24 and newly diagnosed with Rheumatoid Arthritis - HELP!!

gemmareece

I found out yesterday that I have Rheumatoid Arthritis and am struggling to come to terms with it. It's really difficult to understand how I could have it when I'm only 24. It always sounds like something you will get when your alot older. As soon as I was diagnosed yesterday, I had my first steroid injection, have been booked in for another MRI Scan, put on some painkillers for now until I decide if I want to go onto full medication, which I have been advised to do. It's all such a blur and extremely frightening, as I am a mum to a 2 yr old boy and a self employed mobile hairdresser. I don't know what this means for my life now and would appreciate any advice you may have or facts about what may happen. Thanks in advance, Gemma.

elnafinn

Dear Gemma

Welcome to the forum. I am so sorry to hear that you have been diagnosed with RA at such a young age. There are quite a few on here of similar age to you and also young children too. It sounds as if you are receiving good attention and care and that is great to hear.I hope the steroid injection has started to work for you. It is not unusual at all for you to be in shock and frightened. Many of us have been through that and come out the other end.It does get better. It is good that you have found this forum because it is very beneficial to peeps with all types of arthritis, of which there are many. We all try to help and support each other. You will not feel so alone with it now and we really do understand on here, whereas others sometimes do not.

There is also the helpline that you can call or message. I would not jump ahead to much with worrying about the future, Gemma, difficult though that is. Look after yourself now and your little boy. See what the other MRI scan comes up with, take the painkillers. There are other things that can be done to help, ie referral to a pain clinic, physio, acupuncture.

Please call in as often as you wish, there is always someone around to "chat" to you.

Luv
Elna x

woodbon

Hello,
I'm sorry to hear that you have been diagnosed at such a young age, but unfortunatly, its not unusual. The good thing is that the earlier they diagnose the problem the sooner you can start treatment that will help the disease from getting worse. Also, their are lots of new treatments comming along and being so young, they will help you.

I can understand that you must be feeling down and shocked, thats only natural, but as lots of people on here who were diagnosed with RA at your age, so you are not along, even if you feel a bit like that now. I'm sure they will answer you soon, much better than me.

I am 54 and I have OA, although I'm still going through the diagnosis process, even though its at least 2 years since I've been having problems.

I hope that things will settle down quickly for you.
Love Sue xx
PS Welcome to the forum, I hope you find it helpful for you!

caprica

Hey Gemma,

Really sorry that you've joined the arthritis club. I'm 23 and have some sort of inflammatory thing going on, probably sero-negative arthritis. Pretty much same thing as RA though. Only found out recently so if you want a chat send me a message, not sure I can help but it's good to chat to someone in the same boat!
Everyone on this board is lovely and they have lots of experience and good advice, so you'll get some good answers to your questions.

Try not to worry (easier said than done!) Keep your chin up, hope the steroids are working and remember there's lots of treatments for RA so you'll most likely be alright once you get the right mix xx

frogmorton

Hi Gemma

You have all my sympathy You know so many of those recently diagnosed have not long ahd their children!! Mmm....

Well we all do exactly what you are doing....panic (don't we Caprica??) and then someone form her talks to us (dont they Elna ) and helps us realise we are not alone.

You WILL have a life it IS NOT over .

My advice ? read up on the meds - give them a go and keep talking (bawling) if you have to and in time you will get your head round this huge shock

You take very good care

Love

Toni xx

bailey27

Hi
I am just 29 and also got this going on.
At first, like you I was petrified, thinking the worst and wondering what the future will hold.
The best advice I can give is not to think too far ahead and to live in the mometn. Some days you will be fine so carry on and lead your life but there will be some days when you wont be able to carry on as normal due to pain / stiffness etc. Jsut try not to think too much about it otherwise like me you will get yourself down.
Try and find out as much information from various people sas possible. (dont read into too much you may find out online - especially with regard to medications as you will always pick up on the megative points.)
Medication is far more advanced than years ago and so the poeple you see you can barely move, have disfigured joints etc wont necessarily happen to you espcecially as you are young now and the various DMARDs that are available.
If you need anymore advice send me a message
x

lindalegs

Hi Gemma,

Welcome to the forum but sorry you have this diagnosis

I was 27 when I got RA and had a 2 year-old son and a new-born to cope with..... so I know just how you feel.

