Your Unexpected RA “Surprises”
We recently posted an article written by one of our community experts centered around her experience with RA, and how she has never had a shortage of surprises. Even after years of life with RA, mysterious or surprising symptoms can often crop up out of nowhere. Other times, daily symptoms may seem to get worse or change in nature, leading to a whole host of other potential unexpected issues.
We asked you in the community to reflect on some of your biggest surprises with RA, and your responses were incredible! Whether it be completely new ailments, or common problems taking on new life, here are some of your RA-related surprises.
Unexpected changes and surprises with rheumatoid arthritis
Unpredictable fatigue and persistent brain fog
- “OMG the brain fog. I will literally look at something and say, ‘I need to put that in my suitcase’ and before I can get across the room to get it, I’ve forgotten it. I can’t even keep the thought in my head long enough to make a list.”
- “Have had RA for 11 years. I used to not be tired, now all I want to do is sleep! Fatigue syndrome really bad!”
- “The fatigue and foggy brain are much worse in the last 10 years or so, I still have inflammation but joint damage and bone erosion are more prevalent now than it used to be.”
- “I do remember having pain and swelling in my joints, but it never stopped me. Now I’m fatigued all the time and can’t work, and I just turned 38.”
Surprising aches, pains, and soreness
- “Talk about surprises: I found out this week that my kneecaps are hurting so badly because they are bone on bone from all the years of using prednisone. I have my sed rate down to 5 which is great, but the damage this disease has done goes on.”
- “For a year and a half my right knee was swollen. I was so bad at one point I could barely get out of bed and get myself ready. Showering, even using the toilet was a major task and I needed a lot of time.”
Less common, but debilitating symptoms
- “More invasive and subtle GI issues, retinitis… always the ‘itis’”
- “Within the last year, I have developed episcleritis in my eyes.”
- “I’ve developed shortness of breath and sleep apnea this year. Also, diabetes. I’m still standing…in pain, but standing."
- “My third bout of shingles began yesterday. Combination of methotrexate and prednisone made immune system so weak that here came shingles. Whee”
- “I know the feeling. New aches and pains all the time. Vertigo and anemia pop up every now and then.”
- “I have gotten so many UTIs and diverticulitis… I’ve had it all…it’s a catch-22 illness.”
- “My newest addition to my arthritis, is that I now have Graves disease. It seems as the years go on, so does new symptoms and pain continue.”
Continue to let us know if any of these sentiments sound familiar, or if you’ve encountered any other completely unexpected obstacles during your battle with RA!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?