I would like to ask you a couple of questions if you don’t mind. This program that you are recommending, do you have to go to the Mayo Clinic? If so, which one has this program? Is it covered by insurance like Medicare? Can you go on line and get this program? Just curious.
Hi @goldleaf,
Here is more information about Mayo Clinic's Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview
It is offered at all 3 Mayo Clinic campuses in Arizona, Florida and Minnesota. It is not an online program. People with chronic pain generally have extensive medical histories. A referral from a health care professional is required.
Hi @goldleaf,
Here is more information about Mayo Clinic's Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview
It is offered at all 3 Mayo Clinic campuses in Arizona, Florida and Minnesota. It is not an online program. People with chronic pain generally have extensive medical histories. A referral from a health care professional is required.
@goldleaf - From the Clinic I learned about deep breathing and distraction as ways to help get your mind off your pain and trying to get it to focus on other things. The idea is to rewire our brains to help it stop creating/deepening the pain path. Light exercises and working our way up slowly is helpful, meditating is suggested, my doc told me about an app and device called Muse-it helps you get your mind in a calmer state with real time data. When I meditate I focus on the Lord so that’s what helps me the most.
Rachel, Volunteer Mentor | @rwinney | Aug 15, 2021
Hello everyone who may be suffering from multiple pain symptoms, sensory issues, lack of relief from medications, injections, implants, etc... I would like to resurrect this 2018 - 2020 discussion on Central Sensitization Syndrome (CSS).
Past and present members have provided their valuable experiences as well @colleenyoung posting helpful links with added factual information. Scrolling back through the discussion may be beneficial for some to gain clarity on how CSS is an umbrella to many disorders, diseases and unknowns.
As I have lived with CSS since childhood, but not fully understood it until the past couple of years, I find it extremely important to bring to light the full spectrum of it's course. So many folks are frustrated and grasping at straws. Many doctors simply do not understand or recognize CSS. As a patient we go to all of the specialists we can find...to diagnose us, help us, cure us.
At some point it becomes more about calming the forest fire, that is CSS, and all that it encompasses. The fire may never die down completely, but cutting off some fuel lines that feed it, is a great place to start.
My sincere purpose is to help educate, and bring hope and clarity to anyone struggling.
Hello everyone who may be suffering from multiple pain symptoms, sensory issues, lack of relief from medications, injections, implants, etc... I would like to resurrect this 2018 - 2020 discussion on Central Sensitization Syndrome (CSS).
Past and present members have provided their valuable experiences as well @colleenyoung posting helpful links with added factual information. Scrolling back through the discussion may be beneficial for some to gain clarity on how CSS is an umbrella to many disorders, diseases and unknowns.
As I have lived with CSS since childhood, but not fully understood it until the past couple of years, I find it extremely important to bring to light the full spectrum of it's course. So many folks are frustrated and grasping at straws. Many doctors simply do not understand or recognize CSS. As a patient we go to all of the specialists we can find...to diagnose us, help us, cure us.
At some point it becomes more about calming the forest fire, that is CSS, and all that it encompasses. The fire may never die down completely, but cutting off some fuel lines that feed it, is a great place to start.
My sincere purpose is to help educate, and bring hope and clarity to anyone struggling.
Rachel, Volunteer Mentor | @rwinney | Aug 17, 2021
Hi @suerc. Thank you for your reply, and being curious to learn more about CSS. I took a quick look at your previous Connect comments and threads, and I see you have had a lot going on. I'm sorry for your pain and struggles.
Here is a video, from Mayo Clinic's Dr. Sletten, explaining Central Sensitization Syndrome. This is a great place to start.
Hi @suerc. Thank you for your reply, and being curious to learn more about CSS. I took a quick look at your previous Connect comments and threads, and I see you have had a lot going on. I'm sorry for your pain and struggles.
Here is a video, from Mayo Clinic's Dr. Sletten, explaining Central Sensitization Syndrome. This is a great place to start.
As Colleen's article noted, there are a number of disorders which have central sensitization as a hallmark symptom, with FM being one. I like the article suggesting that "mild aerobic exercise" lowers central sensitization pain. There is no "mild" aerobic exercise, it's either aerobic ( very difficult, especially for us) or not aerobic. My pain management specialist, who recently fired me and said, essentially, suck up the day-to-day pain and do aerobic exercise for an hour each day, was clueless. I sent her a nasty letter and copied it to the chief medical officer at the hospital. It's very unfortunate that my FM pain got much worse the last three years as the "opioid crisis" caused doctors to throw people in real pain under the bus. This is a difficult time to have chronic pain in America.
I believe there is a mild aerobic type exercise called bodyflow by LesMills. It has helped me tremendously with my fibromyalgia. Done to wonderful music you do Pilates TAICHI and yoga. There are 3 of us with fibromyalgia in the class and all agree it helps very much. Helps stretch those muscles and there is a relaxation period at the end.