Fast forward 24 years and my life has been good although my RA is severe. I still have the same husband I started out with 31 years ago :shock: and my sons are now adults who are lovely, sensitive, caring men not just for me but they see and help others in need too.

You have to take one day at the time, it is a terrible shock but you will come to terms with it and, I promise, things will get better and not look as bleak.

As the others have said medication is so much better these days so you stand a better chance of not ending up with deformed joints.

If there's anything you need to ask please post because you will get lots of good advice and support on here.

Luv Legs

breane

Hi Gemma,It does came as a big shock when first diagnosed with arthritis. I was diagnosed with OA just over a year ago and shortly after was also diagnosed with RA.It may take a while to get the right meds that will suit you but the best thing I found was this forum.Everyone is so kind and helpful and I've gained a lot of good advice from other members.Whether you need advice or just a good moan,this is the place to come to. Take care. Breane.x

gemmareece

Hi Elna,

Thank you for replying. My consultant has been really excellent and was great yesterday even when I was crying when I heard the news! It's been an emotional day today, partly crying and partly trying to be strong for my son. What is a "pain clinic", I haven't heard about this before? It's really nice to see so many people have responded and given me advice on here. That's exactly what I needed. It's hard for my partner or my family to fully understand how I'm feeling and appreciate how tired I am, as they're not going through it, so it's nice to know there's other people out there going through the same.

I'm seeing my nurse for my first visit soon, so will ask to be booked in for physio then. Does it seem to help? I guess it must differ so much person to person.

Thank you for your kind message, I'll let you know how I get on. Gem x

elnafinn wrote:

Dear Gemma

Welcome to the forum. I am so sorry to hear that you have been diagnosed with RA at such a young age. There are quite a few on here of similar age to you and also young children too. It sounds as if you are receiving good attention and care and that is great to hear.I hope the steroid injection has started to work for you. It is not unusual at all for you to be in shock and frightened. Many of us have been through that and come out the other end.It does get better. It is good that you have found this forum because it is very beneficial to peeps with all types of arthritis, of which there are many. We all try to help and support each other. You will not feel so alone with it now and we really do understand on here, whereas others sometimes do not.

There is also the helpline that you can call or message. I would not jump ahead to much with worrying about the future, Gemma, difficult though that is. Look after yourself now and your little boy. See what the other MRI scan comes up with, take the painkillers. There are other things that can be done to help, ie referral to a pain clinic, physio, acupuncture.

Please call in as often as you wish, there is always someone around to "chat" to you.

Luv
Elna x

gemmareece

Hi Sue,

That's what the doctor said about catching it early. I think it's scary as I'm always so active with my son and now worried that it's going to stop me from doing all the things I want to be able to do with my son.

I'm just going to have to take each day as it comes and hopefully the steroids and painkillers will kick in soon.

Thank you for responding to my post xx

woodbon wrote:

Hello,
I'm sorry to hear that you have been diagnosed at such a young age, but unfortunatly, its not unusual. The good thing is that the earlier they diagnose the problem the sooner you can start treatment that will help the disease from getting worse. Also, their are lots of new treatments comming along and being so young, they will help you.

I can understand that you must be feeling down and shocked, thats only natural, but as lots of people on here who were diagnosed with RA at your age, so you are not along, even if you feel a bit like that now. I'm sure they will answer you soon, much better than me.

I am 54 and I have OA, although I'm still going through the diagnosis process, even though its at least 2 years since I've been having problems.

I hope that things will settle down quickly for you.
Love Sue xx
PS Welcome to the forum, I hope you find it helpful for you!

gemmareece

Hi Caprica,

I'm really glad that you replied to my post as your basically the same age as me. I'm sorry that you've been diagnosed with arthritis too, did you find it hard to accept at the beginning as well? Is this were I respond/send a message? I'm still getting used to the forum!

