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?
Increased pain in hips/back, fatigue, feel like I have the flu and pain in areas not usually associated with axspa.
I’m so sorry you’re dealing with all of that on top of your usual symptoms. Make sure you rest as much as you can, stay hydrated, and keep your doctors updated about the changes. Sending lots of strength and gentle hugs your way. 💙 -Latoya (Team Member)
unrelenting pain that can on all of a sundden
I am so sorry you are dealing with this. Do you find that when you have sudden pain, people don't always take it seriously? One of our health leaders who also deals with sudden pain wrote about this frustration in this article. All the best, Kathy (Team member) I know the unpredictability has to be one of the hardest parts. I hate it's so painful for you. Sending relief and gentle thoughts your way 💙 Stay encouraged, Latoya (Team Member)
Drowning in pain - from the top of my head to the sole of my feet - unable to move - I keep reminding myself that after 3 or 4 days I will suddenly be out of it - 25 years of AS has taught me this.
I can’t imagine how draining that must feel. I truly hate you have to deal with this and continue to after 25 years. I admire how you’ve learned to pace yourself with AS over the years and I'm curious to know...what helps you hold on during those peak flare days? Thanks in advance, -Latoya (Team Member)
I've had similar flares where it can take me up to 20 minutes to get out of bed because I can't move my back. I try rolling left or right (I sleep on my back) until I can finally get on my side. Sometimes the pain is so excruciating I'm in tears, and sometimes my costochondritis flares at the same time - the first time that happened I was certain I was having a heart attack! Thankfully, I wasn't.
My flares can last several days or several months. When I first started having symptoms I was in my late 20s and I was diagnosed with Chronic Sacroiliitis, but no referral to rheum. Now I'm in my early 50s, I'm still not officially diagnosed, and my flares are more frequent and more intense than they've ever been in the past - or I'm just getting older and maybe my tolerance after 20+ years of chronic pain isn't what it used to be.
I've tried a lot of different things - anti-inflammatory diet (hard to quantify whether or not it's working, but I'm able to maintain a healthy weight on it), chiropractic (been going since my late 20s, and it may be why I've had little progression), acupuncture (helps with pain during a flare), massage therapy (no bueno during a flare), posture braces, insoles, new mattress trials (yes, for a while I even thought my bed was the culprit!!), meditation, mindfulness training, anti-inflammatory herbal tinctures. You name it, I've tried it! If someone told me skydiving would help, I'd give it a go! I've found it's a lot of trial and error and what works for one person won't necessarily work for someone else because every body is different. One of the worst things for me during a flare is getting up the stairs or trying to pick up something off the floor. It's painful and frustrating. I have to make freezer meals when I feel well because I can't "make myself" cook during a flare. One of the pitfalls of living alone, I guess.
One of the pitfalls of rheumatology in my experience so far (I've been to 3) is that if you mention "spondyloarthritis" they automatically jump to AS (ankylosing spondylitis) despite there being an entire spectrum of spondyloarthropothies. I've yet to have a rheumatologist want to diagnose without strong imaging support (I don't have that), a positive HLA-B27 (I'm negative) or a blood test showing inflammatory markers are high (not everybody has these, especially those of us who have had chronic inflammation over many years - there are studies that support this). What I do have is a strong family history, early insidious onset (27 with no injury or strain to attribute the pain to), pain lasting more than 3 months that improves with movement but not with rest. I also have costochondritis and enthesitis, so it really shouldn't be this hard. In any case, I wish you all the best and hope that you are able to get a diagnosis that can provide a treatment that will bring you the relief you deserve!You've been through it! Thank you for sharing your experience. You are correct in noting the difficulties of getting a proper diagnosis. (And it's even harder for women!) Do you think you've run across the old myth that AS is a disease that only affects men? In any case, it is often up to each person to advocate for themselves with their doctors. All the best, Kathy (Team member)
