Thank you for answering. From what you are saying, I gather it helps with your allodynia. What kind of allodynia do you have, and how long have you been taking Cymbalta? I am wondering whether it will help with the burning pain I get from thermal allodynia, as that is the symptom that bothers me the most.
Last August, out of the blue I started to have sensations through my body. I couldn’t sleep. It is hard to explain. I had to stand. Sitting it laying was difficult for anything more than a few minutes. I have had lots of tests and no one can tell me what caused it. I was prescribed zymbalta. I don’t know if it helped or my issue have gotten better. The sensations are still there but now it is tolerable. I wear loose fitting clothes.
Last August, out of the blue I started to have sensations through my body. I couldn’t sleep. It is hard to explain. I had to stand. Sitting it laying was difficult for anything more than a few minutes. I have had lots of tests and no one can tell me what caused it. I was prescribed zymbalta. I don’t know if it helped or my issue have gotten better. The sensations are still there but now it is tolerable. I wear loose fitting clothes.
Hello @cabba and welcome to Mayo Clinic Connect. Joining this community allows so many people to finally feel heard and understood by others who can relate. Thanks for being here!
Can you share a bit more about your experience, personally?
@mindfulness My experiences with sensory hypersensitivity from CSS and nerve hypersensitivity of neuropathy include sunburn skin sensations, clothing irritability, frozen hands and feet that feel wet or like frostbite, irregularity of temperature control. I take Pregabalin (Lyrica), and learned many coping strategies at Mayo's Pain Rehab Center. I also weaned off hydrocodone. Opiates make CSS worse causing hyperalgesia.
Does your husband currently take nerve medication? How does he handle intense sensory and pain flares? How do you help him through it?
Here is a discussion on allodynia you may find helpful: https://connect.mayoclinic.org/discussion/alloydinia/
Here is more information on treatments such as nerve medication, topicals, lifestyle change: https://www.healthline.com/health/allodynia
Mayo PRC is the best place in the world dedicated to central nervous system conditions like allodynia, fibro, neuropathy, migraine, etc. ..
CSS is an umbrella over these chronic conditions. Have you spoke to someone at Jacksonville Mayo PRC? All you need is to have your husband's doctor fax his medical records, reports, tests. After review, they will schedule 2 virtual meetings with Mayo doctors to determine if he would be accepted. I have no doubt that he would be.
*Mayo PRC Jacksonville*
Request an appointment:
Physician referral is required for admission to any Pain Rehabilitation Center (PRC) program. The person's primary care provider or referring provider will be responsible for arranging other health care services if need arises.
Referring health care professionals can contact the PRC at:
Arizona campus: 480-342-6240
Florida campus: 904-956-1780
Minnesota campus: 507-266-5100
Mayo Clinic works with hundreds of insurance companies and is an in-network provider for millions of people. All appointments are prioritized on the basis of medical need.
@mindfulness, pain stems from the brain which is why management of your husband's condition takes much more than just medication. You mention he has difficulty accepting the pain. So did I. I was a hot mess, in denial, in pain, anxious and depressed. It brought me and my family down for 3 years. Please believe me when I say there is help. You just have to trust the process. Will you please keep me posted on your progress, and let me know if I can be of further help?
Hi Rachel. We are looking into the PRC program for my husband and wondered if you might answer a couple of questions about your experience in the program. After getting information and speaking with staff from the PRC, we are a little confused. The goal of the program does not seem to be trying to reduce pain levels (at least a little) but more so on teaching someone to live with the pain, get in better physical shape with PT, and wean from drugs. After putting in three weeks full-time and all the associated costs, did you feel your pain improved at least a little bit or at least lowered your need to take medication for pain? We want to have an honest opinion from someone who has participated in the program to help decide whether this would be beneficial for my husband. Thank you for your help.
Hi Rachel. We are looking into the PRC program for my husband and wondered if you might answer a couple of questions about your experience in the program. After getting information and speaking with staff from the PRC, we are a little confused. The goal of the program does not seem to be trying to reduce pain levels (at least a little) but more so on teaching someone to live with the pain, get in better physical shape with PT, and wean from drugs. After putting in three weeks full-time and all the associated costs, did you feel your pain improved at least a little bit or at least lowered your need to take medication for pain? We want to have an honest opinion from someone who has participated in the program to help decide whether this would be beneficial for my husband. Thank you for your help.
Hello @mindfulness. I'd be happy to answer your questions about the PRC program. I'm so happy to hear your husband is considering it.
