Central Sensitization - please share your stories

Posted by rwinney @rwinney, Tue, Apr 14 10:33am

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

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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@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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Would you mind sharing what led to your diagnosis @bonnieh218? Did they run tests of some sort?

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I had lots of testing to try to determine the cause of my pain. Everything came back normal. So, they gave me this label. I think that’s happening a lot when no one can figure out what’s happening. There is nothing different prescribed for pain relief. Just do the best with what you have and let them know if anything changes. 😊

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@bonnieh218

I had lots of testing to try to determine the cause of my pain. Everything came back normal. So, they gave me this label. I think that’s happening a lot when no one can figure out what’s happening. There is nothing different prescribed for pain relief. Just do the best with what you have and let them know if anything changes. 😊

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@bonnieh218 That's what I understand. Knowing, is not a game changer because it cant be treated by some magical pill or procedure designed to help or cure it. Do you mind providing examples of what happens to your body…cause and effect?

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I have osteoporosis, fibromyalgia and osteoarthritis in my feet, knees, shoulders. I have head pain; occipital neuralgia in the back up and over the top, auricular neuralgia on the left side of my face from bones sclerosis. It just strikes whenever it wants to. I have been getting injections every three months for this. I injured my knees from a fall, tears in the meniscus. Decided not to go with surgery at this point because the tear is small. I use diclofenac pain cream for that. I also use the diclofenac cream for arthritis. I had Morton’s neuroma in one foot that I did have surgery for. That helped with the pain but not the arthritis in my toes. For lower back pain and neck pain I see a chiropractor.
With so many areas of pain they like to clump everything into one so I believe that’s why they’ve come up with this new term.

Liked by rwinney, cldmeyers

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@bonnieh218

I have osteoporosis, fibromyalgia and osteoarthritis in my feet, knees, shoulders. I have head pain; occipital neuralgia in the back up and over the top, auricular neuralgia on the left side of my face from bones sclerosis. It just strikes whenever it wants to. I have been getting injections every three months for this. I injured my knees from a fall, tears in the meniscus. Decided not to go with surgery at this point because the tear is small. I use diclofenac pain cream for that. I also use the diclofenac cream for arthritis. I had Morton’s neuroma in one foot that I did have surgery for. That helped with the pain but not the arthritis in my toes. For lower back pain and neck pain I see a chiropractor.
With so many areas of pain they like to clump everything into one so I believe that’s why they’ve come up with this new term.

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I see. It makes sense that one's central nervous system can go into overdrive after so many physical ailments strike.

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You got that right.

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@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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@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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@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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@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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@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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@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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@lorirenee1 I loved your words! Perfect. Thank you for them. Rest well this evening and… may tomorrow bring you happiness. Rachel

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@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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@lorirenee1 Hello. Just wanted you to know that I woke this morning and 2 things popped into my mind…

1. your post from yesterday, which I found very real and honest, and will screen shot for future reference

2. yesterday, I called my PT and he agreed to see me today out of necessity

I have some hope for the day and that is refreshing. Day by day we go…I wish you a day of comforting thoughts, peace and love.

Thanks again for being so kind and supportive. I appreciate you.
Rachel

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@rwinney

@lorirenee1 Hello. Just wanted you to know that I woke this morning and 2 things popped into my mind…

1. your post from yesterday, which I found very real and honest, and will screen shot for future reference

2. yesterday, I called my PT and he agreed to see me today out of necessity

I have some hope for the day and that is refreshing. Day by day we go…I wish you a day of comforting thoughts, peace and love.

Thanks again for being so kind and supportive. I appreciate you.
Rachel

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@rwinney Hi again, Rachel. Your responses to me made me cry. You have one kind physical therapist to see you today. I hope that somehow, you feel better from going. Yesterday, I was filled with CBD oil and marijuana all day long, reflecting on how bizarre it was, and how I could not imagine ever enjoying marijuana. It does help with pain, and I would be nuts without it, but I am nuts with it, as well. Just trading walnuts, for pistachios, so to speak. This is a perfect example of not being able to just give in, and go with it. Let the river wind as it wishes…..Today, if I wind up needing marijuana all day, I want a different journey. One that just sails peacefully in the waters….that is my goal. I wish you release from pain. I wish you to love yourself, how you are. We all belong to God, in the end…….Lori Renee

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@lorirenee1

@rwinney Hi again, Rachel. Your responses to me made me cry. You have one kind physical therapist to see you today. I hope that somehow, you feel better from going. Yesterday, I was filled with CBD oil and marijuana all day long, reflecting on how bizarre it was, and how I could not imagine ever enjoying marijuana. It does help with pain, and I would be nuts without it, but I am nuts with it, as well. Just trading walnuts, for pistachios, so to speak. This is a perfect example of not being able to just give in, and go with it. Let the river wind as it wishes…..Today, if I wind up needing marijuana all day, I want a different journey. One that just sails peacefully in the waters….that is my goal. I wish you release from pain. I wish you to love yourself, how you are. We all belong to God, in the end…….Lori Renee

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@lorirenee1 My PT will only allow 1 patient in office at a time after which he sanitizes before the next. He and I both wore masks. He is a wonderful therapist…kind and caring…he goes the extra mile with his care and concern. That is what separates good Drs from poor Drs. He and I discussed adding occupational / physical therapy to my myofacial whilr I continue to wait to get to Mayo. I had a successful visit and really needed it after a month away. Blessed. Be well today. 🌈

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