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?
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)
Increased pain in my lumbar spine & SI joints, worsening pain in my thoracic and cervical spine, knees, hands/wrists, enthesitis, fatigue, difficulty concentrating and communicating - often involves many areas of peripheral involvement.
Thank you for asking. I have unwavering support from my husband. However, there is no coordination of services among my doctors. And, my rheum uses a strictly medical model (My former rheum documented labs, exam, US enthesitis findings - he was awesome. It took 2 1/2 years for my current rheum READ/agree w/ his dx). Also, she and her office do not visually examine, record disease progression/activity or collaborate with me (once I took in the BASDI completed over the course of several months and a list of ADLs which were challenging - she would not even look at the papers I put on her counter!). And, they have no sources of referrals (i.e., PT, nutrition, ortho, injections, etc.). I asked my PCP for a referral - with strict instructions to request my records FIRST and once received, make the referral. He didn't. A mess ensued for now, I'm staying put. Doesn't it seem that managed care means you get to manage your own care?!? So glad you have a supportive husband. Thanks for sharing your experience. Warmly, Kathy (Team member)
Its not so much as what does an unbearable day or a debilitating night feel like, it's what does a good day feel like any more. I used to be able to count or remember what a good day was like, but after 16 years I just remember the blosson of youth.
It’s not easy to accept how much things can shift over time. Many in this community understand the feeling of looking back on simpler times while facing a very different reality. You’re not alone, and there’s still space for moments of peace and joy. So be encouraged and remain hopeful. All the best, Latoya (Team Member)
