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Coming to Terms

I am 32 years old and was diagnosed 2 years ago. It began with pain in my feet that got worse as the weeks went on. I also had a small bit of psoriasis on my scalp. The doctors were superb and referred me to rheumatology straight away. I also got my diagnosis within 6 months. As time has gone on my symptoms seem to be getting worse. I am struggling with chest infections, ear, sinus, etc. due to the immunosuppressant drugs I’m on. So I get antibiotics then due to the imbalance of bacteria I get thrush that is resistant to the treatment! I’m changing meds to see if it will help but getting flare ups too. I tend to find with the flare ups I can have it in 1 joint 1 day then it seems to move around. I get shooting pains down my arms as well has swollen hands feet, elbows, knees, etc. I’ve had it in my jaws too. I tested anti CCP positive but not really sure what that means. I also have hard boney lumps in my fingers that have developed over the past year. I find I can get through the week at work but by the time Saturday comes I’m exhausted. I’ve also withdrawn from people too. I haven’t really come to terms with it as I still kid myself that it’s going to ‘get sorted’ and I’m fine. But I’m not! My psoriasis is not bad though. I don’t think anyone else really understands what it’s like because know one can really see what’s going on, it’s a bit lonely really. It scares me when I think of the future.

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  • BecSimpson
    2 years ago

    Hey Sam
    Your story is very similar to mine! I am 32 as well, just been diagnosed in the last 3 months, with the pain and fatigue hitting me severely.

    Every day i find another symptom or effect that changes my life. Coming to terms with a life long diagnosis is the hardest part! I also have socially withdrawn, and finding support not always coming from those people you would thing!


  • petospec
    3 years ago

    I was diagnosed a month ago after six years of unconnected symptoms. You are not alone in this struggle. I understand the fear of the future. Please don’t withdraw from people. We need others to encourage us and who help us get our mind off of ourselves and our pain. I have the boney lumps multiplying. The changes in my hands are enough to scare me. Will they ever go away or diminish? I am in the stage where I am sorting through the information of medications, supplements, and diet changes. Not sure which way to go. You are young. Do you have family or friends to share your burden?

  • Samcurrie24 author
    3 years ago

    Thanks for your reply! Yes I have family and I was recently married, but I don’t want to go on about it all the time. But I also know that keeping it all in is not good either. I can relate to how you feel about the hands, it’s scary how quickly the symptoms seem to come!

  • Rebecca moderator
    3 years ago

    Hi Samcurrie24 and thank you so much for submitting your story. I’m glad you found us and please know that while it feels like no one else understands, the members here *do*.

    I wanted to also just respond to your comment that you weren’t really sure what testing positive for anti-CCP means. I really encourage you to reach out to your doctor — who should be explaining this to you. In the meantime, here is some more information on that particular test result:

  • Samcurrie24 author
    3 years ago

    Thank you for sharing the link! That’s shed some light but I think I absolutely need to speak with my doc about it.

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