Has anyone been diagnosed with Central Sensitization?

Posted by leh09 @leh09, Apr 4, 2016

Has anyone been diagnosed with Central Sensitization? If so I’d like to discuss.

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@colleenyoung

Hi @relientkitten
You're right. New members can only post links after they have been an active member (3 days or 10 posts). We do this to protect the community from unwanted spammers. However, I reviewed the link you were attempting to post and it is very useful to this discussion. Thank you for finding it.

– Central Sensitization Syndrome and the Initial Evaluation of a Patient with Fibromyalgia: A Review by Dr. Kevin Fleming and Mary Volchek, RN (Mayo Clinic) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4422459/

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Thanks @colleenyoung – you have helped me with my daily goal of learn at least one new thing. Not sure if I had learned that one before though…if not, sorry!

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thanks for stepping in.

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Yes I have 1 year ago!

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@kelseylmontague

I went through the PRC program in Rochester nearly a little under two years ago and can say, without hesitation, it changed my life!! I had been dealing with Central Sensitization Syndrome, and a vast array of debilitating symptoms for many years without the proper diagnosis. Before I got sick, I was active and proud of my career. I hadn't been able to do much of anything, let alone work, for about two years prior to attending the PRC. After the program, I was able to go back to work and do all of the things I previously loved – hiking, yoga, camping, traveling, etc!!! The PRC will help you learn how to manage your symptoms and live your life to its fullest potential. I always say to people…I am not who I was before chronic pain – I am even better! I credit all of that to PRC (and so do my family and friends who saw me go through everything). I'm happy to answer any questions you have about the program but my one piece of advice to you is this – it might seem strange at first. It might not "feel" like it's going to work but just trust it. It can work if you follow the plan. These are some of the world's most brilliant doctors and therapists who have researched chronic pain and understand what actually works. I (and many of my cohorts that I went through the program with) are living testaments to its success rates. Wishing you the very best of luck on this life-changing journey you're about to start on. Congratulations on getting the proper diagnosis, finding the program and taking the steps to take back control of this horrible monster (CSS/Chronic Pain) that ruins so many lives.

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Hi. Thank you so much for telling your story. I posted I believe in this group already, but really wanted to tell you my story to see if you think Mayo could help me. You have finally given me a ray of hope. My name is Chris and I've had Chronic Fatigue, Chronic Migraine, and extreme Multiple Chemical Sensitivity for 28 years. Life is very difficult with this illness. I see that others have gone to the Pain Clinic and it has helped them, with this group of illnesses under Central Sensitization Syndrome. I did not realize that what I had was actually Chronic Pain and have been trying to treat the symptoms of chronic migraine, chronic fatigue, and chemical sensitivity:
migraine, confusion, brain fog, etc. What is the process for going to Mayo for this group of illnesses? Has anyone with Chronic Fatigue or Multiple Chemical Sensitivity and Chronic Migraine gone through the pain clinic for this diagnosis? My migraines have worsened recently and they are daily. I've been in bed basically for the past 4.5 months and thinking of going to Mayo. I only have Medicare and am on Social Security disability. Thank you! Chris

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@acummings

What symptoms do you have?

I was told that I had bilateral carpal tunnel, TMJ & thought the nerve damage spread to my “good” leg. I have issues with sounds, odors, touch nausea. I’m relieved that it’s one big problem, instead of a bunch of individual problems.

All of this is on top of CRPS.

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What is CRPS

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@nanniesue4

The one day session or the 15 day session

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Does Mayo offer a one day session ? They only told us about the 15 day session. 3 weeks actually.

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@rickrushingx7

Does Mayo offer a one day session ? They only told us about the 15 day session. 3 weeks actually.

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Yes I was diagnosed with this a number of years ago. It’s been a long process to even begin to try to manage it because I’ve needed major brain and spinal surgery within a year of each other.
My nervous system operates on high with highly sensitive damaged nerves contributing to an already battered body. It’s been incredibly important and helpful for me to learn and regularly practise meditation. I take time out several times a day to meditate and try to include mindfulness in as many things as possible.
For me management has been about working with it as opposed to trying to change it which can be extraordinarily difficult. As humans beings when we experience pain we want to stop it. Whilst wanting to rid ones self of pain is normal it’s so ideal for those suffering chronic pain as it’s often an u realistic goal. Coming to terms with that and making peace with the idea that chronic pain will most likely be part of my life indefinately, immediately set a different attitude in my mind and I began to work with it as opposed to it.

