Ankylosing spondylitis: anyone else?

I don't have this condition but there are threads on Mayo Connect dealing with it and moderators who have helpful information. If you search it using the magnifying glass icon in the upper right corner, there are several results. The link below will take you to onr of them and you'll find others.
https://connect.mayoclinic.org/discussion/diagnosed-with-ankylosing-spondylitis/?pg=1#comment-273828

I'm sorry that you're dealing with this. I don't have experience with it but wanted to point that there are several threads on Mayo Connect where people who have will some answers and a lot of support. Go to the magnifying glass icon in the upper right corner of this page and search for them. You might want to look at several to see which are currently active and/or have information about current medical approaches. I've learned a ton on Mayo Connect about things that apply to my health circumstances and become better able to get the best medical care by knowing what to ask about and hope you have the same experience.

@dexkillz Hello and welcome to Connect. I am a spine surgery patient. Other than your diagnosis, did your doctors give you any advice on how to improve your symptoms? Did they connect the swelling of veins in your hands and facial pain to this new diagnosis of ankylosing spondylitis?

What is your posture like? I'm asking this because if you have a posture of leaning forward looking at a computer screen or phone, that can contribute to swelling in the hands if you have something like thoracic outlet syndrome. I do have TOS and it can alter blood flow to the arms because the blood supply gets compressed as it travels through the shoulder area between the collar bone and rib cage. Most doctors miss this diagnosis unless you are at an interdisciplinary medical center that treats TOS. That's one of the reasons I came to Mayo because I have TOS and also needed spine surgery for a bad C5/C6 disc and had overlapping symptoms from both problems. Usually TOS is diagnosed by a thoracic vascular surgeon or neurologist. Often treatment is just physical therapy which is what I've been doing, but it takes a long time to improve, and posture is very important.

Here is some technical information on TOS:
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
With AS, it's also very important to maintain good posture. AS is an inflammatory problem and will cause arthritic bone growth in the spine resulting in the spine fusing itself. If you have poor posture, you can get stuck like that.

With our health, we have dietary choices that can reduce inflammation. This reduces the body's total burden of inflammation if you also have an inflammatory condition. This link from Spine Universe describes dietary changes for AS:
https://www.spineuniverse.com/conditions/spinal-arthritis/ankylosing-spondylitis/ankylosing-spondylitis-diet
What is your next step in treatment? Has your doctor prescribed any medication or exercises to try to help your condition?

Hello @dexkillz and welcome to Mayo Clinic Connect. I am so glad you've joined to get support in what seems to be a very challenging time for you and your health.

Because you mentioned being diagnosed with ankylosing spondylitis, I found an existing discussion to move your post into. That discussion can be found here: https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/

I did this so that you may connect with other members such as @terri672 and @alempola, along with responding to members who have already joined you to learn more and support you.

I will let you respond to @jenniferhunter to start.

hello and thanks for the response.
i'm currently in occupational therapy because i have mobility and balance problems due to this and also autism.
i have kyphosis and my head and feet are both leaning to the right, making my body kind of C-shaped.
for my veins, i really didn't receive an answer. and for my face they gave me B complex injections every two weeks.
honestly i'm just a student and can't really afford a better doctor.
my hands don't swell. they just hurt usually but so do all other bones in my body. i write all day despite the pain, so i'd say they're functionally okay, too. but the veins hurt uniquely on my hands and it feels like some sort of vasculitis? like they are on fire?
thank you again.

Yes. And I only found those words, for sure, on new paper copies of my own medical records a couple days ago. I'd wondered a few years back if that wasn't what I have. But it's along with other things, like sciatica and DDD and DJD etc. I don't know a whole lot about it. I'll watch what people answer to you. I'm sure it's been treated in me though, some years. The pain part, I mean. We keep doing one kind of treatment, then switching to another. After interventional pain injections in 2017, I was switched to chiropractic that my AMA doctors found for me. I had one year on Codine, and another on a few steroid injections again, higher up. Then, the last couple years was Gabapentin and maximum Tylenol, with Ibuprophen when it got really bad. I bought a new mattress, which isn't insignificant. I need to understand this one as much as you do, I think. I firmly believe we do better when the doctor shares his diagnosis with we patients.

Your situation sounds unbearable. But you are fortunate that Oxycodone works for you. It quit working for me last year. I haven’t tried Embrel though. I suffer with chronic SI pain (10 years) that keeps getting worse. Also bilateral hip pain (1 year) and a failed knee replacement (6 months). Recent Steroid injections in SI joints enable me to actually walk through a grocery store for the first time in a year. I have endured every medical intervention on offer and after 3 pain clinics I am told there is nothing more to offer. Yup…pain rules my life.

Hey @dexkillz, how are you doing? I just thought I'd say hello and introduce myself. I don't have any experience with ankylosing spondylitis, but I was drawn to your comment about feeling like your bones are being crushed, and remarks about burning skin sensations. I have felt like that in similar ways from having small fiber neuropathy and central sensitization syndrome, and it made me empathize with you.

You are the same age as my daughter who is also a student and writing ALL the time so that hit home for me as well. I can't even imagine. I give you all the credit in the world for persevering through your work regardless of your pain and challenges. Props to you! You should be very proud of yourself. If or when you're feeling up to it, I'm wondering how OT is going for you and what ways you've learned to manage easier so far?

Have you had a chance to look through the ankylosing spondylitis thread yet and connect with anyone?

I have had this decrease for over 40 years. I loss 7 inches of my height because I bend forward and have what they call bamboo spine. I'm on pain pills and pills for arthritis everywhere. Just this pass week I have been getting very cold legs, and it fills like it's inside because I don't fill cold when I touch them. I'm going to call Doctor tomorrow and ask when he can see me .I was suppose to get legs checked last week but wife was very sick and had to stay home with her, Has anyone had any of this what I'm posting about? Thanks for any information.

@calguy89 Hello, Welcome to Connect. I found a couple of discussions where you can meet other members who are also talking about leg symptoms with Ankylosing Spondylitis. I am a spine patient also, having had a cervical fusion. I think you will find a caring community here for support and you can share your story.

Here are some recommended discussions. In the second discussion, you may find more recently active posts with member @dexkillz

– "Ankylosing spondylitis, losing feeling in my legs" https://connect.mayoclinic.org/discussion/diagnosed-with-ankylosing-spondylitis/

_" Ankylosing Spondylitis: Anyone Else? " https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/

Jennifer