Have you had the steroids? Did you find they took effect quickly? I'm feeling slightly more comfortable compared to before but still in pain.

Hope your doing well, take care xx

caprica wrote:

Hey Gemma,

Really sorry that you've joined the arthritis club. I'm 23 and have some sort of inflammatory thing going on, probably sero-negative arthritis. Pretty much same thing as RA though. Only found out recently so if you want a chat send me a message, not sure I can help but it's good to chat to someone in the same boat!
Everyone on this board is lovely and they have lots of experience and good advice, so you'll get some good answers to your questions.

Try not to worry (easier said than done!) Keep your chin up, hope the steroids are working and remember there's lots of treatments for RA so you'll most likely be alright once you get the right mix xx

gemmareece

Hi Toni,

It's weird isn't it, that's what the consultant said to me when I asked who was mainly effected! Can I ask what meds are you on? I've been told about the different types and have got a bit of time to think about the options, but I think I will go onto the meds as alot of people have told me that the sooner you start them the better you will be in the long term.

I can see they'll be alot of bawling times, so I'll be on here alot! Take care xx

frogmorton wrote:

Hi Gemma

You have all my sympathy You know so many of those recently diagnosed have not long ahd their children!! Mmm....

Well we all do exactly what you are doing....panic (don't we Caprica??) and then someone form her talks to us (dont they Elna ) and helps us realise we are not alone.

You WILL have a life it IS NOT over .

My advice ? read up on the meds - give them a go and keep talking (bawling) if you have to and in time you will get your head round this huge shock

You take very good care

Love

Toni xx

gemmareece

Hi Bailey,

I think that's the best thing to do, even though my mind keeps going forwards. I've been trying to just carry on as normal today, I think it's when you stop and sit down, your mind goes back to everything and then I end up crying.

I can't help thinking it's got to be a mistake and that I'll wake up tomorrow and everything will be back to normal again. Is that normal? It's extremely stressful and scary, I never thought this would happen to me, or at least this young.

Thanks for your advice, take care xx

bailey27 wrote:

Hi
I am just 29 and also got this going on.
At first, like you I was petrified, thinking the worst and wondering what the future will hold.
The best advice I can give is not to think too far ahead and to live in the mometn. Some days you will be fine so carry on and lead your life but there will be some days when you wont be able to carry on as normal due to pain / stiffness etc. Jsut try not to think too much about it otherwise like me you will get yourself down.
Try and find out as much information from various people sas possible. (dont read into too much you may find out online - especially with regard to medications as you will always pick up on the megative points.)
Medication is far more advanced than years ago and so the poeple you see you can barely move, have disfigured joints etc wont necessarily happen to you espcecially as you are young now and the various DMARDs that are available.
If you need anymore advice send me a message
x

gemmareece

Hi Legs,

God that must of been a huge shock to deal with, having a newborn as well! I know it will get better, and am trying to stay positive but it's hard to keep that way all the time. Can I ask, how did RA progress for you? I think that's my main worry, not knowing what will happen in the future at all.

Thank you for replying to me message, take care xx

lindalegs wrote:

Hi Gemma,

Welcome to the forum but sorry you have this diagnosis

I was 27 when I got RA and had a 2 year-old son and a new-born to cope with..... so I know just how you feel.

Fast forward 24 years and my life has been good although my RA is severe. I still have the same husband I started out with 31 years ago :shock: and my sons are now adults who are lovely, sensitive, caring men not just for me but they see and help others in need too.

You have to take one day at the time, it is a terrible shock but you will come to terms with it and, I promise, things will get better and not look as bleak.

As the others have said medication is so much better these days so you stand a better chance of not ending up with deformed joints.

If there's anything you need to ask please post because you will get lots of good advice and support on here.

Luv Legs

cutieclaire

Hi Hun,

I am sorry you are feeling it all at the moment and welcome to the forum, keep on here as the people are fantastic and really helpful and supportive.
I am also young at 33 and I have always had problems with my joints, I was diagnosed at 14 with polyarthritis, which is inflamation of more than 5 joints.

