21 y/o waiting to see rheumatoid specialist

rle

Hello,
I am 21 and have suspected rheumatoid arthritis. I have muscle pain and joint stiffness in my knees, left arm, lower back and occassionally neck. I have had a blood test for RA which says that i have tested positive for rheumatoid factor -i have also had x rays and am now on the waiting list to see a specialist. I feel like i am in limbo and am still hanging onto the hope that i may not have RA. I have not really been able to talk to anybody about it so i do not know if the blood tests essentially mean that I do have RA and am simply waiting for it to be confirmed officially. My pain and stiffness is in no way unbearable - and i can still get on with everyday tasks - but i do not know if this means i am less likely to have RA or if it simply means that it is simply in the early stages. Particularly because of my age I am very concerned about how this could progress, as I know many people with RA become unable to work. Any support that you could offer me would be very much appreciated, especially as I have my first university exam tomorrow and am completely unable to concentrate.

stickywicket

Hello rle and welcome to the forum. I’m sorry you had to find us and I must point out that I am not a ‘young person’ myself but sometimes our younger members are out and about enjoying themselves and they don’t tend to be around as much as us oldies. Still, I hope some of them will turn up soon.

None of us are doctors, let alone rheumatologists, rle, so we can’t do diagnoses although I can well understand your need to know the score. What I can tell you is that the fact that your pain & stiffness is ‘in no way unbearable’ doesn’t necessarily mean it isn’t RA. But, if it IS RA, that doesn’t mean to say that all the nasty stuff you’ve read about it is going to happen to you. If, and only if, yours is RA, it has clearly been caught early, the rheumatologist would probably put you on some Disease Modifying meds and, it is possible, that that would be the last we’d see of you on here because things would start to go well. It doesn’t always happen like that. But it can.

I am so sorry you have an exam tomorrow. I hope the authorities are aware of your difficulties as they should be taken into consideration. I know it’s useless to tell someone in your situation to try not to worry. Of course you will worry. But, even if it does turn out to be RA, there is life after diagnosis. I was diagnosed at 15. I got my degree, worked, married had 2 children, and now have grandchildren.

I hope some other young people will be along soon but, if not, try copying your post onto the Living With Arthritis forum where more people hang out. You will get support, I promise you.

rle

Thank you, that is helpful.
I suppose i'm just panicking a little because it may be a few months before i can actually see the specialist.

stickywicket

How did your exam go, rle?

rle

Suprisingly well, thank you for asking.
Unfortunately it was a 3 hour written exam so my elbow and hand were hurting an awful lot by the end of it, but i think i still did OK.
You mentioned that you had a degree, what was that in out of curiosity.

stickywicket

Good. I'm glad it went well despite the payback.

Mine's in spanish. It was a long time ago and I had someone writing for me. It's worth checking out what's available. You should have a lot more options now.

TheSweed

Hey, I'm in a similar situations, I'm 20 y.o male and had the result of my blood test for RA, and waiting on the appointment to see the specialist. I don't really know I feel about everything I ont have anyone to speak to that knows what its like or what to expect so think I'm just thinking about the worst all the time. If anyone has any advice or is going through the same thing an just wana chat give me a shout be good to speak to someone.

littlemissmai

Hey rle,

I'm 22 and currently waiting to see a rheumatoid specialist myself so thought I would post and let you know that I am in the same boat as you. Although I have already had a pretty certain diagnosis from my GP due to my symptoms and positive rheumatoid factor test so i'm just waiting now to get it confirmed my the rheumatologist.

I'm also currently doing my degree and i'm really struggling at the moment to do my dissertation because I get a lot of pain in my fingers while I type.

Anyway- just thought I would say hi! I hope your appointment goes OK.

x

kate21

Hi All,
Haven't been on here for a long time but thought I should say hello has someone who has been in your position. I'm no 25, but my RA developed at 19 - start of second year of uni and also had to wait a long time to see a specialist and know how frustrating it can be.

Hopefully when you see your rheumy it'll be worth it. Mine was very thorough, looking at all my joints, bloods, x-rays, scans and we talked lots about how I felt too - how it was affecting my mood and my sleep etc - because that's important too. So a bit of advice - just be completely honest with them when you do see them, don't hold back on any details, don't feel like a hypochondriac, like you have nothing to worry about because you're young - make it all very clear.

Eventhough i have sero-negative RA (no rheumatoid factor) once I saw the rheumy the diagnosis was quick and it got the ball rolling on lots of other things. I had regular physio, saw a podiatrist and was regularly seen in slinic by the consultant or one of the registrars.

One thing that really cheered me up was when I saw the podiatrist - not because of insoles/shoes but because she asked what medication I'm on (methotrexate) and told me this lovely story (I hope it was true) about an older lady she'd recently seen with RA - she had never seen her before, all she knew was she'd had RA since her teens and the podiatrist honestly thought her feet would need a lot of work because the woman had never seen a podiatrist. The woman, however had been taking methotrexate for years and it had completely stopped the RA in its tracks.

It is possible to find disease modifying medication to prevent the progression of RA. I tried a large number of options and combinations until I found what was right for me. Unfortunately I have some damage to my knees and hands from when my RA wasn't under control, but after years 5 years on meds I am now medication free and in remission.

So, good luck to all of you, I wish you all the very best outcome from this. And please do ask for help, especially if you're at univeristy - my department were not very helpful but then I found the universitys disability services - they assessed me and after that I had lecturers running round after me with high stools so I could reach the work benches, lecture rooms moved to ground floor, I got a special, adjustable office chair (worth about £500!), new laptop and printer with voice activated software, extensions on all my work, a dictaphone to record lectures, someone to take notes for me, this list is endless! There are people out there to help, but you will have to find them I'm afraid.

And something to help you explain how you feel to friends/family - I always found the spoon theory helpful:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Good luck all,
Kate

AnnieSeona

Hi,

Thanks for that reply Kate. I'm 27, in college, and waiting on my appointment with the rheumatologist.

I didn't really know what to expect, so your post was helpful.

My doctor had been giving me anti-inflammatories and antibiotics for the last 2 weeks, when I went in yesterday my ankles were still so swollen, and this time with nodules on my legs, she said it was classic signs of rhuematoid arthritis, even though my blood test came back negative.

My boyfriend keeps saying I should keep an open mind, that it might not be RA, but from everything I've read, I've got every single symptom. Simmiltaneous inflammation of both joints (my ankles), very severe morning pain, ball of foot pain, low level fevers, fatigue...

It's scaring me now because for the last couple of mornings I've woken up with bad pains in my knees, back, elbows and this morning my wrists. I've found it hard to walk at all, plus I'm an art student and afraid of what this might mean if it moves into my hands.

Can I ask how this started for other people? For me I literally woke up one morning after a week of low to medium level foot aches to find I couldn't walk and my feet were totally swollen, and it has only gotten worse since then. I'm into week 3 or 4 now.

Thanks for any replies in advance!
x

dreamdaisy

Hello, I'm not young neither do I have RA but I do know that sero-negative forms of arthritis exist, i.e ones that do not show on blood tests. I have one of those, PsA (psoriatic arthtritis) but fortunately for me my ESR and CRP levels were always high which led to an initial diagnosis of 'inflammatory arthritis'. Later my skin obliged with a bout of psoriasis hence the PsA label. DD