Connect
Peripheral Hyper sensitization Neuropathy
Has anyone experienced Peripheral Hyper sensitization Neuropathy?
I had never heard of such a thing.
Last summer was an absolute nightmare for me! I can’t stand the heat! Severe problem with noise and lights. I can’t stand the sound of cars trucks, motorcycles, buses, lawnmowers, weedeaters, people, talking.
When it’s 80 degrees outside, it feels like 120 degrees to me.
I also have Peripheral Neuropathy, can’t use my left hand hardly at all anymore. My right hand is catching up quickly to my left. My hands, my fingers, my arms, my shoulders, the left side of my neck, both feet and my legs up to my knees are in constant pain. I can’t find much information about this, if there is a cure or medication, and nobody, I have talked to doctors pharmacist, healthcare workers no one can really give me an answer. ???
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
I am intolerant of the noise and heat. I just try to avoid both. Have you tried medication?
Did you receive a diagnosis of “Peripheral Hyper sensitization Neuropathy”? Or do you mean that you have peripheral neuropathy and you developed something called Central Sensitization?
I’m not familiar with Peripheral Hyper sensitization Neuropathy, but that’s not to say it doesn’t exist…
The symptoms you’re describing sound a lot like central sensitivity syndrome. It goes by different terms: Central Sensitization, Central Sensitivity Syndrome, Central Pain Syndrome, etc., and I do have that diagnosis. A current term in the literature is “nociplastic pain.”
“Central” refers to the central nervous system, meaning the brain. For people who develop the condition, the brain/central nervous system becomes very sensitive to stimuli—in some situations you can experience a disproportionate amount of pain, or experience pain or other symptoms (migraines, light sensitivity, nausea, etc.) in response to something completely benign. It’s believed that the brain sends out these additional pain signals in an effort to protect the body from further pain, so it sends out all these alarms to stop you from exposing yourself to the source of danger.
It’s like an overactive car alarm.
I’m not sure if that’s what you meant, but you could look into it: https://blogs.webmd.com/pain-management/20231017/pain-and-your-nervous-system
https://blogs.webmd.com/pain-management/20240123/four-signs-you-have-nociplastic-pain
There are several other members on the Chronic Pain discussion boards here and other posts about central sensitization you may want to look into.
Ever since I was diagnosed in 2017, I have really found a great online resource that both explains the condition and outlines treatment options very well or in a way that resonates with what I’ve learned from my physical therapists, so I guess that’s my caveat.
There’s no “cure” in the traditional sense, but it can get better or go into remission and you can improve function. The treatments revolve around finding ways to turn down the volume on the pain signaling—so any strategies that help to directly or indirectly calm your central nervous system (stress management, mindfulness, creativity, sleep hygiene), medications that alter pain signaling (gabapentin/Lyrica, SSRIs) and physical therapy that involves desensitization and graded exposure to slowly help your body and brain re-learn that certain activities are safe. As far as I know, the gold standard of treatment is an integrated chronic pain program, such as the kind that Mayo offers, but it’s a big commitment. It wasn’t really for me.
It’s not really something healthcare providers learn about in medical school, so that would explain why you’ve asked multiple people who knew nothing about it. Especially nowadays with long COVID, there’s more publicity, but it’s still a very under-recognized condition, and even when it is recognized it can be dismissed or misconstrued as an “it’s all in your head,” or a “there’s not much that can be done” situation” neither is true.
There’s a book I found really helpful that I can share if you’re interested. The person who wrote the blogs I referenced above also has a book and website I believe, but there are definitely posts on central sensitivity in the chronic pain group here on Connect. I don’t wanna get carried away (maybe I did already lol) since I’m not 100% sure if that’s what you meant.
-
Like -
Helpful -
Hug
4 ReactionsUgh, I wish there was a way to edit posts. I meant to say: “Ever since I was diagnosed in 2017, I have NOT found a great online resource to describe either the condition or treatment as I’ve experienced it with my physical therapists.”
