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?
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)
I have those days as well. My 4 kiddos help a lot. I have from 15 down to 2 and I'm busy most days. My "flares" last anywhere from just a day to my longest was a month and I had to be hospitalized due to not being able to move or control pain. My back literally spammed non stop. Did I mention I have fibromiagia and crohns on top of it. Ughh my life is not fun most of the time. Praying for all that suffer from this and many other diseases and disabilities.
Wow, you’re handling so much! I really admire how strong you are managing everything with AxSpA. Those flares sound super rough, and I’m sorry you’ve had to go through that kind of pain, especially ending up in the hospital. On top of that, dealing with fibromyalgia and Crohn’s must make things even tougher. I really appreciate how you’re encouraging others, and I just want to send some of that right back to you as you keep doing your best every day. It’s definitely not easy, but you’re not alone. There are lots of us who get it and are rooting for you. Keep hanging in there...you’re way stronger than you think! Warmly, Latoya (Team Member) I am so sorry your flares are interfering with your life with your family. And so glad they are helpful. All the best, Kathy (Team member)
It starts about before a day in the morning my legs get stiff I can hardly get out of the bed and my hips are hurting
I have my morning medicine on my nightstand and take it and hour before I get out of bed. This help some but nothing helps if you don't get up and move. I do have days where I can't get out of bed even with my meds then I use the heating pad or tens unit or call the doctor for steroids. Hope it helps for you!!Thanks for sharing! These are simple tips worth trying! Thank you for being part of the AxialSpondyloarthritis.net community. All the best, Kathy (Team member)
I have all of the above plus my voice is affected
becoming hoarse and croaky.I am so sorry you are going through all that. Hoping you are doing well today! All the best, Kathy (Team member)
