New Program Day 4: Breaking the Pain Cycle

[adria]

to the woman who talked about Tinnitus. I had that for two years. First, it drove me mad, because i'm prone to insomnia, and you cant sleep with that ringing in your ears! eventually i got used to it, and with that, i stopped caring. That's when it faded. it comes back sometimes, but i just dont care about it, so it doesnt stick around.

To the last comment about negative feelings, feeling victimized, I too feel that. Usually it's "i was born broken. i'm useless, i shouldnt even be on this earth because i'm a useless broken human. i should just fade out or die in my sleep". It's awful. i have to stop that. I also noticed that living in my moment cuts the pain drastically. When i go for hikes with my dog, i'm nearly pain free. I used to think it was because i was standing, and therefore not hurting the nerve. i'm sure some of it is that, but most of it is because i'm not laying around and stewing about my awful life. Even on the bike, when i had only bladder pain (not pudendal pain YET) i'd be pain free on the bike. I never knew why. i'd have pain before, and after i got off the bike. But while on it, it was like taking a pain pill, yet i didn't take anything. I now believe it was because i was living in the moment. On a mountain bike, you have to concentrate on the trail ahead of you or else you'll crash. You cant really let your mind wander and start worrying about the future. I think that's what took the pain away. I'm all about catastrophizing and when something can distract me from that, my pain lessens. I just havent been able to apply these things to every day life yet. I cant always be hiking or sleeping or crying (another thing that lessens my pain temporarily). i need to apply these techniques 24/7.

Yiur posts are always so great. My biggest problem is that when start to feel better i stop putting in the work and revert back to my old mindsets. Gotta keep working until it becomes second nature. I have a flare uo right now and it is consuming. I am trying to put in the work now.

 

[normanyogi]

Yes there are quite a few people here that went the "repressed emotion route" rather than the fear route to get better. There seems to be a few different schools of thought to TMS. Either way, the fear thing really speaks to me. My whole life revolves around "what if?"
I wake up every morning wondering "will this be one of my better days, or a terrible day?" and your walks are the same as my bike rides (yes i try to ride bikes with pudendal neuragia, a big no-no). i'm so obsessed with good ride/ bad ride and how TMS will affect my future. I also have constant fear like "will anyone ever love somebody with pelvic pain? i'll never have a normal relationship, i'm broken" This is my life.

Hi Nicole, I can totally identify with this! I am also a cyclist who has recently been diagnosed with pudendal neuralgia. I am having such a hard time figuring out if my pain is caused by something structural or if it is simply TMS picking a spot in my body where it would make sense for me to have pain. It's quite tricky, isn't it?!? In any case, I wanted to let you know that you are not alone, and yes, you can still have a relationship with pelvic pain. I also really struggle with the fear of the pain, but I have lately come to the realization that I have to keep living my life and not let the fear paralyze me. I also recently purchased a new saddle that takes all the pain off my perineum. Some TMSers might think it's a crutch, but my Brooks is no longer an option for me. Keep your head up. You will get better!!

 

[NicoleB34]

Hi Nicole, I can totally identify with this! I am also a cyclist who has recently been diagnosed with pudendal neuralgia. I am having such a hard time figuring out if my pain is caused by something structural or if it is simply TMS picking a spot in my body where it would make sense for me to have pain. It's quite tricky, isn't it?!? In any case, I wanted to let you know that you are not alone, and yes, you can still have a relationship with pelvic pain. I also really struggle with the fear of the pain, but I have lately come to the realization that I have to keep living my life and not let the fear paralyze me. I also recently purchased a new saddle that takes all the pain off my perineum. Some TMSers might think it's a crutch, but my Brooks is no longer an option for me. Keep your head up. You will get better!!

I was able to get my mountain bike life back with a Rido saddle. It mimics a noseless saddle, but your sitbones are up on a shelf and the nose is recessed so if you lean forward, there is no soft tissue pressure. however, i'm still only at 10-20% of my original time and miles compared to what i used to. But it's growing by the months. I went from not even being able to sit on a bike, to 2-3 miles, then 5 miles on average (before the burning set in and i had to turn around) and by changing my fear of riding, and not doing all sorts of things before and after each ride because i feared "damage", also, looking at each ride as fun thing with my friends and trying not to think of PN at all, i'm up to 15-20 miles per ride now! (thats a lot for mountain biking). I flare mildly, but nothing like before. I did all this with just my mind. Now i'm working on trying to ride at least twice a week. I used to flare when i did anything more than once a week, but now and then, i can go more than that without much pain.

ps, the saddle made it possible to ride. I did one ride on a "normal" but comfortable saddle, and got shocking PN pains in my crotch all night after. It was weird, because i had no pain during the ride and it was a leisurely 5 mile road ride. I never once had any obvious fear of the saddle, but perhaps some unconscious thing told me that i might get hurt. Those are reasons why it's so hard to ditch the "structural" fear. I look at it this way, the nerve IS sensitive. if you beat on it, it will hurt. However, it's sensitive because our brain jacked up the volume knob. Its up to us to get the brain to turn it back down.

