Central Sensitization - please share your stories

As a person who has lived with chronic pain and all the associated diagnostic challenges, I'll play devil's advocate - why not pursue both avenues to find a long-term solution?

Remember, we are COMPLEX beings, and it could be both.
What do you think of the idea?
Sue

I have been diagnosed with central sensitization with Interstitual Cystitis along with anxiety and depression. Does anyone know how to go about treating this?

Sandy

Hi @sandywilford, you have come to the right place to learn from others about central sensitization. You'll notice that I moved your post to this existing discussion:
- Central Sensitization - please share your stories https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

I did this so you can easily connect with fellow members like @bonnieh218 @bsrice @tara333 @cldmeyers @dk21 @skier @juliepm @tracer545 @healingone @migizii @irr4et @rachael1357 and Mentor @rwinney who have experience with central sensitization and how they have found help.

Sandy, may I ask how you were diagnosed with CSS? How are you doing?

I join you ladies in the challenges of daily living with CSS. I had Fibromyalgia for 19 Yrs and one day I escalated to CSS. How lovely 😏! I just completed two wks of IV Ketamine and all it did was block my feet neuropathy. I began to itch from it on the 7th day of ivs. This is bc I’m a mast cell releaser of histamine and possibly Tryptase. (I need further testing to see which one or both). They iv to manage CSS and my food sensitivities is a full time job. God will heal us someday 😀💕

I have Interstitual Cystitis, fibromyalgia, and severe anxiety and depression. I saw a specialist in California who said all my problems were central sensitization. I couldn’t afford keep seeing him because I live in Tn. I don’t know how to get help and I’m in extreme bladder pain. I would travel to the Mayo Clinic if it would help.

Sandy Wilford

Hey Sandy @sandywilford. I'm terribly sorry for all you're going through. The Mayo Clinic Pain Rehabilitation Center's 3 week outpatient program is offered at all 3 locations: Minnesota, Arizona and Florida. You can get started with this link and decide which location you'd prefer:

- http://mayocl.in/1mtmR63

Have you researched Mayo PRC yet? There is a lot to become familiar with. Here is information:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

And finally here is a discussion about my PRC journey that you may find helpful:

- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

I see @colleenyoung has provided you with a discussion on Central Sensitization Syndrome. Have you read through it yet? Does the conversation resonate with you and did you find it helpful to know that you are not alone?

Would the pain center help with bladder pain. Also, how do I treat the severe depression and anxiety. I can’t even get out of bed right now I’m so depressed.

Sandy

@sandywilford Is your bladder pain from an acute condition or is it chronic, lasting 3 months or longer?

Mayo Pain Rehabilitation Center treats the whole person, body and mind.

Have you participated in the following thread about Depression and Anxiety?
https://connect.mayoclinic.org/group/depression-anxiety/
I hope it helps you find comfort and support.

My bladder pain is chronic. I’ve had it over 25 years off and on. My doctors say the anxiety makes it worse. That’s why I don’t know where to start. Everyone here says I have to get depression and anxiety under control because it makes the bladder pain worse.

Sandy

@sandywilford That is absolutely correct, Sandy. Emotional and behavioral therapies can help you begin the journey towards chonic symptom management. If you think of it this way... pain originates in the brain. Self care, self love, self regulation can really impact how you feel about yourself and how you react to symptoms. Have you reached out to a therapist?