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?
My first clue is I start taking naps. Then the continuous pain gets worse and pain meds don’t touch it. I usually try to bumble through before calling my rhuemy for steroids bc I hate the side effects so much: wt gain (even though it doesn’t increase my appetite anymore), insomnia, and it turns me into a total psycho. I am on biologics, was on methotrexate for years but now have some mild liver issues. Stopping work has been a life changer but I still have flares. About 5 a year, hoping that decreases. Good luck to you all. Pushing your body and stress makes AS 100 times worse but we do what we have to to survive. My body is wrecked from going 5 years longer than I should have.
Thank you for sharing a glimpse into your life with AS/AxSpA and offering up your experiences. Seeing how others encounter, treat, and cope with the disease is essential. Hoping you are managing well enough and feeling okay currently. Wishing you a low-pain day - warmly ~Rebecca (community moderator)
I am so very sorry for your pain! I suffer with AS /Dish/Osteoarthritis/Fibromyalgia and it's ever so painful! But I have a great Rheumatologist and she's in tune with her patient's! It means the world to me! All these years, and multiple surgeries, we finally found out the root cause! Thank You Jesus! My lower back/hips and neck, hands are awful with pain! Knees are stiff, I cannot walk far, but I'm still trusting in God! Hang in there! And stress will flare-up more pain, and excess sugar as well, so study your diet!
I can relate to dealing with terrible pain and weakness specifically in my neck and shoulders. I have been diagnosed with Spondyloarthritis but do not have a specific diagnosis. I am grateful that this forum is available. I am sorry to hear of your difficulties Christiana. I will pray for you.
as we all pray for you and your recovery. Thank you for finding us.
Rick Phillips
Moderator
- yes I am affected by AS this way. My back begins to hurt with a twinge, and the next day I am crippled and in pain. I would do my best to remain mobile but the pain would be excruciating. Hunched over I can barely walk. This sounds exactly like my flares. Forget about socks and underclothes - so painful to get on. Since being on a JAK, flares have eased by 80%. Hoping you get reassessed and find answers for these "events". The right treatment will get you back on your feet. As Anne-Marie stated, "Like many things, the understanding of AS has increased in the medical community over the past 10 years so it would be well worth revisiting in case what you suspect is correct." Wishing you better health and wellness. Rebecca (community moderator) thank you so much for taking the time to describe some of your symptoms. I just had xrays yesterday and then mri if xrays are inconclusive. We'll see what happens in the days and weeks to come. I've had a lot of trouble lately getting to work on time even on pretty good days. I'm just so stiff in the mornings. The last flare or event I had was in January and it was the worst ever for standing and walking. I felt like a hunched over 90 year old person. Thank you again