 

[normanyogi]

Thanks for sharing this. The Rido looks interesting, and I think I would be able to generate more power with that saddle than with my current one (a Spiderflex). You definitely lose some power when you're not able to grip the horn with the inside of your legs. I'm more fortunate than some in the sense that my PN is a mild case. My flare ups are getting less frequent, and the overall trajectory of my journey leads towards healing. But man it's slow, and I've had to learn a lot about myself and the process of healing to deal with the mental aspect of it.

 

[Shells]

That may be true for me, too. My initial neck pain that started me off on this 12-year nightmare started at the same time as the strangest emotional experience of my life. In an attempt to cure the neck pain I worked with (among others) a Feldenkrais practitioner who proceeded to "train my brain" to sit, lie down, and move the "right" way to avoid pain. The process involved constant mental monitoring of my position, balance, and which muscles I was using.

Before I started the Feldenkrais program I could plop myself down in a chair or on the bed any old way and be comfortable. A couple weeks into the program my mental monitoring had me constantly wondering if I was sitting, lying, or moving in a "balanced" way. I started to notice subtle "imbalances" I would have overlooked before and that would make me fidget and adjust myself to find the "right" balance. The more I did this the more difficult it became to sit, lie down, or move comfortably. Now I can't get comfortable no matter what I do. I think this process locked in a fear of sitting, lying down, or moving the "wrong" way and trained my brain to avoid pretty much every position because I can't label it as the "right" way.

I feel a little like Anakin Skywalker who turned to the dark side to prevent a certain bad result only to find that by turning to the dark side I brought upon myself the very result I was trying to avoid.

This happened to me with yoga and other forms of exercise. I have no idea how not to monitor my movement patterns when I'm hurting because I've done it for so long! My current trainer said "don't think about what your body is doing" and I honestly have no clue!! I don't remember.

 

[Tala]

Some people would say by doing this then instead of being in denial now we lie to ourselves because obviously we are not yet: strong and powerful and radiating with light.

I find that it will work either way for me and many others that I know of as long as we believe in it or make our mind believe in it.

That is a good observation. I'm thinking for me I need to admit the fear, while showing compassion for myself. Kind of "I'm okay despite having this pain." Telling myself I am strong would seem like a lie because I do not believe it. My husband tells me all the time that I am strong for living so well with pain-- we are probably all stronger than we think, if only we could believe it.

 

[Tala]

a Feldenkrais practitioner who proceeded to "train my brain" to sit, lie down, and move the "right" way to avoid pain. The process involved constant mental monitoring of my position, balance, and which muscles I was using.

Before I started the Feldenkrais program I could plop myself down in a chair or on the bed any old way and be comfortable. A couple weeks into the program my mental monitoring had me constantly wondering if I was sitting, lying, or moving in a "balanced" way. I started to notice subtle "imbalances" I would have overlooked before and that would make me fidget and adjust myself to find the "right" balance. The more I did this the more difficult it became to sit, lie down, or move comfortably. Now I can't get comfortable no matter what I do. I think this process locked in a fear of sitting, lying down, or moving the "wrong" way and trained my brain to avoid pretty much every position because I can't label it as the "right" way..

James59, I can relate to your post. When I had my initial onset of pain and the doctors could not help me, I found some relief with Somatics (I believe Thomas Hanna, the creator was trained by Feldenkrais). To this day, I watch how I move. I can't seem to get over that part. I just really think if I keep good alignment my body won't wear out as quickly. I don't sit haphazardly EVER.

 

[Amatxu]

i am so very grateful to this forum and to Alan. I had (MD diagnosed with cystoscopy) for 30 years. Lately it has been worse than ever and that is with trying new supplements, limiting diet. i have many more symptoms now including fibro, chronic fatigue, TMJ....
I live in eastern nc, and there are no TMS specialists near me. so i am grateful to have found Dr. Sarnos work on utube. i am really grateful to read success and progress stories from pelvic pain sufferers.