I can totally understand that you are feeling it all has come to an end. I am also a mum with 2 little ones under 4 years. Yeh its hard and you feel so helpless and worried for the future. All I can say is keep your chin up, take it easy (thats if you can with a little one ) and use this forum as much as you can. Just go with it, as soon as I accepted and relaxed, life diddnt seem all bad hun.
If you want to chat I check a few times a day. Take care and hope to chat soon.
Love Clarie
xxxxx

gemmareece

Hi Breanne,

Your right, everyone has been really kind on the forum already, and the advice has been great.

It could be alot of moaning coming up!! Take care xx

quote="breane"]Hi Gemma,It does came as a big shock when first diagnosed with arthritis. I was diagnosed with OA just over a year ago and shortly after was also diagnosed with RA.It may take a while to get the right meds that will suit you but the best thing I found was this forum.Everyone is so kind and helpful and I've gained a lot of good advice from other members.Whether you need advice or just a good moan,this is the place to come to. Take care. Breane.x[/quote]

gemmareece

Hi Alan,

You were so young when you got RA, that must of been really hard for you. That's what alot of people have said about the meds, so thats making me feel more positive already. Let's hope they find a cure next!! Take care x

alanmancunian wrote:

Gemma....... Hi, I was about 16 when I first got signs of rhumatiod arthritis. I had a decent future in sport at football and cricket at semi pro level ahead of me.
All that changed overnight, and I can still remember being a bit shocked by the pain initialy.
I found it very hard to take at first, long days indoors, when your mates are outdoors is hard.
In time you do get used to it in a strange sort of way, and what I do know is that the drugs they have now are a million times better than they were
35 years ago, so in way you are luckier than some.
Good luck for the future, hope the medics can controll it Alanmancunian

gemmareece

Hi Claire,

It sounds silly, but how long did you find it was before you began to feel calmer and more relaxed with it? I'm already trying to go with it and just relax, but hoping that will become easier as time goes on. My son's been really good and keeps saying mummy's got a bad and pointing to my arms! I think I'm still in denial with it as keep thinking it will go away tomorrow and this would of just been a horrid mistake.

Hoping that passes quickly as I know the sooner I accept it the sooner I will start to feel calmer again.

How do you cope with having arthritis and caring for your children? That's one of my main concerns and also how it will affect me working, as I work for myself.

Thank you for your advice, take care xx

quote="csouthwood"]Hi Hun,

I am sorry you are feeling it all at the moment and welcome to the forum, keep on here as the people are fantastic and really helpful and supportive.
I am also young at 33 and I have always had problems with my joints, I was diagnosed at 14 with polyarthritis, which is inflamation of more than 5 joints.

I can totally understand that you are feeling it all has come to an end. I am also a mum with 2 little ones under 4 years. Yeh its hard and you feel so helpless and worried for the future. All I can say is keep your chin up, take it easy (thats if you can with a little one ) and use this forum as much as you can. Just go with it, as soon as I accepted and relaxed, life diddnt seem all bad hun.
If you want to chat I check a few times a day. Take care and hope to chat soon.
Love Clarie
xxxxx[/quote]

elnafinn

Dear Gemma

Pain Clinics vary in the treatments offered and not all hospitals may have a specific pain clinic. Sometimes a consultant with an interest in pain will prescribe drugs or give injections to try to control pain. Other clinics have teams of doctors, psychologists, nurses, physiotherapists, occupational therapists and others. People with chronic pain may be able to attend a specialist Pain Clinic for assessment and possible pain management, together with advice on living a fuller life in spite of pain. It is worth asking about, as and when.

When you see your nurse there is no harm in asking about physio and if that would perhaps help you. Everyone is different as to what helps and what may not. You can be referred for acupuncture too. The more knowledge you obtain, the more you feel able to ask and you become a little more confident in what you are talking about, if you know what I mean. If you have a rheumi nurse that you can call as and when you wish, that always makes one feel as if one is being cared for and makes one feel less vulnerable.