Absolutely my pain has decreased for the sheer fact that not only did I learn the tools to work towards pain reduction, but I worked diligently after PRC and applied the learned principles. The most important thing to understand about PRC is that you get out of it what you put in to it. If your husband invests 3 weeks of rehabilitation and does not buy into this program, it will not work. Surprisingly, it's not rocket science. It's basic healthy principles taught to improve physical, behavioral, and emotional health. Change comes from improving the mind and body to have a better, more manageable quality of life. It's a recipe for reduced pain, symptoms, depression, insomnia, chemical intake, anxiety, etc... PRC principles break the cycle of pain that most people get swallowed up in and can not see their way out of.
I discontinued several medications, as it is part of the PRC requirements and an important part of why I chose to be there. Medication omission, or reduction, can be very scary, but once understanding the importance of chemical reduction to pain rehabilitation, you begin to learn the negative effects certain meds can have on forward progress of life quality. The PRC has a pharmaceutical team that will analyze your husband's list of meds and determine which are necessary (blood pressure, heart, etc...) and which are not helping him in his pain rehab journey. I was safely weaned off an addictive medication, and discontinued many others meds while there. I had a meeting with the Mayo pharmaceutical team to discuss all meds, their purpose, or lack there of.
May I respectfully ask, if your husband is living with chronic, not acute, conditions and suffers from chronic pain and symptoms which no other treatments have helped, cured or fixed, and he is in emotional distress and physically decondition as a result, what else is left? The problem runs deeper. Chronic conditions typically mean just that, they are chronic and not going anywhere. One can continue to aimlessly search or they can come to terms and work on acceptance by way of learning tools that help increase quality of life. The PRC teaches a holistic approach to doing just that.
At the end of the day, Rehabilitation = bravery with the acceptance of doing things differently. No one knows what's best for you and your husband. You both have to make that decision. My advice is to have an honest, heart to heart about what the program entails and whether he wants to commit to a 3 week out patient program, and put in the work. I can attest that he will be in good hands. It's simply amazing what this program does and how they change peoples lives. The PRC has a huge success rate of giving people (and their families) their life back. There are people, however, that aren't ready to commit to change or don't buy into the program. In either case, I wish your husband the strength to make the best decision for himself. I wish you the strength to continue being the great support system that I think you are. Life ain't easy, but so worth living when you can find joy despite circumstance.
Do you have any other questions that I can help with?
Hi Rachel. We are looking into the PRC program for my husband and wondered if you might answer a couple of questions about your experience in the program. After getting information and speaking with staff from the PRC, we are a little confused. The goal of the program does not seem to be trying to reduce pain levels (at least a little) but more so on teaching someone to live with the pain, get in better physical shape with PT, and wean from drugs. After putting in three weeks full-time and all the associated costs, did you feel your pain improved at least a little bit or at least lowered your need to take medication for pain? We want to have an honest opinion from someone who has participated in the program to help decide whether this would be beneficial for my husband. Thank you for your help.
@mindfulness Here is a link from a Mayo PRC graduate who shares their experience and gives insight at how the program is organized. I hope you find it helpful.
Hello @mindfulness. I'd be happy to answer your questions about the PRC program. I'm so happy to hear your husband is considering it.
Absolutely my pain has decreased for the sheer fact that not only did I learn the tools to work towards pain reduction, but I worked diligently after PRC and applied the learned principles. The most important thing to understand about PRC is that you get out of it what you put in to it. If your husband invests 3 weeks of rehabilitation and does not buy into this program, it will not work. Surprisingly, it's not rocket science. It's basic healthy principles taught to improve physical, behavioral, and emotional health. Change comes from improving the mind and body to have a better, more manageable quality of life. It's a recipe for reduced pain, symptoms, depression, insomnia, chemical intake, anxiety, etc... PRC principles break the cycle of pain that most people get swallowed up in and can not see their way out of.
I discontinued several medications, as it is part of the PRC requirements and an important part of why I chose to be there. Medication omission, or reduction, can be very scary, but once understanding the importance of chemical reduction to pain rehabilitation, you begin to learn the negative effects certain meds can have on forward progress of life quality. The PRC has a pharmaceutical team that will analyze your husband's list of meds and determine which are necessary (blood pressure, heart, etc...) and which are not helping him in his pain rehab journey. I was safely weaned off an addictive medication, and discontinued many others meds while there. I had a meeting with the Mayo pharmaceutical team to discuss all meds, their purpose, or lack there of.