 

[Click#7]

I have pain all the time. At times I feel I have no fear...so what's that all about ? If you have no fear shouldn't the pain dissipate ? I think my pain is a gradually decreasing in intensity. So I realize everyone is different. Another question for the group...just because I have pain in one particular spot doesn't mean it's NOT TMS right ? Many complain of low back pain and to me that's one area ........

 

[Sita]

At times I feel I have no fear...so what's that all about ? Another question for the group...just because I have pain in one particular spot doesn't mean it's NOT TMS right ?

It can be anger and it comes from the subconscious mind. Or fear but you don't feel it like real fear. This fear might come also from subconscious mind and could appear in certain life situations.
Right!
...
I started to feel anger some time ago, when all the sex scandals came on the news. I was in pain right away and my sleep was affected. At the time I was not aware of my anger and had no idea about the relationship between repressed emotions (any emotions) ,pain and sleep. Then I felt other emotions, disgust, deep sadness, even fear. Sometimes I recognize the fear, it's palpable and I enter a state where I'm hipper vigilant about my surroundings. Other times, not so much, the fear might be there but I can't feel it. The fact is, sometimes is still difficult to "feel my feelings". This comes from my childhood so it's a learned behavior. A few weeks ago I found the 21 day - Program on this forum and started to work on it and...was able to "see" the connection between all these emotions and my pain. I was pain free for 3 days last weekend and it was great. But then the fear started to come back again, and then to increase. Gradually. And then the pain came back. With a vengeance. I don't care anymore now, plus it moves around, it's not just lower back pain, it's upper or middle or sometimes in the left leg. When I don't pay attention to it and just ignore it...it's much better. I work out, vacuum, basically ...I don't give a crap about the pain.

Don't lose hope!

 

[Click#7]

It can be anger and it comes from the subconscious mind. Or fear but you don't feel it like real fear. This fear might come also from subconscious mind and could appear in certain life situations.
Right!
...
I started to feel anger some time ago, when all the sex scandals came on the news. I was in pain right away and my sleep was affected. At the time I was not aware of my anger and had no idea about the relationship between repressed emotions (any emotions) ,pain and sleep. Then I felt other emotions, disgust, deep sadness, even fear. Sometimes I recognize the fear, it's palpable and I enter a state where I'm hipper vigilant about my surroundings. Other times, not so much, the fear might be there but I can't feel it. The fact is, sometimes is still difficult to "feel my feelings". This comes from my childhood so it's a learned behavior. A few weeks ago I found the 21 day - Program on this forum and started to work on it and...was able to "see" the connection between all these emotions and my pain. I was pain free for 3 days last weekend and it was great. But then the fear started to come back again, and then to increase. Gradually. And then the pain came back. With a vengeance. I don't care anymore now, plus it moves around, it's not just lower back pain, it's upper or middle or sometimes in the left leg. When I don't pay attention to it and just ignore it...it's much better. I work out, vacuum, basically ...I don't give a crap about the pain.

Don't lose hope!

I feel like I am getting better slowly times then I have some symptoms that come and go and some that stick like glue. I wish I could feel more emotionally....might get a therapist to help me.

 

[hopefuldan]

Thanks very much for this thoughtful and insightful program!

I am a bit unclear about the approach in this program, or at least today's lesson. It seems to emphasize overcoming your pain by not being afraid of it. I guess the idea is fear feeds the pain and keeps it alive whereas letting go and realizing there is nothing to fear releases the pain. Where I am confused is how this approach relates with Sarno's views on TMS. As far as I can tell, Sarno thought the solution to pain was to acknowledge the emotions (i.e. rage, sadness, etc...) and to find ways to release these emotions, or at least not let these emotions cause pain. Until we get to the bottom of what's eating us up inside, the pain, anxiety, depression, etc... will persist.

These two approaches to stopping TMS seem quite different or am I missing something?

Thanks so much!

 

[MindBodyPT]

Thanks very much for this thoughtful and insightful program!

I am a bit unclear about the approach in this program, or at least today's lesson. It seems to emphasize overcoming your pain by not being afraid of it. I guess the idea is fear feeds the pain and keeps it alive whereas letting go and realizing there is nothing to fear releases the pain. Where I am confused is how this approach relates with Sarno's views on TMS. As far as I can tell, Sarno thought the solution to pain was to acknowledge the emotions (i.e. rage, sadness, etc...) and to find ways to release these emotions, or at least not let these emotions cause pain. Until we get to the bottom of what's eating us up inside, the pain, anxiety, depression, etc... will persist.

These two approaches to stopping TMS seem quite different or am I missing something?

Thanks so much!

