Neuropathy like symptoms - in need of support

[Layla1926]

Hi Layla - my TMS symptoms also began with vulvar pain. I had self-diagnose myself with vulvodynia at one point, and at another was terrified I was slowly developing PGAD. I was convinced for months and months that my symptoms were the result of structural or neural damage. I did pelvic therapy (internal and external), stretching, went to the doctor multiple times and tried multiple topical medications. I was then convinced I had recurring UTIs that were just presenting themselves in a weird way. I stopped wearing tight clothes, sitting in certain positions, etc. As time progressed, some of my symptoms also become more neural in nature -- I was experiencing sciatica, tingling, fasciculations all over my body (but particularly in the vulva which is an incredibly uncomfortable feeling). I don't have skin sensitivity but I had a very bad case of hyperacusis (sensitivity to sound) that I've since been able to overcome. I think they're similar in that they both speak to hypersensitivity to physical stimuli.

All of this to say, our stories share some similarities. I have been on my journey through this for almost exactly a year now. I'm not 100% better yet and in fact I still have some awful days. But I also have longer periods between the symptoms, and I prove more to myself each day the symptoms are there, that I can still have a good day.

The hardest part for me was truly believing that the symptoms were not physical in nature, and once I was able to grasp that belief more fully, the next challenge was shifting my attention away from the pain. Acknowledging it, yes, but not letting it dominate my thoughts and dictate my mood.

I always read people and books on this say that your dread/anxiety/fear of the pain will almost always disappear before the pain itself disappears, and I never understood how that would be possible for me. But I can see it happening, slowly but surely. I'm getting my life back and my symptoms have less power over my every day.

Keep doing the work. For me, I kept my head down and took each day at a time, trying to do what I could (but not trying too hard that the recovery becomes all you think about), and I surprised myself one day as I started to recognize myself again. I was returning to my life. You will get there.

I recommend Dr. Gordon Pain Recovery Program, but also Steve Ozanich's The Great Pain Deception book...that book was the most influential for me because his symptoms are all across the board - he even experience temporary paralysis that he recovered from through this work. His story is inspirational and a great reminder that TMS is not just about back pain. It can present in so many ways.

Hi! Thank you so much for replying. In between the afwul days you don't have sensations at all?
My sensations have become better, but I still don't have days without them. So thats when I'm starting to doubt: like I did got better, but there is still some lingering so that's it... And maybe the last pain is not leaving, because of this doubt or the big desire for the pain to leave. I still dont have the feeling that I can live a full life with this pain. So there is still some fear or frustration I guess... Ughhh very frustrating when you know what the answer is, but I'm not capable or maybe not even willing yet to just let go. I wake up frustrated, because of the descisions I made in the past and where my life is at now...

Though, I'm glad to hear that you are doing better! Rooting for your full recovery

 

[ARCUser831]

Hi! Thank you so much for replying. In between the afwul days you don't have sensations at all?
My sensations have become better, but I still don't have days without them. So thats when I'm starting to doubt: like I did got better, but there is still some lingering so that's it... And maybe the last pain is not leaving, because of this doubt or the big desire for the pain to leave. I still dont have the feeling that I can live a full life with this pain. So there is still some fear or frustration I guess... Ughhh very frustrating when you know what the answer is, but I'm not capable or maybe not even willing yet to just let go. I wake up frustrated, because of the descisions I made in the past and where my life is at now...

Though, I'm glad to hear that you are doing better! Rooting for your full recovery

They say the beauty in TMS treatment is that there's no side effects, no risk. You can have your doubts, but walk the path anyway, and do the work. I promise you, you'll be surprised how far you come. I relate so much with how you feel, and honestly, some days I revert back to those doubts, but I bounce back faster.

For the longest time, when I felt I had "good" days, it just meant my symptoms were minimal, but they were still there. It has only been in recent months that I've gone some extended periods (1-2 weeks) without that discomfort...and then it comes back full force for a few days or longer. When this first started, the level of discomfort I felt, I never would've thought it was TMS, it was SO uncomfortable. I remember driving myself crazy fixating, looking up my symptoms online, and I remember in those days it was the very worst...because I gave it power with my undivided attention. Once I decided to commit myself to TMS recovery, I started by saying empty affirmations to myself in the mirror, trying to make myself believe them, but not feeling like I did. The affirmations, even if not fully believed, helped because they cut off my fearful thoughts. Every time I had a fear thought like "What if I never get better?" "What if I get worse?" "I hope today isn't a bad day" "I think that exercise is going to flare my symptoms" "I / my life is never going to be the same" I quite literally cut it off with an affirmation. Stop letting your mind go there. Build this like it's a habit. Some of my most helpful affirmations are below, in case you'd like to try this route...