-
Like -
Helpful -
Hug
1 Reaction@reno10, I did find some research that seems to explain your diagnosis some but I'm not sure.
"peripheral sensitization—hyperexcitability of sensory neurons due to lowered threshold and augmented response to suprathreshold stimuli, caused by peripheral nerve or tissue injury, inflammation and subsequent release of pro-nociceptive mediators from mast cells, macrophages and from neighbouring nerve terminals, such ..."
--- Peripheral Mechanisms of Neuropathic Pain—The Role of Neuronal and Non-Neuronal Interactions and Their Implications for Topical Treatment of Neuropathic Pain: https://www.mdpi.com/1424-8247/14/2/77
I wonder if you might find this discussion started by @rwinney helpful:
--- Central Sensitization - please share your stories: https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/
-
Like -
Helpful -
Hug
6 ReactionsThanks so much
I’ll check it out
-
Like -
Helpful -
Hug
1 ReactionYeppers it’s a real thing.
Last summer I lost consciousness many times because of the heat.
When I come to I am very disoriented & confused.
One time I was on my way to a doctors appointment. I started feeling very dizzy lightheaded. I felt like I was going to pass out so I pulled over into an empty parking lot and I did just that almost 8 hours later I woke up it was dark out, I had no idea where I was I was very confused it was frightening.
Nothing like this has ever happened to me before, I have always loved the summers.
When I have these blackouts, it can be just seconds or minutes or hours.
I am an avid reader and researcher. I do not own a TV. There is a lot of information on the different types of neuropathies..but not much on Peripheral Hyper sensitization
On top of having Peripheral Neuropathy & Hyper Sensitization,
I also have Crohn’s disease.
I’m not sure if they are related I can’t find that answer either.
But I did find one time that Crohn’s disease can cause these types of neuropathy’s
Thanks so much for your information
Every little bit helps
Take care
-
Like -
Helpful -
Hug
3 ReactionsThanks for sharing. Well, I learned something new or learned a new term for something similar to what I experience! My symptoms are not as severe as you, but I do experience temperature, light, and sound sensitivity.
I’m a patient at the #1 rehabilitation hospital in the world (they like to say this in all their marketing) so they do a lot of research on chronic pain syndromes like this. They use something called a “continuum of pain mechanisms,” and the information you and John shared sounds a lot like one of the pain mechanisms on their continuum (the recommended treatment per my care team is very similar to what I described, so perhaps the post he referenced could be helpful).
I agree; it’s maddening there’s not much literature/resources on it. I hope you’re able to find some relief. It takes a lot of trial and error, but I’m wishing you all the best.
-
Like -
Helpful -
Hug
5 ReactionsBravo, bravo @emo - you have single handedly explained Central Sensitization Syndrome (CSS) to @reno10 (and all who read this conversation) so well. How helpful to folks like I once was who are trying to navigate odd, unusual, confusing and most likely - undiagnosed symptoms. Thank you @johnbishop for inviting me to the conversation.
Being a graduate of Mayo Clinic's 3 week Pain Rehabilitation Center program, I first and foremost always want to share Dr. Sletten's valuable video for clarity on CSS.
Dr. Sletten - Central Sensitization Syndrome:
As @emo mentions, the PRC is not for everyone, but that doesn't mean you can't watch and learn. Self advocacy and knowledge is powerful - especially when doctors may be unaware of diagnoses that does not get derived from a test, scan or blood work.
Reno10 - neuropathies and Central sensitization among other diagnosis can be a mixed bag with mitigating circumstances to understand, let alone manage . Sometimes having a clear understanding of the "why behind the what" helps create a plan for management going forward.
How are you feeling? Has learning about CSS and the effects it can have on symptoms you experience such as heat intolerance, helped you feel closer to understanding what you experience? Do you feel that CSS resonates with your situation?
-
Like -
Helpful -
Hug
6 Reactions