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Small Fiber Neuropathy & Pudendal Neuralgia - Hope Thread!

somaticalchemy

New Member
Hi everyone,

I’ve been a silent reader here for quite some time, but I wanted to finally share something that I hope brings a little light to anyone who has received the big and scary small fiber neuropathy diagnosis.

Like so many of you, I went to countless doctors searching for answers. Eventually, I fully immersed myself in the mind-body space and decided to go all in. I am not completely symptom-free yet, but I have improved to the point of fully functioning — and I just returned from traveling across Europe and Africa. Only four months ago, I was bed-bound from the intensity of the pain and truly didn’t know how I would keep going.

Nerve pain is absolutely terrifying. Not only is it painful, but the sensations are so strange and unsettling. I know that people with an SFN diagnosis, central sensitization, or CRPS often find it especially difficult to connect with the mind-body concept because our symptoms feel so severe and mind-boggling.

A little about my journey — in February 2025, I moved across the world to be with my partner. Unfortunately, my living situation became quite stressful. Long story short, I developed insomnia and extreme sensory sensitivity to noise. Cars passing outside felt like they were practically inside my ears. When I later moved in with my boyfriend, the symptoms eased for a short while.

A few months later, I developed what I thought was a UTI, which slowly progressed into full-blown pelvic pain. I had experienced UTIs growing up and had a subconscious fear around them, and I truly believe my brain latched onto that fear and ran with it. I’m on the other side of that mindset now, but I’m not afraid to admit that at the time, I genuinely freaked out — to the point of seeing my OB-GYN several times a week.

I grew up as an athlete and was very used to pain from injuries. What made this different was that it seemed to come from nowhere (or so I thought ). I feel fortunate that my academic background made it easier for me to understand and accept that the pain could be brain-based. Within just four weeks, I was completely free of pudendal neuralgia pain and no longer experienced pelvic symptoms aside from normal menstruation.

Then came my “perfect storm” — full-body SFN — which made the pudendal neuralgia feel mild in comparison.

I won’t go into detail about my symptoms, and I really encourage you not to focus too much on finding someone whose symptoms match yours exactly. It truly doesn’t matter. One person’s SFN is another person’s back pain — they’re labels for symptoms, but they don’t define the mechanism. I did experience (and sometimes still experience) the typical tingling, burning, stabbing, and skin sensitivity that characterize SFN.

When you have nerve symptoms, you are often dealing with more than just dysregulation — your nervous system is sensitized. That means your internal alarm system has become incredibly sensitive, interpreting almost everything as a threat. And when you’re in pain 24/7, how could it not? I completely understand.

At the beginning, no amount of meditation, breathwork, or success stories seemed to help.

In the end, there were only two things I truly needed.

The first was acceptance — which felt like the hardest thing in the world. Accepting your situation can feel impossible because you can’t imagine living like this forever. But acceptance isn’t about forever. It’s about accepting this moment, right now.

The second was allowing.

Sam Miller and Maggie Sterling do a beautiful job explaining this, but to me, allowing meant being moment-by-moment okay with the terrifying sensations happening in my body — without trying to change them. Tools are helpful not because they “fix” you, but because they help you allow. That’s why one person connects with meditation while another connects with yoga. It doesn’t matter which tool you use — what matters is the shift from symptom-fixing to mindset.

When you allow, you build indifference. And indifference is what rewires the brain. The beautiful thing is that you don’t have to consciously rewire your brain — it already knows how. We just have to stop interfering.

Some things that helped me practice allowing:

* Engaging in life and seeing friends again (even when I felt awful)
* Reconnecting with hobbies I genuinely love — reading, coloring, cooking, self-care, thrifting, walking
* Listening to music and dancing to shift my mood
* Growing closer to God
* Healing my inner child by buying stuffed animals, toys, soft blankets, and coloring books
* Journaling freely without judgment
* Crying and fully feeling my emotions on hard days
* Showing myself compassion when things felt heavy
* Watching recovery stories (Dan Buglio, Raelan Agle, The Steady Coach) — I loved seeing people get better
* Getting a part-time job and being around others again

I’m still on this journey, but I feel incredibly grateful for the progress I’ve made in just five months. I wanted to share in the hope that it might help even one person feel less alone.

I’m always here if anyone needs support.

With love always,
SA x
 
Thank you for sharing your story with us. I love seeing how others get better and continue to work on it. You stated the work so beautifully. Sometimes we call it "work" but really, its actually taking care of yourself and finding that joy in life again.
 
