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Central Sensitization - please share your stories

Posted by Rachel, Volunteer Mentor @rwinney, Apr 14, 2020

Hello everyone
I would like to better understand this diagnosis from personal experiences and compare what I feel to others accounts. I have not been diagnosed with central sensitization however, it seems to line up. Thank you very much and I look forward to reading your stories.
Rachel

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irr4et | @irr4et | Aug 5, 2023
In reply to @lorirenee1 "@rwinney From the heart, Rachel; after reading so many of your posts, I know that beyond..." + (show)
@lorirenee1

@rwinney From the heart, Rachel; after reading so many of your posts, I know that beyond the severe pain you feel, is the utter lack of acceptance of being sick. Try what you will, you have that spirit that wants to be well. I am there with you. I sometimes think that anything you and I can do to calm our spirit, would be the best for ourselves. We constantly learn, search, read, watch; we make ourselves crazy searching for answers. We want control of our illness. We want an answer. We want a solution. But we exhaust ourselves trying. It's bad enough that the pain is exhausting, but I do think you and I add to the burden with our quest for a solution. With neuropathy, I don't believe there are answers, except maybe, the stimulators that block pain. You learn and study so much, you could probably teach the Mayo clinic class you want to go to. No kidding. So many of us here are on a constant quest. We exhaust ourselves. Be safe and well, Rachel, and everyone.... Lori R

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Hello everyone, you prob have seen my posts on the Fibromyalgia site. I am a retired RN with huge drive to find solutions god what started as Fibro but progressed to CSS aka CPS in 2018. It progressed bc I have ongoing pain from neck nerve damage from minimally invasive bone spur surgery in 2007. And from a botched T2 epidural in 2010. And Occipital Neuralgia on left. I’ve been in pain 22yrs, too long for the brain to just “swing with the punches”. So we are a sector of pain patients in the US who are extremely discouraged that we can’t find a way to get well. Nor can drs find a cure. We all need a miracle from God but we must not get bitter. Our time of healing will come my friends! Please watch The Chosen on Prime Video or on The Chosen App. It’s about the disciples journey with Jesus the 3 Yrs of His ministry on earth, but the Jesus in the film is so wonderful, so relatable to our lives. He was the only person who ever lived who was 200%: 100% man and 100% God. So he felt all the things we humans feel. You will be so comforted, encouraged, so loved and gain so much spiritual understanding. It will carry you away from the pain u feel while sitting on ur sofa and transport you to something far more important.
As far as what therapies I’m using, they are Lyrica, medical Cannabis and a little Clonazapam at bedtime, some Magnesium Malate during the day bc that’s the form of magnesium that calms the nervous system. I have tried every other therapy with no success. Please Google Dr Ginevra Lipton who is a Dr and has Fibro herself. She has dedicated her practice to teaching others all about Fibro and how to eat to help it not aggravate it. She wrote a great manual on it, The Fibro Manual. And recently another book called Fibro Food Formula. Lots of helps thanks to her.
I am 94 pounds some days, 95 other days. due to sarcopenia. I don’t know how much of that is due to Lyrica and how much is due to cortisol staying elevated 24/7/365. Can any of you share anything about the effects of longtime use of Lyrica? TU and walk with God.

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1 reply
maddiemae | @maddiemae | Oct 22, 2023
In reply to @bonnieh218 "Me too. I was diagnosed with this a year ago. What they basically said was that..." + (show)
@bonnieh218

Me too. I was diagnosed with this a year ago. What they basically said was that I feel things 10 times more than the average person.

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Oh gosh yes. I understand that there are different sensations. Mine feels like my skin is on fire all over my torso. I had a spinal cord stimulator implanted 2 years ago and removed this past August. It didn't help and the location of the battery hurt every second of every day. I was told that the stimulator was the last option so that's it.

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maddiemae | @maddiemae | Oct 22, 2023
In reply to @irr4et "Hello everyone, you prob have seen my posts on the Fibromyalgia site. I am a retired..." + (show)
@irr4et

Hello everyone, you prob have seen my posts on the Fibromyalgia site. I am a retired RN with huge drive to find solutions god what started as Fibro but progressed to CSS aka CPS in 2018. It progressed bc I have ongoing pain from neck nerve damage from minimally invasive bone spur surgery in 2007. And from a botched T2 epidural in 2010. And Occipital Neuralgia on left. I’ve been in pain 22yrs, too long for the brain to just “swing with the punches”. So we are a sector of pain patients in the US who are extremely discouraged that we can’t find a way to get well. Nor can drs find a cure. We all need a miracle from God but we must not get bitter. Our time of healing will come my friends! Please watch The Chosen on Prime Video or on The Chosen App. It’s about the disciples journey with Jesus the 3 Yrs of His ministry on earth, but the Jesus in the film is so wonderful, so relatable to our lives. He was the only person who ever lived who was 200%: 100% man and 100% God. So he felt all the things we humans feel. You will be so comforted, encouraged, so loved and gain so much spiritual understanding. It will carry you away from the pain u feel while sitting on ur sofa and transport you to something far more important.
As far as what therapies I’m using, they are Lyrica, medical Cannabis and a little Clonazapam at bedtime, some Magnesium Malate during the day bc that’s the form of magnesium that calms the nervous system. I have tried every other therapy with no success. Please Google Dr Ginevra Lipton who is a Dr and has Fibro herself. She has dedicated her practice to teaching others all about Fibro and how to eat to help it not aggravate it. She wrote a great manual on it, The Fibro Manual. And recently another book called Fibro Food Formula. Lots of helps thanks to her.
I am 94 pounds some days, 95 other days. due to sarcopenia. I don’t know how much of that is due to Lyrica and how much is due to cortisol staying elevated 24/7/365. Can any of you share anything about the effects of longtime use of Lyrica? TU and walk with God.