"Healing is not linear, but I'm getting better everyday"
"I let the pain in, and I am letting the pain out"
"I am willing to release the need for this condition"
"I have a benign condition, the body heals naturally"
"I am calm, relaxed, patient, and confident"

Over time, the affirmations were replaced with a general way of thinking that was safer, less catastrophic. I started to wake up and even though the hoping that the discomfort doesn't come never goes away, I began to truly have the confidence that I can still have a good day and live my life in spite of that. I'm by no means all the way there, but once you see any progress from your TMS work, it because a wonderful feedback loop of belief.

For me, it helped to ask myself some questions that help indicate if what you have is TMS. Have you answered these before?

- Is your pain constant or does it come and go / change in intensity
- Is your pain very local, or in multiple locations? Does it move around?
- Do you have a history of anxiety?
- Does your pain get better or worse when you move in certain ways or do certain things?
- Did it start after an injury or stressful time in your life?

I'm happy to talk through it with you if that helps. I know I'm just a stranger on the internet, but based on your symptoms similarity to mine, I have full confidence you can overcome this.

 

[JanAtheCPA]

The affirmations, even if not fully believed, helped because they cut off my fearful thoughts

I just finished an interesting book by a neuroscientific researcher who has been studying this effect for years along with a bunch of other techniques for dealing with the negative chatter in our heads. In fact, the book is titled Chatter. It's by Ethan Kross, just published in 2021, and I had to wait a number of weeks to get it from my local library- then I just went ahead and ordered it for myself, LOL. Very readable, great advice and different techniques that will resonate with different people, and the book is not nearly as long as I thought it was because half of it is extensive footnotes and bibliographies, along with a 10 point "Toolkit".

Great advice, @ARCUser831!

 

[TG957]

I just finished an interesting book by a neuroscientific researcher who has been studying this effect for years along with a bunch of other techniques for dealing with the negative chatter in our heads. In fact, the book is titled Chatter. It's by Ethan Kross, just published in 2021, and I had to wait a number of weeks to get it from my local library- then I just went ahead and ordered it for myself, LOL. Very readable, great advice and different techniques that will resonate with different people, and the book is not nearly as long as I thought it was because half of it is extensive footnotes and bibliographies, along with a 10 point "Toolkit".

Great advice, @ARCUser831!

Wow, my library has 8 week hold on it! Must be a great book! Thank you for the recommendation!

 

[JanAtheCPA]

If anyone else is interested in learning more about this book, here is my post after I finished it, which refers to another longer description before I had finished (when I thought it was too long, but it turns out it wasn't) https://www.tmswiki.org/forum/threads/what-if-i-had-a-non-traumatizing-childhood.27831/page-2#post-144141 (What if I had a non-traumatizing childhood?) (TG I know you were already on this thread ).

Everything in it is relatable to what we refer to as our TMS brain mechanisms AND it has ten different techniques to try. Something for everyone!

 

[Layla1926]

They say the beauty in TMS treatment is that there's no side effects, no risk. You can have your doubts, but walk the path anyway, and do the work. I promise you, you'll be surprised how far you come. I relate so much with how you feel, and honestly, some days I revert back to those doubts, but I bounce back faster.

For the longest time, when I felt I had "good" days, it just meant my symptoms were minimal, but they were still there. It has only been in recent months that I've gone some extended periods (1-2 weeks) without that discomfort...and then it comes back full force for a few days or longer. When this first started, the level of discomfort I felt, I never would've thought it was TMS, it was SO uncomfortable. I remember driving myself crazy fixating, looking up my symptoms online, and I remember in those days it was the very worst...because I gave it power with my undivided attention. Once I decided to commit myself to TMS recovery, I started by saying empty affirmations to myself in the mirror, trying to make myself believe them, but not feeling like I did. The affirmations, even if not fully believed, helped because they cut off my fearful thoughts. Every time I had a fear thought like "What if I never get better?" "What if I get worse?" "I hope today isn't a bad day" "I think that exercise is going to flare my symptoms" "I / my life is never going to be the same" I quite literally cut it off with an affirmation. Stop letting your mind go there. Build this like it's a habit. Some of my most helpful affirmations are below, in case you'd like to try this route...