Thank you for sharing your story with us. I love seeing how others get better and continue to work on it. You stated the work so beautifully. Sometimes we call it "work" but really, its actually taking care of yourself and finding that joy in life again.
Thank you so much! I absolutely agree (:
 
Hola a todos,

He sido un lector silencioso aquí durante bastante tiempo, pero quería finalmente compartir algo que espero traiga un poco de luz a cualquiera que haya recibido el gran y aterrador diagnóstico de neuropatía de fibras pequeñas.

Como muchos de ustedes, fui a innumerables médicos en busca de respuestas. Finalmente, me sumergí por completo en el espacio mente-cuerpo y decidí darlo todo. Todavía no estoy completamente libre de síntomas, pero he mejorado hasta el punto de funcionar plenamente, y acabo de regresar de un viaje por Europa y África. Hace solo cuatro meses, estaba postrada en cama por la intensidad del dolor y realmente no sabía cómo iba a seguir adelante.

El dolor nervioso es absolutamente aterrador. No solo es doloroso, sino que las sensaciones son extrañas e inquietantes. Sé que a las personas con diagnóstico de neuropatía periférica, sensibilización central o síndrome de dolor regional complejo (SDRC) a menudo les resulta especialmente difícil conectar con el concepto mente-cuerpo porque nuestros síntomas son tan intensos y abrumadores.

Un poco sobre mi experiencia: en febrero de 2025, me mudé al otro lado del mundo para estar con mi pareja. Desafortunadamente, mi situación vital se volvió bastante estresante. En resumen, desarrollé insomnio y una extrema sensibilidad sensorial al ruido. Sentía como si los coches que pasaban por la calle estuvieran prácticamente dentro de mis oídos. Cuando más tarde me mudé con mi novio, los síntomas remitieron por un tiempo.

Unos meses después, desarrollé lo que creí que era una infección urinaria, que poco a poco fue progresando hasta convertirse en un dolor pélvico intenso. Había sufrido infecciones urinarias de niña y tenía un miedo subconsciente a ellas, y creo que mi cerebro se aferró a ese miedo y lo dejó fluir. Ahora he superado esa mentalidad, pero no me da miedo admitir que en aquel momento me asusté de verdad, hasta el punto de ir a ver a mi ginecólogo varias veces por semana.

Crecí como deportista y estaba muy acostumbrada al dolor por lesiones. Lo que lo hacía diferente era que parecía surgir de la nada (o eso creía). Me siento afortunada de que mi formación académica me facilitara comprender y aceptar que el dolor podía tener su origen en el cerebro. En tan solo cuatro semanas, me libré por completo del dolor de neuralgia del pudendo y dejé de experimentar síntomas pélvicos, aparte de la menstruación normal.

Luego vino mi “tormenta perfecta” (neuroencefalopatía multifocal progresiva de cuerpo completo), lo que hizo que la neuralgia del pudendo pareciera leve en comparación.

No entraré en detalles sobre mis síntomas, y les recomiendo encarecidamente que no se concentren demasiado en encontrar a alguien cuyos síntomas coincidan exactamente con los suyos. Realmente no importa. El SFN de una persona es el dolor de espalda de otra: son etiquetas para los síntomas, pero no definen el mecanismo. Experimenté (y a veces sigo experimentando) el hormigueo, ardor, punzadas y sensibilidad cutánea típicos del SFN.

Cuando tienes síntomas nerviosos, a menudo te enfrentas a algo más que una simple desregulación: tu sistema nervioso está sensibilizado. Eso significa que tu sistema de alarma interno se ha vuelto increíblemente sensible, interpretando casi todo como una amenaza. Y cuando tienes dolor las 24 horas del día, ¿cómo podría no serlo? Lo entiendo perfectamente.

Al principio, ninguna meditación, ningún trabajo de respiración ni ninguna historia de éxito parecía ayudar.

Al final, sólo había dos cosas que realmente necesitaba.

La primera fue la aceptación, que me pareció lo más difícil del mundo. Aceptar tu situación puede parecer imposible porque no te imaginas vivir así para siempre. Pero la aceptación no se trata de la eternidad. Se trata de aceptar este momento, ahora mismo.

El segundo fue permitir.

