What to do when in a flare

[Frogfishes]

Hi, I shared my story last week. I am reading success stories of pudendal nerve recovery and hoping to be one.

What do you do when neuropathic pain comes on later, after an activity?

I have been out in a car twice today and the journey and vibrations of the car has lead to intense sensations in pudendal and sacral area.

This keeps happening, I am trying to re-establish sitting but when I sit longer than a meal then pain escalates and i.am. no longer cognitive , my whole body starts to shake.

I am really struggling at the moment. All I can do is lie on my side as any vibration/ movement is too intense.
X

 

[Diana-M]

I am really struggling at the moment.

Hi, @Frogfishes
Sorry to hear you’re having a bad day. I guess those of us with less common symptoms and extreme symptoms really get taken on a ride. We think: HOW could this be happening? Something really BAD must be wrong with me. I’m so screwed. I’ll NEVER get better.

These thoughts just keep coming. The trick is how to not think them? Especially when symptoms are flaring.

Today, I listened to the audio of Claire Weekes, MD’s Hope and Help for Your Nerves. Chapter 1. She reads the book in her own voice. Everyone on this forum keeps saying how great it is to hear her voice. And how amazing this book is. Feeling discouraged myself, I finally listened to her. I have read the book earlier. It seems it always takes more than once for things to soak in. Dr. Weekes did make me feel better. These sensations are part of a very stressed out nervous system. And it’s curable. IF we stop scaring ourselves and making things worse. Take a listen or read the book if you can. I guarantee it will snap you out of freaking out. And it will give you hope.

 

[Frogfishes]

Hi, @Frogfishes
Sorry to hear you’re having a bad day. I guess those of us with less common symptoms and extreme symptoms really get taken on a ride. We think: HOW could this be happening? Something really BAD must be wrong with me. I’m so screwed. I’ll NEVER get better.

These thoughts just keep coming. The trick is how to not think them? Especially when symptoms are flaring.

Today, I listened to the audio of Claire Weekes, MD’s Hope and Help for Your Nerves. Chapter 1. She reads the book in her own voice. Everyone on this forum keeps saying how great it is to hear her voice. And how amazing this book is. Feeling discouraged myself, I finally listened to her. I have read the book earlier. It seems it always takes more than once for things to soak in. Dr. Weekes did make me feel better. These sensations are part of a very stressed out nervous system. And it’s curable. IF we stop scaring ourselves and making things worse. Take a listen or read the book if you can. I guarantee it will snap you out of freaking out. And it will give you hope.

Thank you x

 

[Cactusflower]

It seems like you are at the stage of graded exposure.
It’s ok to deal with confronting your symptoms in increments. There can be a lot of self pressure on top of the fear and catastrophizing. It can take time (years for myself) working towards many physical goals. That’s ok.
I elongated my own ability to sit and eat a few ways. I began to have how fast I was eating and slowed down to keep pace with others. Made sure I swallowed before drinking. When I eat alone I do a crossword puzzle so help me distract my mind at the time and to help me sit a few minutes longer. Then I tried to stay 5 minutes of conversation after the meal. When I could manage an extra 15 minutes I began trying to go a fairly fast service cafe to eat that was a close drive. Then we tried my favorite place which is on a rooftop -3 flights of stairs.
Then I tried some other sitting that was hard for me: putting on shoes, doing seated exercises, sitting doing tasks like preparing meals etc
Each time I used Claire Weekes methods.
Some days now when it is very hard I put on headphones and listen to a favorite mind/body podcast for encouragement (not one that discusses symptoms!), other times I try not to and focus on my thoughts.
Through this you can journal about how this makes you feel, perhaps what it reminds you of in your past.

