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.
Jaw inflammation and my teeth had shifted a bit
Ouch- Has the jaw inflammation caused any trouble with chewing or opening your mouth, or is it mostly something you noticed from the change in your teeth? -Latoya (Team Member)
I've just started to have severe pain to my right side of my chest and in my right shoulder. My heart is normal but this takes the wind out of me. I just recently had a steroid injection to my neck n shoulder area could that be the problem
That sounds really uncomfortable, especially when the pain is strong enough to take your breath away. I wouldn’t want to guess whether the injection is connected, but it’s definitely something I’d mention to your doctor, especially since this is new and severe. Did this start after your injection, or were you already having some pain there beforehand? -Latoya (Team Member)
unfortunately everything. fully fused 22 years ago at 42. Also all GI diseases available.
Kathy.Smyser – It’s been in the 80s during the day and 60–70 at night with blue skies, then a big storm came through with a lot of rain and gray skies. The barometric pressure dropped hard. Those four days, including yesterday, were the worst pain I’ve ever had.
My nerves are so damaged. Both sciatic nerves shoot painful electricity down my legs and out my toes—it’s brutal, and every toe still hurts. The damaged C3 and C4 do the same thing: electricity shoots out my fingertips, they turn bright red, and I can’t hold or pick anything up. Every finger still aches. I can’t turn my neck in one direction, and it’s hard to even back my truck out of the driveway.
This is the most intense flare I’ve had—worse than the huge one before. Every joint is inflamed. My ankles really hurt, my knees ache, and my hips have a nerve-type pain that shoots up to my ribs (front and back), up my spine, and into my neck. My lower back is on fire. On top of the AS I already deal with chronic pain, arthritis, and neuropathy that feels like walking on marbles and then turns into hot pin-needles. RLS is also bad right now—I’m kicking my feet all the time and it’s making my legs worse. I haven’t found anything that makes it recede.
The last four days my stomach has also been a mess. I ate light but still threw up every night. Wednesday it was 1:30 a.m. after throwing up ten times, and my throat and neck are still sore from it.
I can keep going but I don’t want to sound like I’m making this up. Ask whatever you want—I’m very candid and will answer.kathy.smyser - I forgot to say my toes are always cold, when I wake up no matter if a hour or 3 hours I start shaking I’m so cold. I turn on the heat in my chair throw my robe on top of my blanket. I have Brain Fog so bad I can get mixed up. I still sell Classic Cars on phone internet etc. I was working on selling a 1970 Chevelle LS6
454/ 450 HP, Rock Crusher Transmission. It’s an all original car with all factory installed components. Seller listed that Chevelle had original engine with factory engine stamping. A buyer was very interested I told him Chevelle had replacement block that had been restamped. He wrote back I’m very confused Seller said car was all original you said it was replacement block.
I came clean shared with him about my Brain Fog and he understood. I’m still working on him buying the car. 🤷♂️ I have many more examples it drives my wife crazy when I say something she knows is wrong. Oh my vision now very bad light sensitivity so wear sunglasses in the house otherwise it hurts.
I'm 65, I was diagnosed at 20. I remember it was pretty bad the first couple years but then magically went into remission most of my adult life until the last couple years. I'm going on my fourth month on generic Humira at a huge out-of-pocket expense but my lower back pain has become almost debilitating. I don't think it's doing any good. I have a MyChart message into my rheumatologist but I'm sure any effective drugs will be hard to get approved by Insurance Company too. I'm feeling rather scared and hopeless at this point. My knees are also quite affected and I'm finding the right one locking up and giving out occasionally. Scary stuff.
Wow, that sounds like such a whirlwind with your knee progressing that quickly. And now dealing with your shoulders and hips too - that’s a lot. I’m glad you’re finally on a biologic and hopefully feeling like you have a little more hope moving forward. Fingers crossed right along with you! 🤞-Kimberli (Team Member) So sorry you're having such a hard time! FWIW, Humira did me absolutely no good, so he tried a different type of biologic which includes Cosentyx and Bimzelx (which is what I'm now on), and those work much better. Humira and like biologics are TNF inhibitors, which Cosentyx and the like are IL-17 inhibitors, so they work somewhat differently and one may work better for you than the other type. Also, I didn't REALLY get feeling a lot better until my rheum added methotrexate to the mix, which really helped not only my back pain, but all the peripheral joint pain (like ankles and elbows, for me) as well. Hope that info is something you can take to your next appointment with you -- and best of luck with your journey!