Sam Miller y Maggie Sterling hacen un excelente trabajo al explicar esto, pero para mí, permitir significaba estar conforme con las sensaciones aterradoras que me aquejaban en el cuerpo, momento a momento, sin intentar cambiarlas. Las herramientas son útiles no porque te "arreglen", sino porque te ayudan a permitir. Por eso una persona conecta con la meditación mientras que otra conecta con el yoga. No importa qué herramienta uses; lo que importa es pasar de la corrección de los síntomas a la mentalidad.

Cuando permites, construyes indiferencia. Y la indiferencia es lo que reconfigura el cerebro. Lo bueno es que no tienes que reconfigurarlo conscientemente; ya sabe cómo. Solo tenemos que dejar de interferir.

Algunas cosas que me ayudaron a practicar el permitir:

* Volver a disfrutar de la vida y ver a mis amigos (incluso cuando me sentía fatal)
* Reconectarme con pasatiempos que realmente amo: leer, colorear, cocinar, cuidarme, comprar en tiendas de segunda mano, caminar.
*Escuchar música y bailar para cambiar mi estado de ánimo.
* Acercándose más a Dios
* Sanar a mi niño interior comprando peluches, juguetes, mantas suaves y libros para colorear.
* Escribir un diario libremente y sin juicios.
*Llorar y sentir plenamente mis emociones en los días difíciles.
*Mostrarme compasión cuando las cosas se sentían pesadas.
* Ver historias de recuperación (Dan Buglio, Raelan Agle, The Steady Coach): me encantaba ver a la gente mejorar.
* Conseguir un trabajo a tiempo parcial y volver a estar rodeado de otras personas.

Sigo en este camino, pero me siento increíblemente agradecido por el progreso que he logrado en tan solo cinco meses. Quería compartir esto con la esperanza de que ayude a alguien a sentirse menos solo.

Siempre estoy aquí si alguien necesita apoyo.

Con amor siempre,
SA x


Thank you so much for sharing your experience and the amazing progress you’ve made so far. I truly think you’re doing an incredible job. I really want to be able to enjoy life too, but it’s still very hard for me. Sometimes I manage to, but the pain can get really intense and it still keeps me from fully enjoying a social life or allowing myself to be 100% happy. Even so, reading stories like yours and connecting with people who are further along in their recovery really encourages me. Thank you again.
 
Thank you so much for sharing your experience and the amazing progress you’ve made so far. I truly think you’re doing an incredible job. I really want to be able to enjoy life too, but it’s still very hard for me. Sometimes I manage to, but the pain can get really intense and it still keeps me from fully enjoying a social life or allowing myself to be 100% happy. Even so, reading stories like yours and connecting with people who are further along in their recovery really encourages me. Thank you again.

Hello! Thank you for taking the time to reply to my story. Also thank you so much for your kind words, they mean so much. What stuck out to me about your comment is how your pain prevents you from engaging in life at times and being 100% happy. I too went through this mindset for a while and a helpful shift was understanding that for a while 100% happy isn’t going to look like it did “before” your symptoms began. Meeting yourself where you are everyday is super important and I too still have days where maybe the only thing I can do is lay on the couch and watch films but that will be my capacity for the day and that’s enough. One thing I forget to mention in my story is waiting for your symptoms to lessen or go away before you can be happy is unfortunately the opposite of how this process occurs. It’s super counterintuitive I know. But in order to measure getting better or progress your actually measuring growing your capacity to tolerate discomfort while living your life and your body will follow. Let me know if you’d ever want to talk further! Keep going !!
 
Hello! Thank you for taking the time to reply to my story. Also thank you so much for your kind words, they mean so much. What stuck out to me about your comment is how your pain prevents you from engaging in life at times and being 100% happy. I too went through this mindset for a while and a helpful shift was understanding that for a while 100% happy isn’t going to look like it did “before” your symptoms began. Meeting yourself where you are everyday is super important and I too still have days where maybe the only thing I can do is lay on the couch and watch films but that will be my capacity for the day and that’s enough. One thing I forget to mention in my story is waiting for your symptoms to lessen or go away before you can be happy is unfortunately the opposite of how this process occurs. It’s super counterintuitive I know. But in order to measure getting better or progress your actually measuring growing your capacity to tolerate discomfort while living your life and your body will follow. Let me know if you’d ever want to talk further! Keep going !!

