Has anyone been diagnosed with Central Sensitization?

Posted by leh09 @leh09, Apr 4, 2016

Has anyone been diagnosed with Central Sensitization? If so I’d like to discuss.

Liked by Leonard

I found the video interesting in an odd way. I already knew what he was talking about a long time ago. Some of the medical terms, I am not familiar with but I figured out what was happening to me by reading articles, listening to the neurologist I see, and since I live with Central Sensitization Syndrome my observations are first hand. I never heard of this program before and even if I wanted to go to Florida, I couldn’t. I can’t drive more than 20 miles in any direction. I have been forced by my circumstances to deal with this on my own. It is good to hear that people who are suffering from Central Sensitization Syndrome, have a place where they are understood and not treated like mental patients. I think that it is encouraging but I feel that it will take a long time before the general community of doctors will take the time to even see this video.

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@goldleaf

I found the video interesting in an odd way. I already knew what he was talking about a long time ago. Some of the medical terms, I am not familiar with but I figured out what was happening to me by reading articles, listening to the neurologist I see, and since I live with Central Sensitization Syndrome my observations are first hand. I never heard of this program before and even if I wanted to go to Florida, I couldn’t. I can’t drive more than 20 miles in any direction. I have been forced by my circumstances to deal with this on my own. It is good to hear that people who are suffering from Central Sensitization Syndrome, have a place where they are understood and not treated like mental patients. I think that it is encouraging but I feel that it will take a long time before the general community of doctors will take the time to even see this video.

Jump to this post

The doctors I see away from Mayo have never heard of Central Sensitization.

All challenges are different for each person. I know trying to manage everything can be hard, especially doing it on your own.

Feel free to stay in touch. Sometimes a listening ear, can make a huge difference.

Have a great day!

Liked by Lisa Lucier

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Hello, since you made the offer, I am interested at this moment to have a conversation. I will tell you I don’t like a one way conversation so feel free to join in. I no longer need a listening ear so to speak. I use to do that sort of thing with a very knowledgeable psychologist with understanding that we would have an on going conversation, but didn’t happen. She was a huge help to me while I was dealing with a very bad stress problem. PTSD was the label the doctors put on it. I don’t want to waste any time going thru why that happened, but the reality of my life was always some kind of PTSD problem. This is probably why I learned that no one was ever going to come to my rescue. I knew if I wanted to survive in this world, I needed to handle my problems myself. According to this psychologist, I am very good at surviving. She also told me that I am very good at problem solving. Starting in 2006, after a botched surgery that escalated my Central Sensitization Syndrome, I realized the doctors I was seeing were educated dumb asses. Maybe I shouldn’t put that label on them since I know what it takes to become a doctor. They are not dumb but at what point in their education did they stop learning? I have heard so many stupid excuses on this, it is mind boggling. I was never interested in becoming a doctor. I had a few reasons for this. I have no problem with all the blood and guts sort of thing, I just don’t like seeing people in pain. I also don’t like causing any. I also knew I didn’t have the ability to become one. I have dyslexia. It took a long time before I figured out this problem and it took awhile before I mastered how to read. I still have somethings that I can’t get around but they real don’t matter. The psychologist, gave me an education in psychology. She didn’t realize this until recently. I have been fortunate enough to have had some people in my life, that turned out to be good educators. School never did that for me. This psychologist is so far the only professional that I have had a real conversation about Central Sensitization Syndrome. I brought the subject up because none of my other doctors saw this medical diagnosis. She never heard of this before but when she started researching this, she was dumbfounded. Her husband was a vascular surgeon and he heard of this problem, sort of. Both of her sons are doctors and they are sort of familiar with Central Sensitization. As you have stated, up until 2 years ago, none of the doctors I was seeing, never heard of this medical condition. I see a neurologist now who is very knowledgeable on this problem and a gastroenterologist who is also familiar with it. The problem I have with them is, they have little to no time to have a conversation about my medical situation. As it turns out, that psychologist doesn’t either. She is now 86 and she retired from practice. As a result, I am left to do my own research. Since I lost faith in our medical system a long time ago, I am left with all the other things I need to do to survive this crap. I did barely graduate from college but the only thing I really use is my education on physical education. I have enjoyed playing different sports most of my life and was on the track team in high school and the wrestling team in college. I have been exercising since I was 7. It has come in very handy in dealing with Central Sensitization. I still exercise 7 days a week. I started medication when I started college. I ran across this practice because I was interested in the Marshal Arts. I practiced a form of Kung fu for quite awhile. I stopped when I had an accident while climbing a pole. I use to work for a phone company and while I climbing a pole on my job, I trashed my knee. Just before I retired, I had a total knee replacement done. That was my first surgery but not my last. The next one was to repair a rectal tear. That one destroyed my life. Permanent nerve damage in that area and peripheral nerve pain in both my feet. It was excruciating and nonstop. That surgeon, who was recommended to me by my psychologist, was a Cedar Sinai Colon Rectal specialist. I didn’t find out until 4 years later that he hid what happened during that surgery and he sent me in the wrong direction as to why this happened. He was protecting himself from a law suite. I didn’t start a pain med until 2011 and that was Fentynal. It took a while before I realized that I was being used by doctors. This is just not a single opinion and I just didn’t just make this up. I was never told what Fentynal was. I should have asked but I was in too much pain and I trusted my doctors. Big mistake on my part. I should have looked into what I was being given myself. It wasn’t until I had a pancreatitis attack, which nearly killed me that snapped me out of my stupidity. I won’t go into that or all the dumb ass doctors I went to for this problem and all the unnecessary testing I had to endure. I figured out on my own and then had my diagnosis confirmed by my gastroenterologist that it was the Fentynal that did this to me. I spent a year starving to death because not one of these genus’s could figure this out. I only was on two medications at that time, I have thyroid disease and take a med for that and the Fentynal for the pain. This next part to this day really pisses me off. Not one of my recent doctors ever said to me, you need to stop the use of Fentynal even after they knew it was killing me. I did this myself at home with my only help, my wife. My wife knows nothing about being a nurse and has never been around someone who was addicted to a drug. I was never an addict or so I thought. I won’t go into how much fun that was and I still didn’t know I had Central Sensitization Syndrome. Since I have had a chance to look back on my medical history, it was just after that surgery that Central Sensitization Syndrome was evident. The other realization was, just 4 days into my detox, my pancreas started functioning properly again. I was under the impression that my medical problems were solved and my hell was over. Surprise, Central Sensitization Syndrome hit me like a ton of bricks. At first, my neurologist told me there was going to be some readjustment that I would have to deal with. He told me it might take up tp 6 months for this to happen. About 4 months into this and I started to realize something was very wrong. I was too sensitive to to many things and I was having way too many weird things happening to me. So I got on my computer and started researching sensitivity issues. Central Sensitization Syndrome popped up. I brought this up to my neurologist and the testing started and between the psychologist and the gastroenterologist and the neurologist and myself, Central Sensitization Syndrome was diagnosed. I did mention that I was considered a good problem solver but this problem is just too complicated. It seems way to complicated for even the best doctors and researchers. I am 71 and realize I am not going to solve this but in order to survive I need to just accept it and deal with it. Since I have been on this site, I see I am doing better than other people with Central Sensitization. Not that much better though. My wife and my two adult sons think I could help other people with this but I think that is a bad idea. I only know how to take care of myself because I know how this affects me. I am also aware that other people have different medical problems which I don’t know a lot about and they have Central Sensitization Syndrome. I don’t know what they are dealing with or how that makes them feel. Hypersensitivity on top of that, how can we relate? My pain level is different than the next person. I experience things differently for a lot of reasons. I will bring this up, I have a problem after each time I spend writing. Thinking causes stress, so I need to stop writing but I am interested in a conversation. I just need a little time to recover.

