Just diagnosed a few months ago.. Some help would be ... - NRAS

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Just diagnosed a few months ago.. Some help would be great.

Isaac91 profile image
41 Replies

Hello, I'm 24yr Male, diagnosed end of last year. I'm having a real tough time accepting that I have RA in my knees/elbows/fingers and ankle from what My Doctors confirmed. Been on Methotrexate/Hydroxychloroquine for a few months. Taking naproxen and some other meds as needed. My joints still feel stiff. I try and keep a happy smile , when my close family and friends ask me how I'm doing. But, I'm confused/angry/sad and I don't know where to turn. Can't play sports like I used to.. I'm starting to really hate this life of mine. Injections every week. I start feeling sick. I don't know what to do or where to go...

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Isaac91
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41 Replies
Beaches2 profile image
Beaches2

Hi Isaac and welcome

I'm sorry to hear you are struggling right now, you will get loads of support on here and there are plenty of young people on this site who I'm sure will respond to you.

I was diagnosed around the same time as you, and although it seems like an age, in the world of rheumatology it is still early days, there are lots of drugs for you to try, it takes a long while for them to find the drugs that suit you, but they will, and you will begin to feel better. There is support and info on the Nras site and some real life stories from people with ra and how they have coped. I hope you have also been given a number for a rheumy nurse, I have found them very helpful if I've had concerns between appt.

you take care x

Isaac91 profile image
Isaac91 in reply to Beaches2

Hello Beaches2

Thank you for the response. From what i'm seeing the support system on here seems pretty great. I hope to try different drugs, but from when it first started the pain i was unbearable, now i dont want to change them incase i go back to that stage. I've been reading a few stories from people with RA and seems different for most people.

thanks again

dillie profile image
dillie

hello,i was diagnosed at the same time - i am struggling too! started mtx injections two weeks ago, the nausea has hit me and i feel so fatigued. i have had to give up work, and everything seems such a struggle. you are not alone! i find reading the comments on this website SO helpful, and hopefully just knowing you are not alone will help. my pharmacist told me that RA doesn't generally respond to medication like other illnesses, and that helped me as i couldn't understand why i was taking so many meds and nothing seemed to work. as beaches2 has commented, i think it can be a long time before to find the right meds, but when you find the right one, they DO work. do chat with your nurse, take each day as it comes, and remember there is a life there for you!! stay strong……

Isaac91 profile image
Isaac91 in reply to dillie

Hey Dillie,

I've been on methotrexate injections for more then 4 months now. In the beginning it wasn't so bad, but now i feel sick to my stomache taking the injections, for some odd reason i feel weaker.. maybe i'm just tired of taking all these medications and im over thinking about it ?

thank you

dillie profile image
dillie in reply to Isaac91

if its any consolation, i feel absolutely shattered today! i saw my gp this morning to ask for more blood tests (other than the usual MTX fortnightly ones) to try to get the bottom of it. the injections are wiping me out. the RA nurse suggested seeing an endocrinologist too. maybe a visit to your gp and asking for more tests might help. i am so fed up!! i almost burst into tears this morning! i feel like it is overtaking my life and am struggling to work out if i am over thinking things too. its tough! i definitely feel that the days when i feel nauseous or very tired, i really struggle with it all and it becomes a vicious circle.

i used to be really active and its really hit me hard that i can't do things, perhaps this is part of the rumination that we go through, part of the process of trying to understand things and come to terms with it. i hope you will feel better soon, def worth having a chat with your gp/ ra nurse. take care ;-)

Isaac91 profile image
Isaac91 in reply to dillie

thanks im actually seeing him tomorrow. I take my blood tests every three months. if i get sick then my dr request one.

thank you for the info

jinxjazz profile image
jinxjazz

I have found that in person support groups are hugely helpful. You aren't alone. You are transitioning to a new normal and it's hard , scary and frustrating. Hang in there.

Isaac91 profile image
Isaac91 in reply to jinxjazz

Hey Jinxjaxx

I'm scared of going to an in-person support group. Only because i dont like talking about myself. but not opening up is also killing me.

jinxjazz profile image
jinxjazz in reply to Isaac91

What about one on one counselling. This is such a life changing disease and so many people don't understand it. If I have to hear one more time " you look good" , I might scream because I feel terrible. Most people don't really want to hear about how you are really feeling. That's why a support group is so wonderful.