"Healing is not linear, but I'm getting better everyday"
"I let the pain in, and I am letting the pain out"
"I am willing to release the need for this condition"
"I have a benign condition, the body heals naturally"
"I am calm, relaxed, patient, and confident"

Over time, the affirmations were replaced with a general way of thinking that was safer, less catastrophic. I started to wake up and even though the hoping that the discomfort doesn't come never goes away, I began to truly have the confidence that I can still have a good day and live my life in spite of that. I'm by no means all the way there, but once you see any progress from your TMS work, it because a wonderful feedback loop of belief.

For me, it helped to ask myself some questions that help indicate if what you have is TMS. Have you answered these before?

- Is your pain constant or does it come and go / change in intensity
The vulvar pain changes. When I'm lying down the unprovoked burning stops completely. But when I touch the skin it's sore regardless of the position I'm in.
The all over body neuropathylike sensation is constant in the fact that I don't have 'pain free days' but it does go up and down in intensity.
- Is your pain very local, or in multiple locations? Does it move around?
Vulvar is local and it's my whole vulva including the vestibule. And my whole body is sensitive/painfull to touch.
- Do you have a history of anxiety?
The last three years I had a lot of anxiety. Emotionally draining and toxic relationship, felt very hurt.
- Does your pain get better or worse when you move in certain ways or do certain things?
Heading in to the evening the pain is less. For me the end of the day marks that I can relax and that there are no obligations anymore. Also when I wake up the first couple of minutes it feels less as well.
- Did it start after an injury or stressful time in your life?
The vulvar one started after an unjury I think. At first the only burning part was the clitorus. But now it's also the vestibule. And the full body pain is because of stress I think. I always thought it started due to medicin I took, but now I think it's because I was already pretty depressed because of the vulvodynia and on top of that had lots of fights with my boyfriend.

I'm happy to talk through it with you if that helps. I know I'm just a stranger on the internet, but based on your symptoms similarity to mine, I have full confidence you can overcome this.

- Is your pain constant or does it come and go / change in intensity
The vulvar pain changes. When I'm lying down the unprovoked burning stops completely. But when I touch the skin it's sore regardless of the position I'm in.
The all over body neuropathylike sensation is constant in the fact that I don't have 'pain free days' but it does go up and down in intensity.
- Is your pain very local, or in multiple locations? Does it move around?
Vulvar is local and it's my whole vulva including the vestibule. And my whole body is sensitive/painfull to touch.
- Do you have a history of anxiety?
The last three years I had a lot of anxiety. Emotionally draining and toxic relationship, felt very hurt.
- Does your pain get better or worse when you move in certain ways or do certain things?
Heading in to the evening the pain is less. For me the end of the day marks that I can relax and that there are no obligations anymore. Also when I wake up the first couple of minutes it feels less as well.
- Did it start after an injury or stressful time in your life?
The vulvar one started after an unjury I think. At first the only burning part was the clitorus. But now it's also the vestibule. And the full body pain is because of stress I think. I always thought it started due to medicin I took, but now I think it's because I was already pretty depressed because of the vulvodynia and on top of that had lots of fights with my boyfriend.


Thank you for all the advise! I am trying to do the affirmation part. I saw a video from Dan Buglio saying that beeing in control for 2 days and then feeling frustrated and down for 2 days couteracts everything you did prior. The brain stays in stress that way. Very logical. But I just cant manage to be fully hopefull for 3 weeks without feeling sad or so...

 

[ARCUser831]

- Is your pain constant or does it come and go / change in intensity
The vulvar pain changes. When I'm lying down the unprovoked burning stops completely. But when I touch the skin it's sore regardless of the position I'm in.
The all over body neuropathylike sensation is constant in the fact that I don't have 'pain free days' but it does go up and down in intensity.
- Is your pain very local, or in multiple locations? Does it move around?
Vulvar is local and it's my whole vulva including the vestibule. And my whole body is sensitive/painfull to touch.
- Do you have a history of anxiety?
The last three years I had a lot of anxiety. Emotionally draining and toxic relationship, felt very hurt.
- Does your pain get better or worse when you move in certain ways or do certain things?
Heading in to the evening the pain is less. For me the end of the day marks that I can relax and that there are no obligations anymore. Also when I wake up the first couple of minutes it feels less as well.
- Did it start after an injury or stressful time in your life?
The vulvar one started after an unjury I think. At first the only burning part was the clitorus. But now it's also the vestibule. And the full body pain is because of stress I think. I always thought it started due to medicin I took, but now I think it's because I was already pretty depressed because of the vulvodynia and on top of that had lots of fights with my boyfriend.


