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.

Ever-Changing and Unpredictable Fatigue and Mental 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”

Aches and Pains Taking on Lives of Their Own
“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”

The Completely Out-of-Left-Field Surprises
“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!

Comments

View Comments (9)
  • caddymom45
    2 years ago

    I have an unexpected surprise! Everytime I took a breath, there was a squeeze on my heart! Never had this before and it lasted 24 hours!

  • Tich
    2 years ago

    My reactions to biologics were surprises that just kept coming. I had read about increased susceptibility to Shingles and Gout, both did develop after I started treatment. But the swelling, difficulty breathing through nose, anemia, depressed eGFR and dreadful eczema… well none of my doc suspected these were related to the biologics. None of them cleared my Scleritis, and we just kept changing flavors hoping one would work. Finally when I said ‘Enough!’ and stopped taking biologics then all those problems resolved, except for my old nemesis Scleritis.,. and the pain it brings. Ugh.

  • haven1823
    2 years ago

    I think the biggest surprise to RA was how it affects your whole body. Not just your joints.. how it affects your muscles, organs. How one minute you feel good. The next, you’re overcome with pain, fatigue. How the ra travels throughout or body. You never know where it will pop up. Also, comments from people who have no clue. What ra is . I was diagnosed 9 years ago. I was never sick, always healthy,ate healthy, exercised daily. Then bammmmmm. Woke up one morning with huge lumps on my wrists. Very painful. Dr treated it as tendinitis.. Two months later, he joints in my hands were swollen. Dr did all the blood work on every kind of disease you can imagine. Nothing. Not even ra showed up. Rheumatologist said it was ra. Mine seem to accelerate very quickly. Within a year I was in a wheelchair. The hip joints were gone. Two years after diagnosis I went to the Cleveland clinic in Cleveland, Ohio. Thank God I did, they put me on the right mess. I had two cmplete hip replacements. Are things perfect? No. The pain can be horrendous, the brain fog. Ugh.. the fatigue, hate it.. not sleeping, help… but I can manage it all. I have to. I have RA. BUT IT DOES NOT HAVE ME… I live a almost normal life. Lol. I am able to do my crafting, hiking, travel. But then there are days I can’t do much.

  • brickhouse
    2 years ago

    My unexpected surprises are how frequently & randomly these surprises pop-up with absolutely no rhyme or reason to them. I’ve stopped wracking my brain and behaving like Sherlock Holmes in trying to tie all the evidence together to get to a solution. As we all know, RA doesn’t work like that.

  • SongbirdTrisha
    2 years ago

    After my second infusion of Rituxan, I had a general feeling of sickness- more so than normal. I kept saying “I just don’t feel right”… two days ago, I passed out cold. I was out of it for quite a while- didn’t recognize my daughte, said a lot of strange things, etc. I don’t remember passing out or anything after that- I came fully to when the fire department put me in the ambulance.
    I have a UTI- I had no symptoms. It wrecked havoc on me. What’s scares me the most? If bacteria in my urine can cause THAT, what’s gonna happen if I get REALLY sick? I’ve been diagnosed for two years. I’m 53. And I’m scared, exhausted, and in a lot of pain. I know I’m stronger than RA, but damn…

  • marie66
    2 years ago

    Hi I had a similar experience when methotrexate masked a UTI until it was really bad. I had no symptoms and kept injecting each week, continued to lower my immune system until bang!
    Really scary experience! M x

  • Nanaamc
    2 years ago

    I was diagnosed with RA at 18. My disease was very classic for years. I’ve been on every known treatment there was, especially as new things were discovered. I had been doing a lot better since the creation of biologics, but in the past few years the “surprises” have really been piling on! Sjögren’s syndrome and all that entails, major fatigue, OA, heart & lung issues,sleep apnea, medication side effects, you name it! I feel like everyday I have new symptoms to tackle. Why didn’t anyone tell me about all this oh-so-many years ago?

  • Grannie55
    2 years ago

    How do we know if it is related to RA and not a symptom on it’s own? I thought my new symptom of neuropathy in my hands and especially my feet was my RA – very symmetrical. My rheumatologist could treat it, but I wanted to root it out a bit more and she sent me to a neurologist who asked about my diet and supplements – a first for me! I tested very high in B-6 and discontinued the supplement and slowly I got better – no symptom now 4 months later.

  • sharoncookie57
    2 years ago

    Wow! I wonder what mine are. I take all kinds of supplements.

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