Was anyone else so confused when diagnosed?

This is going to be long so I’m sorry for that! I was diagnosed after 2 rashes I had last fall. My Primary sent me to a specialist who did the blood tests and said I have RA. I was very confused and convinced that the tests were a result of multiple rounds of antibiotics I had taken that winter due to sinus infections and bronchitis. He gave me hydrochoroquine which I did not take. I followed up with my primary, I brought up the diagnosis and she said “you don’t have that.” Ok, great. Come this week time for my physical. She says, why haven’t you followed up with specialist? I said, well you told me I don’t have that. She claims she never said that. Oooook. She runs several blood tests, all positive again for inflammation. Alrighty then, I make follow up appointment with the specialist for September. I email him and start taking the medicine yesterday. But I am so confused by all of this. I do have many of the symptoms, mostly the accompanying stuff. Like dry eyes, dry mouth, feverish. I have had a few joint things but they usually just went away, all during this time I was not on medication. I just don’t know what to do? I read that people have to stop working after 10 years? I’m 32! Do I start saving more ? Do we not buy a house? Will this affect us getting a loan for a house? Should I not have kids? We are just starting our married life and now this! Please help! Need advice!


Community Answers
  • Richard Faust moderator
    3 months ago

    Hi ALW1821. Sorry to hear you are having these diagnostic issues, but glad you are seeking information. As Monica said, it is natural to have many questions and concerns. The good news is that, while RA is a serious systemic condition, a full and happy life is certainly possible and treatments have advanced substantially in recent years to help stem damage and control symptoms.

    You mention being diagnosed after having rashes. Most people don’t think of skin conditions in relation to RA, but as I mentioned, it is systemic and, as this article from one of our contributors discusses, skin issues can be part of RA: https://rheumatoidarthritis.net/living/skin-in-the-game/. This article from our editorial team, while not completely inclusive, gives an overview of many RA symptoms: https://rheumatoidarthritis.net/symptoms/.

    It is good that you are going to the specialist (you don’t mention if it is a rheumatologist). Monica’s suggestion of a diary is a good one. Also, this article from one of our contributors offers some suggestions of questions for the doctor: https://rheumatoidarthritis.net/living/questions-for-the-doctor/. You may also want to take someone with you to the appointment to be another set of eyes and ears.

    Concerning your questions on quality of life, everyone’s RA is different, but, as I said, many have full lives. One of our contributors wrote a series on having children with RA. My wife, Kelly Mack (a contributor here), was diagnosed at two (RA for about 40 years), has one of the more severe cases, and has worked full time her entire adult life. One of our other contributors has written a series of things she would tell her newly diagnosed self (I recommend all of them) and the first one is on the diagnosis: https://rheumatoidarthritis.net/living/no-1-its-just-a-diagnosis/. She notes “That an RA diagnosis is not the end of the world. It’s an opportunity to make things better.”

    Please know that this community is here for you. If you like, please feel free to keep us posted on how you are doing. Wishing you the best. Richard (RheumatoidArthritis.net Team)

  • Monica Y. Sengupta moderator
    3 months ago

    Hey ALW1821!! Thank you so much for reaching out!! I am so sorry you are going through this but please know you are not alone in feeling this way and all the questions you have are the exact same ones I have! (I am 28 and diagnosed at 20). These are legitimate questions and if you are potentially looking at a chronic illness yes, it will affect your life so please do not worry about asking all the questions!

    I would definitely keep the appointment with the specialist and until then I would actually journal daily about how you feel on the medication. Does it help? Are you experiencing any side effects?
    Also, anything you notice about the dry eyes, fever etc. How high is the fever, when does it start? How long does it last?

    I can only speak from my experience (and I hope others also chime in with theirs’) but I was also so confused when I was first diagnosed. Up until that point, I was totally healthy, I barely even got colds! I worried about all the same things you did because I was still in college.

    I hope you spend some time on this site, if you are interested in a particular subject you can use the search engine to find articles on that. Our contributor’s all come from different walks in life. I know many had children after their diagnosis and speak openly about their experiences. I don’t believe a health condition can affect whether you get a loan, though!

    Depending on what the specialist says your life will change a little especially in the beginning because you are trying to figure out a good medicine regime, work and live with a new chronic condition. I personally believe that living the most “normal” life is the best way to deal with this chronic illness. Sure, there are new limitations and other things to get used to but for my own sanity I need to know my life is still the same.

    I hope others also chime in with their experiences and advice. I think I answered a lot of your questions. Please let me know if you have anymore or I didn’t!! ~Monica

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