30 yrs old & diagnosed with RA: Hello everybody I just... - NRAS

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30 yrs old & diagnosed with RA

Hopingheart profile image
21 Replies

Hello everybody

I just turned 30 last month and was just diagnosed with Rheumatoid Arthitis. It has been quite the shock for me. As a person I am already anxious most of the time. Or shall I say all the time.

I was prescribed prednisolone and hydroxychoroquine sulfate. I have also done more blood tests and I am waiting for the results.. the doctors want to see if there is another autoimmune disorder related to my case such as Sjogren syndrome or lupus.

Due to the fact that I work with children In kindergarten , The fatigue has been getting worse and worse . I feel exhausted all the time.

Before the RA diagnosis I was getting sick all the time due to school germs and started homeopathy 1,5 years ago. Which worked wonders for my immune system.

However, now I had to stop my homeopathy and start taking these pills. Which have certainly helped with the pain .

I am just a bit confused I guess.. reading about diets , searching what is this thing that I have and how and why did this happen.

Is my anxiety to blame?

Will it go away?

Anyway very happy that I found this online community .

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Hopingheart
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21 Replies
Shalf profile image
Shalf

Hi there,

Happy 30th!

I am 20 years older but still remember being 30, time flies!

I also have anxiety. I was born this way, it's part of being highly sensitive and took a long time to truly identify with myself. I am unconvinced anxiety caused my RA but maybe contributed along with the stress I was going through a few years before my diagnosis.

I understand very well how much a shock it is to be told you have Rheumatoid Arthritis. I was shocked too.

They have you on steroids and Hydroxychloroquine currently and glad they are helping you.

You will likely go through the motions as a lot of us do in the beginning of worrying, researching, trying to figure out why! It's natural.

Sjogrens syndrome is more annoying rather than serious. It can be managed. I have it too. There are lots of things your doctor can give to help you with that.

Lupus is another autoimmune disease. I know a little about it but not enough to discuss but there is a forum on health unlocked for Lupus which may be helpful to you. Probably best waiting till you know your results.

I haven't went down the path of homeopathy. Sounds incredibly good!

Are you still able to work? My niece worked in a nursery and found it to be very tiring but enjoyed it.

Take each day as it comes. Diets won't cure RA but eating healthy will keep the body healthy as will exercise if you are able to. Little bit of walking each day is great.

I don't want to overload you with too much. Stay with us. There is very good support here.

Lots of love

Suzie xx

Hopingheart profile image
Hopingheart in reply to Shalf

Dear Suzie

Thank you so much for taking the time to reply to my post and for your so thoughtful message.

I read it two times already and had me in tears. It is such a powerful feeling to know that there are people on the other side of the world with whom you can share something so personal and feel that you are not alone , that someone else completely understands what you are going through because they have been there.

Most of my friends and family do not know how to respond to the news because no matter how much we love each other what I am going through and what I have is something they cannot 100% understand but can only read articles about (and hear me talk about it- which I do not want to at this time) . Plus I do not want to moan all the time when I start to hurt or when I could not sleep at night because of the pain.

Yes , I am still able to work but it gets harder I feel so tired most of the days and I will visit my doctor to discuss if I could start taking vitamin C & omega 3s.

I guess I am trying to convince myself that what I have will go away or that it is not such a big deal. Going through the motions as you said I guess. Sometimes I just want to scream with all the power that I have.

Glad and thankful to become part of this community.

Thank you

Elli

Xx

Shalf profile image
Shalf in reply to Hopingheart

Lovely reply too Elli.

There has been many a discussion on here about empathy or rather lack of it from family/friends,/colleagues and so on. It's not really that they don't care but more that they just don't understand. RA can't always be seen therefore what can't be seen doesn't exist in some people's minds. This can be very frustrating and very hurtful when the pain and fatigue is very real.

I believe this is what makes this forum such a success. To understand a person is medicine. Can anyone imagine living this alone?

You are so welcome here and glad you have joined us. No matter what tomorrow or the next day and so on brings, we will be here for you.

Take care sweetheart

Xxx

Hessie5 profile image
Hessie5

Hi Hopingheart - sorry to hear about the diagnosis, but rest assured this is a great community and you are not alone. We all felt the same, personally I was scared, tearful, angry - every emotion. I was diagnosed 2 years ago - and it feels like yesterday. I would encourage you to use the community for help, do your own research and please don’t get anxious about stories that may you find that read gloom and doom, honestly we are all different with this journey, alleviating stress a good diet and balancing you meds helps a great deal. How long are you on prednisone for? And how much are you prescribed ?

There is a remission if caught early that is what my rheumatologist aimed for for me. Frustratingly not happening yet and may never happen. It seems like RA likes my body despite me hating it!

Feel free to ask anything here to help. Hessie

Hopingheart profile image
Hopingheart in reply to Hessie5

Dear Hessie,

Thank you so much for welcoming me to this community. You message was a relief and a joy to read and to know there are people here on this side of the world who care. I was in tears as I was with Suzies message. I am becoming highly emotional (I was emotional even before RA) !