Love this @somaticalchemy and congratulations on all of your progress! :)
 
Could you elaborate more on how you got rid of your pelvic symptoms? This is really great I'm so glad you're feeling better!

thank you! I appreciate your kindness! as mentioned before recovery isn’t entirely an active process. My pelvic symptoms went away when I no longer cared if they were there or not. I simply went back to living my life regardless if my pelvis was going to be in pain. For me once I deduced it was TMS I got over the fear almost immediately. I used no tools recovering from my pelvic symptoms except for allowing and be okay with whatever my body presented me moment by moment until they faded away entirely.
 
thank you! I appreciate your kindness! as mentioned before recovery isn’t entirely an active process. My pelvic symptoms went away when I no longer cared if they were there or not. I simply went back to living my life regardless if my pelvis was going to be in pain. For me once I deduced it was TMS I got over the fear almost immediately. I used no tools recovering from my pelvic symptoms except for allowing and be okay with whatever my body presented me moment by moment until they faded away entirely.

Thank you! I'm trying to get into this outcome independence mindset but it's hard!
 
Hello, how are you? I wanted to ask you a couple of questions, if you don’t mind.
During your recovery, did you ever have moments when you felt emotionally exhausted and cried because of it? I sometimes experience that because my main symptom is very strong nerve-type pain in my arms. It’s so intense that it often makes it hard for me to feel calm or reconnect with life, happiness, and the simple joy of living.
Because the pain is in my arms, it’s difficult to do things I would normally enjoy, even though I’m trying to keep living my life and doing my responsibilities. Sometimes I cope by walking a lot so I don’t focus on the pain, but it can still be very exhausting both physically and emotionally.
I wanted to ask if you ever experienced pain that was this strong during your process. And if so, were you still able to recover despite those moments of exhaustion and doubt?
Any advice would mean a lot to me.



Hola a todos,

He sido un lector silencioso aquí durante bastante tiempo, pero quería finalmente compartir algo que espero traiga un poco de luz a cualquiera que haya recibido el gran y aterrador diagnóstico de neuropatía de fibras pequeñas.

Como muchos de ustedes, fui a innumerables médicos en busca de respuestas. Finalmente, me sumergí por completo en el espacio mente-cuerpo y decidí darlo todo. Todavía no estoy completamente libre de síntomas, pero he mejorado hasta el punto de funcionar plenamente, y acabo de regresar de un viaje por Europa y África. Hace solo cuatro meses, estaba postrada en cama por la intensidad del dolor y realmente no sabía cómo iba a seguir adelante.

El dolor nervioso es absolutamente aterrador. No solo es doloroso, sino que las sensaciones son extrañas e inquietantes. Sé que a las personas con diagnóstico de neuropatía periférica, sensibilización central o síndrome de dolor regional complejo (SDRC) a menudo les resulta especialmente difícil conectar con el concepto mente-cuerpo porque nuestros síntomas son tan intensos y abrumadores.

Un poco sobre mi experiencia: en febrero de 2025, me mudé al otro lado del mundo para estar con mi pareja. Desafortunadamente, mi situación vital se volvió bastante estresante. En resumen, desarrollé insomnio y una extrema sensibilidad sensorial al ruido. Sentía como si los coches que pasaban por la calle estuvieran prácticamente dentro de mis oídos. Cuando más tarde me mudé con mi novio, los síntomas remitieron por un tiempo.

Unos meses después, desarrollé lo que creí que era una infección urinaria, que poco a poco fue progresando hasta convertirse en un dolor pélvico intenso. Había sufrido infecciones urinarias de niña y tenía un miedo subconsciente a ellas, y creo que mi cerebro se aferró a ese miedo y lo dejó fluir. Ahora he superado esa mentalidad, pero no me da miedo admitir que en aquel momento me asusté de verdad, hasta el punto de ir a ver a mi ginecólogo varias veces por semana.

Crecí como deportista y estaba muy acostumbrada al dolor por lesiones. Lo que lo hacía diferente era que parecía surgir de la nada (o eso creía). Me siento afortunada de que mi formación académica me facilitara comprender y aceptar que el dolor podía tener su origen en el cerebro. En tan solo cuatro semanas, me libré por completo del dolor de neuralgia del pudendo y dejé de experimentar síntomas pélvicos, aparte de la menstruación normal.

Luego vino mi “tormenta perfecta” (neuroencefalopatía multifocal progresiva de cuerpo completo), lo que hizo que la neuralgia del pudendo pareciera leve en comparación.

