What symptoms of AS do you experience?
Chronic, long-term back pain is one of the most commonly reported health problems in the United States. Not surprisingly, back pain is also the most reported symptom by people living with axial spondyloarthritis (axSpA).
Other symptoms may also occur with axSpA, such as uveitis, fatigue, psoriasis, heel, shoulder, foot, and other joint pain.
Back of head down through neck, shoulders, elbows, joints in wrists and fingers. Spine, hips, knees, ankles and feet, toes. EVERYWHERE! The worst is in the spine where I also have several other problems such as severe Disc Disease.
Wow, that sounds incredibly intense. Experiencing pain literally everywhere and on top of severe disc issues in your spine must be exhausting both physically and mentally. How are you managing your pain currently? I'm hoping relief finds you soon! -Latoya (Team Member)
I currently take Sulfasalazine and have been taking it for years. I get Remicade Infusions every 8 weeks. Some days, I also take Arthritis Strength Tylenol. This helps with most joints. It doesn’t help with the back pain I have. I don’t want to take anything stronger as I have a fear of getting addicted. I have seen 2 different Neurosurgeons within the past 9 months. First one sent me to pain management after talking to me about 5 minutes. And said I need to do physical therapy. At the pain management clinic, I received injections in back two different times and then an Ablation procedure. None helped my pain in lower back. Last Neurosurgeon I saw spent maybe 5-8 minutes with me before referring me to yet another doctor for back injections once again. However, when I met with this new doctor, he studied my MRI from first Neurosurgeon visit, and spent much more time studying the MRI and X-rays. Then spent some time with me explaining just what all is going on with back and why he thought the prior injections didn’t work and how he thought I would be a candidate for an implant placed in back next to spine with wire leads inserted into spine. This comes with a remote to control device. After meeting with a tech with company that produces these devices and learning more, I decided to go for it. I am scheduled to do a trial for about a week to make sure it helps. If so, will get the permanent one about 4 weeks later. Everything is done as outpatient and takes just a few minutes while I am sedated. This is the first time in a very long time that I feel hopeful. I have had opportunity to talk to a few others who have had this implant and they have had good results. About 30 years ago, I had surgery due to a bad ruptured disc in lower back. Apparently, there is so much scar tissue and inflammation now, that it has prevented the injections from working properly. I am 79 years old and although I am in pretty good shape other than the back pain, I don’t think complicated major surgery would be the best for me even if a doctor would agree to it. Recovery would be terrible thing to have to go through.
Heel pain, pain in the tops and sides of my feet that feel like my feet are broken when I’m walking, hand pain, shoulder pain, ribs, my entire spine, I have horrible brain fog and my brain will shut down in the middle of a conversation, GI issues, chronic fatigue
Not yet. I just started Enbrel in November and I’m not sure it has kicked in fully yet. In fact, I told the pharmacist I thought I felt worse. She said to give it a full 6 months before I gave up on it. I am looking for all the information I can get on this disease. It’s very overwhelming. Overwhelming is the right word! One of our patient leaders wrote about how she rides "the wave of overwhelm." Maybe there'll be something in the article that might resonate with you. Six months seems like long time, but you've got my best wishes. Warmly, Kathy (Team member)
I experience brain fog, mid- and low- back pain, hip pain, pain in my neck, pain in my ischial tuberosity (sit bones), but thankfully I don’t have pain in my feet anymore. Oh, yes, I also have fatigue fairly regularly.
Thanks for sharing your experiences. And I'm so glad you've managed to control the pain in your feet. Fatigue is common among people living with AS. You may be interested in this article by one of our health leaders discussing what her rheumatologist suggested for fatigue. Does this resonate with you? Warmly, Kathy (Team member)
Heel pain, the pad of my feet, knees, SI, hands, spine, low back, ankles, etc