May I respectfully ask, if your husband is living with chronic, not acute, conditions and suffers from chronic pain and symptoms which no other treatments have helped, cured or fixed, and he is in emotional distress and physically decondition as a result, what else is left? The problem runs deeper. Chronic conditions typically mean just that, they are chronic and not going anywhere. One can continue to aimlessly search or they can come to terms and work on acceptance by way of learning tools that help increase quality of life. The PRC teaches a holistic approach to doing just that.
At the end of the day, Rehabilitation = bravery with the acceptance of doing things differently. No one knows what's best for you and your husband. You both have to make that decision. My advice is to have an honest, heart to heart about what the program entails and whether he wants to commit to a 3 week out patient program, and put in the work. I can attest that he will be in good hands. It's simply amazing what this program does and how they change peoples lives. The PRC has a huge success rate of giving people (and their families) their life back. There are people, however, that aren't ready to commit to change or don't buy into the program. In either case, I wish your husband the strength to make the best decision for himself. I wish you the strength to continue being the great support system that I think you are. Life ain't easy, but so worth living when you can find joy despite circumstance.
Do you have any other questions that I can help with?
Thank you @mindfulness. Yes ma'am, I am aware of Dr. John Sarno. What he describes is Central Sensitization Syndrome whereas the brain creates the pain and there is no tissue damage. Recreating new brain pathways through lifestyle change is exactly what Dr. Sletten teaches at Mayo Clinic. Here is more on that:
I believe @lorirenee1 had followed, or follows Dr. Sarno. Perhaps she or other members will chime in to discuss with you their benefits from self-help advocacy.
Thank you @mindfulness. Yes ma'am, I am aware of Dr. John Sarno. What he describes is Central Sensitization Syndrome whereas the brain creates the pain and there is no tissue damage. Recreating new brain pathways through lifestyle change is exactly what Dr. Sletten teaches at Mayo Clinic. Here is more on that:
I believe @lorirenee1 had followed, or follows Dr. Sarno. Perhaps she or other members will chime in to discuss with you their benefits from self-help advocacy.
Hi Rachel
Thanks for the link. I will listen to the whole thing later. I believe I have seen his earlier video.
I have participated in mindfulness courses, and practice it as well (although not as well as I should). I use Curable, and I am an advocate for mindfulness practice.
However, I'd like to point out that in the case of typical Small Fiber Peripheral Neuropathy, there is an actual physical injury (tissue damage), which can be demonstrated by a punch biopsy. Similarly in other forms of PN.
This is somewhat different from other forms of chronic pain syndromes.
Not to discourage anyone from trying this form of therapy. In many cases, it is the only thing that works.
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Thank you for answering. From what you are saying, I gather it helps with your allodynia. What kind of allodynia do you have, and how long have you been taking Cymbalta? I am wondering whether it will help with the burning pain I get from thermal allodynia, as that is the symptom that bothers me the most.
Last August, out of the blue I started to have sensations through my body. I couldn’t sleep. It is hard to explain. I had to stand. Sitting it laying was difficult for anything more than a few minutes. I have had lots of tests and no one can tell me what caused it. I was prescribed zymbalta. I don’t know if it helped or my issue have gotten better. The sensations are still there but now it is tolerable. I wear loose fitting clothes.
That’s exactly how mine started. So nice to finally hear someone to relate to one and a half years later!
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2 ReactionsHello @cabba and welcome to Mayo Clinic Connect. Joining this community allows so many people to finally feel heard and understood by others who can relate. Thanks for being here!
Can you share a bit more about your experience, personally?
-
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Helpful -
Hug
1 ReactionHi Rachel. We are looking into the PRC program for my husband and wondered if you might answer a couple of questions about your experience in the program. After getting information and speaking with staff from the PRC, we are a little confused. The goal of the program does not seem to be trying to reduce pain levels (at least a little) but more so on teaching someone to live with the pain, get in better physical shape with PT, and wean from drugs. After putting in three weeks full-time and all the associated costs, did you feel your pain improved at least a little bit or at least lowered your need to take medication for pain? We want to have an honest opinion from someone who has participated in the program to help decide whether this would be beneficial for my husband. Thank you for your help.
-
Like -
Helpful -
Hug
4 ReactionsHello @mindfulness. I'd be happy to answer your questions about the PRC program. I'm so happy to hear your husband is considering it.
