Central Sensitization - please share your stories

@siackma It's wonderful that you did find it! Lots of information to be had here.

Ugh, unfortunately acute issues exacerbate CSS so I can imagine you are uncomfortable. How much have you learned about CSS and its management to be able to do your best?

I've only done some reading and listen to a very good podcast by a guy that my doctor suggested. It was also suggested that there is a program or something somewhere way down sells that I will not go through the trouble of going to for personal reasons. Basically I'm feeling rather hopeless about all of my medical things and the dead end answers that I am getting from several doctors about all of my conditions.

Do you recall the name of the podcast you watched that your doctor recommended? I'm interested and I'm sure other members would be interested in it as well.

I'm so sorry you feel hopeless, that's an awful place to be. Are you receiving help to manage your feelings through a psychologist or therapist? Do you have supportive family or friends?

yes, i am interested in dr Sletten videos, please

Dear Rachel, I wish you could bottle this message, and we could sprinkle it into every discussion where there is chronic pain, regional pain syndrome, or CSS!
Peoples' lives could be so much more satisfying...
There is nothing worse than feeling like "I can't stand this for another minute!"

To all who suffer - how can we deliver the message to our compartmented, illness based system that we all need a holistic approach - looking at the whole patient, all their issues, and quality of life?

Sue

Thank you, Sue, for your comments. I'm certainly trying to sprinkle this message to all corners, but it's quite a challenge. If I had one super power it would be to do just that and lift people up with education, therapy and positivity giving them all the opportunity to learn and be able to fight through their challenges and find small wins and joy.

I discussed your very sentiment with Dr. Sletten while at the PRC. How can more doctors learn and work as teams together to forward progress for chronic pain/issue sufferers, beyond their own specialty lanes. Dr. Sletten is working to educate and spread his holistic mind/body connection approach beyond the Mayo Clinic walls. My hope is that one day this becomes main stream and there are accessible rehabilitation centers, covered by insurance, that will help guide people to learn how to achieve quality of life despite chronic issues.

Thank you Rachel for your message. You have mastered the art of sharing it without coming across as "Suzy Sunshine." I am also trying to spread the message.

I hope you have a great day.
Sue

@paul16
All of what you say makes complete sense. I understand where you're coming from in your physical, emotional and behavioral state. I sometimes feel like I'm living on a merry-go-round that I strive to get off but never quite can. Days feel like marathons and I do my best to moderate, modify and balance them to get the most out of myself. Do you feel that way?

This cycle is a challenge and takes a multitude of components, as you recognize throughout many of your posts, however, and that's a BIG however, things won't change unless you make changes. I say that with all due respect because I myself have to look in the mirror everyday and recognize that. It takes work. Some days a little less work for instance when there is distraction like you mention your grand kids. Its very difficult to keep focusing on positives and small wins, but that is the mindset that has to get us through or what life that is left will suck worse.

I mentioned that I graduated Mayo's Pain Rehab Center about 2 years ago and I learned many tools and strategies from Dr. Sletten. I was there for 3 weeks and at the end of each week Dr. Sletten had family day. This was the opportunity for him to address participants family or friends and educate them on what exactly we were going through in rehab, what our conditions were about, what our mental and physical state was about, what our goals were becoming, and how our family and friends could effectively participate and help us achieve our goals.

I'm privileged to have inside access to the Mayo Clinic Family Day videos and would love to share them with folks who are open to learn. They're valuable tools and while some may never be able to go to the pain rehab program itself, the next best thing are watching these videos to try and gain insight as to how best live with CSS or other chronic conditions that are not going away. In addition, family and friends are our support systems, but they do not always have a clear understanding of our conditions or how to help us. These videos offer an education for all.

Are you @paul16, or anyone else reading this post interested in watching the Mayo Clinic Pain Rehab Family Day videos by Dr. Sletten?