Hey there @migizii. I love this story and am glad you shared it for other members to learn from. You seem to have a good handle of knowing how to live with CSS and its requirements in order more successfully manage symptoms. Good for you! It is frustrating, but there is hope.
Not too many doctors have knowledge or understanding of CSS, let alone know how to address it for a treatment plan. Thankfully your doctor did. Self-awareness is self-advocacy is real important for some whose doctors continue them on a wild goose chase. Even though CSS may not be the answer we had hoped to hear, at least it is a culmination that brings together multiple chronic issues and gives us understanding to move forward.
I'm doing much better since learning about CSS and how to work with it through lifestyle change. So many areas have calmed down and become more manageable since my prior chaos. The chaos period is called our "B life" in pain rehab...I'm now living my "C life" which is defined by being stable, moderate and flexible. It takes a lot of work and discipline, but has been worth it. How have you been doing since you posted? You were last going to process concerns with your PCP. How'd that go?
How did you learn more about CSS? I have Generalized Sensizitation Syndrome which I would think is similar. I haven't been able to find out much more about it except for the video from the dr at Mayo.
Hello @obackus. Yes, generalized or central sensitization syndrome represent the same scenario. I learned from my own research and began connecting the dots based on my history of non-responsive treatments and medications, intensity of unprovoked pain and stimuli, duration of pain, wide-spread symptoms, heightened sensory awareness and discomfort, emotional distress and physical deconditioning. I 100% knew CSS was impacting me, but could not define it clearly until I watched Dr. Sletten's presentation, nor could I envision a path forward until I learned of his rehabilitation program at Mayo.
Here is an excerpt from a medical write up that was very extensive and confusing. I chose to highlight this part because it provides a run down of central sensitization features. I hope you find it helpful:
Features of Central Sensitization -
A survey of expert clinicians in a Delphi-derived survey found the following characteristics to describe central sensitisation in the clinical setting [18].
Subjective features -
Disproportionate, non-mechanical, unpredictable pattern of pain provocation in response to multiple/non-specific aggravating/easing factors.
Pain persisting beyond expected tissue healing/pathological recovery times.
Pain disproportionate to the nature and extent of injury or pathology.
Widespread, non-anatomical distribution of pain.
History of failed interventions (medical/surgical/therapeutic).
Strong association with maladaptive psychosocial factors (e.g. negative emotions, poor self-efficacy, maladaptive beliefs, and pain behaviours, altered family/work/social life, medical conflict).
Unresponsive to NSAIDs and/or more responsive to anti-epileptic (e.g. Lyrica) /anti-depressants (e.g. Amitriptyline) medication.
Reports of spontaneous (i.e. stimulus independent) pain and/or paroxysmal pain (i.e. sudden recurrences and intensification of pain).
Pain in association with high levels of functional disability.
More constant/unremitting pain.
Night pain/disturbed sleep.
Pain in association with other dysesthesias (e.g. burning, coldness, crawling).
Hyperpathia or pain of high severity and irritability (i.e. easily provoked, taking a long time to settle).
Also, here is a short video on the cycle of chronic pain for more understanding. Understanding what is happening in our minds and bodies helps prepare us for future acceptance and a plan forward. https://www.tamethebeast.org/understanding
Please let me know if I can help further. How have things been going for you lately?
Thank you very much for the information. The research I have found on the subject relates more to fibromyalgia than it does Small Fiber Polyneuropathy. I have seen the video from Mayo and found it to be very interesting. I would like to visit Mayo to learn more about this clinical work but have been unable to get an appointment to this point. I live in a rural town and there is not much in the way of new research on rare neuropathies and such. Any information you find that you can pass on would be most appreciated.
@keri and @tiredofpain have spoken about being diagnosed with Central Sensitization a while back. Hopefully they'll join this discussion to share with you @leh09.
I watched the video that you recommended on Central Sensitization and at seventy two and have been told by my doctor that no one can help me learn to deal with it. So what is the sense of going to pain management? I can’t take a step without pain every where .Getting dressed to go to appointments is torture so is trying to lie down and rest. I am lost in a torture chamber. Watching a video that offers me no hope is not what I need.
I have been having tremors in my hands for over a year. I have now started the internal tremors. Usually happens when I just get up from sleeping or when I go to bed at night. I have also been stumbling, falling and my balance is bad to the point my arms flail and I knock things off and spill things.
Someone on here mentioned Lymes Disease. About 10 years ago I had a tick bite that left a round raised area on my shoulder blade. My doctor is going to check me for that too. My blood work is normal,
I watched the video that you recommended on Central Sensitization and at seventy two and have been told by my doctor that no one can help me learn to deal with it. So what is the sense of going to pain management? I can’t take a step without pain every where .Getting dressed to go to appointments is torture so is trying to lie down and rest. I am lost in a torture chamber. Watching a video that offers me no hope is not what I need.
@daliea Okay, I hear you. Sometimes I find that the video helps folks to process the cycle of pain for when they have questions about what and why their body is creating such chaos as yours does. Pain management of course is not for everyone, and I understand that, but you can't blame a girl for trying.