Liked by LeighO57

REPLY

I woke this morning and spent some time reviewing what I posted. Since someone has taken an interest in me, I would like to add a couple of present medical problems that my doctors can’t or won’t respond to. I am chemically sensitive to all pharmaceutical drugs. I now have allergic reactions to a lot of natural foods that I didn’t have before that surgery. I can’t even use natural medications. I still have medical problems to deal with. Incurable ones. I have thyroid disease and I have to use a pharmaceutical med for that. There have been some very bad problems that have occurred when having to say go to my primary doctor. I had to recently change to a new one because he doesn’t understand Central Sensitization Syndrome even though I spent time trying to explain it to him. After spending my appointment time doing this, he said the stupidest thing to. “ So now you are desensitized”. What a waste of that time. The bad result of this happened when I had my annual blood test for the thyroid disease. It showed that the level was to high. So he adjusted the dosage. That adjustment probably wouldn’t have affected before that operation but it did this time. For me it was way too low and I reacted like someone just set me on fire. I am still trying to adjust to this level and it has been over 8 months. I dropped that doctor and started seeing a new one. This primary doctor, after finding out that I have Central Sensitization Syndrome and the very bad reaction to the thyroid medication, doesn’t want to deal with it. The last time I saw him he told me that he wants to let my neurologist deal with it. Stupid reasoning. Yes my neurologist went out of his way and spent sometime looking into this and had me take a couple more blood tests. When the results came back, they showed that I was in some kind of normal range and I didn’t need to see a endocrinologist. He explained that stress from having Central Sensitization Syndrome will affect my thyroid gland.The reality is I am still having problems because of that change. Since this affects my entire nervous system, I think you see my point. As of now I really can’t trust any doctor who isn’t familiar with Central Sensitization Syndrome. So here is my dilemma, if I have any kind of old or new medical situation, who do I see and where can I go to for help? I can’t prescribe meds for myself I am not a doctor and as far as I am concerned, they aren’t either. I am 71 and I will eventually start having more medical problems, Mother Nature will see to that. I have the neurologist who has been very helpful in dealing with my pain through injections. But that only lasts for awhile and I can barely live with that. The prospect of more pain is there. I will never be able to have any surgery. My reality sucks.

