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Pain in the butt - Can't sit down

Chronic Pain | Last Active: Sep 23 9:49am | Replies (336)

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@downton

I have been dealing with this for thirteen years now. It started abruptly one day when I sat down. I had always been very active in addition to being a nurse for many years. I have been everywhere all over the country-had all kinds of tests-a couple of surgeries I wish I had not done, I am so sorry to say-nothing has helped me. I do have AS and recently have been diagnosed with what is called metastatic crohns. I may be starting on a biologic,stalera. Hoping by some way outside chance this might help. Best to you all in this very difficult journey that I feel stole so much of me and my life. I try to keep pushing thru but do less and less.

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Replies to "I have been dealing with this for thirteen years now. It started abruptly one day when..."

Has anyone seen Tarlov cysts (also known as perineural cysts)? Request your records and look through your imaging reports. Most doctors refuse to believe that they cause issues but they do when they grow a little larger. I have 5-6 of them compressing the nerves in my sacral area. I cannot sit on my right butt cheek at all and bending is nearly impossible. The compression is causing issues with everything below the waist and the inflammation is causing numerous issues above the waist as well.

I used to have Fentanyl patches but was switched to Ketamine troches (dissolve under the tongue) as an opioid alternative. IT WORKS for all kinds of pain, especially the nerve pain for me. I also take gabapentin, tramadol, and baclofen but the ketamine is the best pain relief I've had in 17 years!!

I am a retired RN, too. Surely am going to pray for you, dearest. I KNOW U R strong. (( Hugs))!

@downton Welcome to Mayo Clinic Connect. It must be extremely difficult to go from being active to having multiple ongoing health issues.

I'm wondering if you might also be interested in the...
- Digestive Health group https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

There you can connect with other members like @dval @eden @guener @sandyjr that are discussing Crohn's Disease.

May I ask what AS stand for?

@downton
Hi, I too, in addition to @erikas am curious as to what AS is. I do see online that there is an illness called Ankylosing spondylitis, is that what you have? Here is the link from Mayo about it:
https://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/symptoms-causes/syc-20354808
If this is what you have, does it cause you much pain from the fusing of the vertebrae? Just wondering how severe it is your case, and how you deal with it, meaning both the condition itself as well as the pain? And one of the problems it causes is difficulty in being able to sit comfortably, or at all?

Best to you, Hank