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.
Thank you @suerc for being honest and sharing your current situation. Most times the impact of our causes becomes the greatest burden. Learning how to live with chronic pain becomes our biggest challenge. Unfortunately, ablations, epidurals, meds, etc...add to over sensitized sensors thus creating more disruption to our bodies and producing less relief.
I'm real sorry to hear you are going through this. I've been there and it wasn't until I learned how to deal with with chronic situations through 4 components of physical, emotional, behavioral and chemical changes, that I began to feel like I was getting my life back.
How are you handling your emotional state through all of this?
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
Hi @juliepm. I'm so happy you found Dr. Sletten's presentation valuable. He is an incredibly intelligent Dr and is creating hope through his teachings. I attended Mayo's Pain Rehabilitation Center (PRC) program and it was life changing for me.
May I ask where you are located? Did you know PRC has 3 locations?
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.
My thoughts on the video are that the doctor does an excellent job of explaining central sensitization and how we can deal with our pain. To me knowing the "why" helps me to move forward with the suggestions given. I first heard the term central sensitization when diagnosed with fibromyalgia at Mayo clinic in 2016. I again heard the term while with my brother at his pain doctor visit in 2019. I plan to share this link with friends and family who have similar pain issues.
My thoughts on the video are that the doctor does an excellent job of explaining central sensitization and how we can deal with our pain. To me knowing the "why" helps me to move forward with the suggestions given. I first heard the term central sensitization when diagnosed with fibromyalgia at Mayo clinic in 2016. I again heard the term while with my brother at his pain doctor visit in 2019. I plan to share this link with friends and family who have similar pain issues.
@tracer545 Welcome to Connect. Thank you for your reply and sharing your thoughts on Dr. Sletten's CSS video. The Mayo Clinic has actually offered a pain rehab program since 1974. Dr. Sletten has mastered today's Pain Rehabilitation Center (PRC), over the past 10 years.
Discovering the "why behind the what" is a simple theory, yet so powerful. Central Sensitization makes complete sense, once explained, and any patient who is all in on change and betterment will thrive in the PRC program.
Thank you so much for sharing the link with your friends and family. Helping educate others to find a better way of living with chronic pain and symptoms is empowering.
Kudos to you for joining the conversation! May I ask how you are currently doing? What steps do you take in managing your chronic issues?
Hi @juliepm. I'm so happy you found Dr. Sletten's presentation valuable. He is an incredibly intelligent Dr and is creating hope through his teachings. I attended Mayo's Pain Rehabilitation Center (PRC) program and it was life changing for me.
May I ask where you are located? Did you know PRC has 3 locations?
@rwinney I am in the NW corner of Washington, 12 miles from the Canadian border. My symptoms are not 'managed' either on the meds I'm given or physical therapy.
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 taught Body Flow for 10 years until I started having back pain. Love it but it is a very strenuous work out. I can no longer do yoga without pain, unfortunately. Glad you found it, it’s wonderful! I should go back and try to do some if the easier moves.
Bless you for those you served with your teaching. Our instructor urges everyone to do what your body will let you. It helps me to remember the deep breathing that we should do more often to help our muscles and brain. Just finished an online posting of bodyflow while here visiting my brother in Virginia. One good thing from covid is we learned to use other means of communication.
@rwinney I am in the NW corner of Washington, 12 miles from the Canadian border. My symptoms are not 'managed' either on the meds I'm given or physical therapy.
It's very unfortunate that you're having trouble managing symptoms. When it comes to chronic pain, sometimes it comes down to reanylizing what we are doing that is not currently working, and making changes.
Is there any chance you are able get to Mayo Clinic Rehabilitation Center in Minnesota or Arizona? Definitely not Florida.
@healingone Hello there. It's been a while since you've posted, but I was wondering if you are still out there winning the battle with CSS? I'm with you in the CSS daily grind and am a fellow graduate of PRC, Jacksonville. How have you been doing?
@healingone speaking of CSS, I got a message from my spine specialist at Mayo yesterday stating I had this diagnosis (although I’ve never seen it listed anywhere). I was asking about a referral to rheumatology for an arthritis evaluation and his response was my CSS was probably my main issue. My response to this was to ask for clarification. His nurse responded from a 2018 assessment regarding my fibromyalgia diagnosis. My conclusion to this story was to share that I have been dealing with fibro pain for many years, but that was not my concern. Then, I cited an example of how when I may have issues with my migraines, my neurologist processes this with me. CSS/fibro is a multifaceted pain and fatigue syndrome for me, but I guess, I will be processing concerns with my PCP. Frustrating sometimes….hang in there! A regular routine, daily mild/moderate exercise, healthy diet, some socializing, and good sleep have been most helpful to me.
