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paying for everyday tasks + first appointments

i am 21 years old and my ‘diagnosis’ (my PCP says she thinks it is RA, but I haven’t seen a rheum yet) is only a few months old, but i’ve been having the pain since i was 13 or so.

i’m feeling extremely frustrated about my new limits with the current months-long flare. on monday i stood in line in my college’s dining hall for 20 minutes. it’s thursday now and i’ve spent the past three days in 5-6 and sometimes even 7 level knee and hip pain because of it. it’s so demoralizing to know that even standing for 20 minutes is something i can’t do right now.

my first rheum appointment is this monday. i realized after i made it (it was the first one available, 3 months out from when i called) that the rheum is mostly geriatric-medicine focused so i’m worried he just won’t be able to help me. or he’ll tell me the abnormal blood tests were a fluke, or that people my age don’t get RA, or or or. i have no idea what to expect. if anyone has advice i’d love to hear it.

  1. Sorry we have to meet here......
    If your rheumatologist is board certified in rheumatology, I wouldn't worry about him having a geriatric practice.
    There is such a thing as JRA - juvenile rheumatoid arthritis - which can start at a very early childhood age, so rheumatologists are not going to pay attention to age, per se, except to classify your disease as adult onset or juvenile [and if you do have RA, it could be that you have the JRA variety]. So young people DO get RA.
    Before the appointment, try to think back to when you first experienced pain and inflammation. Make notes. What body part? What age? Did it go away? Return? Never resolved? All this info will be useful.
    Be optimistic. And google credible medical resources and this forum for information. Know as much as you can about the disease once you get a diagnosis. You will be your own best advocate.
    And about the standing in line......maybe you can work something out with a friend to stand the first half of the line, then you do the second half of standing.
    If you're inclined, get a walking cane. It'll be great support for when you have to stand. No shame in it.
    Ask questions!

    1. Lots of RA'ers use two canes. I have a small elderly dog and a dog stroller.....which serves as a wonderful "leaning post" for me.
      In any case, I wouldn't worry about making the other leg worse. Canes are inexpensive enough....some even kaleidoscope......check out Amazon......try one. If nothing else, use it to get things off a high shelf. LOL

    2. Glad it is helpful! The cane would be a great question for your doctor and/or Physical therapist. They can evaluate your gait and help you find a device that will work best for you. Best, Kelly, Team member

  2. , hi and welcome! I am glad you found us, but I wish you didn't have need to, if that makes sense. I will echo a lot of what Drea already said, because she really covered a lot of bases!

    RA can definitely happen to younger people. In fact, a few of our contributors were diagnosed in childhood, or their teens or twenties. Monica was diagnosed while in college -- And one of our newest contributors was diagnosed as a teen --

    A good rheumatologist won't be dissuaded by your age and I hope your appointment on Monday is productive! As Drea said, definitely do your best to be prepared for the appointment. Here's some information on what should happen at the first appointment -- and here's some tips for making the most of your appointment -- (some of the tips may not apply to you, but it will give you some ideas for how to prepare).

    You are definitely not alone in this!

    Please do come back and update us on how your appointment goes, if you feel comfortable doing so. And, if you have more questions, don't hesitate to ask them; we're happy to help in any way we can.

    Best, Erin, Team Member.

    1. i definitely will update on monday, thank you so much for all of this! these links were super helpful

    2. Our community is looking forward to it. ........... rick

  3. Thank you so much for reaching out. I applaud you for following through and continuing to advocate for yourself. Super important to keep advocating for yourself, to help you get some clarity, answers, pain relief, and treatment options to stop further disease progression of whatever is going on in your body. So glad that you are seeing a Rheumatologist on Monday.
    I was diagnosed in my twenties. You mentioned you felt that you have had this pain since you were about 13. One of our community advocates and contributors, Kelly Mack was diagnosed with Juvenile Idiopathic Rheumatoid Arthritis at the age of 2. I have attached one of her articles that you might find helpful.

    colleague Erinwe're

    I see my colleague Erin, has also given you so very useful article links to help prepare you for your Rheumatology appointment on Monday. Unfortunately, it is not uncommon to have a long wait time to see a Rheumatologist for the first time. I'm not saying I'm OK. Just wanted to let you know that your are not alone in your frustration about that.

    Really wish we would not have net here on this site. However, what I can tell you is that EVERYONE on this site cares and you are not alone with your journey.

    Soma you mentioned you were in college. That is great! Just curious what area of you are pursuing in college? Also, just wanted to tell you to never give up on your dreams, but always be open to modifying them as life happens.

    Please keep us posted on how your visit goes on Monday. Please continue to reach out. Sending virtual hugs. Just Keep Swimming...Lynn Marie, " Team Member"

    1. thank you so much! yes, i can remember (and my parents can too) when i was 13 and on a family trip i’d be constantly looking for somewhere to sit down because standing hurt too much. that’s the first instance i remember clearly. i was an athlete in high school though (swimming) so a lot of my pain got chalked up to exertion. good to know about JIA - my pcp said it might have been that, but wasn’t sure how they’d diagnose it since it wasn’t detected until i was 20.

      thank you so much for those articles. i’ve bookmarked them and am going to do some serious list-making this weekend.

      i am in college! i’m studying english lit and computer science, i want to be a game developer 😀 and yeah, i definitely have had some frustration over that - last year when my flares were really bad but before diagnosis my grades weren’t as good as they could have been because i spent that whole year in a constant fog, and i think it’s going to affect my grad school prospects. it’s really frustrating, but all i can do is keep going. thank you so much!

      1. Believe me....we all know how much that means. No one can promise you anything, but shoot for that goal. I have to tell you that I was on MTX for years, max dose, and it really helped......but didn't do the whole job. When I started Humira, it was a game changer. I had no idea it was possible to feel good again. I thought I was doomed.
        So I'm here to tell you that yes, you will have some bad days, and yes, very likely you'll flare from time to time......but with the right meds, using an aggressive approach, you can be reasonably optimistic.
        There are people who are going to say I'm wrong....but consider this: people who are feeling badly are the ones who are coming to these forums [with the exception of a few like me, who want to help]. The rest of the people with RA have likely found the right drugs for them and are out enjoying life.
        Sending virtual hugs.

      2. thanks for reaching back out. Please know I was thinking about you today. I know you mentioned that you had an appointment with a Rheumatologist today.
        That is so great that you are studying English lit and computer science. A game developer. I love it!!
        Soma you have a very positive attitude!!! Hope your appointment today was informative for you.
        There are many treatment options out there to help manage the disease and help to control the pain. This diagnosis is not the end....its the beginning of a new chapter for you on your journey. Reach out anytime. You are not alone in this, there is a wealth of information on this site and people who have lived with RA for a long time.
        Just Keep Swimming...Lynn Marie, " Team Member"

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