 

[Frogfishes]

It seems like you are at the stage of graded exposure.
It’s ok to deal with confronting your symptoms in increments. There can be a lot of self pressure on top of the fear and catastrophizing. It can take time (years for myself) working towards many physical goals. That’s ok.
I elongated my own ability to sit and eat a few ways. I began to have how fast I was eating and slowed down to keep pace with others. Made sure I swallowed before drinking. When I eat alone I do a crossword puzzle so help me distract my mind at the time and to help me sit a few minutes longer. Then I tried to stay 5 minutes of conversation after the meal. When I could manage an extra 15 minutes I began trying to go a fairly fast service cafe to eat that was a close drive. Then we tried my favorite place which is on a rooftop -3 flights of stairs.
Then I tried some other sitting that was hard for me: putting on shoes, doing seated exercises, sitting doing tasks like preparing meals etc
Each time I used Claire Weekes methods.
Some days now when it is very hard I put on headphones and listen to a favorite mind/body podcast for encouragement (not one that discusses symptoms!), other times I try not to and focus on my thoughts.
Through this you can journal about how this makes you feel, perhaps what it reminds you of in your past.

Thank you, the challenge I have is that my symptoms are worse after sitting/bending/ driving , I was sitting for few mins at a time , but the bladder pain and hypersensitivity that came on after was very tough. It's hard to rest as I can only lie on one side.
Did you have pn ?

 

[Cactusflower]

I have not been diagnosed with PN, only TMS.
PN is simply another name and symptom set for TMS - a different manifestation, which doesn’t matter because it is all TMS. In my experience it is quite important to begin separating yourself from any kind of “diagnoses” to help your subconcious mind let go of the notion you are “ill” or “sick”.
I can often perform movements just fine, and tighten up later. When we hold our bodies tight in anxiety we get symptoms and sometimes our mind just keeps us stuck there afterwards.. because it thinks we are “ill” or “sick”. You need to remind yourself that your situation is temporary and that you are re-training your mind to begin tolerating some of the sensations.
What do you think about when the sensations arise? Fear? Panic? Failure? Ughhhhhhh!!!!!! Kind of thoughts?
You need to switch up the game! For my own experience it takes truthful affirmations to get me through. Dr. Sarno (read him if you have not) reminds us to think psychological (not to place your mind towards physical symptoms) and that TMS is benign.. meaning it hurts like a b*tch but it can’t harm you. None of your symptoms are killing you. Talk to your brain, you are teaching and retraining it - and you need to do this to lower all the ways it affects your nervous system.
“This hurts, but I am ok, I am safe.” “This is BENIGN”, “Brain, this is painful but you can’t hurt me”… whatever it takes to sit for say.. 30 seconds. Then after that 30 seconds CONGRATULATE yourself! Tell your brain that no matter what it threw at you, you did it.
This is the early work along with journaling or meditation to offload the stress so you can begin to learn to look for triggers, and to see your thought habits, patterns and personality and how they create inner stress in general.
It’s a lot, but you can do this. Slow and steady.

 

[Cactusflower]

Heat or cold packs might help with the pain. Take it slow with sitting and try adjusting your position. Remember to be kind to yourself and don't hesitate to reach out to a doc for guidance. You're not alone!

Hello @william99
I'm not sure you fully understand what this website is about. Although we always recommend seeing a doctor first, the people at this website have not had their chronic pain situation answered through traditional Western, and often even Eastern or alternative medicine. It's an entirely different approach which was discovered by Dr. John Sarno.

This website is inspired by the ideas of Dr. John E Sarno who’s pioneering work in the field of TMS has led to many scientific discoveries about the human chronic pain experience. We suggest you begin to learn more about TMS by reading one of his books. Here is a short biography and bibliography of his life work. https://www.tmswiki.org/ppd/John_E._Sarno,_MD (John E. Sarno, MD)

Feel free to explore more of this website at https://www.tmswiki.org/ (The Tension Myositis Syndrome Wiki)

 

[Diana-M]

None of your symptoms are killing you. Talk to your brain, you are teaching and retraining it - and you need to do this to lower all the ways it affects your nervous system.
“This hurts, but I am ok, I am safe.” “This is BENIGN”, “Brain, this is painful but you can’t hurt me”… whatever it takes to sit for say.. 30 seconds. Then after that 30 seconds CONGRATULATE yourself! Tell your brain that no matter what it threw at you, you did it.
This is the early work along with journaling or meditation to offload the stress so you can begin to learn to look for triggers, and to see your thought habits, patterns and personality and how they create inner stress in general.
It’s a lot, but you can do this. Slow and steady.