Thank you for all the advise! I am trying to do the affirmation part. I saw a video from Dan Buglio saying that beeing in control for 2 days and then feeling frustrated and down for 2 days couteracts everything you did prior. The brain stays in stress that way. Very logical. But I just cant manage to be fully hopefull for 3 weeks without feeling sad or so...

To me, all of your responses point to TMS...I can break down my thinking. Since, especially in the beginning, I found myself doubting so much, I created a proof sheet...which was just a note on my phone listing out every rational thought or experience I've had that affirms what I'm dealing with is TMS. That could be something you find very helpful to create and refer to when you're feeling particularly doubtful.

1. A structural or physical issue would very likely be aggravated by the same movements every single time you perform them. Think of a sprained ankle, EVERY time you try to bend it, it will hurt. The fact that your pain ebbs and flows and changes is an indication of TMS.

2. While your vulvar pain is very localized (as so is mine), it is very helpful to look at your symptoms as a whole. Rationally ask yourself, what could have happened physically to cause both local vulvar pain and sensitivity to touch across your entire body within such a short span of time? Multiple symptoms popping up in different places around the same time points to TMS.

3. You and me both, my symptoms started after the worst anxiety I'd ever experienced in my life. In hindsight, the onset made sense to me. Sounds like that may be the case for you. Also, some people believe where we develop TMS is metaphorical in a way...and they say pain in the genital/pelvic area tends to align with relationship issues.

4. My pain follows the EXACT same pattern. When I wake up, I am always pain free...that right there is such a strong sign that your brain is controlling these symptoms. And my pain always heightens the most midmorning during my workday and then tapers off as I work through all of my responsibilities and stressors for the day. By the way, they say pudendal neuralgia tends to worsen as the day goes on, which doesn't align with your experience. Also, a physical basis would not follow a pattern within a day, TMS would.

5. One of the most useful things for me to remember is that pain from an injury will always heal. The body has an amazing ability to heal itself. I understand chronic pain to be a result of my mind being a bit traumatized by the injury or fear of never healing, thereby perpetuating the sensations.

When you are out and about, with people, etc. does the pain fall into the background? That was also always a big indication for me. If this was really so bad, it would STAY bad when I was distracted.

 

[TG957]

- Is your pain constant or does it come and go / change in intensity
The vulvar pain changes. When I'm lying down the unprovoked burning stops completely. But when I touch the skin it's sore regardless of the position I'm in.
The all over body neuropathylike sensation is constant in the fact that I don't have 'pain free days' but it does go up and down in intensity.
- Is your pain very local, or in multiple locations? Does it move around?
Vulvar is local and it's my whole vulva including the vestibule. And my whole body is sensitive/painfull to touch.
- Do you have a history of anxiety?
The last three years I had a lot of anxiety. Emotionally draining and toxic relationship, felt very hurt.
- Does your pain get better or worse when you move in certain ways or do certain things?
Heading in to the evening the pain is less. For me the end of the day marks that I can relax and that there are no obligations anymore. Also when I wake up the first couple of minutes it feels less as well.
- Did it start after an injury or stressful time in your life?
The vulvar one started after an unjury I think. At first the only burning part was the clitorus. But now it's also the vestibule. And the full body pain is because of stress I think. I always thought it started due to medicin I took, but now I think it's because I was already pretty depressed because of the vulvodynia and on top of that had lots of fights with my boyfriend.


Thank you for all the advise! I am trying to do the affirmation part. I saw a video from Dan Buglio saying that beeing in control for 2 days and then feeling frustrated and down for 2 days couteracts everything you did prior. The brain stays in stress that way. Very logical. But I just cant manage to be fully hopefull for 3 weeks without feeling sad or so...

The only thing to understand about your symptoms is this: if symptoms are happening all over your body, they can only come from the brain which controls your entire nervous system. Memorize and repeat until fully healed. There will be setbacks on the way, but it is normal, it is human to fall into despair. You just need to get up the next day and start your healing over again.

 

[Layla1926]

To me, all of your responses point to TMS...I can break down my thinking. Since, especially in the beginning, I found myself doubting so much, I created a proof sheet...which was just a note on my phone listing out every rational thought or experience I've had that affirms what I'm dealing with is TMS. That could be something you find very helpful to create and refer to when you're feeling particularly doubtful.

