20 years old seeking advice on process of being diagnosed with RA

[geb527]

I'm 20 years old and currently in the process of being diagnosed with RA. It's been a distressing journey for me, the past year I have suffered from chronic back pain. I've seen many different medical professionals who have been unable to explain the cause. In the past few months I have started to suffer from hand/wrist pain and severe TMJ (jaw pain). I was sent for blood tests and my Rheumatoid factor and CRP levels came back as abnormal. Due to my family history of RA I have been referred to the rheumatologist to seek a diagnosis. On my first visit I was given some xrays on my hands and feet and have upcoming appointments for some ultrasounds. Being so young I'm worried and confused on what my prognosis is going to be and how this is going to affect my life. I would be really grateful if I could gain some insight into how you all found the diagnosis and treatment process and if you could share your experiences of living with and managing RA?

[Mmrr]

I'm sorry to hear of your health problems, it is a difficult time waiting on a diagnosis and treatment plan. Most people with RD every well and lead reasonably normal lives, this forum tends to have people like myself, who for whatever reason aren't doing so well, so please don't get upset when you read some of the posts here.

Do have a look at the NRAS website and their publications, they are very good.

You can ring the helpline too, I did this before my diagnosis and found it so helpful just to speak with someone who understood how I was feeling.

I'm sure lots more people from the forum will reply to you with suggestions. Keep us informed of how you get on?

[Pippy25]

It must feel worrying and confusing for you right now and I send some warm wishes to you. As Mmrr says have a look on the NRAS website and try to build up information from good sources about RD. Don't forget while people with RD have things in common, we are all individuals and your experience of this will be unique to you and different from others (including family as you say there is a family history of RD). Don't be frightened to write down and or ask questions at any consultations you go to and remember it is about you, your body and your health. Life may feel a bit upside down at the moment and you no doubt have lots to get your head around but take small steps each day. Take care and let us know how you get on.

[KittyJ]

You’ve had good replies from Mmrr and Pippy25. I can only reiterate not to read up too much about RA whilst you have no diagnosis. It will only worry you, probably unnecessarily as RA affects people in many different ways and everyone’s journey is different. I was diagnosed in my twenties when there weren’t the treatment options that there are nowadays. Early diagnosis and treatment can have very good results so don’t despair if you do get a diagnosis of RA. Do let us know how your ultrasound and any following appointments go and come back to talk to us if there’s anything we can help you with or if you just want to chat with people who have all been where you are. Take care X

[stbernhard]

Hi Geb, being diagnosed with RA was a terrible shock to me. Constant pain, no sleep and fatigue taking over. I felt miserable. Thankfully I had a wonderful consultant who said this to me after he alleviated the pain with a steroid injection. You will hurt, you will cry, you will feel miserable and fatigued. That is absolutely fine, you are allowed to be all of that, but I will never allow you to feel sorry for yourself. I f you do, there is not a lot I can do for you apart from dispensing medication. So I hurt, I cried andfelt miserable,but never sorry for myself. And it worked. Slowly, small step by small step I managed to get controll over RA. Of course getting the right treatment and support helped enormously. NRAS has many useful leaflets which I recommend you look at. The more you know about RA the better you will be equipped to get to grips with it. But please avoid dr google. Keep in touch. We are he the the. Ps I was diagnosed 10 years ago and for the last 6 of them I lead a more or less normal very active life with few restrictions. All the best.

[AgedCrone in reply to stbernhard]

Good advice stbernhard.....I think there is always someone worse off than me.

[Shalf in reply to stbernhard]

Very tactful, fair and generally nice

Kind words of wisdom! x

[Monkeysmum]

Welcome geb527! I think the best advice that I can offer would be not to expect too much too quickly. The diagnosis process took about three years for me from the appearance of my first symptoms, mainly due to my GP not taking it seriously. I think many on here have been diagnosed quicker than that and it sounds like you are already a good way through the process, but my point is that sometimes it takes persistence before things get confirmed.

Patience is also required in terms of treatment, as many people on here report having to try a number of different medications, or combinations of medications, to find the one which works best for them. So if things don’t improve straight away, don’t lose hope and keep trying.

[Plumcrumble]

Hi, so sorry about that, firstly we are all different and take the meds so suit each of us personally, if you can understand that 🙄 so the doc's will treat you accordingly, but that's all I want to say about that, anyway I was diagnosed when I was 18 the first year was horrid the diagnosis bit and lots of different drugs, then I stabilized, to cut a long story short I went on to have a career in veterinary nursing then a cardiac technician in the nhs and then a learning support assistant and a good social life, and get married and have a child.

It's up and down, but don't be scared and try to be positive and don't let it get you down, look at it as a journey there's always something round the corner both good and bad, I've had it 40 yrs this year there is loads more I could say but I don't want to bore you 😁 with very best wishes 🤗

[Shalf in reply to Plumcrumble]

Far from boring. Sounds very interesting.