I really like this advice! Thank you! And I’m bookmarking it. I Especially like that I should look at my own THOUGHT HABITS, PATTERNS and PERSONALITY and how they CREATE INNER STRESS.

It IS a lot of work! It really is. But it’s amazing all the ways I’m discovering that I put pressure on myself. As I’m becoming aware of some things, and trying to dump them off, life feels so strangely simple and “too easy.” I wonder how I’ve lived such an unhealthy unnatural life all this time! Well, obviously it all caught up with me.

 

[Frogfishes]

I have not been diagnosed with PN, only TMS.
PN is simply another name and symptom set for TMS - a different manifestation, which doesn’t matter because it is all TMS. In my experience it is quite important to begin separating yourself from any kind of “diagnoses” to help your subconcious mind let go of the notion you are “ill” or “sick”.
I can often perform movements just fine, and tighten up later. When we hold our bodies tight in anxiety we get symptoms and sometimes our mind just keeps us stuck there afterwards.. because it thinks we are “ill” or “sick”. You need to remind yourself that your situation is temporary and that you are re-training your mind to begin tolerating some of the sensations.
What do you think about when the sensations arise? Fear? Panic? Failure? Ughhhhhhh!!!!!! Kind of thoughts?
You need to switch up the game! For my own experience it takes truthful affirmations to get me through. Dr. Sarno (read him if you have not) reminds us to think psychological (not to place your mind towards physical symptoms) and that TMS is benign.. meaning it hurts like a b*tch but it can’t harm you. None of your symptoms are killing you. Talk to your brain, you are teaching and retraining it - and you need to do this to lower all the ways it affects your nervous system.
“This hurts, but I am ok, I am safe.” “This is BENIGN”, “Brain, this is painful but you can’t hurt me”… whatever it takes to sit for say.. 30 seconds. Then after that 30 seconds CONGRATULATE yourself! Tell your brain that no matter what it threw at you, you did it.
This is the early work along with journaling or meditation to offload the stress so you can begin to learn to look for triggers, and to see your thought habits, patterns and personality and how they create inner stress in general.
It’s a lot, but you can do this. Slow and steady.[/QUOTE

Thank you, I am grading my sitting, now it hurts to lie down which is a bugger, my challenge is Mental too, I had surgery last time and recovered, partly as a had to in order to recover , you have to sit and slowly increase.

 

[Frogfishes]

I have not been diagnosed with PN, only TMS.
PN is simply another name and symptom set for TMS - a different manifestation, which doesn’t matter because it is all TMS. In my experience it is quite important to begin separating yourself from any kind of “diagnoses” to help your subconcious mind let go of the notion you are “ill” or “sick”.
I can often perform movements just fine, and tighten up later. When we hold our bodies tight in anxiety we get symptoms and sometimes our mind just keeps us stuck there afterwards.. because it thinks we are “ill” or “sick”. You need to remind yourself that your situation is temporary and that you are re-training your mind to begin tolerating some of the sensations.
What do you think about when the sensations arise? Fear? Panic? Failure? Ughhhhhhh!!!!!! Kind of thoughts?
You need to switch up the game! For my own experience it takes truthful affirmations to get me through. Dr. Sarno (read him if you have not) reminds us to think psychological (not to place your mind towards physical symptoms) and that TMS is benign.. meaning it hurts like a b*tch but it can’t harm you. None of your symptoms are killing you. Talk to your brain, you are teaching and retraining it - and you need to do this to lower all the ways it affects your nervous system.
“This hurts, but I am ok, I am safe.” “This is BENIGN”, “Brain, this is painful but you can’t hurt me”… whatever it takes to sit for say.. 30 seconds. Then after that 30 seconds CONGRATULATE yourself! Tell your brain that no matter what it threw at you, you did it.
This is the early work along with journaling or meditation to offload the stress so you can begin to learn to look for triggers, and to see your thought habits, patterns and personality and how they create inner stress in general.
It’s a lot, but you can do this. Slow and steady.

Yes I am finding that some thoughts hurt , I clench my muscles over my hips