I will be in prednisone (2 pills everyday) & on plaquenil (2 pills each day) for 3 months. Then they will re-evaluate my situation and see if they will change something. However, I am determined to see and try to find the best center in Europe for this type of autoimmune disease. I will do my best and get second and third opinions.

I want to live I want to have a family have children I want to be able to do everything I can.

I do not want to take pills. I know that they have side effects and I want to live a healthy life . So many ‘wants’ in these sentences but what can I say . I am angry and sad and shocked and all the things one human can feel. Faith and love keep me going . Although I am scared to the bottom of my heart.

Xx

Elli

Hessie5 profile image
Hessie5 in reply to Hopingheart

Hi Elli - I totally understand as I was like you. Rest assured you can live a good life. A very good friend who is a Doctor in Engineering - diagnosed at 19 with RA. Went on to have 4 kids (just bought 2 dogs) RA seems to disappear when pregnant. She works a high pressure role in London.

She said dont be afraid of meds, she worked out mathematically the percentage chance of the side effects (she’s a Dr in maths). So you live a good life in spite of RA. You can a achieve. Big hug 🤗 Hessie x

Shreeve1979 profile image
Shreeve1979 in reply to Hessie5

I’d just like to add there that I wasn’t diagnosed with RA until after having my baby who is now 16months I often felt that I was in pain ( more than with Any if my other children ) but it was when I stopped breast feeding that I was at my state .. I couldn’t move for pain which seems to get worse .. couldn’t stand , change her nappy , and even struggled to hold her.

On the bright side if you have a diagnosis and are on predisolone and hydroxy and this helps manage the pain , as it did with me I could at least after many trips to doctor and hospitals function.

It all becomes a bit a blur but as said before you have to learn to mange the fatigue that comes with and try and be positive but for sure it won’t stop you having children but will be managed with different medication.

I’m presently on hydroxychloriquine methotrexate injection naproxen predisolone and have just started on benapali injections ( 2nd line treatment) with the hope to be able to stop the other tablets eventually.

It is very frustrating and I get it as before diagnosis I was kick boxing , running and on the go .. fingers crossed may get towards that again eventually but for now not having so much pain is a god send. Don’t give up keep pushing forward and do keep on at docs and rheumatology.

All the best hopingheart

Hessie5 profile image
Hessie5 in reply to Shreeve1979

Thanks for clarifying Shreeve very interesting. Your present meds involve taking Prednisone as well, how much do you take if you are already on other meds?

Shreeve1979 profile image
Shreeve1979 in reply to Hessie5

I also take sulphsazine which I forgot to add .. 10mg 2 tablets of predisolone

Hopingheart profile image
Hopingheart in reply to Shreeve1979

Dear Shreeve1979,

Thank you for your message and for the encouragement. I was offline for two weeks dealing with the world and with RA kicking .

I am thankful to be part of this community .

We are all fighters .. I am doing a bit of positive psychology now and I think It is helping me deal with everyday struggle . I do have to agree that meds are God send I don’t know how I would have gone on without them. Even with the meds the pain is real however , most days.

Hoping the best for you. Keep in touch. Stay strong.

Xxx

Ssmart profile image
Ssmart

Hey! Welcome to this great resource! I’m in the UK I’m 38 and I was diagnosed with rheumatoid arthritis last year, but thinking about random niggles and aches pains I had before I think it had been creeping up on me for quite a few years... I’d even had steroid injections in my knee about 4 years previously!

Between 30-50 years of age is the most common time for an autoimmune condition to “kick in” but it doesn’t discriminate on age... children can unfortunately get it, or it can develop later in life too...

Unfortunately autoimmune diseases do not “go away” something I’m still coming to terms with, but with the right meds and time lots of us can get things calmed right down and get on with as near to normal everyday life as possible, I work part time, I have 3 children and although I’m still really tired, I get up get them sorted and go to work, I do however fall asleep in the afternoons if I sit too long 😂

I’m on hydroxy too and I take ibuprofen every morning. It took me about a month before I started the hydroxy I don’t like taking meds either but boy am I glad I did.

Hope you find this information of some help,

All the best to you xxx

Hopingheart profile image
Hopingheart in reply to Ssmart

Dear Ssmart,

Thank you for replying to my post! Your message has a flair of optimism and positivity! Thank you!

What can I say . I was offline for two weeks trying to sort things out inside me. I have to say some days are better than others in terms of spirits. Tiredness is something that is all day everyday. I can’t remember the last time a I felt like so was not tired.

But I am grateful for everything. It is a long journey and having the forum here is like having a dear friend when in need.

