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In the process of being diagnosed

Hi everyone! I've been struggling for about four months now with what my doctor insists is either rheumatic arthritis or lupus arthritis. I finally get to have my appointment with the rheumatologist this coming thursday, and I'm really nervous about it. I am only 21, so this is a huge shock for me. Had no idea rheumatoid arthritis could happen so young. I first noticed the pains while I was painting one day (I'm an art minor, so I'm very concerned about how these pains will affect my work in the fall too) and a flick of my wrist caused a very unusual pain. I figured I had just slept on it wrong or something, but within a week it seemed like every joint in my body was aching. My ankles, which have always been real skinny and bony, look like they're the size of a baseball on bad days. More than anything, I don't know how to deal with this sudden inability to do things I could do before with no problem. I can deal with the pain, but then there are things like how I can't go down stairs at a normal pace and it's embarrassing! I know the people I'm with and the people behind me get frustrated at how I have to do them one at a time, going sideways so I don't hurt my feet. My coworkers think I'm lazy because I don't want to get on my knees to arrange boxes or get the little ten pound box off the top shelf - is it normal to have difficulty lifting something that weighs so little because of the wrists? Sometimes I have trouble even lifting a full glass of water with one hand.. I am glad that I found this website. Hope it can make me feel less alone in all this.

  1. Entie, so sorry for the struggles you're going through. It's very frustrating and scary when you can't do the things you normally do and you find yourself needing to see a specialist like a rheumatologist. Even more so when you're only 21! Rheumatic and autoimmune diseases can strike at any age. It's natural to be nervous to see the rheumy but they are highly trained to determine what's going on and to develop a treatment plan. You might want to read about the diagnostic criteria for RA at the website I list below. You can probably find similar lists for lupus. Be sure to ask plenty of questions. Generally, a first visit will last for 45 minutes so you'll have lots of time to communicate. Your rheumy will probably examine you and call for some additional blood tests and perhaps images of your joints.

    In terms of adjusting to a new reality of a chronic disease, it can be a real shock and you wonder how life will change. That's natural and it will be a long term process. Hopefully, you'll be able to find a good treatment plan that will bring things back closer to normal. Below also is a link about the common grieving processes involved in dealing with a chronic disease.

    Please keep us posted on what you learn.

    1. Thank you for the advice. The articles were helpful, especially the grief one. I'm more and more anxious about getting to the rheumatologist, but now I think it's less out of fear of the diagnosis than really just wanting to get help. But one thing that makes me especially worried about my body, which I forgot to mention in my first post, is that I have these bright red spots all over my knees. They aren't raised or painful, like lupus rashes are supposed to be, or like bug bites - is this something that just happens? Some days there are more of them, and it seems like those are the bad days, but maybe it's just that I look at my knees more when they hurt. Can't find any information on the internet about it, so hoping maybe you or somebody else has had an experience like this. It seems really strange that it's only on my knees and nothing else.

      1. Hi Entie ~

        If you are experiencing a stranger or new symptom, the best person to speak about it with is your doctor. It sounds like you are waiting to see your rheumatologist for the first time - so maybe it would make sense to make yourself a note so you remember to ask him or her about the spots. It may also make sense to ask about lyme disease, which can present with a rash and can often have overlapping symptoms with arthritis.

        Also, I wanted to let you know that I understand what you are going through. I was diagnosed with RA at 25. It's not an easy thing to deal with at such a young age. Please remember to be as open and honest with your rheumatologist as possible, and hopefully he or she will be able to help you find a treatment plan that gets you feeling better soon!

        ~Mariah~ (Site Moderator)

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