Changes….

Hello all. I am new to this forum. I have yet to receive a diagnosis for the crazy changes that have been going on with my body for the past 10 years. I have my first rheumatology appointment next week. At first my MD thought that maybe I have Lupus, but after the blood work they are leaning toward RA. I knew nothing about either of those and even though I still don’t know a lot, I’ve learned some through research. I was very surprised as I am in my very early 30s and I had no clue RA onset can occur during a wide range of ages. What has bothered me the most about my health changes so far is that they have happened so quickly. While I’ve always had wide spread leg pain, it has gotten much worse in the past six months. One morning recently I woke up to find my hips and legs hurting so badly that my husband had to help me out of bed. I ended up having to call into work because I couldn’t manage the pain of walking much. The pain has spread to my hands, arms, and neck. I swell very badly in my ankles and hands and some days I can’t open my toddlers sippy cup without struggle. I’m thankful to find a group for support. I’ve already been told by a coworker “but you don’t look sick“. I almost cried. Since this will be my first rheumatologist visit I’m hoping some of you can share with me what to expect. Thanks!

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Comments

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  • TeamPokey
    2 years ago

    Savedbygrace I’m sorry to hear about your diagnosis. It is always difficult to receive such news, but I’m sure there is a small relief in finally knowing what is causing your medical issues.

    The articles on this site regarding attending the rheumy’s office are really informative, but I think most of all, bring your most educated self to your doctor appointment. Take notes on your symptoms and when they are better or worse, and anything that you feel warrants attention. Read and learn as much about the medications that RA patients are prescribed BEFORE your doc prescribes them so you have a better understanding of the side effects and efficacy of them before they’re even prescribed to you. You’ll be able to make informed decisions about your health and your future by taking those extra steps beforehand.

  • Carla Kienast
    2 years ago

    Savedbygrace: first, I’m sorry you’re having such pain. And while an RA diagnosis isn’t great news, it does identify what’s been going on and opens the door to treatment plans that help you feel better and continue to live a full life. But, I know. It’s hard to breathe and not to panic. All medications, even simple aspirin, have some side effects. Many people (me included) have had few if any. My worst problem was that one medication made my straight hair curly. 🙂 (Seriously.) But NOT treating your RA is not a good decision. Work with your rheumatologist and come back here anytime we can help. We’re pretty much proof of good, productive lives even after the diagnosis.

  • Savedbygrace author
    2 years ago

    Today, I officially received my RA diagnosis. I am a bundle of emotions right now. All ranging from sadness to guilt for feeling sad about it because there are others who have it so much worse than me. And there’s the “what ifs” and then “what will happen now” worries. My rheumatologist wants to start me on Methotrexate right away..but I want to try other options first so I’m going to call them tomorrow and see what other options I have. As I understand Methotrexate Is strong and has more side effects?? I’m also dealing with being at high risk for blood clots as my levels are up again (I’ve had a blood clot before). I’m thankful to have found support here and I’ll try in my future posts not to complain so much….just needed some time vent after today. Thanks for the support!

  • Richard Faust moderator
    2 years ago

    Sorry to hear that you are having these difficulties Savedbygrace, but glad you have sought out a community that can offer information and support. As you go prepare for the diagnostic process, this article from our editorial team, which goes into detail on the steps for diagnosing RA, may be useful: https://rheumatoidarthritis.net/diagnosis/.

    Please know that if you do receive an RA diagnosis that there have been many recent advances in treatments and that you can live a full and happy life. In this article one of our contributors, Kelly Mack (full disclosure – I’m her husband), who has had RA for most of her life looks at how treatments have changed for the better over time: https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/.

    If you do reach the point where you have to consider treatment options, this article from our editorial team gives an overview of options, with links to more specific information, that may be useful: https://rheumatoidarthritis.net/treatment/.

    Also, you may like this article from one of our contributors on how a positive attitude can help dramatically in managing RA: https://rheumatoidarthritis.net/living/attitude-is-everything/.

    Wishing you the best with your appointment. Please keep us posted on how you are doing and know you are always welcome here. Richard (RheumatoidArthritis.net Team)

  • Dave
    2 years ago

    Savedbygrace, I am very sorry to hear that you are having such a hard time. I am glad that you came to this group. You will find a lot of the support and understanding that you desperately need right here. I am also very glad to hear that you have an upcoming visit with a rheumatologist. If it is in fact RA, I am sure that you will get a diagnosis and a treatment plan will be made available to you. I am about 2 years post-diagnosis myself and at the very best, RA is a roller-coaster ride that can be bumpy at times even with the best meds and a good treatment plan. Meds tend to work and them sometimes they cease to be beneficial. I am about to start my third biologic. The 1st one worked for about 3 months, the 2nd one worked really great for about a year and then just abruptly stopped working. The ride can be scary at times and there are plenty of ups and downs. I am wishing you the very best and hope that you get some answers very soon. There are folks here who care about each other. I have found the support here to be an encouragement. It helps just to know that someone understands what we are going through. I have about gotten used to the lack of understanding from “normal” people. They just don’t understand and realistically most of them probably never will! God bless you and please let us know how the visit with the Rheumatologist goes. Regards, Dave.

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