Yes. Weakness in my legs started 1st and then gradually into my arms. I had several nerve tests with no conclusive results long before I was diagnosed with AS. My legs would periodically give out and on bad days, they shake back and forth and I struggle with balance. This initially led to getting tested for MS. Then, with the right dr, was diagnosed with AS, after 10+ years of worsening symptoms and no diagnosis for what was happening. Now I know the muscle weakness is part of AS (diagnosed a yr ago). My dr is focusing on resolving pain issues first. Then, once we have that semi-controlled will work on the muscle weakness. Just listen to your body. I found that if I pushed it physically one day, my only way to recover was to take a nap. It would take me a few days to bounce back. I learned that it is ok to order groceries online vs wearing myself out shopping. It is ok to get shuttled from gate to gate at the airport. I pick my battles.

Thanks GsTip. I am fighting so hard to be “normal”. Although to be fair I have never been normal! 😂 I feel a little better talking to you guys and realizing this should be in the symptom category.
I feel for you about giving up stuff. I went fishing with my husband and son last spring and paid for it for 2 weeks. Not even sure why that started a flare? Maybe the cold temp.? That is all I can think of.
I have started to chop my chores up. If I want to make a pie I make the crust one day and the pie the next. My husband does all the grocery shopping. I used to do so much and just cry at how much I have slowed down. I used to feel like a bad mom and bad wife. Since being diagnosed in September 2022 I no longer do that. I do what I can and the rest can kiss my AS!! 🤣

I kw what you're feeling too! If I have to stand for more than a few mins, my legs start hurting so bad, I can barely stand it!! I have to sit when talking to people, 'cause I cn't see when standing!!! I hate it, but ... I cld be worse:) Enjoy your night friends. Stay safe & painfree...😊

Thank you Virginia. It seems like this is not really a rare symptom. I have asked so many doctors about it and none of the can tell me. It sure is a menace though. I understand about the legs or legs just giving out. It is scary but thankfully it doesn’t happen that often. Thank you for the reply and sending you a gentle hug.

Thank you Danielle S. I also had the nerve tests. The only thing it showed was mild nerve damage C6-7. That wasn’t surprising since I had Myelopathy for awhile before having neck surgery. That weakness/shaky feeling drives me crazy sometimes. I definitely listen to my body a lot more now.