Central sensitization syndrome and treatment?

Central sensitization or small fiber neuropathy, whether you have either or both—it’s not your fault. I commend you for advocating for yourself, reaching out, and doing more research to learn more about central sensitization.

I was diagnosed with central sensitization back in 2017, after experiencing small fiber neuropathy since 2015. One diagnosis doesn’t negate the other, and I actually got diagnosed with other conditions as well. I believe everyone with pain, especially with chronic pain conditions like neuropathy could benefit from learning about how the central nervous system processes pain… If I had a soapbox, that would be one of my main topics, but sometimes I end up sounding like a chronic pain evangelist, which I know can be off-putting >_< . The problem is, central sensitization is very poorly explained by many healthcare providers and also on the internet although it’s far better now than it was when I was diagnosed in 2017.

Consider it this way: Pain is an alert that your brain sends out in order to protect you from something it perceives as a threat. With central sensitization, the brain becomes hyper-sensitive to circumstances it perceives as threats, sending out more and more pain signals over time. The more our brains practice something, the better it gets at doing the thing, so the longer you’re in pain, the better your brain gets at delivering pain messages, in an effort to protect you.

I’m very much over-simplifying, but your brain is only doing what it’s evolved to do, which is try to protect you from threats. It’s just over-zealous, kind of like a car alarm that keeps going off for the littlest bump in the night. That’s central sensitization. It could happen to anyone, though certain circumstances may predispose us to it.

I might not be making sense; it took me months of working with a chronic pain PT to learn this, but this is a blog post by a PT I reference often that helps me: https://www.activelyautoimmune.com/post/pain-is-it-all-in-my-head.

Backtracking though, it is possible you could have small fiber neuropathy—it occurs with a normal EMG. And while a skin punch biopsy is the “gold standard” to confirm small fiber neuropathy, it is common to get a false negative. Percentages may be different now, but my neurologist who diagnosed me said a skin punch biopsy misses as many as 30% of SFN cases. A negative result if you still have symptoms does not mean you don’t have SFN.

You mentioned you had injuries and an infection previous to developing symptoms. It is common for SFN and other autoimmune conditions to develop after an infection or virus (this was well-known even before long COVID). That’s what happened to me—I had a really bad virus. Though it was just a really bad cold, and within 4 weeks I started experiencing small fiber neuropathy which in a few months snowballed to involve inflammatory joint pain and POTS.

It was a long process to rule in/out other causes so we could use conventional medicine to treat what we could, and then with central sensitization, there are the medications you mentioned, which change how pain signals are sent out, but there are also non-pharmaceutical, proven strategies to retrain the brain and break the pain cycle. I’m not there yet; I might never be, but my pain sensitive has vastly improved with specialized PT and a pain neuroscience approach. Curable is an app that was recommended to me by a Mayo PT, which uses some elements of the approaches my PTs taught me. There are also books such as, “Unlearn Your Pain.” I don’t love these resources personally because they can sometimes emphasize the, “Change your perspective, change your pain!” thing a bit too much, but they’re more accessible than finding a chronic pain PT and are helpful for trying to wrap your head around the concepts and start thinking about things you might want to try.

Central sensitization is a real diagnosis. I suppose people might think you’re “crazy,” but you’re not. I felt validated when I got this diagnosis because I had something to name and point to, and an explanation. I might never understand how exactly my pain started but I had a better idea of why I was experiencing what I was experiencing and it gave us something to target and treat…and it got better. Even for people who don’t have central sensitization, everyone can benefit from the brain’s neuroplasticity—we can influence how our brains perceive threats and change our pain experience, to a point of course. We can’t change misfiring nerves or bone on bone arthritis, but we can change how our brains respond to those things with pain and often change the intensity. That gave me hope.

People probably do think I’m crazy and it’s not fair. I have POTS, long COVID, I experience post-exertion malaise and I have central sensitization. All these things are very limiting and very invisible. It’s not that I don’t get upset about it. I do. But I try and remind myself the people or providers who are being shortsighted…that’s on them, but me. The most important thing is that I get the care and treatment I deserve and can keep improving and moving forward, whether they think it’s crazy or not.

Hi there @darby413. Hopefully you are feeling some sort of relief having a diagnosis of CSS which explains your ongoing chronic pain. I am sorry and understand the toll it takes in trying to figure out what's wrong and why.

Please take a look at the following video by Mayo Clinic's Dr. Sletten on central sensitization. The first thing is to truly understand what's happening inside your body and why, then, how to treat it -

Dr. Christopher Sletten - Central Sensitization Syndrome:

Here are some discussions you may find helpful that share others experiences of living with CSS (*please keep in mind CSS may present differently for each person*).

Central Sensitization Syndrome - Please share your stories:
https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/
And, my CSS journey of going through the 3 week Mayo Pain Rehab program -

Mayo Pain Rehab - Signing off and my comeback after:
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
It can be a lot to take in, but there is hope, and living with CSS can become more manageable with work.

May I ask - how do you feel about your pain clinics' doctor's diagnosis of your pain? Do you feel that all other possibilities have been ruled out and you are agreeing that CSS is the final answer?

Got this video from my physician a year ago i guess i didnt realize it was from mayo, i am 53 and recently diagnosed with central sensitization and have a 21 y/o son with NF1. i am unable to get an appointment at mayo for confirmation/treatment. i dont think my condition or my bank account have enough commas in it. unfortunate

The neurologist that I have seen twice (30 minutes each time) said that he does not see signs of neurological damage causing PN. I have had MRI, EMG's, bloodwork, etc. Normal except for upper EMG and MRI and X-rays show cervical degeneration and mild stenosis. I am getting a skin biopsy tomorrow for SFN (ordered by rheumatologist). He threw in that it could be Centralization syndrome. He said the pain is real, but did not explain. I have been reading and trying to understand this. My symptoms are mainly burning and tingling in hands and feet, legs up to knees. After that came burning and tingling in spine. I did get deep pain in center of feet (thought it was plantar fasciitis at first). Gabapentin seems to have stopped the burning in legs and hands for most part, but spine continues to flare up later in the day usually (pain and burning). I have tightness in arms and legs (yes, like I'm wearing a stocking). I feel like this possible diagnosis he threw out means that people will just think I'm crazy. I did have several injuries and an infection this year prior to symptoms. I am still having pain in spine, but it is not constant. I am taking 1800 mg of Gabapentin and now 30 amitriptyline at night. Reading about this condition makes me feel as if I caused this to happen.

Hi. I was diagnosed with Central Pain Syndrome 3 years ago. I have flareups in most of my body and have lost muscle/tissue and grown weaker. I recommend this book: How To Live Well with Chronic Pain and Illness by Toni Bernhard. Also, I took a wellness class twice that used this book: Living a Healthy Life with Chronic Pain by a bunch of Stanford authors/. Sandra LeFort, Diana Laurent, etc copyright 2021 published out of Boulder, CO. The COVE app helps me with meditation and breathing. Exercise like walking and others from my PT. I also have a counselor I meet every 2 weeks. I have a psychiatrist for my medications. No more info on the diagnosis. I feel strongly that there is more to my diagnosis. Hope this helps. Take care.