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.

Liked by Leonard

@destinnana

Once again, asking if anyone has been diagnosed with burning mouth syndrome or central sensitization? Looking for any natural alternatives that have helped.

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Hi @destinnana,
I’m still hopeful that @capefibro @rosie1302 @leh09 and others will jump in with their experiences with central sensitization. I’d also like to invite you to join the discussions about burning mouth syndrome here:
– burning mouth syndrome very severe https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-very-severe/
– burning mouth syndrome,or bms https://connect.mayoclinic.org/discussion/burning-mouth-syndromeor-bms/

And these discussions
– Candidiasis of esophagus https://connect.mayoclinic.org/discussion/candidiasis-of-esophagus
– Esophageal Thrush https://connect.mayoclinic.org/discussion/esophageal-thrush/

How is the central sensitization being managed for you?

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@destinnana

Once again, asking if anyone has been diagnosed with burning mouth syndrome or central sensitization? Looking for any natural alternatives that have helped.

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Hi @destinnana
I invite you to take part in the active discussion about Burning Mouth Syndrome (BMS) here:
– burning mouth syndrome very severe https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-very-severe/

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@lolomarie

I have not been officially diagnosed with “central sensitization” but I
know I have it. I have fibromyalgia and with FM, something happens in the
central nervous system so that a person with this condition feels a lot of
pain from a stimuli wherast a “normal” person will feel little or not pain.
We are cursed!!

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believe it or not my gastroenterologist diagnosed me with it but i think it is BS they say (look it up on Google) that your pain is a 3 but your brain is saying it is a 10….doesnt matter to me i need to deal with the pain…tried Gabepentin got so sick then they tried me on cymbalta got low blood pressure and i am trying to ween off it now and it is terrible…you know what do some research on the computer and then find yourself a good pain management doctor…….dont go on either of those two drugs unless you want to experiment….some people can take them some can’t but my fibromyalgia is causing me the most grief…..

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@want2bme

Is it definitive that Central Sensitization is indeed Fibromyalgia?

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no……..they are two different things…read up on it…

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I have been diagnosed with this! Who wants to talk?

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@leh09

I went through Mayo’s Pain Rehab Clinic and was a little better for a short time. It was there that I learned of Central Sensitization. I’ve had progressive symptoms over the past 5 years. It’s reached a point where the fatigue is so profound that I have trouble getting up the energy to do much of anything. And the pain…..some days I can control the pain…..most days I cannot. I take pain medication but am developing a tolerance. How do you cope?

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Can you tell me about your experience with the pain rehabilitation program? I have a consultation for it in a couple weeks.

Liked by Nikki R.

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@acummings

I have been diagnosed with this! Who wants to talk?

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Welcome to Connect, @acummings. We look forward to getting to know you. Can you tell us a bit more about yourself? How long have you been living with central sensitization? What helps you?

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@acummings

I have been diagnosed with this! Who wants to talk?

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I don’t know how long I’ve had it, but I’d guess 2-2.5 years. I was just diagnosed in November, at the Scottsdale Mayo Clinic.

I’ve turned into a hermit, and stay home most of the time. I will do anything to avoid a flare-up. I haven’t found any medication that helps, due to medication sensitivity.

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I was diagnosed in October of this year at Mayo Clinic in Jacksonville

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@destinnana

I was diagnosed in October of this year at Mayo Clinic in Jacksonville

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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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The one day session or the 15 day session

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I was diagnosed with Central Sensitization Syndrome at the Mayo Clinic and, subsequently was referred to the PRC. Incredible experience overall!!! Here's a bit about how the process went for me:

I was seen by a neurologist at the Rochester Mayo clinic initially for nerve pain and migraines and was tested thoroughly over a six day period to try to find out what had been causing these symptoms along with severe, severe chronic pain, crippling fatigue and a myriad of other odd symptoms (fainting, GI issues, etc.) that had been plaguing me for nearly 10 years. The neurologist diagnosed me with Primary Stabbing Headache (yes, this is an actual diagnosis and, yes, it feels how it sounds – ugh!), Small Fiber Neuropathy.

He also referred me to Mayo's Fibromyalgia and Chronic Fatigue specialists. There, a previous diagnosis of Fibromyalgia was confirmed and additional diagnoses of Central Sensitization Disorder and Autonomic Dysfunction (including a mild case of POTS or postural orthostatic tachycardia syndrome).
were added. Due to the severity of my symptoms and how they had affected my life, they recommended I attend their Pain Rehabilitation Clinic (PRC) – a three week outpatient program. I was fortunate in that my insurance covered this treatment which, truly, changed my life! My out of pocket costs were travel, lodging and meals.

