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

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@artscaping

Wow @rwinney. Your pity party is more specific now. And you have a mission, to have and enjoy your grandchildren. I salute you and choose to participate in your mission.

It just so happens that our adopted granddaughter and her friend are here for the weekend. I was a bit nervous because of course, I want everything to be perfect. Unbelievable how joyful this experience is becoming. You just have to trust your body to at least be supportive and keep the pain down.

Como Siempre Rachel. I support your efforts. Please consider changing extremely limited to somewhat limited. There, that’s better. I am going to find a picture. Stay right there.

I'm back....these are my two adoptees for the weekend. They are the perfect grandchildren.....love the pets and then the people.

I know I will pay the price for this adventure.....I am actually in the kitchen and cooking.
So....Monday and Tuesday will be payback days.

Be content and at ease.
Chris.

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I'm right here

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I have idiopathic peripheral neuropathy and Central Pain Syndrome. I had a failed back surgery. They missed the disc L4-L5 and burned my spine. I was diagnosed with PN through nerve testing. It took a year to diagnose the CPS. This was 10 years ago. My calf pain is pretty much 24-7. I am a new member here. I am also a Member of the Central Pain Foundation FB group. You might check it out. Lots of info. I just want to say Thank You for this group. Hope you have a low pain day.

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@mill72

I have idiopathic peripheral neuropathy and Central Pain Syndrome. I had a failed back surgery. They missed the disc L4-L5 and burned my spine. I was diagnosed with PN through nerve testing. It took a year to diagnose the CPS. This was 10 years ago. My calf pain is pretty much 24-7. I am a new member here. I am also a Member of the Central Pain Foundation FB group. You might check it out. Lots of info. I just want to say Thank You for this group. Hope you have a low pain day.

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Hello @mill72 and welcome to Connect. Thank you for joining the conversation and for the helpful FB Central Pain group tip. It sounds like you've had an awful experience with failed back surgery. I'm sorry to hear that.

I appreciate your post today. May you also have a low pain day.

Be well~
Rachel

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@rwinney

@dk21 I'm happy to hear from you. I'm sorry for your diagnosis and your life changes. It's very difficult to handle. I feel exactly the same as you. Unacceptance means one of two things...either we will go against the grain by not accepting and most likely make our pain worse, or unacceptance will motivate us to look for answers, rehab, supplements and work very hard.I am a very impatient person and have been having a hard time realizing this is what I have and who I am now. I've been working hard on being in the moment and finding a positive outlook as I know that can reap benefits. My physical therapist performs myofacial release on my full body. I'm on Medicare so can only go once a week in order to stretch coverage through the year but, its not enough because he can only work on one area each week. It has been helpful and I recommend it. I will be going to Mayo Rehab in Oct and hope to learn how best to physically work my body given my conditions. Then I hope to have a plan for my PT to follow which will include occupational and physical therapy.

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@migizii I will look forward to hear about your experiences. As some of us have mentioned, being diagnosed with fibromyalgia has been difficult and any/all suggestions I find very helpful. It took me a good deal of time to find understanding that this was really true for me, but I did finally learn to accept it more. However, that means accepting the ups and downs of this chronic condition and everything that goes with it. One day or one part of a day at a time. I can enjoy what I can and let the other moments pass through as best as I can. Take care❤️

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@migizii

@migizii I will look forward to hear about your experiences. As some of us have mentioned, being diagnosed with fibromyalgia has been difficult and any/all suggestions I find very helpful. It took me a good deal of time to find understanding that this was really true for me, but I did finally learn to accept it more. However, that means accepting the ups and downs of this chronic condition and everything that goes with it. One day or one part of a day at a time. I can enjoy what I can and let the other moments pass through as best as I can. Take care❤️

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@migizii Thank you for your encouraging words.

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@artscaping

Wow @rwinney. Your pity party is more specific now. And you have a mission, to have and enjoy your grandchildren. I salute you and choose to participate in your mission.

It just so happens that our adopted granddaughter and her friend are here for the weekend. I was a bit nervous because of course, I want everything to be perfect. Unbelievable how joyful this experience is becoming. You just have to trust your body to at least be supportive and keep the pain down.

Como Siempre Rachel. I support your efforts. Please consider changing extremely limited to somewhat limited. There, that’s better. I am going to find a picture. Stay right there.

I'm back....these are my two adoptees for the weekend. They are the perfect grandchildren.....love the pets and then the people.

I know I will pay the price for this adventure.....I am actually in the kitchen and cooking.
So....Monday and Tuesday will be payback days.

Be content and at ease.
Chris.

Jump to this post

@artscaping Thank you very much for snapping me back to reality. I adore these pictures! 😍 What sweet moments for you and company. I will always get the most out of myself, just like you, and will never give up on doing the best with what I've got. I spent this evening with my son, his fiance and future in-laws to commemorate what would have been their wedding day. It was wonderful! I often say that good distraction is better than a pain pill. I hear you about your next couple of days as payback. I have to keep reminding myself that yes, the good or better moments will come at an expense but, at least we've had the good moments. Thanks again my friend.
Rachel

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@rwinney

I'm not sure how old you or others are in this discussion but, one things for sure with me in "wanting my old life back", is the fact that I've been disabled since age 46, am now 50 and I desperately want to be able to be an involved, active grandparent!! That matters most to me. My son's wedding should have been TODAY but will be next year because of Covid. I want grandbabies and it really makes me mad and breaks my heart that my malfunctions create me to be a whole new person and live an entirely different life that is extremely limited. Ughh...sorry, had to get that pity party out.

i

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@rwinney Oh Rachel, I feel for you. So many happy things can be taken for granted when we are well. I do not think there is a person on earth that works harder than you to be the best you can be. You will be a fine Grandparent some day. You may have an alternative style, but you will find a way. Why? Because you are RACHEL!!!! Love to you, Lori

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@lorirenee1

@rwinney Oh Rachel, I feel for you. So many happy things can be taken for granted when we are well. I do not think there is a person on earth that works harder than you to be the best you can be. You will be a fine Grandparent some day. You may have an alternative style, but you will find a way. Why? Because you are RACHEL!!!! Love to you, Lori

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DAMN STRAIGHT SISTER! 💕💕💕

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@lorirenee1

@rwinney Oh Rachel, I feel for you. So many happy things can be taken for granted when we are well. I do not think there is a person on earth that works harder than you to be the best you can be. You will be a fine Grandparent some day. You may have an alternative style, but you will find a way. Why? Because you are RACHEL!!!! Love to you, Lori

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@lorirenee1 Hi Lori! I'm so proud of you for being brave and trying the DRG trial. Also, for helping others by explaining the process. You are amazing and my fingers and toes are still crossed that this is a savior for your feet. 💕 May the day be beautiful and good! Here are flowers... because, you are so deserving. XO
Rachel

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@rwinney

@lorirenee1 Hi Lori! I'm so proud of you for being brave and trying the DRG trial. Also, for helping others by explaining the process. You are amazing and my fingers and toes are still crossed that this is a savior for your feet. 💕 May the day be beautiful and good! Here are flowers... because, you are so deserving. XO
Rachel

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@rwinney Awwwwww, just awwwww! The love is palpable. I am farklempt. Talk amongst yourselves. I will be posting about my DRG trial in one big post either tomorrow or the next. Going to pain doc tomorrow to take off all this DRG equipment. Decisions still to be made. Yesterday, I was just about pain free, all day. Today, not as good as yesterday, but pain at about a 4-5 level, and at times a level 3. Took half the Kratom I usually do, for good results. A very inexact science, at least for me. Stay tuned......Love to you, Lori

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