It is very difficult for your nearest and dearest to understand what is going on especially when you don't even know yourself to begin with. This is a common problem we find. Because we don't have a plaster or bandage on and symptoms can wax and wane others do find it incredibly difficult to take on board. Tiredness definitely goes hand in hand with arthritis. We then have to learn to pace ourselves as much as we can and on our better days not go beserk and then find we have overdone it and perhaps set ourselves back a little. Often once meds and things have been sorted this can become much easier. We often find that our partners are at a loss as to what to do or say as men like to fix things and this unfortunately, is not readily fixable immediately.

It is perfectly normal to feel very emotional like you do at the moment. It has been a great shock to your system and your way of life.

You call in as often as you wish, Gemma both with the good and not so good. We will help you, all we can and that is a promise.

Chin up,

Love
Elna x

lindalegs

Hi Gemma,

You asked how my RA progressed, shall I just say very aggressively and I needed help right from the very beginning ......and unfortunately still do. But that's just me and we're all different, it's still early days with yours so this is why you must try not to worry too much about the future. With the correct medication you can still have a life that's much the same as the one you had planned.

Children are very accepting of these things and your son will adapt to suit, if necessary. My youngest son learnt to climb before he could walk because he discovered I couldn't pick him up and it was the only way onto my knee ....he also learnt very quickly to push his older brother off my knee once he'd reached his goal :shock: I know your little boy is 2 but he will be fine 'cos you're just his Mum and he loves you no matter what.

You're bound to feel low and be tearful because it's such a shock but things will get better for you.

Luv Legs

cutieclaire

gemmareece wrote:

Hi Claire,

It sounds silly, but how long did you find it was before you began to feel calmer and more relaxed with it? I'm already trying to go with it and just relax, but hoping that will become easier as time goes on. My son's been really good and keeps saying mummy's got a bad and pointing to my arms! I think I'm still in denial with it as keep thinking it will go away tomorrow and this would of just been a horrid mistake.

Hoping that passes quickly as I know the sooner I accept it the sooner I will start to feel calmer again.

How do you cope with having arthritis and caring for your children? That's one of my main concerns and also how it will affect me working, as I work for myself.

Thank you for your advice, take care xx

quote="csouthwood"]Hi Hun,

I am sorry you are feeling it all at the moment and welcome to the forum, keep on here as the people are fantastic and really helpful and supportive.
I am also young at 33 and I have always had problems with my joints, I was diagnosed at 14 with polyarthritis, which is inflamation of more than 5 joints.

I can totally understand that you are feeling it all has come to an end. I am also a mum with 2 little ones under 4 years. Yeh its hard and you feel so helpless and worried for the future. All I can say is keep your chin up, take it easy (thats if you can with a little one ) and use this forum as much as you can. Just go with it, as soon as I accepted and relaxed, life diddnt seem all bad hun.
If you want to chat I check a few times a day. Take care and hope to chat soon.
Love Clarie
xxxxx

[/quote]
Hi Gemma,

I think it took about a month and my kids are begining to understand a little in their own little ways. Like asking me if my hands are ok and if they still hurt, bless um.

I do hope its ok and calms down soon babe, it should do and it should get easier.

You take care and email me if you want xxxxxxxxxx

jenzie06

Hi Gemma
Firstly, just wanted to say sorry you've had this diagnosis but not to panic.
I was diagnosed when I was 15 and now 27 and pregnant. I've recently written a leaflet that I hope to give to my local Rheumatology department to give out to recently diagnosed patients. I can send you a copy if you like in a PM?

Life isn't over now you've been diagnosed and there's lots of support out there (people tend not to get told about it hence the leaflet).

You've also found this forum which is a lovely supportive place with lovely people who have really good ideas or a shoulder to cry on if you need too.
Keep your chin up chuck!
Jen

gemmareece

I'm definately going to ask my nurse about the pain clinics and if they offer them at my hospital, and also the acupuncture as I hadn't thought about that.