I remember what hopelessness feels like. I know that I had to reach down real deep to even want to find a sliver of hope. It is very difficult to do when you are debilitated, exhausted, depressed, anxious and are constantly hurting.
Beginning with a small goal and making small steps toward that goal can be empowering. One my goals was to drink more water. Sounds stupid, but I did it. What small goal can you see yourself working towards?
@daliea Okay, I hear you. Sometimes I find that the video helps folks to process the cycle of pain for when they have questions about what and why their body is creating such chaos as yours does. Pain management of course is not for everyone, and I understand that, but you can't blame a girl for trying.
I remember what hopelessness feels like. I know that I had to reach down real deep to even want to find a sliver of hope. It is very difficult to do when you are debilitated, exhausted, depressed, anxious and are constantly hurting.
Beginning with a small goal and making small steps toward that goal can be empowering. One my goals was to drink more water. Sounds stupid, but I did it. What small goal can you see yourself working towards?
Thank you for your input. I tried some of the support groups online and found them depressing.This site seems to be more supportive,informative and compassionate. I have an appointment with StMary’s Psiosiatry (sp) on May third.My PCP thinks maybe MS, the neurologist suggested Sjogren’s.
Before I got sick two years ago I was able to treat my pain with Two Old Goats Essential Oils Lotion and I was good to go. I never had insomnia.
O.K. I have a big goal planned for today I have my first dental appointment in over six years. I have spent to much time in and out of the hospital and then two years of waiting to feel better it’s time to go forward. Drinking more water is always a good idea, not stupid.
Thank you for your input. I tried some of the support groups online and found them depressing.This site seems to be more supportive,informative and compassionate. I have an appointment with StMary’s Psiosiatry (sp) on May third.My PCP thinks maybe MS, the neurologist suggested Sjogren’s.
Before I got sick two years ago I was able to treat my pain with Two Old Goats Essential Oils Lotion and I was good to go. I never had insomnia.
O.K. I have a big goal planned for today I have my first dental appointment in over six years. I have spent to much time in and out of the hospital and then two years of waiting to feel better it’s time to go forward. Drinking more water is always a good idea, not stupid.
@daliea Yay! You have a goal and recognize that its time to go forward. HUGE step. I love that. And self care is a perfect goal. I learned in rehab that self care is not selfish and we must value ourselves even if we feel poor.
I'm so glad you found Connect since finding other sites depressing. Yes, we are a supportive community that takes pride in encouragement, compassion and correct information. We are not doctors, but do our best to provide information based on our own experiences and medical accuracy. Connect is well moderated and held to a higher standard. I'm happy and thankful you noticed.
After 2 years it sounds like you are being proactive and moving in the right direction by ruling out other possible causes to your conditions. I think that is awesome!! Will you keep me posted on your progress thereafter the May 3rd appointment? Good luck at the dentist. Cheers to progress...with a glass of water of course. 🥂
@daliea Yay! You have a goal and recognize that its time to go forward. HUGE step. I love that. And self care is a perfect goal. I learned in rehab that self care is not selfish and we must value ourselves even if we feel poor.
I'm so glad you found Connect since finding other sites depressing. Yes, we are a supportive community that takes pride in encouragement, compassion and correct information. We are not doctors, but do our best to provide information based on our own experiences and medical accuracy. Connect is well moderated and held to a higher standard. I'm happy and thankful you noticed.
After 2 years it sounds like you are being proactive and moving in the right direction by ruling out other possible causes to your conditions. I think that is awesome!! Will you keep me posted on your progress thereafter the May 3rd appointment? Good luck at the dentist. Cheers to progress...with a glass of water of course. 🥂
Yes Cheers !!
I am now in the process of having four crowns put on my teeth. I am so proud of myself it was a two hour appointment and I did not panic once and I feel so good about taking the steps to catch up with my dental care. I figure that I have to live twenty more years,then will make me ninety two in order to get my money’s worth lol . I can’t afford not to .😂
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No, I’ll look up the information on it and I can get back to you if you like
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2 ReactionsHow did you learn more about CSS? I have Generalized Sensizitation Syndrome which I would think is similar. I haven't been able to find out much more about it except for the video from the dr at Mayo.
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Hug
2 ReactionsHello @obackus. Yes, generalized or central sensitization syndrome represent the same scenario. I learned from my own research and began connecting the dots based on my history of non-responsive treatments and medications, intensity of unprovoked pain and stimuli, duration of pain, wide-spread symptoms, heightened sensory awareness and discomfort, emotional distress and physical deconditioning. I 100% knew CSS was impacting me, but could not define it clearly until I watched Dr. Sletten's presentation, nor could I envision a path forward until I learned of his rehabilitation program at Mayo.
Here is an excerpt from a medical write up that was very extensive and confusing. I chose to highlight this part because it provides a run down of central sensitization features. I hope you find it helpful:
Features of Central Sensitization -
A survey of expert clinicians in a Delphi-derived survey found the following characteristics to describe central sensitisation in the clinical setting [18].
