Ankylosing spondylitis, losing feeling in my legs

Hello @brie, Welcome to Connect. There is another existing discussion for ankylosing spondylitis:
> Groups > Spine Health > ankylosing spondylitis
— https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/

It sounds like you are doing an excellent job advocating for your health and learning as much as you can to find out what helps. I'm sure it can be overwhelming trying to figure out what will help. Are you able to share any steps you've taken so far that help?

I did find an article that may be provide some helpful information.

Osteoporosis Management in Ankylosing Spondylitis
— https://link.springer.com/article/10.1007/s40674-016-0055-6

Hello John, thank you for the very interesting and informative articles. I have been learning as I go with this illness. One of the main steps I've taken is to learn how to manage my stress levels as stress heightens the pain and inflammation and can actually exacerbate a flare up. Through meditation and mindfulness I keep working at keeping stress at bay. Also, the draining fatigue that comes with the pain and inflammation is like a curtain that falls over the stage. When it hits, there is no keeping my eyes open. So I've learned to let myself sleep when this happens. It can be such an inconvenience to life in general, but I've learned not to fight it. It is a necessity.

@brie it sounds like you have a good plan to help manage your stress levels. There is a website that I like to use when I'm feeling a little stressed and can sneak in a few short videos by Dr. Amit Sood. I had the good fortune to hear him speak on how the brain works to handle stress and found it really interesting and helpful. He also has some great YouTube videos if you want to Google his name and videos.

Hello John. I just ordered a couple of Dr. Soods books. Thank you for the reference, I look forward to my readings.

Thanks for the feedback. Will you give us a report of how you like the book when you finish it? Thanks!

Hello. Yes, I will be happy too!

<p>I have been diagnosed with A S and therefore suffer from chronic pain and chronic fatique. In part, my skull hurts. The tip of my cranium. Not a head ache but pure pain along the top of my skull. To the point that it hurts when my hair moves. I dont understand this. One doctor suspected Fibromyalgia as a result of this type of pain. I just dont know. Anyone else have this?</p>

Hello @brie, you may notice I moved your new discussion and combined it with your existing discussion on ankylosing spondylitis. I would like to invite @anniebrook, @alrod, @therobbs, and @tspoon3 to this discussion as well to share their experience with ankylosing spondylitis. @brie, you mentioned your doctor suspects fibromyalgia may be the culprit, have they done any testing or investigated this any further?

Hello. Thank you for directing my comment. No, I ha e not done any further testing but I believe I should. The pain has become quite unbearable.

I see that many people handle this different ways. When I first got A,S they thought it was Reiters syndrome and were treating me with indocin and I ended up getting ulcers. After 8 months on bland diet I was better. I had a 5 year study at Cedars Sinai hospital by Doctor Michael Weitzman to see how A/S moves in the body. They didn't treat me just study. I had many Doctors who gave me different meds, none seem to help very much. When the pain hits I use to not move and try and stay still. My wife wanted to help , but I didn't want her to touch me. It's better , and I can handle it with the pills my Doctors is giving me. I guess I look pretty bad because people are always trying to help me , a lady wanted to load my 4 cases of water and I told her thank you so much but I can handle it , then I told her I wish there were more people like her in this world. Just a nice person. Well until next time we talk, it was nice reading your post and hope you get better , all of you.