No entraré en detalles sobre mis síntomas, y les recomiendo encarecidamente que no se concentren demasiado en encontrar a alguien cuyos síntomas coincidan exactamente con los suyos. Realmente no importa. El SFN de una persona es el dolor de espalda de otra: son etiquetas para los síntomas, pero no definen el mecanismo. Experimenté (y a veces sigo experimentando) el hormigueo, ardor, punzadas y sensibilidad cutánea típicos del SFN.

When you have nerve symptoms, you are often dealing with more than just dysregulation — your nervous system is sensitized. That means your internal alarm system has become incredibly sensitive, interpreting almost everything as a threat. And when you’re in pain 24/7, how could it not? I completely understand.

At the beginning, no amount of meditation, breathwork, or success stories seemed to help.

In the end, there were only two things I truly needed.

The first was acceptance — which felt like the hardest thing in the world. Accepting your situation can feel impossible because you can’t imagine living like this forever. But acceptance isn’t about forever. It’s about accepting this moment, right now.

The second was allowing.

Sam Miller and Maggie Sterling do a beautiful job explaining this, but to me, allowing meant being moment-by-moment okay with the terrifying sensations happening in my body — without trying to change them. Tools are helpful not because they “fix” you, but because they help you allow. That’s why one person connects with meditation while another connects with yoga. It doesn’t matter which tool you use — what matters is the shift from symptom-fixing to mindset.

When you allow, you build indifference. And indifference is what rewires the brain. The beautiful thing is that you don’t have to consciously rewire your brain — it already knows how. We just have to stop interfering.

Some things that helped me practice allowing:

* Engaging in life and seeing friends again (even when I felt awful)
* Reconnecting with hobbies I genuinely love — reading, coloring, cooking, self-care, thrifting, walking
* Listening to music and dancing to shift my mood
* Growing closer to God
* Healing my inner child by buying stuffed animals, toys, soft blankets, and coloring books
* Journaling freely without judgment
* Crying and fully feeling my emotions on hard days
* Showing myself compassion when things felt heavy
* Watching recovery stories (Dan Buglio, Raelan Agle, The Steady Coach) — I loved seeing people get better
* Getting a part-time job and being around others again

I’m still on this journey, but I feel incredibly grateful for the progress I’ve made in just five months. I wanted to share in the hope that it might help even one person feel less alone.

I’m always here if anyone needs support.

With love always,
SA x
 
Hello, how are you? I wanted to ask you a couple of questions, if you don’t mind.
During your recovery, did you ever have moments when you felt emotionally exhausted and cried because of it? I sometimes experience that because my main symptom is very strong nerve-type pain in my arms. It’s so intense that it often makes it hard for me to feel calm or reconnect with life, happiness, and the simple joy of living.
Because the pain is in my arms, it’s difficult to do things I would normally enjoy, even though I’m trying to keep living my life and doing my responsibilities. Sometimes I cope by walking a lot so I don’t focus on the pain, but it can still be very exhausting both physically and emotionally.
I wanted to ask if you ever experienced pain that was this strong during your process. And if so, were you still able to recover despite those moments of exhaustion and doubt?
Any advice would mean a lot to me.

Hello, yes I do cry often and I even cry when I am having a flare up because I acknowledge that I am hurting. Hurting is inevitable but suffering is optional. I know this is a lot easier said than done. Having nerve pain full body I completely understand your situation. The thing is both joy and pain can co-exist with one another. There are really no "rules" to TMS. Your nervous system is a reflection of how you feel. Overtime when your response changes you will feel less likely to freak out or cry because you will just have less and less negative thoughts. Pain is a sensation, it is the story we attach to it which causes an emotional reaction. Hope this helps and if you feel stuck in recovery you are always more than welcome to PM me!
 
Hey there. I first got
Pelvic pain when I got married and moved with my wife to the Big City (i’m not a city person, and I was trying to finish a degree).

after about 3 years, we went on a delayed hiking honeymoon. The pelvic pain went away. It came back when I returned to work. So i switched careers and moved cross country. It went away permanently.

Fast forward 15 years and after
more career stress I quickly developed small fiber neuropathy. I immediately jumped into the mind body space but had no success. A biopsy showed significant fiber loss and blood vessel damage at the ankle levels. Freezing feet if I have socks and shoes on, pain when standing, severe pain with walking. no fun. I’m starting mind body work again after 4 years with this but i remain in limbo between structure and pain science.
 
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