The PRC is one of the longest-running chronic pain treatment programs in the country and is run by the top experts in the field of chronic pain/symptoms. Absolutely brilliant doctors and therapists who have dedicated their careers to researching chronic pain/symptoms and how best to treat them. Everyone in the program had different diagnoses, many severe fibromyalgia, complex regional pain syndrome, MS, accident survivors, chronic fatigue syndrome, etc. But the one thing we all had in common was that our lives and livelihood had been stolen by chronic illness and we were at the end of many, many years of searching for answers and relief.

They also offer the program in Florida and Arizona (there is a very helpful video from the PRC in Florida that describes the mechanism of chronic pain/symptoms due to central sensitization, just google "dr sletten mayo clinic"). I was very, very pleased with the Rochester program. I credit it with allowing me to get back to work, to enjoy life again, and to learn how to cope with and manage symptoms that may never go away.

Do you have a physician who would be able or willing to refer you? That would be the first step. If not, I would suggest (as I did) to try to get an appointment with any doctor at the Mayo Clinic to try to address even one of your symptoms. Once you are in their system, you can ask to be referred to the PRC for an assessment for ALL of your symptoms.

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@kelseylmontague

I was diagnosed with Central Sensitization Syndrome at the Mayo Clinic and, subsequently was referred to the PRC. Incredible experience overall!!! Here's a bit about how the process went for me:

I was seen by a neurologist at the Rochester Mayo clinic initially for nerve pain and migraines and was tested thoroughly over a six day period to try to find out what had been causing these symptoms along with severe, severe chronic pain, crippling fatigue and a myriad of other odd symptoms (fainting, GI issues, etc.) that had been plaguing me for nearly 10 years. The neurologist diagnosed me with Primary Stabbing Headache (yes, this is an actual diagnosis and, yes, it feels how it sounds – ugh!), Small Fiber Neuropathy.

He also referred me to Mayo's Fibromyalgia and Chronic Fatigue specialists. There, a previous diagnosis of Fibromyalgia was confirmed and additional diagnoses of Central Sensitization Disorder and Autonomic Dysfunction (including a mild case of POTS or postural orthostatic tachycardia syndrome).
were added. Due to the severity of my symptoms and how they had affected my life, they recommended I attend their Pain Rehabilitation Clinic (PRC) – a three week outpatient program. I was fortunate in that my insurance covered this treatment which, truly, changed my life! My out of pocket costs were travel, lodging and meals.

The PRC is one of the longest-running chronic pain treatment programs in the country and is run by the top experts in the field of chronic pain/symptoms. Absolutely brilliant doctors and therapists who have dedicated their careers to researching chronic pain/symptoms and how best to treat them. Everyone in the program had different diagnoses, many severe fibromyalgia, complex regional pain syndrome, MS, accident survivors, chronic fatigue syndrome, etc. But the one thing we all had in common was that our lives and livelihood had been stolen by chronic illness and we were at the end of many, many years of searching for answers and relief.

They also offer the program in Florida and Arizona (there is a very helpful video from the PRC in Florida that describes the mechanism of chronic pain/symptoms due to central sensitization, just google "dr sletten mayo clinic"). I was very, very pleased with the Rochester program. I credit it with allowing me to get back to work, to enjoy life again, and to learn how to cope with and manage symptoms that may never go away.

Do you have a physician who would be able or willing to refer you? That would be the first step. If not, I would suggest (as I did) to try to get an appointment with any doctor at the Mayo Clinic to try to address even one of your symptoms. Once you are in their system, you can ask to be referred to the PRC for an assessment for ALL of your symptoms.

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Kelsey, Thank you for retelling your diagnosis and Pain Rehabilitation Center experience at Mayo Clinic. Members often ask about first-hand experiences from people who have been through the program. What was most helpful about the program for you?

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I was just diagnosed with Central Sensitization Syndrome and I'm enrolled in the pain rehabilitation program at the end of this month. I have been dealing with issues since December 2017, which have ultimately led to me not being able to run or walk normally and the pain has been so severe that I have been unable to work. I am hoping and praying that upon the completion of the program that I will be able to return to work finally. If not, I don't know what I'm going to do. I would love to hear about other patient's experiences with the pain clinic and how they've been able to not let this take over their life. I was extremely active prior to all of this happening to me and it has been really depressing on the limitations it has caused in my life.

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@legalese1972

I was just diagnosed with Central Sensitization Syndrome and I'm enrolled in the pain rehabilitation program at the end of this month. I have been dealing with issues since December 2017, which have ultimately led to me not being able to run or walk normally and the pain has been so severe that I have been unable to work. I am hoping and praying that upon the completion of the program that I will be able to return to work finally. If not, I don't know what I'm going to do. I would love to hear about other patient's experiences with the pain clinic and how they've been able to not let this take over their life. I was extremely active prior to all of this happening to me and it has been really depressing on the limitations it has caused in my life.

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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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