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My family thought I was nuts

It started the week of my 27th birthday on a trip back home during grad school, and me, my wife and parents did a road trip to Vegas. After getting there my hip hurt, and I blamed it on sitting in a car for 10 hours. Then it began to hurt worse and worse until laying in the hotel that night I was nearly in tears from the pain. Over the next couple months to it was a painful wrist, swollen red joints on my fingers, so that I could barely tie my shoes from pain or an inflamed knee that made it hard to walk. It would only last a day or two then like nothing had ever hurt. After a few months I literally hopped to a doctor and got a rheumatologist referral. Neither the first doctor or rheumatologist had any idea and only give me some anti-inflammatory medicine and pain killers never made a dent when things hurt. Then as mysteriously as symptoms started they stopped and went away for almost a year until I finished my Ph.D. And we moved. In the mean time I had been searching online for anything that sounded like my original symptoms, and finally found a description of palindromic rheumatism and it matched exactly like what experienced. Then symptoms started again but less severe and I found a new rheumatologist. During our first meeting instead of being like the last with no clue her first words after listening to my history was palindromic rheumatism! I felt so vindicated that I wasn’t crazy! During all the initial symptoms my family thought I was making it up and ignored how much pain I was in. Now the Dr. has given me at 30 years old an official RA diagnosis (palindromic rheumatism that developed into full RA). Typing all this hurts and I am hoping to start on metho in a few months after we finish working on baby 2. I am hoping to see more improvement on that than plaquenil. Now it is wondering with my wife how our future will look as we get older and if I will have the ability to do a lot of what we want since even now doing things is harder. Right now I am having a flare and my hands and feet hurt and it is hard to type, drive and sleep. I find it helpful seeing other people’s stories and all the resources on here! Thanks.

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Comments

  • Eebtool
    2 years ago

    Hey Matthew,
    It is now about 6 months later, How is it going for you?
    Hope your family no longer thinks that your nuts!

  • Wren moderator
    3 years ago

    Hi, Matthew!

    As I was reading your story I thought, “Gee, his story sounds just like mine did before I was diagnosed!” That was almost 30 years ago, but my doctor diagnosed RD right off.
    My heart went out to you as you described your painful joints. And I do understand about how vindicated you felt to finally have an actual diagnosis. It’s very difficult to explain this pain to others, especially when it hits for a few days, then goes away like it was never there at all.
    Good luck with your second child! I hope you’re able to get started on MTX before too long, and that it will slow down the progression of the disease and relieve your pain and other symptoms.
    Please remember that we’re here for you, and so many of us in this community understand what you’re going through. Thank you for telling your story. I wish you the best going forward, and hope you’ll comment again one day soon. 🙂

  • AMBiermann
    3 years ago

    Hi! Hang in there and don’t get discouraged. I completely related to your story as the same thing happened to me when I was 25. I wasn’t officially diagnosed until I was 27. The most important advice I can give you is to listen to your rheumatologist! Do what you are supposed to do and if you are on medication, stay on it unless otherwise directed. Maintenance of this disease is crucial. Sometimes I was in denial and felt that if I was feeling better, then I could stop. Over the years, I have gone through some wicked flare-ups and eventually had a hip replacement when I was 47. I now have a wonderful doctor who is up to date on his knowledge of the treatment of RA. I am now 52 and by looking at me, you would never know I have RA. I’m on Mtx and Xeljanz. Of course, I have a few minor flares which is to be expected. BUT, I now golf and am able to go on 20 mile bike rides. Listen to your body and don’t try to be invincible and overdo it. My thoughts are with you! – Angela

  • Janet Lemay
    3 years ago

    Hi Matthew,
    Thank you for sharing your story. RA has been my biggest challenge of life, & most of us had ghost symptoms that weren’t diagnosed at first. You are young & will handle all that comes your way I’m sure. Keep sharing!
    Janet

  • Kelly Dabel moderator
    3 years ago

    Hi Matthew, Thank you so much for sharing your story! I know others in our community will relate and be encouraged by your words. Glad to hear you have a Rheumatologist you like and who sounds knowledgeable. In addition to speaking with your doctor, we have some articles here on our site that may be helpful to you if you haven’t already seen them:
    Hand Pain (with tips for managing symptoms): https://rheumatoidarthritis.net/symptoms/hand-pain-swelling-and-inflammation/
    Community Ideas: Driving with RA: https://rheumatoidarthritis.net/living/community-ideas-driving/
    and Info on Methotrexate: https://rheumatoidarthritis.net/treatment/methotrexate/
    Please let us know any questions you have, we’re here to support you. Thank you for being part of our community! Kelly Dabel, RD – Rheumatoidarthritis.net Team

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