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I am so sorry for all your pain. I can't even imagine 22 years of nerve pain. One of mine is CPS and now nerve pain in my lumbar area. Had spinal fusion 3 weeks ago to try to control the horrible sharp stabbing nerve pain in my thigh which prevented me from walking. I use a cane and walker now because a substantial amount of pain is still there.

Fibro is a horrible thing from what i know from friends and what I've read. For a while some docs thought I might have it before they figured out the CPS and dysautonomia (wicked) but none would commit. Every one of them told me fibro is a disease of exclusion. Anyway I don't know if anything I said was helpful but I wish you the best, that you stay strong as you struggle through this and that your faith helps you through every day.

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irr4et | @irr4et | Oct 22, 2023

Maddie, thank you for your compassion and encouragement. I am sorry for all u have had to go through. Any surgery on the spine may reduce pain and enable more mobility, but will not result in no pain. After 22 yrs I am all out of options; my drs have told me they have done all they can do. I am so tired of living in this prison of pain. My 2 children do not call me or even send comforting texts and it’s not bc I have been difficult or whiney. They say they are too busy and I must call and if they can talk Rt then they will say so. My husband however is a huge support but is at wk until 5:40. My will to just coast on like this (remember pain grows into more pain) is gone. I’m no longer functional. I’ve just started my first session with a counselor half my age; will see how it goes.

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chapanddrew8 | @chapanddrew8 | Dec 8, 2023
In reply to @rwinney "@lorirenee1 You are spot on. You've done your research! Thank you. As you define it, CPS..." + (show)
@rwinney

@lorirenee1 You are spot on. You've done your research! Thank you. As you define it, CPS targets me perfectly but, what the hell do I do about it? I understand the importance of retraining your brain. It makes perfect sense in theory but, i'm not so much a patient person that buys into all of the imagine beaches 24/7 theory. I can do that and I do, in intervals but, That omits whatever normal life for me at my age. But, beggars cant be choosers, right?

I dont know, it's very confusing and frustrating to me. I am willing and waiting to work with Mayo's pain rehab program where they can teach me or discover new things about me, but it's been months in the making and now on hold since Covid19. Also, being without weekly myofacial has taken a toll. I mildly stretch and try my best to balance use of my body with proper resting. All extremities are failing to worse proportions and am ble to do less and less. I believe it's time for physical and occupational therapy so I can learn how to not cause myself harm. It baffles me. I have alot of fear for my future.

Rachel

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Has anyone ever tested for small fiber neuropathy it would be a biopsy.

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2 replies
irr4et | @irr4et | Dec 9, 2023

I’m Irret and I thank you for this helpful information!

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 9, 2023
In reply to @chapanddrew8 "Has anyone ever tested for small fiber neuropathy it would be a biopsy." + (show)
@chapanddrew8

Has anyone ever tested for small fiber neuropathy it would be a biopsy.

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@chapanddrew8, Good evening. Yes, I have had the SFN skin biopsy. They were able to get enough material the first time on my left ankle. The test material was sent to Texas for analysis and it was quite definitive. I had a score of .09%.....not good.

This is not a painful test. It only took a few minutes and I got up and walked out. Not to worry.

Good luck to you.
Chris

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tobin | @tobin | Dec 16, 2023
In reply to @lorirenee1 "@rwinney Hi Rachel, I know that central sensitization syndrome has to do with people having amplified..." + (show)
@lorirenee1

@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

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One of my coping mechanisms is to mentally distance myself from the pain. I’m separate from the pain. It is a separate entity & not part of Me. I’ve practiced that for so long that my pain tolerance has increased and I can then use distraction (watching a movie, reading), to ignore its presence. I still feel it but it’s a long ways off & not overwhelming. I hope you have better days!

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Mentor
Rachel, Volunteer Mentor | @rwinney | Dec 20, 2023
In reply to @chapanddrew8 "Has anyone ever tested for small fiber neuropathy it would be a biopsy." + (show)
@chapanddrew8

Has anyone ever tested for small fiber neuropathy it would be a biopsy.

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Hello @chapanddrew8, thank you for your question. I've tested for small fiber neuropathy via skin punch. While I did test positive, I also was diagnosed with Central Sensitization Syndrome. CSS is sort of an umbrella to many different diagnosis from neuropathies to migraine to irritable bowel syndrome and TMJ etc. Are you familiar with CSS ?

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