Positive post!

[craftmay71]

Hi there. I feel for you, the idea and realisation that you have this forever is upsetting especially as you are so young. I was diagnosed in my 30s and like you I have family members with the disease - but they are much older than me and the meds that are available now weren’t to them - so don’t look at them and get despaired. You’ve had some great advice here which I can only reiterate. The NRAS website is a good source of info. Please don’t worry about side effects from medication - everyone responds differently. Pick and choose what you read as you could worry yourself. I was so worried about methotrexate but in fact I was ok, you just learn how to manage your meds (I take that at night so I sleep though it) Don’t be afraid to ask questions and keep pushing for answers, the quicker you are diagnosed the sooner they can treat you. I was on so much medication for the first few years but slowly they have gone on to reduce my meds once they found the right combination. Make sure you have a good support network and also NRAS have excellent information for you to give to your employer. I am 49 this year and I lead a very active life, yes I have good and bad days, but I manage the RA I don’t let the RA manage me! I wish you all the best 🤗

[geb527]

Thank you everyone it's really comforting hearing everyones experiences!! I will keep you all updated on my journey with my diagnosis!

[Kingsley852]

Hiya,

I was 18 when symptoms started getting in the way of life and diagnosed at 19. I was a dancer at the time so this was a huge blow to me because the pain almost completely disabled me for the year I was waiting for a diagnosis. I’m 40 now and have taught ballet for the past 13 years. I’m an avid hiker and do yoga. My journey hasn’t been without its pain and struggle but an RD doesn’t mean that you will always struggle. My advice is to try to keep moving as much as you can. Walking, yoga, whatever brings you pleasure.

For medication I’ve recently been put on biologics which have almost stopped my pain completely. First time in 22 years. Before that my inflammatory markers were off the charts. I feel like I’m in a good place right now.

Hopefully this helps.

[Hidden in reply to Kingsley852]

Lovely inspirational post

[Hisue in reply to Kingsley852]

Were you able to avoid joint damage over the past 20 years w/just mtx? Or what drugs were prescribed before biologics? Hope I am not prying too much. TY.

[Witsend8]

I wss on my 20s too when diagnosed. Took yeaes as mine is sort that comes and goesm bloods go normal in between then off rsil! Now older and it gets easier. Medication progressed, some good painkillers around too. Ionly take mine when i need them, i find, if take all time they dont work as quickly as iv believe your body getd used to them.

The not knowing is hard, try to take your mind iff it all. Chill, relax, music films anything x

[Suzuki-ltr450]

Hi , well for me diagnosed at 43-44 could of had for some time before don’t know because I have physical job and hobbies so put aches and pains stiffness down to them , but since getting treatment medication has help tremendously, I get more tiredness if anything , still get flare ups and I won’t lie they can be painful ( not a fan of painkillers ) only take if really have to ,, it can get you down but each and everybody different , I still continue to do my demanding hobbies and more focused now to enjoy them ( ps don’t read my other post as that’s just probably me not being right lol )

[stbernhard]

Hello Geb, just thought I let you know about a webcast that NRAS are holding on 10th March at 19:00 GMT about 'Being Diagnosed with Rheumatoid Arthritis'. by Dr Galloway,

a Senior Lecturer and Honorary Consultant Rheumatologist at King’s College Hospital in London. You can register via the NRAS website or phoning their help line. Worth looking into? I think so. I'll be listening.

[Geb777]

Hi guys,

Thought I'd give an update and want to seek some more advice. My ultrasound appointment didn't go great the ultrasounds didn't show any signs of inflammation which is so frustrating bevause I experience so much pain in my hands. This is just getting worse for me and I'm getting pain my shoulders/back and my knees and hands. It's progressively affecting more joints and the pain is getting worse. I'm worried now as the ultrasound hasn't shown any inflammation, that I won't get a diagnosis. She didn't give me any steroid injections either she essentially told me it was up to me. I just queried about coronavirus and whether she thought it would be a good idea to do it due to coronavirus and she just put me on some different NSAIDS instead. I had some questions for the rheumatologist but she didn't really give me any reassurance and told me to wait until the next appointment at the follow up as she had other patients to scan. She's going to be doing a follow up in three weeks but I'm so scared she's going to rule out RA as the ultrasounds show nothing. I just want a diagnosis as this has all been such a long, painful, confusing journey. I have a strong family history of RA and autoimmune diseases and my rheumatoid factor and crp blood tests all were abnormal and indicated RA. As I now have to wait three weeks I was just hoping to get some insight in the meantime? Do you think she's going to completely rule Out RA because of the ultrasound even though I have a family history and the blood tests showed up abnormal. Sorry for the long message I'm just really anxious that I'm going to be thrown back at square one. This whole process has taken me a year to get to where I am now after a year of unexplained pain and I'm scared of not getting a diagnosis as no one takes you seriously unless you have one