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.
I have the typical issues but my biggest pain is when i have to sit on a chair or much worse a car seat. I wonder if someone else have this problem? the next thing is, i need to get up alot because of the pain but on the other hand i can't be up longer then 2 hours or sometimes 3 because then the pain get also worse. So i can't stand up a long time but i also can not sit to rest a little bit. I'm kinda homebound because of that. I never hear someone talk about this Kind of problems and i wonder if i'm mostly alone with this symptoms?
(I'm from germany so i apologize if my english is not correct)Your English is completely understandable, so don't worry about that! But what you described sounds incredibly draining because it’s like your body won’t let you get comfortable either way. I don’t think people talk enough about symptoms like this, so it can definitely make you feel isolated. But I’ve seen others mention similar issues with chairs, car rides, and pressure pain, especially when sitting for too long. One thing that might help is changing positions before the pain gets really bad. I’ve also heard some people say cushions, reclining back a little, heat pads, or gentle stretching can make sitting a bit more tolerable, especially in car seats. You’re definitely not alone in this, even though it probably feels that way sometimes. I hope things will get better for you soon! -Latoya (Team Member) my BIGGEST disability/ problem from my acquired traumatic spondylolisthesis and my overall current spine situation, with all of the constant severe pain, constant unpredictability of (and complete inability to prevent or control) the multi vertebral levels that now have consistent pathological, deforming, and painful vertebral slippage (listhesis) happening from almost any movement literally, combined with the accompanying symptoms that come with all of the seemingly endless new secondary diagnoses that are the direct consequences of this severely undertreated spinal mechanical instability---
My biggest concern that I don't hear many emphasize as much either is that I CANNOT SIT IN A CHAIR. I can't hold myself upright in a seated position!!!
it's as if my spine collapses somewhere mid-thoracic and I cannot engage my abdominal or hip muscles to help hold me up. If I force the effort what happens very quickly once I make my spine and ribcage and neck and head go vertical, is a cascade of symptoms seemingly related to my body's compensation mechanisms kicking in trying to help stabilize what no longer naturally neuromuscularly is, at the base and core of my body. I cant stand up for long either but I still would rather stand than sit and can last longer through the weakness and numbness I feel when standing, than I can last through the nearly instant severe spinal pain, specific muscle spasticity and rapidly induced cervical dystonia/torticollis that is evoked from every attempt at sitting before I am forced to lay back down horizontal again to wait for the neurological symptoms and all the things to lessen enough for me to maybe try to go upright again 🙁
Is this similar to what you go through with your personal symptoms?
Pain, pain more pain and stiffness throughout my entire body - base of neck through to foot pain and every body part in between! Mild incontinence, dry eyes, insomnia, fatigue, loss of independence, night sweats, chest infections, dizziness
etc. A real bundle of laughs!Trying to function through all of that takes a different kind of strength because it’s not just one symptom, it’s a constant stack of things that wear you down little by little. You never really get a full break, you just learn how to manage around it the best you can. Continue to hang in there! -Latoya (Team Member)
Back ache fatigue
Those two together can really drain you. How are you handling it? -Latoya (Team Member)
I’ve recently found out that I have cysts in my bones from my AS has anyone else have this happen?
we just found the cyst but I don’t have osteoporosis. I just assume this is from the spondylitis. I just recently moved so I have all new doctors we are just getting started. Please let us know what your doctor says. Warmly, Kathy (Team member)
