Rheumatoid Arthritis (RA) - Introduce yourself and meet others

What helped me the most on RA Warrior--I don't even know where to begin! Doctors don't educate you about the disease. They don't have time. This is the best educational source because it's accurate; it comes from an e-patient herself, Kelly Young. (You can also read about e-patient Dave; different disease.) Patients can get some of the best information from others who are well educated in their disease, i.e,. Kelly Young. Just a little background: Kelly Young advocates for the Rheumatoid community at the professional level (physicians & research). She's even advocating to change the name to Rheumatoid disease as people think it's arthritis, rather than autoimmune disease. So back to your original question. When I was first diagnosed I was scared. I found RA Warrior through reading. I caught my disease early as I was a pharmaceutical rep. When I was diagnosed, I had no symptoms, but the young rheum I had seen was so panicked, I couldn't see him again. I was panicked then, and started to research RA myself. Most information I saw said RA had bilateral symptoms. I wasn't seeing anything. I found RA Warrior in this research. One of the symptoms I read about was something I had had, but never thought to mention to the doctor as it was before I was diagnosed -- raspy voice at times, and when I'd go to church and tried to sing, nothing would come out! I found on RA Warrior that we have a joint located near the voicebox (cricoarytenoid), which when inflamed can produce these symptoms. When I started to have symptoms, they weren't bilateral. So before I digress even further, RA Warrior gave me education about real symptoms from patients that differ from one to another. I even went on a chat where Kelly had a rheumatologist on board answering some questions, which was helpful. I learned about the struggles others were having, which scared me, but prepared me mentally for the symptoms I would start having and the medications I would eventually be prescribed. This helped eliminate the panicked feeling. I don't know if I've truly answered your question, but I find it's been my best resource for accurate information. (If you read about e-patient, Dave, his life was truly saved by interacting with others who had the same disease; he didn't have much or any choices to live. He found out about a chemotherapy that most doctors didn't even offer for kidney cancer. He found an oncologist that would give it to him, and he lived to tell about it!

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I'm glad to find a group that understands RA and all the issues that go with it. I've dealt with it for approximately 20 years and have been on many different meds. Currently xeljanz, plaquinil, and arava. I only confide in a couple friends about my disease. The few times I had reached out to others I heard 'I'm tired too' and 'i have arthritis too'. My biggest struggle now is fatigue.

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Hi. Has any one had Baker's cyst (fluid retention) behind the knees. Both my knees are very swollen and painful and I was told by my primary that is from Baker's cyst. He gave me Naproxen. Anything else I can do?

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Hi @caril -- Welcome to Connect. I recently learned about RA Warrior from @fighter. Their website does have some information on RA and fatigue here:

What Causes Rheumatoid Arthritis Fatigue
-- https://rawarrior.com/what-causes-rheumatoid-arthritis-fatigue/comment-page-2/

Have you found anything that helps you manage the fatigue? @fighter and other members may have some suggestions for you.

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Hi @fighter, I, too, am a huge fan of RA Warrior, Kelly Young. Not because I have RA, but because she gave me incredible insight about what it means to live with RA and how I can be more understanding. Simple things, like not judging people by the strength of their handshake. That person may have RA. Thanks for bringing her writings into this discussion. She writes so well and really is an advocate and a warrior.

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@candrgonzalez -- I did find some exercises that may help manage symptoms from a Baker's cyst.

5 Exercises That Can Help You Manage a Baker’s Cyst
-- https://www.healthline.com/health/bakers-cyst-exercises#1

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Yes, she gets it from the patient perspective! I now understand, myself, with sore joints in my hands. I just do a light fist bump, which people think I'm joking around. The general public doesn't understand. By chance, are you related?

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