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Ankylosing spondylitis: anyone else?

Spine Health | Last Active: Dec 1 11:25am | Replies (82)

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@dexkillz

hello.
do you know the feeling when someone closes the door on your hand/foot with a lot of force? it feels like your bones are being crushed. i have that pain almost constantly and diffusely in many bones. the veins in my hands also swell and hurt a lot. and i have a burning sensation in my skin, especially face, when touching most surfaces.
i was diagnosed with ankylosing spondylitis based on a nuclear scan of my spine that showed hot spots in my sacroiliac joints. i'm 21 and this is disabling me. just looking for input.

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Replies to "hello. do you know the feeling when someone closes the door on your hand/foot with a..."

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.