I have been learning to live with my RSD. Implanted neuro stimulator helps , but have to keep reprogramming. Shattered l4 same. Radio-frequencys and epidurals help. Although last epidural for right leg pain hasn't helped as well. That's kind of scarry. Not sure what to do when injection don't work anymore.. Dr said nothing else can be done.
Hi @suerc. Thank you for your reply, and being curious to learn more about CSS. I took a quick look at your previous Connect comments and threads, and I see you have had a lot going on. I'm sorry for your pain and struggles.
Here is a video, from Mayo Clinic's Dr. Sletten, explaining Central Sensitization Syndrome. This is a great place to start.
Dr. Sletten's presentation is excellent...straightforward, logical, and compassionate. I am privileged to view it and will save the link to go back to it in the future. My gratitude to Mayo for this video and for Dr. Sletten's expertise...I have been disgusted with Mayo for their past failures in helping with my condition, which was actually created by the failure of 23 physicians to diagnose anterior cutaneous nerve entrapment over 3 years AND their cruelty in dismissing my pain. Kudos, Dr. Sletten. Wish I could take part in your rehab program./Julie Marx
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Hi @goldleaf,
Here is more information about Mayo Clinic's Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview
It is offered at all 3 Mayo Clinic campuses in Arizona, Florida and Minnesota. It is not an online program. People with chronic pain generally have extensive medical histories. A referral from a health care professional is required.
You can find out more about insurance and Mayo Clinic in these pages: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance
Goldleaf: Have you attended a pain rehab clinic before?
@healingone @iriahmak can you share a strategy that has helped you to manage symptoms?
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1 Reaction@goldleaf - From the Clinic I learned about deep breathing and distraction as ways to help get your mind off your pain and trying to get it to focus on other things. The idea is to rewire our brains to help it stop creating/deepening the pain path. Light exercises and working our way up slowly is helpful, meditating is suggested, my doc told me about an app and device called Muse-it helps you get your mind in a calmer state with real time data. When I meditate I focus on the Lord so that’s what helps me the most.
-
Like -
Helpful -
Hug
2 ReactionsHello everyone who may be suffering from multiple pain symptoms, sensory issues, lack of relief from medications, injections, implants, etc... I would like to resurrect this 2018 - 2020 discussion on Central Sensitization Syndrome (CSS).
Past and present members have provided their valuable experiences as well @colleenyoung posting helpful links with added factual information. Scrolling back through the discussion may be beneficial for some to gain clarity on how CSS is an umbrella to many disorders, diseases and unknowns.
As I have lived with CSS since childhood, but not fully understood it until the past couple of years, I find it extremely important to bring to light the full spectrum of it's course. So many folks are frustrated and grasping at straws. Many doctors simply do not understand or recognize CSS. As a patient we go to all of the specialists we can find...to diagnose us, help us, cure us.
At some point it becomes more about calming the forest fire, that is CSS, and all that it encompasses. The fire may never die down completely, but cutting off some fuel lines that feed it, is a great place to start.
My sincere purpose is to help educate, and bring hope and clarity to anyone struggling.
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Like -
Helpful -
Hug
7 ReactionsHow do we find out more about this ?
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2 ReactionsHi @suerc. Thank you for your reply, and being curious to learn more about CSS. I took a quick look at your previous Connect comments and threads, and I see you have had a lot going on. I'm sorry for your pain and struggles.
Here is a video, from Mayo Clinic's Dr. Sletten, explaining Central Sensitization Syndrome. This is a great place to start.
https://youtu.be/8defN4iIbhoDo you mind getting back to me with your thoughts, after watching the video?
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6 ReactionsI will get back to you. Besides my shattered L4 I have RSD .
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1 ReactionI believe there is a mild aerobic type exercise called bodyflow by LesMills. It has helped me tremendously with my fibromyalgia. Done to wonderful music you do Pilates TAICHI and yoga. There are 3 of us with fibromyalgia in the class and all agree it helps very much. Helps stretch those muscles and there is a relaxation period at the end.
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Like -
Helpful -
Hug
4 ReactionsHi @suerc. How are things going? How have you been handing your RSD? What is the plan for your shattered L4?
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1 ReactionI have been learning to live with my RSD. Implanted neuro stimulator helps , but have to keep reprogramming. Shattered l4 same. Radio-frequencys and epidurals help. Although last epidural for right leg pain hasn't helped as well. That's kind of scarry. Not sure what to do when injection don't work anymore.. Dr said nothing else can be done.
-
Like -
Helpful -
Hug
1 ReactionDr. Sletten's presentation is excellent...straightforward, logical, and compassionate. I am privileged to view it and will save the link to go back to it in the future. My gratitude to Mayo for this video and for Dr. Sletten's expertise...I have been disgusted with Mayo for their past failures in helping with my condition, which was actually created by the failure of 23 physicians to diagnose anterior cutaneous nerve entrapment over 3 years AND their cruelty in dismissing my pain. Kudos, Dr. Sletten. Wish I could take part in your rehab program./Julie Marx
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Like -
Helpful -
Hug
2 Reactions