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    New Diagnosis - Nervous
    Tami46 posted:
    I am 46 years old, and have been having alot of joint pain, swelling, low grade fevers, fatigue, my doctor did the routine blood work and it came back positive and so now I am going to see a Rheumatologist. I am very scared, my hands and wrists have been hurting so bad, sometimes my knees feel like they are locked to the point where I can barely walk, I can't put any weight on my elbows without feeling pain, but when I look at my hands, they don't look any different, other than a little bit red. What will the Rheumatologist do? Will I have more tests done? What happens from this point on? Anyone with advice would be greatly appreciated.
    Thank you!
    Steffi_Feffi responded:
    Hi Tami I'm 36 and going through something very similar to you. Just wanted to let you know you aren't alone and I'm also anxiously awaiting people's responses.
    An_246765 replied to Steffi_Feffi's response:
    Hi Tami46,
    I'm so sorry to hear you're going through this but Steffi_Feffi is right, you are not alone! I was diagnosed at 25 so I understand the shock factor!

    I would expect your rheumatologist to start by asking a detailed history about your symptoms. When they started, how long they last, how they effect you, things that make them better or worse, how do you feel first thing in the morning, that sort of thing.

    A physical exam is also important, actually looking at your joints to see if there is any swelling, redness, tenderness, hopefully you don't have 'deformities' or 'funny fingers' as I like to think of them, lol.

    Depending on how long you've had symptoms your doctor may do xrays to see if there is any evidence of disease already in your bones. With prolonged active RA you can get erosions in the bone, little areas where the bone has been destroyed because of all the inflammation. I was diagnosed about 6 weeks after my symptoms started so I haven't had xrays done yet.

    You can also count on having a lot of blood work done, especially in the first visit. Lots of rheumatic diseases look similar and often times have quite a bit of overlap so I wouldn't be surprised if, based on your history and exam, your doctor works you up for a couple of different diseases. In my case I also have Sjogrens and half of my Lupus antibody work up was positive but half was negative so I'm left with the 'you don't have Lupus *yet* ' explanation, lol. I would think that once your doctor comes to a diagnoses that will cut down on the amount of blood tests he checks at your follow up appointments. The key ones seem to be the markers of inflammation or the ESR (sometimes called a SED rate) and the CRP. I believe these are the ones they follow most closely in terms of blood work to monitor disease activity while on medications.

    Which leads into the final point. I would expect you doctor to then discuss medications (either at this visit if you have a clear diagnosis or at a follow up when it's a little more clear what's going on once the blood work is back.) In terms of RA there are several medications available but it will depend on your symptoms and other health status as to which your doctor thinks is best. If you're really symptomatic now he may recommend starting on Prednisone which is wonderful in terms of helping with the pain and swelling but has it's own list of not so pleasant side effects for some people. I was on low dose prednisone (10mg or less) for 5 months and really didn't have any trouble with it but some people really hate it.

    I hope this is helpful! Hang in there, it takes a while to start feeling better but you will get there in the end! I'll be honest, I was pretty miserable for about 4 months and it took a full 7 before I really started to feel like me again but I got there in the end! I've been in remission for a year and a half now and I deal with almost no pain, only a bit of stiffness here and there. So it is possible! Wishing you all the best!
    Tami46 replied to An_246765's response:
    Thank you so much for writing back and all of the advice and information you have given me. My pain lately has been terrible, and I hate complaining about it, because there are people out there going thru way worse than this, and I feel terrible for them, and I know that this is nothing compared to some of that!

    I am very nervous, but being able to talk to others that are in the same situation and have gone thru or are going thru this helps me to understand it a little more.

    Thank you again for all of your advice, it really is greatly appreciated!
    Tami46 replied to Steffi_Feffi's response:
    I am sorry that you are going thru this at such a young age, I hope you get some answers soon also. Its nice to be able to talk to others that are going thru this or have gone thru this, to know what is on the road ahead of us. Please keep me posted on your progress.
    mommyfor2 replied to An_246765's response:
    What an awesome response 248456. I always love reading your posts as they are often the only positive ones I can find. . Very informative, thank you.
    Steffi_Feffi replied to Tami46's response:
    Hi yes its wonderful to be able to talk with people that know and understand whats to come. I sure will keep you posted and I hope you do the same.
    Tami46 replied to mommyfor2's response:
    Yes it was a great response and greatly appreciated! Can anyone tell me is extreme fatigue is part of Rheumatoid Arthritis? I am exhausted all of the time, I am trying to stay active but its really hard at times!

    Also, is burning in your feet (bottom part of your feet also) part of Rheumatoid?

    Sorry I just have so many questions and feel comfortable talking to all of you.

    Thank you
    An_246765 replied to Tami46's response:
    Yes, unfortunately fatigue can be a huge part of RA. It was a real problem for me early on. The more active the disease (more pain, more swelling, more stiffness) the worse the fatigue. I have found that as my pain improves so does the fatigue. I think it has to do with the fact that the immune system is working over time trying to kill your joints so it sucks the energy out of you. As your immune system chills out and leaves your joints alone the fatigue improves because the immune system isn't work so hard. That's how I understand it at least. I haven't found anything that really helps with it other than resting. I've pretty much had to give into fatigue and learn to be patient and realistic with myself. I have a really hard time accepting that limitation so I try instead to be proud of myself on the days I'm able to accept that limitation and not let it ruin my day. I take it as it is and look at what I was able to get done that day in spite of how I was feeling, not what I didn't get done. Now that I'm in remission the fatigue component is minimal if present at all.

    Burning in the feet is also common. RA typically attacks the smaller joints more (hands and feet vs knees and shoulders) which includes the joints in the balls of your feet. My first significant symptoms were in the balls of my feet. Now I have stiffness in my feet most mornings but early on I had a lot of pain in the joints in my feet. Personally I had more burning in my hands but a burning pain is common in RA. RA can also attack the tendons so I had a lot of pain in the palm of my hands and my palms are a little stiff in the mornings these days. If the burning gets really bad you can try soaking them in ice water, it numbs the pain for a little bit. Hot water is better if you're having significant stiffness though. I found a long shower or a hot bath in the morning helps me the most.

    Hope that helps! You're not crazy and you're not alone. Take one day at a time, one task at a time. Try to stay positive but if you need to let yourself just have a bad day feel free to take it . Everyone needs a good cry now and then before you're ready to take on the world again!
    bleeski responded:
    Hi Tami 46.My fatigue was extreme.Was taking naps.But I think we've found the right combination of meds because the fatigue is now gone (along with the pain & swelling). I can't believe how well I feel and also can't remember how long ago I felt this good so it must be a long time! Hang in there. It does get better once your meds are figured out. RA can't be cured but it can be controlled.And feel free to ask as many questions as you need. We're all here to help. Best wishes.
    Tami46 replied to An_246765's response:
    Thank you so much for all of your advice and support it really means alot!
    Tami46 replied to bleeski's response:
    Thank you for your advice. I really appreciate everything!

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