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!
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!
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?
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?
Hi @jgl15, welcome to Connect. I'm tagging @relientkitten who shared the following link that may be helpful and she may be able to share her experiences with you here. This is the link she shared:
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?
I tried to post and it deleted it. Trying again.
I, too, was diagnosed with CS (not bc of pain, I have pain, but it’s under control and not constant), but bc of SEID/ME/CFS. I disagree with the CS dx (diagnosis) unless this applies to ALL neurological disorders bc as I learned in my neuroplasticity book that pretty much all neurological dx’s place people into sympathetic nervous system (SNS) overload. I have dedicated a ton of time to research of neuroplasticity, Central sensitization and primarily ME/CFS. The ME/CFS symposium was this weekend. Open medicine foundation (OMF.ngo) is leading the research at Stanford. NIH gives $5 mil to research this horrible disease (compared with $150 mil to MS). We are 50 years behind on the funding and research, but the new clinical trials are promising!! I have not viewed the whole symposium yet, but it is available to the public now.
Ammes.org
Solvecfs.org
Good luck on your journey. FB has a good ME/CFS support group also. I hope to go to Stanford in the next year or 2 to help contribute to finding biomarkers and a cure!
Lastly, after you research and learn, please share with your Mayo providers and local providers. I’m finding I’m at acceptance phase and advocacy as nobody knows about this at all which leads to misdiagnosis and poor treatment. Education is everything!
Also, Dr. Sarah Myhill’s YouTube videos and book (2nd Ed). Are great and Gary Kaplan’s YouTube videos (3 part) are also very informative.
I tried to post and it deleted it. Trying again.
I, too, was diagnosed with CS (not bc of pain, I have pain, but it’s under control and not constant), but bc of SEID/ME/CFS. I disagree with the CS dx (diagnosis) unless this applies to ALL neurological disorders bc as I learned in my neuroplasticity book that pretty much all neurological dx’s place people into sympathetic nervous system (SNS) overload. I have dedicated a ton of time to research of neuroplasticity, Central sensitization and primarily ME/CFS. The ME/CFS symposium was this weekend. Open medicine foundation (OMF.ngo) is leading the research at Stanford. NIH gives $5 mil to research this horrible disease (compared with $150 mil to MS). We are 50 years behind on the funding and research, but the new clinical trials are promising!! I have not viewed the whole symposium yet, but it is available to the public now.
Ammes.org
Solvecfs.org
Good luck on your journey. FB has a good ME/CFS support group also. I hope to go to Stanford in the next year or 2 to help contribute to finding biomarkers and a cure!
Lastly, after you research and learn, please share with your Mayo providers and local providers. I’m finding I’m at acceptance phase and advocacy as nobody knows about this at all which leads to misdiagnosis and poor treatment. Education is everything!
Also, Dr. Sarah Myhill’s YouTube videos and book (2nd Ed). Are great and Gary Kaplan’s YouTube videos (3 part) are also very informative.
Dr. Norman Doidge has an interesting book on neuroplasticity. I started reading it but it was a little deep for me so I passed it on to one of my colleagues. The four or five chapters I was able to get through were pretty informative and interesting on how the brain works with pain signals.
I'm with you, research, research and more research + be your own health advocate. The more you know, the better questions you can ask your doctors and hopefully the better the treatment plan for whatever ails you. One of my favorite sites that gets your brain in the mood is https://www.resilientoption.com/vlog/.
Dr. Norman Doidge has an interesting book on neuroplasticity. I started reading it but it was a little deep for me so I passed it on to one of my colleagues. The four or five chapters I was able to get through were pretty informative and interesting on how the brain works with pain signals.
I'm with you, research, research and more research + be your own health advocate. The more you know, the better questions you can ask your doctors and hopefully the better the treatment plan for whatever ails you. One of my favorite sites that gets your brain in the mood is https://www.resilientoption.com/vlog/.
