Central sensitization syndrome and treatment?

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.

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.

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.

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.

@jan64
I am sorry to hear of your suffering and can empathize.

Don’t let your neurologist discourage you from getting answers, diagnoses, and treatment. I have small fiber neuropathy confirmed by biopsy that started in my feet (burning/pins and needles).

It sounds like your accident may have contributed to your cervical spine issues and is aggravating your arthritis in your hands. How did you injure your thumb? Do your arms and hands feel weak and clumsy (do you drop things and is it hard to write/write legibly)? I had spinal cord and nerve root compression affecting my arms/hands (weakness/clumsiness/dropped things/handwriting worsened) plus I had bladder control issues and walking was hard (felt like I salad wearing cement boots). I even noticed swallowing/speaking issues.

I had seen a neurologist, rheumatologist and multiple spine specialists but it took me time to finally get properly diagnosed with cervical spondylotic myelopathy by my 3rd spine specialist. I, too, had a car accident where I had some whiplash plus a desk job over 30 years which contributed to neck problems. Many of my symptoms improved after ACDF surgery on C5-C6 to relieve compression and stop further injury to my spinal cord. I still have some weakness in my wrists/hands and I have hurt my thumb joint multiple times as a result.

Have you been to an orthopedic spine specialist to review symptoms and get an updated MRI of your cervical spine to see if surgery would help you?

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.

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.

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.

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.