Isaac91 profile image
Isaac91 in reply to jinxjazz

I've never gave a one on one counselling any thought. Ill search for it in my area. thank you

Shy535 profile image
Shy535

Hello, you arent alone. You will hear that a lot, but it is true. I was diagnosed around 30 and struggled to accept is as well. Tons of meds and no real relief at first, a lot of it is trial and error. Once I understood that, it helped me somewhat. I have finally gotten some relief, its easier said than done, but patience and asking questions helps as well. As beaches2 said, there are many good drugs out now that can help...its just a matter of finding the right cocktail. Hang in there, we're here.

Isaac91 profile image
Isaac91 in reply to Shy535

Glad to know there are kind people on here. kind enough to drop a few lines of encouragement.

Thank You Shy535!

Sunflower62 profile image
Sunflower62

Sorry to read your feeling so down I was about the same age as you I had two you do children and it was not easy coping like you I enjoyed sports but had to stop. Advise look at the things you can do make a list in the morning of possible things you can do don't make it too long. Maybe get an electric bike that way you peddle when you can and can feel wheel when you struggle they do some fab 'cool' ones swimming is brilliant join a swimming club the water will support you. Look at your diet I personally find some foods set make me swell more for ex. Bread. But you have to make a food diary and see what sets you off. Don't be afraid to question everything when at a the RA clinic.. I always take a note pad with questions and write down the answers done that for years... SMILE a lot also tell young friends you have RD they find it much easier to get.

Jeanabelle60 profile image
Jeanabelle60 in reply to Sunflower62

sunflower is right......never say you have rheumatiod arthritis.....people will just shrug and say horrid things like "yes my granny has that in her hands"......what you have is nothing like what that persons granny has, god love her. or they will say "but you don't look sick"..... you have an auto immune disease and some of the symptoms of that disease are like arthritis. a huge difference. XX

Isaac91 profile image
Isaac91 in reply to Jeanabelle60

Hey Jeanabelle60

Thats the first thing they say. " you're not old,dont old people only get it.." "dont worry.. it not like its cancer or anything serious.." "my aunt/uncle or grandparents are doing just fine"..

Jeanabelle60 profile image
Jeanabelle60 in reply to Isaac91

its the same everywhere.....really maddening. thats why i never use the word arthritis....refer to your illness as rheumatiod disease.....they will say things like "oh, i've never heard of that before" your reply is "yes, its an auto immune disease that effects all the joints in my body"....if they want to know more they will ask......at least you won't walk away fuming with anger. give it a go. keep in touch.

'

Isaac91 profile image
Isaac91 in reply to Jeanabelle60

Ill just be saying," autoimmune disease".

thanks

Isaac91 profile image
Isaac91 in reply to Sunflower62

Hello Sunflower62

Its not the RA that makes me sad. Things happen for the good or bad. but i'm limited to what i can do without over damaging my articular cartilage. i love playing sports, i\m very. I play ice hockey and sprained my MCL months ago and now my healing time after any injury takes 10x longer. I and doesnt feel like it even fully heals. I actually take an hr long walk once day, i try atleast. But, havent gave swimming a thought. I used to love to swim as a child..

thank you

pereguinn profile image
pereguinn

I'm sorry to hear that. I'm 26 and I was diagnosed a few months ago too. I know it's hard to deal with being diagnosed at such a young age. I was angry and in tears when the doctor first told me it was likely arthritis. The idea that I'd have to deal with this the rest of my life and I wouldn't be able to do things that I enjoyed anymore was really difficult to accept.

Something that really helped me that someone in this forum said to me was that you never hear the good stories only the bad ones. People whose arthritis has gone in remission and that have gone back to their normal life won't seek out support groups online. So it's not all as grim as I'd originally thought. Getting arthritis now doesn't mean that you'll struggle the rest of your life. Like everyone on here is saying, you just need to find a medication that works for you, it might take some time but there are options out there.

I was very lucky, after trying a number of NSAIDs and prednisolone that just didn't work for me they moved me to MTX and now I only get the rare very mild flare up which goes away after a day or two, it's nowhere near as bad as I used to get before MTX and I can still function and do things that I did before getting RA.