I went into a deep depression from the dx of CS from Mayo and not knowing what ME/SEID/CFS was and from the GI MD nearly yelling at me to move on with life (before I got my dx’s). Still strongly disagree with the CS after reading that article you posted. It is definitely appropriate for the pain/FM group, I don’t have those, just ME/SEID.
So during that deep depression I had to figure out how to get better. So I started researching and learning more about ME bc the stigma is that it is psychosomatic. It is NOT! It is a complex, serious, systemic disease that if not treated properly (that is, if your MD says graded exercise and CBT then they are not up on the research! That will cause severe worsening of condition and can leave you bedridden/bound).
I also have other rare dx’s and a moderator in my vestibular FB group recommended the Norman Doidge books. I was still very fragile and self, um, word finding issue... I was still angry and in denial and not knowing what was going on. So I read those 2 books and they gave me hope that I can heal with all my diseases/dx’s!
I loved them! I am a healthcare professional so I didn’t have trouble getting through them. Highly recommend!! They changed my life and they changed the way I treat my patients as well. I’ve incorporated some of the techniques into my treatments.
I also learned energy conservation techniques (still learning how to save my ‘spoons’!), how to meditate and worked on my breathing. Got plenty of healing sunlight (refer to chapter 4 in Doidge second book), green therapy, and started speech therapy and continued PT. All helped. Learned how to balance the exercises that I have to do to function, but to not ‘exercise’ like a regular person anymore. Added cognitive exercises for the cognitive decline/impairments I have had worsen this year.
@johnbishop Thanks for the article. I will check it out. I've tried so much to help with the sleep.... the psychiatric meds have by far been the most help. Although it has taken over 10 months of tinkering, and playing around with different combinations and dosages. But, sometimes that's still not enough.
So I've started a "wellness" routine including trying to go to bed/wake up at the same times, not napping, eating at the same times each day, and doing some sort of physical activity every week, ideally 5 days for 45 minutes. @uldiver , I'm very interested in what you're saying about not exercising like a normal person. Have you found that less exercise helps you? Exercise seems to help my energy but it also gives me random aches and pains, when I seem to have plateaued.
I'm no medical professional, but I love to read about health/wellness so what books do you recommend?
Meditating also helps me a lot with sleeping, and sometimes gives me temporary relief from fatigue. One day I had debilitating fatigue, to the point I couldn't watch netflix even and everything sounded too loud. But I meditated for almost an hour, and was able to do normal activities for a couple hours after that.
I'm also going through a 12-week dialectical behavioral therapy program right now. We're starting by focusing on mindfulness. This is really helping me quickly, so maybe consider looking into this if you find that central sensitization has affected your mental health.
Have either of you heard about how medications can worsen central sensitization? I'm on viberzi for IBS, and about 5 psychiatric medications. I read somewhere that medications can worsen the condition...
A lot of questions here, I know - thanks everyone for the support as I continue down this journey.
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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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1 ReactionTo @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!
@elizm. That sounds promising keep us posted
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?
@edda
Hi @jgl15, welcome to Connect. I'm tagging @relientkitten who shared the following link that may be helpful and she may be able to share her experiences with you here. This is the link she shared:
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/
Have you tried anything besides the medications to help you sleep?
John
I tried to post and it deleted it. Trying again.
I, too, was diagnosed with CS (not bc of pain, I have pain, but it’s under control and not constant), but bc of SEID/ME/CFS. I disagree with the CS dx (diagnosis) unless this applies to ALL neurological disorders bc as I learned in my neuroplasticity book that pretty much all neurological dx’s place people into sympathetic nervous system (SNS) overload. I have dedicated a ton of time to research of neuroplasticity, Central sensitization and primarily ME/CFS. The ME/CFS symposium was this weekend. Open medicine foundation (OMF.ngo) is leading the research at Stanford. NIH gives $5 mil to research this horrible disease (compared with $150 mil to MS). We are 50 years behind on the funding and research, but the new clinical trials are promising!! I have not viewed the whole symposium yet, but it is available to the public now.
Ammes.org
Solvecfs.org
Good luck on your journey. FB has a good ME/CFS support group also. I hope to go to Stanford in the next year or 2 to help contribute to finding biomarkers and a cure!
