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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@goldleaf

I have run into this situation before and maybe you could shed some light on it for me. People disappear on this site. I don’t mean they become invisible, they just stop communicating. I did have a conversation with two ladies who have Central Sensitization Syndrome but that was very short and lasted one time since I joined. I have used other web sites and have found that the have Central Sensitization Syndrome as a topic but the posts are very old. Just curious. I have gotten involved here on some other discussions but I don’t think they understand what I am dealing with and can’t relate. I know I have never heard of this before it happened to me. Pain is universal but this is not. You are in a different world when dealing with this. Those ladies and I have very similar symptoms as mine even though their other medical problems are different than mine and I found that odd. This has left me in a very awkward position. Maybe you can help.

Jump to this post

@goldleaf I thought I would chime in and try to answer your question to @lisalucier. People stop communicating on different sites including Connect for many different reasons which only they know. If you click on your profile at the top of any Connect screen it will take you to your profile page which lists all of your posts. You can scroll through the posts to find the members with similar symptoms that you have communicated with and if you click on their "@membername" it will take you to their profile page where you can click on the Send Private Message link and send the member a private message to share information or ask a question.

You can find all of the common tasks for using Connect in the Get Started on Connect guide which you can easily access from any page by clicking the link in the left footer column at the bottom of the page.

REPLY
@johnbishop

@goldleaf I thought I would chime in and try to answer your question to @lisalucier. People stop communicating on different sites including Connect for many different reasons which only they know. If you click on your profile at the top of any Connect screen it will take you to your profile page which lists all of your posts. You can scroll through the posts to find the members with similar symptoms that you have communicated with and if you click on their "@membername" it will take you to their profile page where you can click on the Send Private Message link and send the member a private message to share information or ask a question.

You can find all of the common tasks for using Connect in the Get Started on Connect guide which you can easily access from any page by clicking the link in the left footer column at the bottom of the page.

Jump to this post

Thank you for your response. It was more of a curiosity and I get the idea of many reasons. Since I have this particular medical diagnosis and understand all to well what it does to you, pursuing a conversation I feel is a bad idea. You have to be a willing participant. Hypersensitivity is all consuming and debilitating. If they want to talk to me on that site I will be check every once in awhile.

REPLY

Yes I was just diagnosed at mayo a few weeks ago with it.

REPLY
@iriahmak

Yes I was just diagnosed at mayo a few weeks ago with it.

Jump to this post

Hello @iriahmak, Welcome to Mayo Clinic Connect. Thank you for sharing with us. Did Mayo Clinic suggest any treatment or therapy for your Central Sensitization diagnosis?

REPLY
@johnbishop

Hello @iriahmak, Welcome to Mayo Clinic Connect. Thank you for sharing with us. Did Mayo Clinic suggest any treatment or therapy for your Central Sensitization diagnosis?

Jump to this post

Hi, yes they had me go to a class and said you basically have to change lifestyle and way of thinking. Deep breathing exercises, movement, stretching, relaxation and learning to live in moderation are all needed to retrain the brain.

REPLY

Hi, I have been monitoring this site for the past couple of weeks waiting to anyone who might have something new to share about Central Sensitization syndrome. I was diagnosed with this a couple of years ago so I would like to respond. I still find it odd that this medical problem mostly happens to women. I have done a lot of research on this syndrome on my own mainly because there are so few people with this diagnosis and even fewer to have a conversation with. What these people are telling you are generalities. From what I have read, this affects everyone differently as to how hypersensitive you have become. Some people have this problem in a more mild intensity if that is possible. Some people’s hypersensitivity is off the charts. Pain is a very big part of this, but there is so much more other than pain intensity. In my situation, it has affected all my senses. It has affected my thinking process. This has made me more chemically sensitive things I had no problem using before. I have been told by my neurologist and a gastroenterologist that I am seeing, that sometimes the hypersensitivity wares off but I have never read that happening in all my research. Maybe it does to some extent but that hasn’t happened to me. As a matter of fact, over the past couple of years it has increased slowly but surely. I have thyroid disease and because thyroid disease has to do with hormone production and in my case, the lack of hormone production, this disease directly affects my Central Sensitization Syndrome. I don’t know if you have thyroid disease and from what I heard from some other ladies who emailed me, they don’t have this problem. From what I have gathered, there are a lot of reasons people end up with Central Sensitization. From what I have read, this is partly a genetic problem. I think that some of us are predisposed to having this happen to them. There is a relatively new research study that was published in 2018 that is very interesting. These researchers have dividing this Central Sensitization into two parts to better define what is really happening to someone. There is Central Sensitization and then there is Central Hypersensitivity. You could have one or the other or both. It might be something for you if you are interested. This is my take on how you could deal with Central Sensitization Syndrome. I think all those things that these people told you about are good ideas and I did and would try them for yourself. Here is the rub, so to speak, these things no longer help me. I never got to ask those ladies if any of those things still help them. For me it is the hypersensitivity level that I am experiencing all the time. I am in pain constantly. I can never rest or calm down. I only sleep about 2 to 4 hours a day if I am lucky. The cognitive affect has made it almost impossible to meditate and I started meditating when I was in my twenties. I am 71 now. Someone mentioned on the Central Sensitization site about the adrenaline rush he was experiencing. I experience that same thing, from the time I open my eyes in the morning to the time I pass out from the exhaustion of having to deal with that. I am not trying to discourage or make your situation hopeless, just trying to be realistic. As far as I know there is no cure for this diagnosis and there is no real successful treatments right now. My best description of this problem is how well can you deal with wild roller coaster ride all day long? If these people haven’t suggested this, I will. Try to find a very knowledgeable psychologist who knows about this medical problem. In my estimation, this psychologist has to realize that this is not a psychiatric problem, but a medical one. You need someone like this in you medical help because this will drive you nuts. I have found some much of this medical problem makes no real sense to you or anyone else who might be listening to, especially doctors. I get muscle spasms for no discernible reason. My mind races at a pace that I would say is computer like. I am not having crazy thoughts, but I am able to solve complicated problems faster. My experiences maybe different than yours but there will be no easy answers for you. I hope what I have related to you will be of some help. If you want, I am willing to chat. I will tell you that I just had a pain injection for nerve damage that was caused during an operation I had back in 2006. This is now my only pain relief. I can no longer use pharmaceutical pain killer of any kind because of the chemical sensitivity I have. There is one thing positive about being chemically sensitive, this injection last longer for me than it does for most people. It is a steroid injection that my neurologist gives me. This injection usually lasts 1 to 2 months for his other patients but for me it lasts longer. I started these about 2 years ago after I detoxed from the Fentynal patch. First it would last for about 4 months and then it started lasting longer. The last one Lasted from January 2019 to December 2019. I really don’t why this one lasted so long and unfortunately the neurologist is a very busy doctor and has very little time for me to ask my questions. I can’t find anything about this occurrence in my research. I will tell this, when that medication wares off, and it is always an excruciating surprise, I wish I was dead. It is hell on earth. Reality is something you should always be aware of.