Speak to your doctor because they're there to help, I know mine have been incredibly helpful and understanding. Ask them to refer you to an occupational therapist to help you deal with this. This forum is so helpful as well, just reading people's stories and knowing you're not alone.

Isaac91 profile image
Isaac91 in reply to pereguinn

Hey Pereguinn,

I have that concept in me now. what i used to do i wont be able to do now as much. My Drs are really nice. always heartwarming. He knows i wanted to become a police officer, he says, "look just cause one door is closed doesn't mean another one hasn't opened. see it as a better future, more stability, benefits, better pay.better schooling. Where only your mind is the key component and you body is more relaxed. But, he also said if i keep up with the the same amount of sports and activities im doing now ill burn myself out way to early and in the long run it'll effect me alot. As my specialst, has also said something similar.

As for the drugs i use. they seem to work but also seem as they dont have the greatest affect of me. he said what im taking is pretty strong. im not sure if something stronger will help.

thank you for all the info.

petalnumber2 profile image
petalnumber2

Welcome to this great site, at least you've found some people here who know exactly what you are going through, so lots of listening ears, good advice and a bit of humour from time to time too.

I'm 67 years old and female, but I have a very active son just a few years older than you and if he were diagnosed with RA he would be downright miserable and confused too.

Even so, I felt just like you when I was first diagnosed and I was down in my boots for a good few months because I have always been a very active person which came to an abrupt halt, just like you.

It must be devastating not being able to play sports with your friends, but in time you will find new things that you are able to do and enjoy. It's just a matter of time.

It's great that you have the support of friends and family around you, and my advice to you is to take one day at a time and don't expect too much from yourself. It will take time to settle down on your meds, but you'll get there. Take care, June x

Isaac91 profile image
Isaac91 in reply to petalnumber2

Hello June!

thank you for the wonderful words. hopefully your son is doing better. i know exactly what it feels like being young.

=)

pineapple_head profile image
pineapple_head

I'm glad that you have joined this forum. You have made a good start in taking control of this disease. Since my own diagnosis I had to change my life around and found pretty good alternatives. For example, I used to work full time and now work part time and I love my new jobs and realised how unhappy I was with the old job! Some people with RA go on methotrexate and never look back. I know someone like that. Others will need move time to find which is the best medication or combination of medication. In that case, you'll need patience and be in tune with your body. You will also need to have a good relationship with your GP and Rheumatology team. My GP helps me with pain control. You have to learn to be in control of your disease.

Hope this help!

Isaac91 profile image
Isaac91 in reply to pineapple_head

Hello pineapple-head

Im trying to take control. but it just seems over whelming and so difficult, i would like to think once i have it in my grasp and take over ill feel a lot better.

MarshaM profile image
MarshaM

Its true what they've all said. I'm 62 and was very healthy, active all my life, tennis 4 x's a week, swing dancing twice a week, hiking, biking. Was diagnosed last Sept and could not believe it. The RA Dr said I was kind of old to be getting this now. So sorry you get it so young. I understand your frustration. I was almost totally disabled since Nov when every joint swelled and was in total pain all the time and could barely walk w knees the size of grapefruit and could not bend knees to step up one step on my front porch. And my shoulders were frozen because it hurt to lift my arms. I asked and got a new RA Dr in march and she uppd my MTX intake and lowered my hydtocloriquin dose because I had lost so much weight (20 lbs) and the orig RA Dr didn't give a crap about my health. In April the new Dr drew 20cc fluid off my L-knee and give a steroid shot and 30 days of prednisone which did wonders to reduce inflammation throughout my body. I spent April working on getting some muscle back as RA tends to waste it away which makes it more difficult to be mobile. I know pred doesn't work for everyone but I've played a little tennis and went swing dancing the last two weeks. Which gives me hope that I will get some of my life back. Thinking that the mtx and hydrocl has finally kicked in and my bloods show that inflammation levels are down. My RA factor last AUG was 151 and last week it was down to 41. I know some peeps don't have high RA factors and still have flares so every one is different. 41 is still flagged high as norm is 0-14 but I have high hopes and wish you the best and hope you have a good Dr. That's important. The folks in the UK talk about having a Rhumey nurse to contact but here in Calif they don't have that setup. I can email the Dr and they answer when they have time. Feeling a bit more normal this month. It took 5 months of mtx and hydrocl and 40 days of pred to get yo this point. Be proactive about your health and don't take no for an answer, just keep asking questions and don't give up.