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@sallymagint

Yes I was diagnosed with this a number of years ago. It’s been a long process to even begin to try to manage it because I’ve needed major brain and spinal surgery within a year of each other.
My nervous system operates on high with highly sensitive damaged nerves contributing to an already battered body. It’s been incredibly important and helpful for me to learn and regularly practise meditation. I take time out several times a day to meditate and try to include mindfulness in as many things as possible.
For me management has been about working with it as opposed to trying to change it which can be extraordinarily difficult. As humans beings when we experience pain we want to stop it. Whilst wanting to rid ones self of pain is normal it’s so ideal for those suffering chronic pain as it’s often an u realistic goal. Coming to terms with that and making peace with the idea that chronic pain will most likely be part of my life indefinately, immediately set a different attitude in my mind and I began to work with it as opposed to it.

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That’s an astounding achievement, Sally, and one to which many of us pain people can only aspire. I’m light years from that degree of coping and acceptance. Congratulations on your powerful transformation.

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Yes, I'm a 33 year old male and was diagnosed July 2018 at Mayo in Rochester but I can think back 8 years ago when my first symptoms began. The last year was a wreck but since diagnosis I'm learning to cope with it. Stay strong my friends!

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@rickrushingx7

Does Mayo offer a one day session ? They only told us about the 15 day session. 3 weeks actually.

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Even a week would be nice. I don't know if I can take 3 weeks off of work

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@rickrushingx7

Does Mayo offer a one day session ? They only told us about the 15 day session. 3 weeks actually.

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@rickrushingx7, CRPS stands for "complex regional pain syndrome, a form of chronic pain that usually affects an arm or a leg. CRPS typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury." https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151

The Pain Rehabilitation Center at Mayo Clinic offers a 15-day and a 2-day program. You can read about it here: https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/services

@kelseylmontague talks about her experience at the PRC here: https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-central-sensitization-if-so-id-like-to/?pg=2#comment-108716

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To @destinnana @capefibro @leh09 @rosie1302: A few years ago, and likely due to L5 partial sacralization, I acquired very painful pudendal nerve neuralgia, about which ap. a dozen doctors were clueless. Then last year, I acquired chemo-induced peripheral neuropathy in my arms and legs from breast cancer treatment. It is my (unconfirmed) belief that this was the beginning of central sensitization for me. Even a blood pressure cuff hurts this year (which is really weird for me). As I am unable to tolerate many pharmaceuticals (including gabapentin and venlafaxine), I'm in a pickle. There being so much time between appointments with the neurologist that I recently began researching CS. One thing I found was that, in Europe, the Dutch neurologists have had good results with giving their neuropathic pain patients a supplement called palmitoylethanolamide (PEA) – an endrogenous fatty acid amide which apparently has no adverse side effects. [There also is an interesting article published in 2012 in the Journal of Pain Research, reprised by NCBI; see "Therapeutic Utility of Palmitoylethanolamide in the Treatment of Pain Associated with Various Pathological Conditions: a case series."]

Like everything else, finding unadulterated PEA is the goal. I order OptiPEA on Amazon (made in the Netherlands and EU and FDA approved). It's arriving this week. Stay tuned!

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@elizm

To @destinnana @capefibro @leh09 @rosie1302: A few years ago, and likely due to L5 partial sacralization, I acquired very painful pudendal nerve neuralgia, about which ap. a dozen doctors were clueless. Then last year, I acquired chemo-induced peripheral neuropathy in my arms and legs from breast cancer treatment. It is my (unconfirmed) belief that this was the beginning of central sensitization for me. Even a blood pressure cuff hurts this year (which is really weird for me). As I am unable to tolerate many pharmaceuticals (including gabapentin and venlafaxine), I'm in a pickle. There being so much time between appointments with the neurologist that I recently began researching CS. One thing I found was that, in Europe, the Dutch neurologists have had good results with giving their neuropathic pain patients a supplement called palmitoylethanolamide (PEA) – an endrogenous fatty acid amide which apparently has no adverse side effects. [There also is an interesting article published in 2012 in the Journal of Pain Research, reprised by NCBI; see "Therapeutic Utility of Palmitoylethanolamide in the Treatment of Pain Associated with Various Pathological Conditions: a case series."]

Like everything else, finding unadulterated PEA is the goal. I order OptiPEA on Amazon (made in the Netherlands and EU and FDA approved). It's arriving this week. Stay tuned!

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@elizm. That sounds promising keep us posted

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Hi everyone, I was preliminarily diagnosed with Central sensitization today at the Mayo clinic in Jacksonville. My experience seems a little different than everyone here, the diagnosis is very new, so I'm a little confused. I'm on the chronic fatigue side rather than pain. I have oddball pains that come and go in my piriformis bone for example, but no other chronic pain. But I'm extremely sensitive to alot of things. Severe sleep issues out of no where, and sudden mood changes. Antipsychotics have been the only thing to help the sleep. And bad reactions to numerous medications, heat sensitivity, horrible menstrual periods… Has anyone had similar experiences?

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