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advice for early 20s diagnosis

i'm nearly 21, have had joint pain since at least 14 but probably earlier (got the "growing pains" excuse so much growing up it's hard to remember what pain was real/serious). i was told my bloodwork indicates RA (or, well, "juvenile arthritis or possibly lupus", but my gp admits she doesn't know much at all about autoimmune conditions) a little less than a month ago. i won't be able to see a rheum for another two months and i'm so frustrated not knowing what's going on in my body or being able to do anything about it.

i've been flaring really badly for months (which is why i finally went and saw a dr) and i just feel so powerless and hopeless. i can't imagine living the rest of my life like this. my friends and family have been kind but i can tell none of them really understand exactly how much pain i am in all the time. some days i just have to go to bed hours before i normally would because i'm in too much pain to do anything else.

does anyone have any advice for dealing with this? especially anyone else diagnosed early? or even just some kind words? i seriously don't know how i'm going to make it two full more months before i can see a dr that might not even be willing to help me.

  1. , while I am glad you found this community, I am sorry you have a reason to be here. I wish no one had to deal with RA. We have a number of members that were diagnosed at a young age with RA and I hope they see your post and chime in here.

    First, I know that initial wait for an intake appointment with a rheumatologist can be a long wait. I always suggest calling the rheumatologist's office and asking to be put on the cancellation list. There's a chance that you may be able to get in sooner!

    Second, please know you are not alone in any of this. The pain, the fatigue, the frustration, all the feelings you are having are normal and our community members can totally relate!

    This is one of my favorite pieces on being newly diagnosed; I hope you find it helpful --

    Also, here's a link to one of our contributor's that was diagnosed with RA/JRA at a young age. I thought you might find her work relatable -- And David was diagnosed at age 21 -- They tend to share a lot of insight and tips for living well with RA.

    You CAN do this! It's definitely not easy, but it sounds like you have already been living with symptoms for quite some time. I know it stinks and I do hope you can get in to see the rheumatologist before September/October! Hang in there and again, please know you are NOT alone!

    Best, Erin, Team Member.

    1. thank you so much for the links & your kind words! it’s been a lot all at once esp because i don’t have any immediate family w/ RA so it’s not something i saw coming in any capacity but i feel a little more equipped to keep dealing w/ this than i did this morning. thank you (and the other admins/mods as well!) so much for everything you do for this community - ive been backreading the forums all day and it’s also helped a lot. much love

  2. As Erin says, welcome to our community. I am sorry we have come together because of RA; I am glad you are here.

    You ask for advice, so I will give you the best I have learned over the last 20 years. First, breathe. SIt down and have a nice cold drink. RA is not a short-term disease. It is a long haul. I know that scares you, but you should know if you are ultimately diagnosed with RA or another rheumatologic condition, you will find ways to live with it. There are amazing medications that are unbelievably effective. Your rheumatologist will seek out the best fit for you and help you understand how they work and when to use them.

    Not every day will be terrible, and not every day will be fantastic. But you will once again have great days, I promise.

    I know waiting is so difficult, but only a rheumatologist can diagnose RA effectively. I suggest you call your PCP and ask them to place a call to the rheumatologist's office to see if they can see you sooner. Sometimes this can speed up the process.

    I know my words have not helped. But then again, no words can. I wish the very best for you.

    1. you say your words haven’t helped but i want you to know they really absolutely have. i cried reading this. your compassion & understanding means more to me than i know how to express. thank you so so so much. today has been a really bad day and i was feeling very hopeless this morning but your words & erin’s are really really helpful to me. even just because it’s a relief to get to hear from people who have lived with RA long-term that it won’t be all bad days. thank you.

      1. This is what this community is all about. It's so great to hear how much the words meant to you and helped you gain a little more hope from how you were feeling. Even though everyone is handling their RA differently, but there is a common thread of just "getting it" - and that matters. I hope that you continue feeling a little more hopeful. Warmly, Reggie, Team Member

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