Central Sensitization - please share your stories

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?

Rachel I’ve been hoping for further communication with you about my severe CSS. I feel so I’ll, like I’m headed toward dying - I have such weakness, neck pain, upper bk pain, burning headache, body aches and heaviness all over that I’m on the sofa most of the day. I do get up once ev 30 min for a short time. Adrenal exhaustion. Daytime sleepiness and sleepy after meals. I’m down to 96 pounds. My normal wt is 118. My BMI is 16. My PCP would be totally willing to refer me. Winters are horrible for me and I go to the Clearwater area then Nov 18 - May 31.. I do get some lessening of my symptoms there except Jan through May are horrible suffering which means I have to use more prescription meds for sleep.
Then I have more memory problems. I so terribly need help.

I have had excellent care over the last 21 Yrs but everything has been tried except help at the Pain Rehab Center. I am in a critical point where I have horrible flares following times I do things like walk moderate pace two miles or clean a bathroom. I had an epidural at T3 in 2010 and my Rt leg flew up when I felt a severe electric shock shoot down my Rt hip, leg and foot, especially the heel. It shocked me a little in the left heel also. Obviously the dr stuck the needle into my spine too deeply. I lost 50% of my Rt hip flute and some of the muscle on the far Rt lower side where it connects with the ankle. Just this last mo I have started having nerve pain in my Rt foot when I walk. I think this injury adds to my flare situation. Do u?
I do not have a physical therapist bc every time I wk with one the flare are so painful that pain is breaking down my body. My skin flakes and wrinkles so badly.
Since

My PCP told me daily increased cortisol which comes with chronic pain causes muscle steal which I do have. I am going to do better re gentle exercise and find my tolerance level. I forgot to say that I was gluten intolerant 30 Yrs before I was diagnosed so my Villi absorption of nutrients is prob poor (I am gluten free), plus I have Pancreatic insufficiency (I do take prescription digestive enzymes). Therefore I’ve lost a lot of muscle.

@rwinney Hi Rachel, I know that central sensitization syndrome has to do with people having amplified pain due to the brain's faulty working. The brain turns up the volume in the pain level for really no reason at all. The brain is not working right, and does this. Treatment for central sensitization is basically retraining your brain to turn down the volume/remove the pain. It might effect your senses, also, like being ultra sensitive to light, or sound, and thus, you retrain your brain, that you can stand the light or sound. That you are ok. Fabulous educators/doctors on this subject are Lorimer Moseley and Jonathan Kuttner, both doctors from Australia. I have read ALL of their books and seen all their videos on youtube about managing pain. I have also had a free consultation, via the computer, assessing my pain, from Jonathan Kuttner's daughter, Naomi, right from Australia, to me, in Illinois. Naomi basically said that the retraining of the brain, when it comes to neuropathic pain, is intensely challenging. I wanted to take one of her dad's on line pain classes, and she basically said that there is no telling whether it would work. Therefore, I did not take it. Tapping away pain is in the same thread, so to speak, because it also tries to retrain the brain not to amplify pain. I am in pain so often, that I would basically be trying to turn down the amplification of my pain, ALL DAY. I would be telling my brain that there is no reason for giving me pain, I would be fantasizing a lovely sun, where my pain is. I would be letting my brain know it can stop working so hard to let me know I am in danger, and give me pain, to prove it. I would be telling my brain to chill out, and stop sending pain messages. I could do this, all day, and the nerve pain would laugh and say, "Hey lady! Gotya! Ya can't escape me!!!!! Ha!" Such is neuropathy. A bear. A beast. The boogie man in the closet..... Lori M

i have been in and out of emergency rooms and spine centers for 20 years. Only recently it was a APRN, DNP that concluded it was CSS. i have had instances where i can not even get my body out of bed or off the floor. My last major incident i merely stepped off a curb and it felt like i was hit by lightning. i was immobilized on the ground but was lucky enough to have some construction workers near by to assist me up and it took a couple friends of mine to put me in the vehicle and take me to the nearest ER. There they pumped me full of solumedrol and tordol and told me to rest. ALL my mri imaging that was reviewed by MD's only showed mild scoliosis and straightening of lumbar region as well as degeneration and spurring. i use a device to put my socks on every morning when i feel like i need socks. i can not stand for more that 30 min or sit for more than an hour without extreme escalationg pain. The head of neurosurgery said plainly "you have a Piece of shit back" there is nothing surgical we can do. Go home and dont even do physical therapy until you can stand up straight. That was a year ago and i am still compensating for the pain by putting all my weight on one leg which is causing numerous other issues. Was turned down for disability last week even though i can not get the dishwasher unloaded without taking at least one break to let my muscles relax. i am currently now in PT with a very good provider. They would not even do light tissue massage on my first visit because of the extreme number of spasms and contractions i was having even after just waking up that morning.

nowhere for css patients to go for support. Not sure how carpal tunnel qualifies as a disabling condition and css does not but i am now on the road to losing my mouse, vehicles and sanity dealing with this as i have not vbeen able to work since 2/2021

i have been in and out of emergency rooms and spine centers for 20 years. Only recently it was a APRN, DNP that concluded it was CSS. i have had instances where i can not even get my body out of bed or off the floor. My last major incident i merely stepped off a curb and it felt like i was hit by lightning. i was immobilized on the ground but was lucky enough to have some construction workers near by to assist me up and it took a couple friends of mine to put me in the vehicle and take me to the nearest ER. There they pumped me full of solumedrol and tordol and told me to rest. ALL my mri imaging that was reviewed by MD's only showed mild scoliosis and straightening of lumbar region as well as degeneration and spurring. i use a device to put my socks on every morning when i feel like i need socks. i can not stand for more that 30 min or sit for more than an hour without extreme escalationg pain. The head of neurosurgery said plainly "you have a Piece of shit back" there is nothing surgical we can do. Go home and dont even do physical therapy until you can stand up straight. That was a year ago and i am still compensating for the pain by putting all my weight on one leg which is causing numerous other issues. Was turned down for disability last week even though i can not get the dishwasher unloaded without taking at least one break to let my muscles relax. i am currently now in PT with a very good provider. They would not even do light tissue massage on my first visit because of the extreme number of spasms and contractions i was having even after just waking up that morning.

nowhere for css patients to go for support. Not sure how carpal tunnel qualifies as a disabling condition and css does not but i am now on the road to losing my mouse, vehicles and sanity dealing with this as i have not vbeen able to work since 2/2021