Central Sensitization - please share your stories

Rachel,
I have an appointment July 15. Hoping this will be helpful. Thanks for checking in on me.

Sandy

Jump to this post

Thank you for the article on Central Sensitization. I’ve just been told that’s what causes my bladder pain. It’s so odd, one day it’s unbearable and one day it can be more tolerable. Very hard to understand. Thank you for the info.
Sandy

Jump to this post

My situation is exactly like yours, except that I have many other conditions that are taking me down also. I also have a husband and children who don't seem to get the agony I am in 24/7. I have four dogs that I try to keep exercised when I'm not in so much pain. The loneliness is extraordinary when it comes to suffering with the kind of disease that takes you down mentally and physically. I completely understand your miseries and truly hurt for you.

Jump to this post

@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?

Jump to this post

Thank you for your reply. Your suggestion of video sharing might interest me. I will have to think about that. As to how I deal with my amusement ride it is not a merry go round. It use to be a roller coaster from hell. I don’t experience that anymore. Since life treats us all differently and the results sometimes leave permanent scares. The neurologist I see read some of my life history and most of my medical history. I call them war stories. This neurologist is a practicing Buddhist and while living in China he spent time being a monk. A very kind soul and always very optimistic about life. He referred to my life by saying I have collected too much dust. I have a different word for that. I do understand balance and energy flow and mine is out of balance. A blocked chakra he called it. This is one of the many reasons I tried acupuncture to unblock this. This part is very hard for me to explain. This acupuncturist was someone who my doctor recommended to me. She is very skilled in her art. The acupuncture was starting to help but as I might have mentioned this neurologist and my gastroenterologist did some medical things that hindered or stopped any progress. If you practice meditation you understand what the neurologist had told me. Supposedly he can read me, my energy. He also told me from what I use to experience was that I meditate at a higher level than most people. The acupuncturist also told me this. Just so you understand me a little, I have had no formal training in meditation. I first became aware of meditation while I was in college and my wrestling coach suggested that we should find other combat sports like karate or judo to help us. I chose KungFu. That is where I started meditating. You might understand this part. Both of us have CSS since early childhood. I dealt with my trauma by trying to find some place quite to calm down. I lived at that time in a forest area. Mother Nature at its finest. Quite, lots of places to walk to and animals to see. As I remember I was alone even then. It helped to calm me. The problem was I had to go home eventually and that wasn’t like that. That was the real beginning of my meditation experience. My family eventually move from there and I never was around a place like that again. From then on I was in a survival mode and I had to find places even for a short time that helped a little. Being hypersensitive at a young age and not knowing is crap. I learned about real life the hard way. Very little in the way of peace. At this point I hope you can understand what is meant by fight or flight when confronted by too much stress. Some people hide or run, I decided to fight. Basically I wasn’t given an option. That also happened at an early age. I never went looking for a fight but I didn’t run from one either. I never saw any point in doing that. This is not my genetics because I don’t see any purpose in fighting. It is a waste of time. I like being left alone. I mentioned I have two sons. One is a fighter the other one isn’t. One has been in the military for the past 20 years and the other one is a part time professional musician and a computer graphic designer. The one in the military is a math genius, and it is not me bragging, he just is. Why he chose the military is beyond me. I’m sorry, I have spent a little too much time thinking. I know when to stop, I can feel it

Jump to this post

Welcome to Connect @siackma. Thank you for joining us. I'm sorry you're dealing with so many conditions that bring you down. I understand how that feels. Have you been diagnosed with Central Sensitization Syndrome?

Connect is supportive, compassionate and encouraging, and the community gains from each others experiences and knowledge. Many come to seek answers and hope. How did you come about finding Connect?

Jump to this post

Yes I was diagnosed with Central sensitization. I recently discovered however that it's being exacerbated by a pituitary tumor. I just happened upon the site as if I was meant to find it.

Jump to this post

@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?

Jump to this post