Isaac91 profile image
Isaac91 in reply to MarshaM

Hey MarshaM

Just imagine how i felt, i never see my family Dr. i go to the walk in clinics. they kept saying it was sports related and ill be fine i dropped from 205lbs to 175ish a little less. i was in bed for a few weeks. then finally went to the ER and they did the test and after a lil whilei had Gout and arthritis... the pain i wnet thre for weeks was unabreable..walking with a cane..i kept telling them there's more to it then a sprained knee..some Drs don't care for who knows what reason.

MarshaM profile image
MarshaM in reply to Isaac91

Drs are people too and there is so much they Don't know. Its discouraging to think because they are drs they'll know how to help but remember, they've heard your pain but most haven't felt it. I bought a cane to use at my worst too because I thought I would fall and break a bone. My orig RA was an older man my age but totally ignored me for months after his first prescription of Hydrocl and when I asked in an email if it was going to help after 3 mos of taking it with the swelling and pain he said it would but it never did. Wish I could have transferred my pain to him for 30 seconds and I know he would have cried like a little baby. He spaced my apts 3mos apart w/ no contact or followup bloods. My new dr put me on Mtx and called for bloods every two weeks for the 2 first mos to track my levels. She actually read my charts and history prior to my first apt w her and it felt like she knew me when she walked in. See your family practice and ask for a reference to a good Rheumatologist and search/ask in your community if anyone can recommend one. Drs don't have a cure for RA so we got to do what we can for ourselves and be proactive for your own health.

Isaac91 profile image
Isaac91 in reply to MarshaM

i know exactly what you mean. this whole thing just sucks...ive actually found the best RA doctor around. he was referred by 3 diff docs.

thanks for the helpful insight

Chappy1 profile image
Chappy1

Hi, I just wanted to say that I too thought my life as I knew it was over and done with. I was in so much pain I thought I couldn't go on without some serious help. But I would like to tell you that now (2 years later) and a few different medications under my belt, I'm feeling so much better almost to the point that I feel back to normal. With the right medication it is possible to get control of this disease. Don't despair, if you have a rheumy nurse at your hospital, contact them. They have been a great help for me whenever I had a problem.

Stay in touch and I hope you can get some comfort from this forum. Just remember we've all been there so we know what you're going through.

Carolyn

Isaac91 profile image
Isaac91 in reply to Chappy1

Thank You Carolyn

You have all been so nice! ill be on the hunt for what meds work for me.

=)

Paulineg profile image
Paulineg

Hello Isaac91. I have recently been diagnosed with RA/RD and feel pig sick with it all and I am 70 so I really feel for you at your age. I am on such a concoction of drugs as I also have osteoarthritis and osteoporosis and I am really anti drugs but what can you do if you want to control these diseases/complaints. All we can do is come onto these sites for help from the poor people who have been affected with these health problems for some time and know a lot of the answers to the questions that we ask. Good luck Isaac91, things can only get better

MarshaM profile image
MarshaM in reply to Paulineg

Pauline, I, like you, didn't take pills/drugs. Didn't even own an aspirin when I had my first flare last July 2013 to relieve pain. It pisses me off to have to concede to these awful drugs with scary warnings. M

Isaac91 profile image
Isaac91 in reply to Paulineg

Hey PaulineG

It feels awful once once they actually diagnosis you for a disease that not cured.. only to give you anti inflammatory to suppress your immune system so your vulnerable to more stuff out there. i also hate using drugs.. being a non-alcoholic/non smoker is sucks knowing im taking so many drugs now. but i hope you have better days. and take good care of yourself Pauline !

julie_warwick profile image
julie_warwick

hi Isaac , I was diagnosed last year and still struggling to accept it , guess it's normal . loads of support here and NRAS are great , it just helps to know you're not on your own , I really feel for you being so young. wishing you all the best x

