Mayo Clinic Connect
Has anyone been diagnosed with Central Sensitization? If so I’d like to discuss.
Liked by Leonard
I went through the PRC program in Rochester nearly a little under two years ago and can say, without hesitation, it changed my life!! I had been dealing with Central Sensitization Syndrome, and a vast array of debilitating symptoms for many years without the proper diagnosis. Before I got sick, I was active and proud of my career. I hadn't been able to do much of anything, let alone work, for about two years prior to attending the PRC. After the program, I was able to go back to work and do all of the things I previously loved – hiking, yoga, camping, traveling, etc!!! The PRC will help you learn how to manage your symptoms and live your life to its fullest potential. I always say to people…I am not who I was before chronic pain – I am even better! I credit all of that to PRC (and so do my family and friends who saw me go through everything). I'm happy to answer any questions you have about the program but my one piece of advice to you is this – it might seem strange at first. It might not "feel" like it's going to work but just trust it. It can work if you follow the plan. These are some of the world's most brilliant doctors and therapists who have researched chronic pain and understand what actually works. I (and many of my cohorts that I went through the program with) are living testaments to its success rates. Wishing you the very best of luck on this life-changing journey you're about to start on. Congratulations on getting the proper diagnosis, finding the program and taking the steps to take back control of this horrible monster (CSS/Chronic Pain) that ruins so many lives.
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@kelseylmontague sounds like you had a better experience at Mayo Rochester than I did just recently. I've been there 5 times now …signed up for the PRC in Feb 2019. May I ask who you saw at Mayo in neurology? Our stories sound very, very similar as far as what type of pain we experience. I've been living with this 5 years now. I too have a diagnosis of Central sensitization, fibromyalgia and intractrable chronic daily migraines.
I have been diagnosed this central sensitization but I believe it to be the wrong diagnosis. Furthermore when after attending lectures on the topic there are few symptoms that aren’t covered by central sensitization. In other words it is so broad that virtually any condition could be described as central sensitization. I really think it should be renamed the “we really don’t know what it wrong with you disease” or there should be quantitative measures to characterize it. If indeed it is the activation of “somatosensory cortex” would that not be measurable?? Wouldn’t that be a safety route to diagnosis rather that labeling everything you don’t understand as CS??
I have had a similar experience at Mayo Jax. Been thru PRC there. I first received a CS diagnosis 8 years ago but have since been treated with moderate success for a Spinal fluid leak. PRC gave me some great coping tools but I believe the central sensitization diagnosis is way overused at Mayo. Even different departments disagree about it.
I concur with both of you. If diagnosed correctly you can get better. If just given a dx bc they don’t know what it is, then you’re kinda screwed. I do my own PRC treatment (I have an idea of what that is, I haven’t been), it helps with coping, but doesn’t do much for all my true physiological problems and diagnoses. Glad I have the correct dx’s now. I do believe that C.S. is the correct dx for certain people with certain pain conditions, but to use it off label is basically like saying any neurological problem is C.S.
Liked by LeighO57
I too was diagnosed with central sensitization by Mayo Jax last summer. It is a catch all for “we don’t know”. I didn’t give up since it just didn’t seem right. As it turns out, I have small fiber neuropathy which was diagnosed via a skin punch test by a neurologist late last year, four years after my symptoms began and I first went to a doctor.
This is concerning to me. I have several autoimmune disorders, scleroderma, endometriosis, pernicious anemia, Raynaud’s,etc. This started happening 18 years ago. It has most definitely been a slow painful progression. I am so tired of hearing “it’s probably your fibromyalgia”. I am so worried about what my undiagnosed conditions have done to me. I am finally taking a leap of faith and going to MAYO in April to hopefully find out what some of my other issues are and to find out what other conditions have been caused by my scleroderma . I am in constant pain daily and I know there are causes for this pain. I am really hoping that instead of hearing fibromyalgia I don’t hear CS instead. As much as I believe these conditions are real, I know there are underlying health issues and I’m hoping they are addressed. That’s why I’m going…It’s all so stressful. Sometimes I wonder if I should just leave the chronic pain off of my symptom list to make sure doctors stay focused on the things that are happening inside of my body.
Liked by John, Volunteer Mentor, lioness
Hi, I have fibromyalgia, and I also experience a feeling of sensory overload in busy social situations that makes me shut down. Does anyone know if the two are linked through central sensitization? (I am not on the autism spectrum.) Also, can anyone suggest any ways to learn how to filter out the extraneous activity so I can continue to function in those environments, which I need to do for work? Thanks!
Hi, @mlbirch – That sounds very challenging to experience a feeling of sensory overload in busy social situations that makes you shut down.
You'll notice I have moved your message to this existing discussion in which you've participated before, "Has anyone been diagnosed with Central Sensitization?" in the Brain & Nervous System group. I did this so that you could talk with the members in this conversation already talking about this disease and who are familiar with what you've inquired about previously related to links between central sensitization and other diseases. If you click VIEW & REPLY in the email notification, you can scroll back through the past and recent posts.
Hoping other members in this thread like @edda @menville @truegrit1213 @cmcmillan5012 @gailfaith @jakedduck1 and others will provide some input on the sensory overload you've experienced. They may also have some thoughts on your question about a potential link between fibromyalgia and this sensory overload feeling, and whether they could be linked through central sensitization. They may also have some suggestions on ways to learn how to filter out the extraneous activity so you can continue to function in busy social situations.
Has a doctor suggested you may have central sensitization? If so, what did he or she say about it and other disease relationships?
Thanks, I do have central sensitization. Do other people with central sensitization have this feeling of overload in busy situations as well? If so, any tips to learn to filter some of it out? Thanks!
For me, meditation works wonders… about three times a day… about ten minutes each time… just finding a quiet place and focusing on slow, deep-breathing. To non-meditators, I'm sure that sounds innocuous, perhaps even lame, but it has an amazingly restorative power once it becomes a daily habit. There is quite a bit of research which supports its calming effect.
Liked by hippiesticks
Is the PRC program their 3 week program? Cant you tell me more about it. I went to the fibromyalgia clinic two day classes in September in Rochester. I can see where this program will work. I’m 20% better but seem to be struggling.
I went through the 3 week program and it helped tremendously. It's a lot of information and dedication to getting better. I also did the 2 day fibro clinic. Both have been helpful. Will never be back to what I was before but I'm slowly learning to accept and adapt.
Liked by John, Volunteer Mentor
I was diagnosed with this as well. That and burning mouth syndrome. What is the 3 week program?
Thank you so very much for posting this! My college age daughter was diagnosed in May, but was not sick for long enough for insurance to cover treatment program. She is now worse off than she was in May and I am trying to talk her into going to Jacksonville or Rochester, but she is quite skeptical. Still worries something else is wrong with her and as soon as she sees the words "group therapy" she balks, thinking that is proof they think it's all in her head and is also hesitant about opening up to a group of "strangers." Do you remember how much of the day was spent in group therapy? Any encouraging words or suggestions for how to talk her into this? Thank you!
I was diagnosed with Central Sensitization Syndrome in 2017. I don’t have the good fortune to be able to go to the Mayo Clinic. I live in California and even if I could afford to go that place, my medical problems caused by a botched surgery and the subsequent poor treatment of my nerve damage, Fentynal, I can’t get on a plane or drive there.
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