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Hi, my name is JJ5718. I'm here because I want to learn more about self care and living my best best life despite!
Today I had an appointment with my rheumatologist. A month ago they randomly took me off of Plaquenil. I take both humira and plaquenil. They didn't say why but of course I went off of it and symptoms that it fixed came back and new ones arose. When I told them what happened they said clearly I can't go off of it and that they are putting me back on it. They asked me "you didn't feel like the Plaquenil was helping before the humira right?" And I told them "it helped with some things but didn't with others and I'm confused why just the Plaquenil made me run fevers like crazy but the same thing is happening with just humira." They asked me how I felt the humira was working, I told them my shoulders have never felt better. That they don't bother me at all anymore. My hand still bothers me but my shoulders, which is what made them consider RA, are great. They were all "okay so your major joints are good, so it's everything else" pain in my hand, fevers, fatigue, red rashes on my face, insane muscle pain in my arms, burning finger tips, etc. I've had burning in the tips of my fingers on one hand since stopping the Plaquenil so they did some phsyical exam/test to see if certain movements made my finger tips burn and to see how long it took. When my finger tips started burning I was then asked if it was all of my fingers, I said yes, I was then asked if my middle finger was okay and I said no it's all of them. Then they were all "okay, then it's not carpal tunnel." They said they think the humira is all I should need for the RA but that I need the Plaquenil but they never said for what. I get patient notes from my visits from a pateint portal after my visits. My blood work and conversation about other things were included under the RA section of my notes. The symptoms I experienced because of the Plaquenil situation and the Plaquenil itself was under another section called disorder of connective tissue, which has me incredibly confused. I was initally diagnosed undifferntiated connective tissue disease when I started seeing them and then I was diagnosed with RA back in december which I know is a connective tissue disease so I'm confused why Plaquenil would be under something else other than RA since we didn't discuss anything else this time. Is Plaquenil not commonly used for RA? I'm just a little confused because they randomly took me off the Plaquenil, when I didn't respond well they seemed like they were looking for something but didn't say what and then on my patient notes it's under something other than what I know I've been diagnosed with. I know this may sound like a ton of rambling but I'm just confused. #rhuematoidarthritis #UndifferentiatedConnectiveTissueDisease
I try not to complain about my pain usually but I woke up this morning in quite a flare. I'm in pain from head to toe and my depression isn't helping. And, my car needs to be driven since I haven't done that in a good month. So my anxiety is sky rocketing. I feel like I'm getting punched from every angle. Help...
I keep trying to find the positives in a really hard time, but I feel like I am constantly backsliding. I haven’t been out in public since March and it is taking its toll. Daily head pain and severe anxiety are increasing steadily. RA flares are neverending. Today has just been tough. Let’s hope tomorrow is better.
As someone who is nearing the point in my life where having children is becoming more on the forefront of my mind, all I can do is think about all of the what ifs.
What if I am not a good mom because of my mental and chronic illnesses? What is I can’t take care of a child as I need to? What if my illnesses get passed to my children?
Is it selfish of me to have children knowing they may have the same illnesses I have?
If you were diagnosed before having children, who did you consult? I am just looking for some clarity and support in making my decision. I want children more than I can explain, but the fear is making it feel impossible.
I’m in my last week of college classes and I’m feeling physically the worst I have in a long time. I could not get out of bed most of the afternoon and evening today and I’m worried because I have a huge portfolio due on Friday that I still have a lot to do for. I don’t know what to do or which doctor to talk to about feeling better. I’m overwhelmed and was hoping others might relate.
I am super proud of myself because I was able to push through major physical pain and still made a really lovely Thanksgiving dinner for my husband and my daughter! At times the pain in my back and legs was so excruciating that I could barely stand up, but I wanted to show them that I love and appreciate them so I forged through and did it! Yay me! (So for gloating...I barely cook for us because of how hard it is. ) also, I am super grateful for all the wonderful support I've gotten here at the mighty. I wish I could have had you all to dinner...now that would truly have been awesome!❤🦃🍞🥧🍶❤💪🤗
I have a love/hate relationship with my medications 💊. I hate that I have to take them several times a day, but I love (appreciate is a better word) how they help me function. I take 17 different meds throughout the day. Just keeping up with it all is exhausting. Does anyone else feel this way?
I started working out quite vigorously to try to get in shape and see if it helped me with my pain and strength . All of a sudden I started having having this sternum breastbone pectorial and upper rib pains and then my breasts hurt. I am positive it’s costochondritis but has any one ever experienced this? My Breast r very sore ribs sternum it all hurts but I also have fibromyalgia so it could be that. What has helped you with costochondritis?