RA symptoms and treatment
Hi,
I am new to this forum and looking for some advice please.
I was diagnosed with Palindromic arthritis when I was 26 years old. I had very painful swelling in my hands and ankles. At that time I tested positive for RF factor and CCP along with raised ESR and CRP.
Since then I have been on hydroxychloroquine.
Over the last 2 years or so my joints have become painful, sometimes with or without swelling. I can't walk for very long because of hip and knee pain, sometimes find it difficult to cut my food and I am very stiff throughout the day. Does this sound like my condition is worsening? I have scans and blood tests which come back normal or stable. If there isn't much swelling does that mean RA is stable? I am concerned because my rheumatologist said I am very like to get RA because I tested positive for RF factor and CCP. I am so fatigued and really struggling but my inflammation markers always come back slightly raised or stable.
Thank you for reading.
Pals
I hate to say it but from what you are describing it seems like you have the pretty typical RA symptoms. The fatigue, the pain, the inflammation - it is what I deal with on a daily basis for over thirty years now. RA comes in waves with worse periods and better periods and while some of us can figure out sometimes what causes these flares, a lot of times they just happen with no rhyme or reason. Such is life with RA. I know this may not have been the answer you were looking for but it's not all bad - most of us do find a routine that works for us. In the meantime though just know you are not alone, we are here to help however we can. Keep on keepin' on, DPM
Thank you for your reply.
I have an appointment with my rheumatologist in a couple of days so will discuss my symptoms with her. I have mentioned my fatigue and pain a few times but because the scans don't show any changes and blood work is stable (slightly raised), no adjustments are made. I definitely feel the pain and fatigue is getting worse. Painkillers don't seem to help much.
Sometimes I'm not sure if what I am feeling is worth mentioning. I'm worried if they can't see the swelling then I won't get help for my other symptoms. Your message has helped alot. Thank you.Hi. Thank you for your message.
I had taken photos previously but will start doing it again. I'm not sure I'll try the permanent marker though, I'll be covered 🙈.I had my appointment this morning and unfortunately nothing came of it. She said she can't feel any swelling and I seem to have full movement in my joints. When she was checking me over I told her it hurts but she did not respond. I was afraid this would happen as I am in pain and don't know what to do about it. I told her I have hip pain which stops me in my tracks, mentioned eating, walking but she just said take painkillers and exercise (I go swimming for some relief but I can't do normal exercises because it hurts). Just feels like I'm going around in circle. I was told to stay on hydroxychloroquine, exercise and that hopefully the exercise will help enough for me to stop the painkillers. She said hip pain isn't associated with RA. I felt very deflated after the appointment.
I am not sure what to do next. Thank you all for support.
oh that is so frustrating! I am sorry to hear that you had such a deflating doctor appointment. I'm a little surprised to hear that your doctor said hip pain isn't associated with RA as RA can impact any joint. (I'm sharing an article here with more information, even though you are well aware that RA can impact your hip as you're experiencing such pain. https://rheumatoidarthritis.net/symptoms/hip-swelling-and-stiffness) Would it be possible for you to change doctors? I know that isn't necessarily feasible for everyone, but if possible it might be worth seeing if there's another doctor who is more supportive and will listen to you better. Please know that we are here for you, and don't hesitate to reach out any time. Sending you gentle hugs. -- Warmly, Christine (Team Member)
, I think I'll pass on my friends "scribble art" on her feet suggestion too 😀
Have you been with your rheumatologist for awhile? My first rheumatologist was less than pleasant. He fumbled around with several drugs and couldn't land on a diagnosis. Just kept saying "You have a connective tissue disorder, I just don't know which one." I got tired of his monkeyshines, which included a long drive to a compounding pharmacy, and sought treatment with another clinic, a university clinic. My anti ccp numbers, history and exam confirmed RA.
I am so sorry your recent appointment left you feeling deflated. I know that feeling. Hang in there and be a pleasantly persistent pest if you're not happy with your treatment options and care.thanks for sharing your experience with ! It can be helpful to hear from others who've had experience with needing to find a new rheumatologist, and I'm so glad that you were able to seek treatment at another clinic, and found someone who would listen and find answers for you. Also, great tip to be "pleasantly persistent" (I think I'm going to use this more often). After all, it's your own one body and you deserve care and answers when needed. Thanks again for being a part of our community here! Wishing you a gentle day. -- Warmly, Christine (Team Member) 
When my docs ask how I'm doing, I try to be very specific about my current symptoms. I have found it helpful to specifically state "What I need your help with is ..." I try to remember to repeat it at the end of the appointment if we haven't addressed my need. "What can we do about ...?" I honestly think my docs appreciate understanding my priorities for the appointment. Jo
I had a difficult road to my RA diagnosis. Finally, the Rheumatologist ,who insisted there was no evidence for RA on exam or labs, ordered a hand ultra sound. (Just one hand, but bilateral are recommended for diagnosis). My labs had all been "mildly" elevated for over a year. Synovitis in multiple joints confirmed my diagnosis. I followed up with a new Rheumatologist who a) trusted I was honest with my symptoms and b) who I trusted to treat me. We have used periodic hand ultrasounds to monitor disease and treatment progress. I wonder if this would be a good approach for you? Jo