Thank you xxx

Yogi-bear123 profile image
Yogi-bear123

Hi Elli, I remember so well feeling like you. 3 years down the line and I STILL sometimes think it’s just going to disappear! I think that you almost go through this sense of mourning for your self before RA. Your closest family and friends need to know and understand a bit of what you are going through as you’ll need their help sometimes. Think u are right to find the best rheumatologist that you can. My chap says the younger you are the more chance of remission so being 30 is a good thing!! The down side is it’s still very much trial and error with the drugs. Be positive and keep your mind occupied with other stuff to. I’m afraid It is what it is and I’ve found that getting on with life is a pretty strong medicine to. Good luck on your journey..

Hopingheart profile image
Hopingheart in reply to Yogi-bear123

Dear Yogi-bear123,

Hello and thank you for posting this on my message.

I am still going through the motions and have a sense of mourning like you said for the person I was before starting the meds.

This week I am expecting some very important blood results and seeing how the RA progresses and what else.

I think I have high heart palpitations everyday but due to my anxiety. Have to learn how to control this. But like you said it is what it is and the best thing I can do is be part of it and continue with life!

Thank you so much for the support.

Best best wishes to you. Hoping for remissionxxx

JDQuinn75 profile image
JDQuinn75

Hopingheart, The four years I’ve been using this site I’ve found a lot of people that can relate to what you’re going through. I was diagnosed with OA in in 2015 with is not fun to have to deal with either. But I will say the responses I’ve gotten with the post I’ve put on here have not only help me out in a way but the people always tell me they can relate on what I’m going through. We all have one thing in common. We all have some form of arthritis. We all have good days and bad days when our arthritis acts up. I’ve watched my father go through what he does with his RA. I didn’t start going through they symptoms of the pain that started on me til I was in my late 30s . I’m now in my mid 40s almost. I hope you find this helpful with the questions you might have. I have several times. I hop you can get yours under control soon so you can enjoy your hobbies you might have and other things as well that RA May keep you from doing do to the pain. Good luck and keep us up to date on how things are going for you. Take care. JD Quinn

Hopingheart profile image
Hopingheart in reply to JDQuinn75

Dear JDQuinn,

Thank you for your reply to my post and welcoming me to the group.

The thing that keeps me going is faith and sometimes denial- I have to admit!

It is a very helpful forum and a very warm and kind community. I am thankful for all the messages and wishes and encouragement.

We shall never surrender. Best wishes to you too.

Xxx

Cheylann profile image
Cheylann

It's so difficult to accept an auto immune disease diagnosis. I for one was in denial for ages. I don't think age has anything to do with getting RA as u can get this at any age.

I am sure u will find this group very supportive and will slowly find out what works for you and how to manage this debilitating illness. Good luck!

Hopingheart profile image
Hopingheart in reply to Cheylann

Dear Cheylann,

Thank you for the message. Sometimes it is so hard to accept the fact that yourself attacks yourself.. but miracles happen everyday right.!

Best wishes to youxxx

Kaksmith profile image
Kaksmith

Dear Hoping Heart , when I read your post , it was like reading my younger self, don’t despair , don’t feel alone . You are young and your life will still be exciting , you just have another factor to deal with .. I was diagnosed at 30, I am now 52 . I think before mainstream medication , I tried everything from Chinese herbs , acupuncture, to apple cider vinegar . Having something truly out of your control like an auto immune disease, will provoke extreme anxiety, without being prone to anxiety .

I would say research , listen to your body when on medication , it is an exciting time we live in , and the biologics medication has been a game changer , as it can help prevent much of the joint damage that can restrict us .

Learn how to pace yourself , and overdo it when you want to , i would say enjoy the good times . I have refused to let Rheumatoid define me , it is part of who I am ( And it certainly has its rough times ) however I am more than Rheumatoid . It has taught me a lot , and has sent me in unexpected directions..remember there is support out there and on here , we understand, and will never judge .

This is the scariest time , but it will pass and things will improve . Take care and my thoughts are with you

Hopingheart profile image
Hopingheart in reply to Kaksmith

Oh dear Kaksmith,

How can I thank you for your heartfelt response. It lifted me up, being totally honest.

I am beginning to come to terms with RA and the fact that I have RA... sometimes I forget what it was like before that and how I felt before it. Both physically & psychologically. I feel like a different person but I am grateful for the meds and the doctors . I am hoping everything will turn out allright. I have to learn to take care of and love myself more. I have recently started dance therapy and is helping me a lot!

There is a whole world out there and I can’t wait to see it all! Even with RA as part of me.

Many many wishes and thank you to you.

Xxx

Kaksmith profile image
Kaksmith

I am so glad that it helped , I agree that it affects you physically and psychologically ,dance therapy sounds fab , I swim and do Pilates to try and keep supple ,and I also meditate, everyone finds their own path , pacing yourself helps ,and sometimes I do things that I know I will pay for later , but I think we all need balance.

Good luck , you will know instinctively what is best for you , take care ,and I can be a listening ear if you need ..it does get better and I can remember how terrified I was xx

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