Central Sensitization - please share your stories

my Occupational therapist at a rehab hospital said this is what i am dealing with.

@kittiecat Wow, I'm impressed that your OT came to the assumption of CSS. Do you agree, after doing your own research on CSS, and watching Dr. Sletten's explanation? Does it make sense for what you feel and are experiencing? It can be such a confusing time, not knowing what the heck causes chronic symptoms. Diagnosing CSS through trial and error and process of elimination does not make it easy like some standard testing would.

I'm happy to share the first video with you and hope it brings you clarity, direction, motivation...

Mayo Clinic Pain Rehabilitation Center: Family Day – Week 1

And I just want to say that you are not struggling alone, please know that. There is hope and I'm rooting for you!

Hey there @chelle2001 -
Here you go...

Mayo Clinic Pain Rehabilitation Center: Family Day - Week 1

If you have any questions about the program please don't hesitate to ask me. I'm no expert, but always willing to share my experience with CSS and the PRC program.

And, after watching the first video, will you have interest in the following weeks?

Dr. Christopher Stetten. I see in the above post that somebody has also watched those podcasts. It was such a relief hearing the stuff he had to say. I didn't feel nearly as alone after I listen to it.

Oh, wonderful! Yes, I completely agree with you about that feeling of not being alone or isolated after watching his podcast. How great that it made you feel that way. You certainly are not alone.

I posted a new video from Dr. Sletten above which is titled Mayo Pain Rehabilitation Center: Family Day -Week 1. It's worthing checking out if you haven't already seen it. It's from a series of 3 weekly installments educating families of the PRC participants during their 3-week rehabilitation program.

Have you found any new tips from Dr. Sletten and PRC principles that you've applied or think will help manage CSS better?

I have longtime CSS and had 33 hrs of Ketamine IV’s in May 2022, in hopes of finding a way to control pain. One of the risks is that it might cause some nerve damage. I had an allergic reaction to it during the 2nd wk and had to stop; the allergic reaction caused it’s own kind of pain and inflammation. Here it is Sept 19th and in last few days I have noticed weakness overall, but more so in my lower legs and feet. My legs ache and my feet burn. Each day it is sl worse. I fear I have nerve damage from the Ketamine IV’s. I am asking this ? to the health coach: Would the Mayo Pain Rehab Clinic in Jacksonville offer rehab for my situation? TU.

Good morning @irr4et. I'm so sorry about how you're feeling after these months of Ketamine infusions. Been there, done that. It's disappointing when a hopeful treatment doesn't provide the relief we hoped for.

I'm not an official "health coach", just a girl with a passion for helping others . Yes, my friend, I believe you are a candidate for Mayo PRC given your history of CSS, chronic symptoms and treatments losing their effectiveness, resulting in increased symptoms. If you've had the chance to watch Dr. Sletten's video about CSS, you will hear him explain about fueling the fire that burns within. What you're going through with Ketamine is an example of this.

Have you spoke with your neurologist or PCP about how Ketamine has made you feel? What do you think about a rehabilitation approach, treating the mind/body connection in a holistic way?

You are comforting. Only my husband realizes how I am bc he’s seeing it everyday. I feel much much more nerve damaged all over by the Ketamine. I have awful Occipital pain and headaches. I’m only able to be off the sofa 30 min at a time. Why didn’t the pain Dr tell me K would prob ratchet up my CSS?

I am willing to go through the Mayo program but have a major roadblock. I am used to sleeping 2:30 am to 10 am for 30 years. Plus would need to enter their program Nov 5 to 7th of this yr. In meantime, I’ll check with Medicare unless u know if they would pay in part.
TU

I tried a ketamine infusion for chronic pain only once it was the worst experience!!! I felt like I was dying. All I could see was darkness. Felt like I was in hell. Could not wait until it was over. ! I slept for 12 hours afterwards but pain was still there
Also I feel my pain issues started after I took an antibiotic called cipro. Nerve muscles tendons! Gut issues long lost. Small fiber neuropathy
It has a black box warnings

I have CSS after having two bouts of Long COVID, once in 2020 and again in 2022, the latter being much more severe, according to my Mayo doctor. Lyrica has helped the nerve pain quite a bit as does Tylenol. There is a protocol for dealing with pain for long COVID and central nervous system sensitization through the Mayo patient online education offerings, which really help: reflective practices, calming activities and mindfulness which, combined with the meds, have been really helpful.