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Thank you @suerc for being honest and sharing your current situation. Most times the impact of our causes becomes the greatest burden. Learning how to live with chronic pain becomes our biggest challenge. Unfortunately, ablations, epidurals, meds, etc...add to over sensitized sensors thus creating more disruption to our bodies and producing less relief.
I'm real sorry to hear you are going through this. I've been there and it wasn't until I learned how to deal with with chronic situations through 4 components of physical, emotional, behavioral and chemical changes, that I began to feel like I was getting my life back.
How are you handling your emotional state through all of this?
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Helpful -
Hug
2 ReactionsHi @juliepm. I'm so happy you found Dr. Sletten's presentation valuable. He is an incredibly intelligent Dr and is creating hope through his teachings. I attended Mayo's Pain Rehabilitation Center (PRC) program and it was life changing for me.
May I ask where you are located? Did you know PRC has 3 locations?
Minnesota
Florida
Arizona
Here is a link:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Julie, how do you currently manage your symptoms?
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3 ReactionsMy thoughts on the video are that the doctor does an excellent job of explaining central sensitization and how we can deal with our pain. To me knowing the "why" helps me to move forward with the suggestions given. I first heard the term central sensitization when diagnosed with fibromyalgia at Mayo clinic in 2016. I again heard the term while with my brother at his pain doctor visit in 2019. I plan to share this link with friends and family who have similar pain issues.
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Like -
Helpful -
Hug
1 Reaction@tracer545 Welcome to Connect. Thank you for your reply and sharing your thoughts on Dr. Sletten's CSS video. The Mayo Clinic has actually offered a pain rehab program since 1974. Dr. Sletten has mastered today's Pain Rehabilitation Center (PRC), over the past 10 years.
Discovering the "why behind the what" is a simple theory, yet so powerful. Central Sensitization makes complete sense, once explained, and any patient who is all in on change and betterment will thrive in the PRC program.
Thank you so much for sharing the link with your friends and family. Helping educate others to find a better way of living with chronic pain and symptoms is empowering.
Kudos to you for joining the conversation! May I ask how you are currently doing? What steps do you take in managing your chronic issues?
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Like -
Helpful -
Hug
2 Reactions@rwinney I am in the NW corner of Washington, 12 miles from the Canadian border. My symptoms are not 'managed' either on the meds I'm given or physical therapy.
-
Like -
Helpful -
Hug
1 ReactionI taught Body Flow for 10 years until I started having back pain. Love it but it is a very strenuous work out. I can no longer do yoga without pain, unfortunately. Glad you found it, it’s wonderful! I should go back and try to do some if the easier moves.
Bless you for those you served with your teaching. Our instructor urges everyone to do what your body will let you. It helps me to remember the deep breathing that we should do more often to help our muscles and brain. Just finished an online posting of bodyflow while here visiting my brother in Virginia. One good thing from covid is we learned to use other means of communication.
It's very unfortunate that you're having trouble managing symptoms. When it comes to chronic pain, sometimes it comes down to reanylizing what we are doing that is not currently working, and making changes.
Is there any chance you are able get to Mayo Clinic Rehabilitation Center in Minnesota or Arizona? Definitely not Florida.
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Helpful -
Hug
2 Reactions@healingone Hello there. It's been a while since you've posted, but I was wondering if you are still out there winning the battle with CSS? I'm with you in the CSS daily grind and am a fellow graduate of PRC, Jacksonville. How have you been doing?
-
Like -
Helpful -
Hug
3 Reactions@healingone speaking of CSS, I got a message from my spine specialist at Mayo yesterday stating I had this diagnosis (although I’ve never seen it listed anywhere). I was asking about a referral to rheumatology for an arthritis evaluation and his response was my CSS was probably my main issue. My response to this was to ask for clarification. His nurse responded from a 2018 assessment regarding my fibromyalgia diagnosis. My conclusion to this story was to share that I have been dealing with fibro pain for many years, but that was not my concern. Then, I cited an example of how when I may have issues with my migraines, my neurologist processes this with me. CSS/fibro is a multifaceted pain and fatigue syndrome for me, but I guess, I will be processing concerns with my PCP. Frustrating sometimes….hang in there! A regular routine, daily mild/moderate exercise, healthy diet, some socializing, and good sleep have been most helpful to me.
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Like -
Helpful -
Hug
2 Reactions