1. A structural or physical issue would very likely be aggravated by the same movements every single time you perform them. Think of a sprained ankle, EVERY time you try to bend it, it will hurt. The fact that your pain ebbs and flows and changes is an indication of TMS.

2. While your vulvar pain is very localized (as so is mine), it is very helpful to look at your symptoms as a whole. Rationally ask yourself, what could have happened physically to cause both local vulvar pain and sensitivity to touch across your entire body within such a short span of time? Multiple symptoms popping up in different places around the same time points to TMS.

3. You and me both, my symptoms started after the worst anxiety I'd ever experienced in my life. In hindsight, the onset made sense to me. Sounds like that may be the case for you. Also, some people believe where we develop TMS is metaphorical in a way...and they say pain in the genital/pelvic area tends to align with relationship issues.

4. My pain follows the EXACT same pattern. When I wake up, I am always pain free...that right there is such a strong sign that your brain is controlling these symptoms. And my pain always heightens the most midmorning during my workday and then tapers off as I work through all of my responsibilities and stressors for the day. By the way, they say pudendal neuralgia tends to worsen as the day goes on, which doesn't align with your experience. Also, a physical basis would not follow a pattern within a day, TMS would.

5. One of the most useful things for me to remember is that pain from an injury will always heal. The body has an amazing ability to heal itself. I understand chronic pain to be a result of my mind being a bit traumatized by the injury or fear of never healing, thereby perpetuating the sensations.

When you are out and about, with people, etc. does the pain fall into the background? That was also always a big indication for me. If this was really so bad, it would STAY bad when I was distracted.

Hi! Yesss and rationally I know that it's TMS, but what's stopping me is ruminating about the past and the future and the constant loop of doubt and frustration. Honestly it's really really tyring... But in a different post @JanAtheCPA was talking about Repetitive Unpleasant Thoughts (RUT's) and it really resonated with me. I think that RUT's and ruminating constantly is my trigger that keeps the sensations going. I don't know how that is for you? Can you just live your life without the constant negative self talk and doubt?
As of now I'm trying to talk to my brain and calm it. Also visualizing myself healed gives me a better feeling.

 

[Layla1926]

The only thing to understand about your symptoms is this: if symptoms are happening all over your body, they can only come from the brain which controls your entire nervous system. Memorize and repeat until fully healed. There will be setbacks on the way, but it is normal, it is human to fall into despair. You just need to get up the next day and start your healing over again.

Yes I read that sudden acute full body neuropathy is in all cases ideopathic. And I feel that anything that is ideopathic is probably TMS. So I am trying to repeat to myself what you advised. And am trying not to loose myself in the negative fearfull thoughts...
Thank you!

 

[Bex1111]

Yes I read that sudden acute full body neuropathy is in all cases ideopathic. And I feel that anything that is ideopathic is probably TMS. So I am trying to repeat to myself what you advised. And am trying not to loose myself in the negative fearfull thoughts...
Thank you!

Hi Layla
Just wanted to send much love and support to you as I have very similar symptoms as in one area of more pain and then spreading neopathic constant thats is from head to upper legs. It also been year and half now and I can relate alot as life has changed for me. I am so appreciative of all the support and helpful post from everyone and am here to chat if you need. Xx

 

[ARCUser831]

Yes I read that sudden acute full body neuropathy is in all cases ideopathic. And I feel that anything that is ideopathic is probably TMS. So I am trying to repeat to myself what you advised. And am trying not to loose myself in the negative fearfull thoughts...
Thank you!

Glad you came across that! It's a great thing to remind yourself. I am dealing with some stress in my life right now and feel my symptoms flaring, and it is reminding me I need to continue to put in the mental and emotional work to continue the healing process too.

Good luck!!

 

[Layla1926]

Hi Layla
Just wanted to send much love and support to you as I have very similar symptoms as in one area of more pain and then spreading neopathic constant thats is from head to upper legs. It also been year and half now and I can relate alot as life has changed for me. I am so appreciative of all the support and helpful post from everyone and am here to chat if you need. Xx

Thank you for sharing! Have you made progress over the 1,5 years? Did it start during a stressfull period of your life?

 

[Layla1926]

Glad you came across that! It's a great thing to remind yourself. I am dealing with some stress in my life right now and feel my symptoms flaring, and it is reminding me I need to continue to put in the mental and emotional work to continue the healing process too.

Good luck!!

Good luck to you as well! Hope we will speak again, both pain free living life