it.

I'm still very new to all this RA business although I do also have Type 1 diabetes so I'm an old hand at suffering from a complicated 'invisible' disease and all the problems and irritations that brings! Doesn't make getting a second any easier to deal with mind you!

I'd be really interested to hear about how you've got on in the first 18 months? With hospitals, work etc? Im only now going back to work after 10 weeks off and its terrifying.

I've looked at quite a few forums since being diagnosed and have to say (even though I havent actually posted until now!) this one seems the most informative and supportive. I read it every day just for the reminder that I'm not the only one and there are ways to cope. I also follow quite a few private blogs online which are fairly easy to find and then tend to lead on to more.

Great to hear you guys are back dancing! That's made me feel very positive!

Viki x

Reply
td09
td09
in reply to vjbuck

Hi Viki,

Nice to hear from you (I'm honoured to be your first post!) :)

I was also diagnosed after a quick onset. I also started on Sulphasalizine - it really helped me, but after 6 months MTX was added and I found the combined meds were amazing!

I'm sorry to hear you've got diabeties as well! RA's hard enough without adding something else!

Well I was diagnosed really quickly, my blood test results were awful and I saw the consultant within a week. I have been really lucky - have a great doctor and a brilliant nurse - I'm sure she is fed up of me calling her! I have blood tests monthly, and I have to see the nurse every 2 months. Its a bit of a hassle as I have to travel an hour each way, but its definitely worth it (As so many people seem to have trouble with their hospitals!)

When I was diagnosed, I had just graduated - so didn't have a job, so that gave me plenty of time to rest! Thankfully the meds seem to be working, and have more good days than bad (hence the dancing!). But I waitress part time, so that means long shifts on my feet, so sometimes just can't go in! I'm sure you will be fine with work!

How are you getting on with everything?

Tracy x

ps - Feel free to contact me if you ever want to talk :)

Reply
Hidden
Hidden

Hi Tracy

I'm 23 and was diagnosed at 16 with AS/RA.

I've just changed jobs and work with another bloke not much older than me who also has RA and takes Humira, the same as me!

So it's surprising how many of us "youngies" are out there.

Keep positive at all times.

Aaron

Reply
td09
td09
in reply to Hidden

Hi Aaron,

Nice to hear from you. I know - I thought there would be others our age, but its really nice to actually speak to them!

Hope you are keeping well. Feel free to message me if you ever want to talk.

Tracy

Reply
LauraAsheighh

I'm 19 years old message me to talk more.

Reply
emma88

I got diagnosed at 23 the pain can be awful at times and you dont relise what its like till you get it my Mum used to always be likeif you keel clicking your fingers youll get arthritis and i used to laugh it off haha i have bad and good days

Reply
hawker955

What do you mean? We're all youngsters on here! I've been young my entire life! And will remain so thanks!!

1 like
Reply

You may also like...