Hi Dan,

Alan Gordon and other more current TMS professionals have taken the TMS concept further and studied it a bit more in recent years. So yes, the emphasis is a bit different than Dr. Sarno's original ideas but still with the same concepts. Sarno believed acknowledging the emotions and learning that there was nothing wrong with your back (or other body part) would cure you. Alan and others do not disagree with this philosophy, in fact, they emphasize the same concepts. They also take it farther by using a more modern, neuroscience based approach of taking down the fear factor around the pain in addition. Many advances have been make in our understanding of the brain since Sarno formulated his theories decades ago. The basic concepts hold but more has been added. Our brains and emotions are complex and we probably won't know the "exact" thing causing the pain because there isn't just one thing! It may be a combination of unacknowledged emotions, as Sarno says, plus the fear/pain cycle going out of control, as Alan teaches. They aren't incompatible, both can fuel the continuation of the TMS. Hope that helps.

 

[LindenSwole]

When I was deep in the abyss of pain about a year ago - during the time of seeing a new doctor every week - I was the opposite of Outcome Independent. I would wake up and feel okay and then I'd get out of bed and all of the muscles along my spine would just lock up. Because of this, I knew it would be a terrible day.

Now, this is a great strategy to not have my entire day dictated by the first few minutes out of bed. The pain is not good nor bad, it just is.

 

[adria]

I have been having stronger back pain for the past month or so. I have psoriasis and i am worried that the new pain in my fingers and hips is Psoriatic Arthritis. I am supposed to get an Mri but i am worried that if they tell me something is wrong with me it will worsen my pain. What do u guys think...should I go.

 

[Bodhigirl]

Oh, gosh! I am going through the program again because I am having my fourth migraine is four weeks! I am so afraid of having a stroke!
My neck is in pain. My muscles are all knotted up in my scapula. I am tense. The news makes me bonkers. I wake up with dread nearly every day that our country has been divided up and thrown under the bus. I don’t feel safe.
I am afraid.
The perfect video for me to see today! I moved my head along with the subject and I cried with her. It was a relief. And for the moment my pain is gone.
What a journey this has been so far! And I have been deliberately feeling feelings for 32 years! Purposefully, deliberately. Mostly with the intention of kindness. Yet my symptoms return.
I need to do this work daily without taking my healthy body for granted.
I am aging. I am afraid. I can feel fear and not generate pain. But yeah, wow, I am really really afraid.

 

[James59]

Bodhigirl, the news is driving me bonkers, too. Every time some new frightening absurdity happens (a daily occurrence now) my body gets a little more tense. One thing that helps me put it in perspective is a middle-of-the-night news program on ABC called World News Now. They summarize the main news stories of the day, but they don't dwell on the bad news. They also spend a good deal of time reporting on the fun, happy, and quirky things happening around the world which I find refreshing. It's too bad it's only on in the wee hours. No problem for me because I'm a night owl, but I think everyone would benefit if prime time news spent some time on the positive stuff, too.

 

[Bodhigirl]

I get the whole TMS thing, I know I have it, but what in the world do you do with the intense pain while it's happening? I'm not having much luck talking myself out of it, even though I go right to the "okay brain, what the hell is bothering you?"

I opened up to your question... and hope it’s gotten better for you. When I am in pain, I ask the pain, “if I weren’t feeling you, what emotions might I be feeling?”
Rewiring the brain, a long journey; it gets better.

 

[Bodhigirl]

Bodhigirl, the news is driving me bonkers, too. Every time some new frightening absurdity happens (a daily occurrence now) my body gets a little more tense. One thing that helps me put it in perspective is a middle-of-the-night news program on ABC called World News Now. They summarize the main news stories of the day, but they don't dwell on the bad news. They also spend a good deal of time reporting on the fun, happy, and quirky things happening around the world which I find refreshing. It's too bad it's only on in the wee hours. No problem for me because I'm a night owl, but I think everyone would benefit if prime time news spent some time on the positive stuff, too.

Thanks! I stream that program in my car, sometimes. I like BBC, I hear about the whole world but still we are scaring the whole world right now.

 

[chemgirl]

As

I have been diagnosed with IC since it was "discovered" or "invented".
I feel tremendous sadness that I still fear tomatoes. I did the IC diet perfectly. Fear of those razor blades in the bladder terrified !

I was also once told I had that. I did the Dr. Fugazzotto augmentin antibiotics program for 5 months and it went away. Came back two more times. Did the same thing. But, during the third round of antibiotics, I read about TMS. I started journaling, brain talk, etc...very slowly weaned completely off the antibiotics (which, in retrospect, may have been a placebo)and was fine.