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.

@skier

Does the Mayo Clinic PRP teach mindful meditation techniques to help participating patients overcome CSS's emotional distress and negative behavioral response functions?

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Hi Roger, You'll notice that I moved your message to this discussion where members are talking about Central Sensitization Syndrome.

To learn more about the use of mindful meditation techniques at Mayo's Pain Rehab Program, I'd like to also invite @rwinney @iriahmak @goldleaf @healingone @menville @kelseylmontague and @legalese1972 into the discussion. While you wait to hear more, you can read more about their experiences in this discussion:
- Has anyone been diagnosed with Central Sensitization? https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/

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@colleenyoung

Hi Roger, You'll notice that I moved your message to this discussion where members are talking about Central Sensitization Syndrome.

To learn more about the use of mindful meditation techniques at Mayo's Pain Rehab Program, I'd like to also invite @rwinney @iriahmak @goldleaf @healingone @menville @kelseylmontague and @legalese1972 into the discussion. While you wait to hear more, you can read more about their experiences in this discussion:
- Has anyone been diagnosed with Central Sensitization? https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/

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Thanks Colleen, for initiating the meditation discussion as it relates to Mayo's PRP.

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@skier

Does the Mayo Clinic PRP teach mindful meditation techniques to help participating patients overcome CSS's emotional distress and negative behavioral response functions?

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@skier That would be a big YES! PRC teaches a multitude of coping mechanisms from learning how to properly breathe and relax through bio feedback sessions, imagery, daily morning stretches, therapeutic physical therapy and cardio sessions on a recumbent bike to promote safe physical activity and produce endorphins naturally to the brain. Occupational therapy sessions teach you how to work smarter, not harder with your body. Nutrition is covered as to understand the foods that help, not provoke CSS. Last but not least, Cognitive Behavioral Therapy. I can not say enough about these daily sessions. They were most helpful to explore self care, acceptance, anger, depression, dependency, anxiety, stress management/reducers, difficult day planning, scheduling, problem solving, habits and behaviors. And of course the scientific and medical teachings of central sensitization and chronic pain, by Dr. Sletten, was invaluable.

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@rwinney

@skier That would be a big YES! PRC teaches a multitude of coping mechanisms from learning how to properly breathe and relax through bio feedback sessions, imagery, daily morning stretches, therapeutic physical therapy and cardio sessions on a recumbent bike to promote safe physical activity and produce endorphins naturally to the brain. Occupational therapy sessions teach you how to work smarter, not harder with your body. Nutrition is covered as to understand the foods that help, not provoke CSS. Last but not least, Cognitive Behavioral Therapy. I can not say enough about these daily sessions. They were most helpful to explore self care, acceptance, anger, depression, dependency, anxiety, stress management/reducers, difficult day planning, scheduling, problem solving, habits and behaviors. And of course the scientific and medical teachings of central sensitization and chronic pain, by Dr. Sletten, was invaluable.

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Thanks Rachel for your detailed comments about the program, very informative. I'm trying to get accepted for the PRP.

Does one have to be diagnosed as having CSS before being admitted into the program?

thanks again.

Roger (@skier)

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@skier

Thanks Rachel for your detailed comments about the program, very informative. I'm trying to get accepted for the PRP.

Does one have to be diagnosed as having CSS before being admitted into the program?

thanks again.

Roger (@skier)

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@skier Yes, you do need to be diagnosed in order to be accepted. Mayo will require your medical records for review first. The next step is being interviewed. My interviews were via Zoom with Mayo's medical Dr and Dr. Sletten.

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@rwinney

@skier Yes, you do need to be diagnosed in order to be accepted. Mayo will require your medical records for review first. The next step is being interviewed. My interviews were via Zoom with Mayo's medical Dr and Dr. Sletten.

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Rachel, thanks for the immediate rely. My primary physician is in the process of submitting my referral. I'm assuming sending my medical records is part of the first step. I'll be attending the Rochester Mayo, if accepted.

thanks,

@skier

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@dk21

Hi Rachel & Renee-
Thank you for your posts. I’ve been searching for answers for over a year. I was recently diagnosed with Fibromyalgia & Chronic Fatigue Syndrome. I am having a hard time accepting that. I want my old life back. I want to heal and do so quickly. Instead things are only getting worse. I fear I haven’t hit rock bottom yet. Reading your posts helps me feel less alone.
Can I ask, Rachel, what does your physical therapist do specifically? Is it exercises?

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Hello @dk007 and @cldmeyers how have you each been doing? It's been a while since we've spoke.

@dk21 How have you been working on accepting your diagnosis of Fibromyalgia and chronic fatigue syndrome? What are you doing to calm your body and your mind?

@cldmeyers Are you still able to walk every other day? What new techniques are you using to deal with your chronic pain syndrome?

I graduated Mayo Pain Rehab Center (PRC) last year and have come to accept my central sensitization chronic pain.. I mourned the loss of my A life (ready and able to do anything), said good riddance to my B life (non-accepting, searching, unstable), and welcomed my C Life (stable, moderate, flexible).

I look forward to hearing from you and hope you are living your best possible C Life.

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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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These researchers are phenomenal. Rachel Zoffness is a pain educator whose book, The Chronic Pain Workbook, was just released and is excellent. A good portion can be read online. Unfortunately, so many doctors take this information and think it means the pain is in their patients' heads. I found it on my own and started doing "movement snacks" and worked my way up to full exercise and activity. My pain was chronic migraine and thoracic back pain. Neurogists had told me once chronis, it's permanent.

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@debkl

These researchers are phenomenal. Rachel Zoffness is a pain educator whose book, The Chronic Pain Workbook, was just released and is excellent. A good portion can be read online. Unfortunately, so many doctors take this information and think it means the pain is in their patients' heads. I found it on my own and started doing "movement snacks" and worked my way up to full exercise and activity. My pain was chronic migraine and thoracic back pain. Neurogists had told me once chronis, it's permanent.

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I've had fibromyalgia symptoms since childhood, and I'm now 74. Throughout my life I've researched everything on the topic (even before the internet!). I participated in Kaiser's pain management program 12 years ago, and I'm grateful for all the tools it gave me which I continue to use to this day. There is no panacea, but there is life with chronic pain. My challenges are myofascial pain syndrome (thoracic) as well as occiptal neuralgia and depression. In addition to all the conventional medical treatments, I use alternative treatments such as massage, chiropractic,etc. Most recently I've added a spiritual component to my life. It has all come together for me to a place where I can live my life in peace and acceptance - and even share what I've learned with others; i.e., my recent publication called More Than Tender Points: A Fibromyalgia Memoir (available on Amazon). There is life after diagnosis. It may not be the exact life we would have chosen, but we can learn to make that life the best it can be.

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I was diagnosed with Central Sensitization a month or so ago by pain medicine. Went to my rheumatologist yesterday and he does not agree thinks the pain is from my connective tissue disease, ehlers danlos syndrome, prior joint replacements and severe Raynauds. Not sure what to do…keep my next appointment with pain medicine?

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