REPLY

Hi, I would like to add a couple of more thoughts to what I have stated so far. Retrain your brain sounds good on paper but since I don’t know old you are, try doing that. Your central nervous system is you in a nutshell. If you are 15, maybe that is possible. At my age, I have lived a life time with a lifetime of experience and that shapes who you are. Central Sensitization Syndrome affects your emotional being. Most of the time, those muscle spasms I get are caused by me getting upset or any stressful situation. They can show up in the most unlikely place at the weirdest times. I had to realize that for the most part, they only last for a couple of minutes. Every once in awhile they last longer and that’s when I have to go to my neurologist for a pain injection just to relieve that problem. If you are mostly dealing with pain, you will have to understand that you don’t have to see a doctor. A doctor is really useless in these situations. From what I have read, people misinterpret this pain as something else is wrong with you. Every once in awhile I get muscle spasms in my stomach area. If you went to a primary doctor he might put you through a whole battery of tests and wouldn’t find anything wrong. My rule of thumb is if the pain is so severe and lasts more than a couple of days, then I would make that appointment. I don’t know what other medical problems you have been diagnosed with, so this situation will be up to you. In my case, for the most part, I am physically healthy. Most of the time, people who see me and talk to me, think I am fine. I eat really good foods, I exercise 7 days a week. I find projects to work on to keep my mind busy and distracted from what has happened to me. Like I mentioned before, the reality is they no longer help. This problem is all consuming and never leaves me alone. The best thought for me is and it is very hard, accepting this now reality. I am a different person than I use to be in a lot of ways and I don’t like it.

REPLY

Watch the Central Sensitization video of Dr. Slutten, head of Jacksonville's Mayo Clinic's Pain and Rehabilitation Program on YouTube. (Posting the link was denied.)

The more one thinks or does anything that reminds them of their Central Sensitization the more amplified their symptoms become.

The three week Pain and Rehabilitation Program can be a life saver. It definitely improves one's quality of life.

REPLY
@healingone

Watch the Central Sensitization video of Dr. Slutten, head of Jacksonville's Mayo Clinic's Pain and Rehabilitation Program on YouTube. (Posting the link was denied.)

The more one thinks or does anything that reminds them of their Central Sensitization the more amplified their symptoms become.

The three week Pain and Rehabilitation Program can be a life saver. It definitely improves one's quality of life.

Jump to this post

Hi @healingone, I noticed that you wished to post a URL to a video with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

In this video, Mayo Clinic's Christopher Sletten, Ph.D., ABPP discusses Central Sensitization Syndrome

https://youtu.be/8defN4iIbho

Healingone, I'd be interested in hearing more about your experience at the Pain Rehabilitation Center (PRC). Did you attend it at Mayo Clinic in Florida? What was one of your key learning experiences from the 3 week program?

REPLY
@colleenyoung

Hi @healingone, I noticed that you wished to post a URL to a video with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

In this video, Mayo Clinic's Christopher Sletten, Ph.D., ABPP discusses Central Sensitization Syndrome

https://youtu.be/8defN4iIbho

Healingone, I'd be interested in hearing more about your experience at the Pain Rehabilitation Center (PRC). Did you attend it at Mayo Clinic in Florida? What was one of your key learning experiences from the 3 week program?

Jump to this post

I attended in Florida.

Through the program, I learned how to
increase my quality of life and manage my symptoms.

REPLY
Please sign in or register to post a reply.