Subjective features -
Disproportionate, non-mechanical, unpredictable pattern of pain provocation in response to multiple/non-specific aggravating/easing factors.
Pain persisting beyond expected tissue healing/pathological recovery times.
Pain disproportionate to the nature and extent of injury or pathology.
Widespread, non-anatomical distribution of pain.
History of failed interventions (medical/surgical/therapeutic).
Strong association with maladaptive psychosocial factors (e.g. negative emotions, poor self-efficacy, maladaptive beliefs, and pain behaviours, altered family/work/social life, medical conflict).
Unresponsive to NSAIDs and/or more responsive to anti-epileptic (e.g. Lyrica) /anti-depressants (e.g. Amitriptyline) medication.
Reports of spontaneous (i.e. stimulus independent) pain and/or paroxysmal pain (i.e. sudden recurrences and intensification of pain).
Pain in association with high levels of functional disability.
More constant/unremitting pain.
Night pain/disturbed sleep.
Pain in association with other dysesthesias (e.g. burning, coldness, crawling).
Hyperpathia or pain of high severity and irritability (i.e. easily provoked, taking a long time to settle).
Also, here is a short video on the cycle of chronic pain for more understanding. Understanding what is happening in our minds and bodies helps prepare us for future acceptance and a plan forward.
https://www.tamethebeast.org/understanding
Please let me know if I can help further. How have things been going for you lately?
-
Like -
Helpful -
Hug
9 ReactionsThank you very much for the information. The research I have found on the subject relates more to fibromyalgia than it does Small Fiber Polyneuropathy. I have seen the video from Mayo and found it to be very interesting. I would like to visit Mayo to learn more about this clinical work but have been unable to get an appointment to this point. I live in a rural town and there is not much in the way of new research on rare neuropathies and such. Any information you find that you can pass on would be most appreciated.
-
Like -
Helpful -
Hug
1 ReactionI watched the video that you recommended on Central Sensitization and at seventy two and have been told by my doctor that no one can help me learn to deal with it. So what is the sense of going to pain management? I can’t take a step without pain every where .Getting dressed to go to appointments is torture so is trying to lie down and rest. I am lost in a torture chamber. Watching a video that offers me no hope is not what I need.
I have been having tremors in my hands for over a year. I have now started the internal tremors. Usually happens when I just get up from sleeping or when I go to bed at night. I have also been stumbling, falling and my balance is bad to the point my arms flail and I knock things off and spill things.
Someone on here mentioned Lymes Disease. About 10 years ago I had a tick bite that left a round raised area on my shoulder blade. My doctor is going to check me for that too. My blood work is normal,
@daliea Okay, I hear you. Sometimes I find that the video helps folks to process the cycle of pain for when they have questions about what and why their body is creating such chaos as yours does. Pain management of course is not for everyone, and I understand that, but you can't blame a girl for trying.
I remember what hopelessness feels like. I know that I had to reach down real deep to even want to find a sliver of hope. It is very difficult to do when you are debilitated, exhausted, depressed, anxious and are constantly hurting.
Beginning with a small goal and making small steps toward that goal can be empowering. One my goals was to drink more water. Sounds stupid, but I did it. What small goal can you see yourself working towards?
-
Like -
Helpful -
Hug
5 ReactionsThank you for your input. I tried some of the support groups online and found them depressing.This site seems to be more supportive,informative and compassionate. I have an appointment with StMary’s Psiosiatry (sp) on May third.My PCP thinks maybe MS, the neurologist suggested Sjogren’s.
Before I got sick two years ago I was able to treat my pain with Two Old Goats Essential Oils Lotion and I was good to go. I never had insomnia.
O.K. I have a big goal planned for today I have my first dental appointment in over six years. I have spent to much time in and out of the hospital and then two years of waiting to feel better it’s time to go forward. Drinking more water is always a good idea, not stupid.
-
Like -
Helpful -
Hug
4 Reactions@daliea Yay! You have a goal and recognize that its time to go forward. HUGE step. I love that. And self care is a perfect goal. I learned in rehab that self care is not selfish and we must value ourselves even if we feel poor.
I'm so glad you found Connect since finding other sites depressing. Yes, we are a supportive community that takes pride in encouragement, compassion and correct information. We are not doctors, but do our best to provide information based on our own experiences and medical accuracy. Connect is well moderated and held to a higher standard. I'm happy and thankful you noticed.
After 2 years it sounds like you are being proactive and moving in the right direction by ruling out other possible causes to your conditions. I think that is awesome!! Will you keep me posted on your progress thereafter the May 3rd appointment? Good luck at the dentist. Cheers to progress...with a glass of water of course. 🥂
-
Like -
Helpful -
Hug
2 ReactionsYes Cheers !!
I am now in the process of having four crowns put on my teeth. I am so proud of myself it was a two hour appointment and I did not panic once and I feel so good about taking the steps to catch up with my dental care. I figure that I have to live twenty more years,then will make me ninety two in order to get my money’s worth lol . I can’t afford not to .😂
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Like -
Helpful -
Hug
4 Reactions