Lastly, after you research and learn, please share with your Mayo providers and local providers. I’m finding I’m at acceptance phase and advocacy as nobody knows about this at all which leads to misdiagnosis and poor treatment. Education is everything!
Also, Dr. Sarah Myhill’s YouTube videos and book (2nd Ed). Are great and Gary Kaplan’s YouTube videos (3 part) are also very informative.
-
Like -
Helpful -
Hug
1 ReactionDr. Norman Doidge has an interesting book on neuroplasticity. I started reading it but it was a little deep for me so I passed it on to one of my colleagues. The four or five chapters I was able to get through were pretty informative and interesting on how the brain works with pain signals.
-- http://www.normandoidge.com/?page_id=1042
I'm with you, research, research and more research + be your own health advocate. The more you know, the better questions you can ask your doctors and hopefully the better the treatment plan for whatever ails you. One of my favorite sites that gets your brain in the mood is https://www.resilientoption.com/vlog/.
I went into a deep depression from the dx of CS from Mayo and not knowing what ME/SEID/CFS was and from the GI MD nearly yelling at me to move on with life (before I got my dx’s). Still strongly disagree with the CS after reading that article you posted. It is definitely appropriate for the pain/FM group, I don’t have those, just ME/SEID.
So during that deep depression I had to figure out how to get better. So I started researching and learning more about ME bc the stigma is that it is psychosomatic. It is NOT! It is a complex, serious, systemic disease that if not treated properly (that is, if your MD says graded exercise and CBT then they are not up on the research! That will cause severe worsening of condition and can leave you bedridden/bound).
I also have other rare dx’s and a moderator in my vestibular FB group recommended the Norman Doidge books. I was still very fragile and self, um, word finding issue... I was still angry and in denial and not knowing what was going on. So I read those 2 books and they gave me hope that I can heal with all my diseases/dx’s!
I loved them! I am a healthcare professional so I didn’t have trouble getting through them. Highly recommend!! They changed my life and they changed the way I treat my patients as well. I’ve incorporated some of the techniques into my treatments.
I also learned energy conservation techniques (still learning how to save my ‘spoons’!), how to meditate and worked on my breathing. Got plenty of healing sunlight (refer to chapter 4 in Doidge second book), green therapy, and started speech therapy and continued PT. All helped. Learned how to balance the exercises that I have to do to function, but to not ‘exercise’ like a regular person anymore. Added cognitive exercises for the cognitive decline/impairments I have had worsen this year.
-
Like -
Helpful -
Hug
1 Reaction@johnbishop Thanks for the article. I will check it out. I've tried so much to help with the sleep.... the psychiatric meds have by far been the most help. Although it has taken over 10 months of tinkering, and playing around with different combinations and dosages. But, sometimes that's still not enough.
So I've started a "wellness" routine including trying to go to bed/wake up at the same times, not napping, eating at the same times each day, and doing some sort of physical activity every week, ideally 5 days for 45 minutes. @uldiver , I'm very interested in what you're saying about not exercising like a normal person. Have you found that less exercise helps you? Exercise seems to help my energy but it also gives me random aches and pains, when I seem to have plateaued.
I'm no medical professional, but I love to read about health/wellness so what books do you recommend?
Meditating also helps me a lot with sleeping, and sometimes gives me temporary relief from fatigue. One day I had debilitating fatigue, to the point I couldn't watch netflix even and everything sounded too loud. But I meditated for almost an hour, and was able to do normal activities for a couple hours after that.
I'm also going through a 12-week dialectical behavioral therapy program right now. We're starting by focusing on mindfulness. This is really helping me quickly, so maybe consider looking into this if you find that central sensitization has affected your mental health.
Have either of you heard about how medications can worsen central sensitization? I'm on viberzi for IBS, and about 5 psychiatric medications. I read somewhere that medications can worsen the condition...
A lot of questions here, I know - thanks everyone for the support as I continue down this journey.
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