What does a flare look like for you?
Hello. I am going through the process of testing for a possible diagnosis. I had previously been diagnosed with RA due to blood test results but have never really had small joint problems. For the past 3 years or so I have been having events that pretty much disable me from doing most activities. I will start to get a little pain and stiffness in my lower back and then suddenly, overnight, I will wake up and barely be able to move. It sometimes takes 10 minutes to get out of bed. I can't put on socks or wear anything but shoes that slip on. Getting up and sitting down are very difficult. The last "event" I had lasted a little over a week and I was unable to stand up straight without support and/or walk standing up straight. It was the worst. I had been attributing these back events to other reasons, since I was told 10 years ago that based on my blood test results that I didn't have ankylosing spondylitis, but am now wondering if they might be a flare. Anyone else have similar experiences?
Often my flare will start with awful GI issues, which come out of the clear blue sky and last for about four days. Not much helps except to stay close to good plumbing. But about 4-10 hours after the start of the GI stuff, and for flares that don't have the GI involvement, the SI joints set themselves on fire, and then then the ischium, what I call my "bum bones" (the ones that you sit on in a hard chair, the ones at the bottom of those loops) joins the party. This causes such burning aching in my entire pelvis, and will send pain down the outside of my thighs. Then the fatigue becomes overwhelming, and I have a couple of days flat in bed.
I'm fortunate to have a wonderful rheumy who will call in a scrip for a month of prednisone with just a phone call, and that gives me a lot of relief very quickly.
I have a lot of trouble with my feet almost always. It's like walking on golf balls. My feet feel broken. I have to walk with shoes, even if only a slipper. Going barefoot is a trial.
Good luck to you. I'll also and that I can avoid a lot of flares by being very careful with myself, my energy, and activities. I can almost always "power myself" beyond my threshold a bit, and always, always pay dearly for that. Air travel is a balancing act!
Thanks for sharing your experience. You have to work through such a list of symptoms during your flares. Thank goodness for your rheumatologist! I'm curious about your comment, "Air travel is a balancing act." I'd love it if you started a thread in our story section, recounting your experience and how you manage. I'm sure others have interesting travel experiences as well. All the best, Kathy (Team member)
I have nerve pain in both legs and my buttocks. I really hate this pain. @
More pain/ SI joints waking me and my husband up through the night, especially as older now 66 my bladder needs emptying at 3am arghh/ pain across just above my buttocks/ walking and moving extremely painful.
I'm sorry that you are going through these symptoms. I hope you can see a doctor soon. Foot pain can be a common symptom of AS. One of our health leaders wrote about what helped him. Perhaps you could try some of these, if you haven't already. The article also mentions a British National Axial Spondylarthritis Society. Maybe they would have some resources for you. Warmly, Kathy (Team member) Hi Kathy
I hope so but with Easter nothing available at the moment.
Yes I heard about NASS but not up here no support group or help here.
I read the article
Thank you useful.
Take care
Jan
never ending
I hear you. It's exhausting feeling like the pain will never stop. How are you doing currently? -Latoya (Team Member)