Absolutely my pain has decreased for the sheer fact that not only did I learn the tools to work towards pain reduction, but I worked diligently after PRC and applied the learned principles. The most important thing to understand about PRC is that you get out of it what you put in to it. If your husband invests 3 weeks of rehabilitation and does not buy into this program, it will not work. Surprisingly, it's not rocket science. It's basic healthy principles taught to improve physical, behavioral, and emotional health. Change comes from improving the mind and body to have a better, more manageable quality of life. It's a recipe for reduced pain, symptoms, depression, insomnia, chemical intake, anxiety, etc... PRC principles break the cycle of pain that most people get swallowed up in and can not see their way out of.
I discontinued several medications, as it is part of the PRC requirements and an important part of why I chose to be there. Medication omission, or reduction, can be very scary, but once understanding the importance of chemical reduction to pain rehabilitation, you begin to learn the negative effects certain meds can have on forward progress of life quality. The PRC has a pharmaceutical team that will analyze your husband's list of meds and determine which are necessary (blood pressure, heart, etc...) and which are not helping him in his pain rehab journey. I was safely weaned off an addictive medication, and discontinued many others meds while there. I had a meeting with the Mayo pharmaceutical team to discuss all meds, their purpose, or lack there of.
May I respectfully ask, if your husband is living with chronic, not acute, conditions and suffers from chronic pain and symptoms which no other treatments have helped, cured or fixed, and he is in emotional distress and physically decondition as a result, what else is left? The problem runs deeper. Chronic conditions typically mean just that, they are chronic and not going anywhere. One can continue to aimlessly search or they can come to terms and work on acceptance by way of learning tools that help increase quality of life. The PRC teaches a holistic approach to doing just that.
At the end of the day, Rehabilitation = bravery with the acceptance of doing things differently. No one knows what's best for you and your husband. You both have to make that decision. My advice is to have an honest, heart to heart about what the program entails and whether he wants to commit to a 3 week out patient program, and put in the work. I can attest that he will be in good hands. It's simply amazing what this program does and how they change peoples lives. The PRC has a huge success rate of giving people (and their families) their life back. There are people, however, that aren't ready to commit to change or don't buy into the program. In either case, I wish your husband the strength to make the best decision for himself. I wish you the strength to continue being the great support system that I think you are. Life ain't easy, but so worth living when you can find joy despite circumstance.
Do you have any other questions that I can help with?
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4 Reactions@mindfulness Here is a link from a Mayo PRC graduate who shares their experience and gives insight at how the program is organized. I hope you find it helpful.
https://patient.practicalpainmanagement.com/resources/pain-self-management/time-mayo-clinic-pain-rehabilitation-center-
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3 ReactionsThank you for sharing your experience. I am very happy that the program worked so well for you.
Have you followed the teachings of Dr. John Sarno and Dr. Howard Schubiner? There is a chance that your pain can be reversed. https://www.bing.com/videos/search?q=howard+schubiner+md+pain&&view=detail&mid=901DB5D7F94027EE797C901DB5D7F94027EE797C&&FORM=VRDGAR&ru=%2Fvideos%2Fsearch%3Fq%3Dhoward%2Bschubiner%2Bmd%2Bpain%26FORM%3DHDRSC4
Thank you @mindfulness. Yes ma'am, I am aware of Dr. John Sarno. What he describes is Central Sensitization Syndrome whereas the brain creates the pain and there is no tissue damage. Recreating new brain pathways through lifestyle change is exactly what Dr. Sletten teaches at Mayo Clinic. Here is more on that:
- https://www.youtube.com/watch?v=vJNhdnSK3WQ
I believe @lorirenee1 had followed, or follows Dr. Sarno. Perhaps she or other members will chime in to discuss with you their benefits from self-help advocacy.
-
Like -
Helpful -
Hug
4 ReactionsHi Rachel
Thanks for the link. I will listen to the whole thing later. I believe I have seen his earlier video.
I have participated in mindfulness courses, and practice it as well (although not as well as I should). I use Curable, and I am an advocate for mindfulness practice.
However, I'd like to point out that in the case of typical Small Fiber Peripheral Neuropathy, there is an actual physical injury (tissue damage), which can be demonstrated by a punch biopsy. Similarly in other forms of PN.
This is somewhat different from other forms of chronic pain syndromes.
Not to discourage anyone from trying this form of therapy. In many cases, it is the only thing that works.
-
Like -
Helpful -
Hug
4 Reactions