Isaac91 profile image
Isaac91 in reply to julie_warwick

Hey Julie,

it sucks knowing i have to do this for many many decades...i guess its just an overwhelming sort of feeling i cant hide from now. but thank you =)

julie_warwick profile image
julie_warwick in reply to Isaac91

hey look on the bright side , there are new drugs being developed all the time , you will probably benefit from them , you're right though , it sucks big time no matter what your age, wishing you well x

Dina69 profile image
Dina69

Sorry you are going through this I had jra at the age of 11 and now it is back. I like you get depressed sometimes but you have to fight I work out 4 day's a week pain and all. Last year I had a really bad flare and I got so depressed I just sat and gained weight. I went back to the doctor this year and got my nive diagnosis of RA and now I'm on medication that I really don't want to take but I'm doing it. But what I have learned is walking on treadmill keeps the stress of this down some so that is whatI hhave to do pain and all. Please try it I'm 44 but I'm trying not to let it win like it did last year.

Isaac91 profile image
Isaac91 in reply to Dina69

hey Dina.

hopefully this websites gives us the hope and comfort we need so we dont fall off a good and healthy lifestlye ahead us

Dina69 profile image
Dina69 in reply to Isaac91

Yes it does it's not the pain that is stressing me out it is the doctor that won't explain what is happening to me. I have been to 2 rhemies and both will not answer my questions which stresses me out more. I just would like to know simple things like how can you tell when a flare might be starting, what can you do to keep from getting infections, what tips do you have for people with RA, what can they expect. I can't get not 1 answer from my rheumy just pills and it is really pissing me off.

Neonkitty59 profile image
Neonkitty59

So sorry to hear how you are suffering. I was a competing athlete, a gym go-er, a fell walker (25 miles most Sundays) and RA stopped all that. I was devastated and very angry too. My Rheumatologist said she would love to talk things out with me but sadly didn't have the time in clinic as she had to address all the Rheumy things etc, so she quickly referred me to a psychiatrist. I saw the guy for a couple of months each week and we talked about why I was feeling so angry (I had been working my butt off 14 hours a day for the most ungrateful woman I know who promised help and all sorts which never materialised and it was hard for me to leave at first as she was a friend of my sister-in-law and to work through those feelings. I even had to boot a tissue box round the room to rid myself of some of these feelings LOL) I felt silly at first going to see this guy and asked him after a couple of sessions if he thought I had lost the plot?! He said not at all and I was one of the most together people he had met but he said when you lose your mobility and lose that way of life when you can't do your sports and exercise etc, you actually "grieve" for the person you were. I still long to do all those things but turned my life around in a different direction. Returned to study and achieved a BA and MA in Fine Art/Printmaking. I had/have had bad times and good ones over the past 19 years but find I will now open up to a couple of very close friends (it takes some doing . just as it took me ages on here to admit how I am on my bad spells) and that helps to just say things aloud at times. Or write them down. I think to come on here and admit how you feel is an achievement in itself. I was 35 when my RA was diagnosed but would be like you if it had been diagnosed earlier ... feel very bewildered to have it so young. :-( Then I met someone who had had it since birth so felt sad to know children have it and suffer. I think the NRAS Meetings/Groups are a great way to meet people with similar problems and conditions and also meet experts who often lecture and discuss pertinent issues at some meetings. Sadly the Leeds group is no longer going. I hope your RA is soon well under control with the right medication and you feel better in yourself. It takes time and no matter what anyone tells you, you have to adjust in your own way. Adjusting the mind is as hard as adjusting the body. Good luck and let us know how you get on. ;-)

Metal-legs profile image
Metal-legs

Hi Isaac

I was diagnosed with R.A, aged 29 and went from playing loads of vigorous sports to being in a wheelchair. I can really identify with how you are feeling right now. I felt very angry this disease had hit me so aggressively. I was never offered any counselling 14 years ago, now the GP can refer you for counselling and please take up everything that is offered. Losing your old life is a bereavement and you will grieve for what you have lost, none of my family understood this. Eventually you will rebuild and focus on a new life set around your physical limitations. Getting the right drugs are the key, anti-tnf turned it all around for me but you have to push the medics to get the right combination. I wish you well on your R.A journey, once you can accept the diagnosis you will start to move forward. Best of luck

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