Liked by LeighO57

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@capefibro

I’m also assuming that central sensitization is FM, very nasty to us as you noted. As many ” treatments” as symptoms LOL. A sense of humor is not enough for this level of pain, though, and sometimes you really don’t know how you will make it through the day. There are a lot us dealing with this.

Jump to this post

Fibromyalgia is just one of the many ways Central Sensitization can present itself.

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@want2bme

Is it definitive that Central Sensitization is indeed Fibromyalgia?

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Central Sensitization is the umbrella of several disorders including Fibromyalgia.

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@capefibro

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.

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I recommend the 3 week Mayo Pain and Rehabilitation Program for treating Fibromyalgia.

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@goldleaf

I woke this morning and spent some time reviewing what I posted. Since someone has taken an interest in me, I would like to add a couple of present medical problems that my doctors can’t or won’t respond to. I am chemically sensitive to all pharmaceutical drugs. I now have allergic reactions to a lot of natural foods that I didn’t have before that surgery. I can’t even use natural medications. I still have medical problems to deal with. Incurable ones. I have thyroid disease and I have to use a pharmaceutical med for that. There have been some very bad problems that have occurred when having to say go to my primary doctor. I had to recently change to a new one because he doesn’t understand Central Sensitization Syndrome even though I spent time trying to explain it to him. After spending my appointment time doing this, he said the stupidest thing to. “ So now you are desensitized”. What a waste of that time. The bad result of this happened when I had my annual blood test for the thyroid disease. It showed that the level was to high. So he adjusted the dosage. That adjustment probably wouldn’t have affected before that operation but it did this time. For me it was way too low and I reacted like someone just set me on fire. I am still trying to adjust to this level and it has been over 8 months. I dropped that doctor and started seeing a new one. This primary doctor, after finding out that I have Central Sensitization Syndrome and the very bad reaction to the thyroid medication, doesn’t want to deal with it. The last time I saw him he told me that he wants to let my neurologist deal with it. Stupid reasoning. Yes my neurologist went out of his way and spent sometime looking into this and had me take a couple more blood tests. When the results came back, they showed that I was in some kind of normal range and I didn’t need to see a endocrinologist. He explained that stress from having Central Sensitization Syndrome will affect my thyroid gland.The reality is I am still having problems because of that change. Since this affects my entire nervous system, I think you see my point. As of now I really can’t trust any doctor who isn’t familiar with Central Sensitization Syndrome. So here is my dilemma, if I have any kind of old or new medical situation, who do I see and where can I go to for help? I can’t prescribe meds for myself I am not a doctor and as far as I am concerned, they aren’t either. I am 71 and I will eventually start having more medical problems, Mother Nature will see to that. I have the neurologist who has been very helpful in dealing with my pain through injections. But that only lasts for awhile and I can barely live with that. The prospect of more pain is there. I will never be able to have any surgery. My reality sucks.

Jump to this post

I recommend Mayo's Pain and Rehabilitation Program for treating Central Sensitization.

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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.

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I have made several observations when dealing with medical equipment and exams. Since I have been diagnosed with Central Sensitization Syndrome, there have been a couple of times when I had to either use an MRI or just the other day I had an eye exam. I had reactions to them and would be interested to hear from anyone else if they had similar experiences. My neurologist sent me to have an MRI for my nerve damage from a surgery. What happened directly after that exam was strange since I have had MRI’s before without any problems but that was before my detox from Fentynal. As soon as the exam was over and I was still laying outside that machine, I became dizzy. On my ride home, I started having a bad headache. For the next three days, I had very bad muscle spasms. They stopped after that. I asked my neurologist about this and he told me he thought it was because of the stress of being in that device. I do know from experience, that I do get muscle spasms from stressful situations but I believe it was more than this. The other day I had my annual eye exam. There was one device that caused me problems. This device shows an image of crossed lines that shimmer and your supposed to push this button to show you see this image. I had to stop this several times as it was making me have problems seeing. When I went home I started having memory confusion. That lasted for about an hour. I have misplaced something I was using and can’t even remember where I put it. The last time that type of thing happened was two years ago when I had just finished detoxing from that Fentynal. After that hour, I didn’t have that weirdness and hasn’t returned. I understand that stress and stressful situations for someone with Central Sensitization Syndrome, can result in some of this but I feel there is more to this.

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@goldleaf

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.

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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?

REPLY
@colleenyoung

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?

Jump to this post

@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.

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