I think that is how my partner is feeling at the moment. He hates it when I cry anyway as he feels helpless, and know he's finding it hard to talk to me about the arthritis as he doesn't want to upset me.

I'm having a good day today as been getting lots of bit's done around the house, but trying not to do too much at once as don't want to feel worse tomorrow. I think I'll have to see how I feel with that.

Hopefully once I've got my meds sorted that will help as well. I just want to start them now, then hopefully I'll have a better chance for the future.

Take care, Gem xx

elnafinn wrote:

Dear Gemma

Pain Clinics vary in the treatments offered and not all hospitals may have a specific pain clinic. Sometimes a consultant with an interest in pain will prescribe drugs or give injections to try to control pain. Other clinics have teams of doctors, psychologists, nurses, physiotherapists, occupational therapists and others. People with chronic pain may be able to attend a specialist Pain Clinic for assessment and possible pain management, together with advice on living a fuller life in spite of pain. It is worth asking about, as and when.

When you see your nurse there is no harm in asking about physio and if that would perhaps help you. Everyone is different as to what helps and what may not. You can be referred for acupuncture too. The more knowledge you obtain, the more you feel able to ask and you become a little more confident in what you are talking about, if you know what I mean. If you have a rheumi nurse that you can call as and when you wish, that always makes one feel as if one is being cared for and makes one feel less vulnerable.

It is very difficult for your nearest and dearest to understand what is going on especially when you don't even know yourself to begin with. This is a common problem we find. Because we don't have a plaster or bandage on and symptoms can wax and wane others do find it incredibly difficult to take on board. Tiredness definitely goes hand in hand with arthritis. We then have to learn to pace ourselves as much as we can and on our better days not go beserk and then find we have overdone it and perhaps set ourselves back a little. Often once meds and things have been sorted this can become much easier. We often find that our partners are at a loss as to what to do or say as men like to fix things and this unfortunately, is not readily fixable immediately.

It is perfectly normal to feel very emotional like you do at the moment. It has been a great shock to your system and your way of life.

You call in as often as you wish, Gemma both with the good and not so good. We will help you, all we can and that is a promise.

Chin up,

Love
Elna x

gemmareece

Hey,

It's good advice to try and not worry about the future and I'm trying to do that and keep things in perspective. I'm really keen now to start my meds as I think that will give me a better chance for the future going on what everyone has said to me.

My son already has been saying "mummy's got bad arm?", they pick up on everything, don't they! He's such a good boy anyway I think things will be ok with him. It will just take him a while to understand that I can't always run around with him.

I think I'm going to just have to take each day as it comes and wait for all my hopsital appointments and go from there. I'm determined not to let it get the better of me, I still want to do so much.

Take care, Gem xx

lindalegs wrote:

Hi Gemma,

You asked how my RA progressed, shall I just say very aggressively and I needed help right from the very beginning ......and unfortunately still do. But that's just me and we're all different, it's still early days with yours so this is why you must try not to worry too much about the future. With the correct medication you can still have a life that's much the same as the one you had planned.

Children are very accepting of these things and your son will adapt to suit, if necessary. My youngest son learnt to climb before he could walk because he discovered I couldn't pick him up and it was the only way onto my knee ....he also learnt very quickly to push his older brother off my knee once he'd reached his goal :shock: I know your little boy is 2 but he will be fine 'cos you're just his Mum and he loves you no matter what.

You're bound to feel low and be tearful because it's such a shock but things will get better for you.

Luv Legs

gemmareece

Hi Claire,

I thought it would take about that to get used to everything, that's exactly what my son's being doing to!! It's so sweet, bless them.

Where about's do you live, if you don't mind me asking? I'm interested to know if there are any groups or people around where I live to meet up with.

Take care, Gem xxx

gemmareece

Hi Jen,

Yes, that would be great, thank you. I was given a leaflet up at the hospitak which had this website in the back (hence how I found you guys), but apart from that it was more about the different meds etc.

I've seen that already, I didn't know so many lovely people would respond to my post. The advice has been great and really has helped me alot already.

I will, thank you for your support Jen.

Take care, Gem xxx