New Program Day 11: Pain Reprocessing

[itmsw]

this has been the hardest part, "what to do". So far, the only pain relief i'm noticing is that, for example, i'm a mountain biker who developed pudendal neuralgia (burning stabbing pain in lower pelvis). Biking excessively can cause this, but i got it from something else (a medical procedure). Anyway, PN is generlly a death sentence for bike riding. When my PN doctor told me "no more riding", and then told me to basically rest the nerve, and dont do anything to irritate it, i became very depressed. The next day, while following his plan of basically living in a bubble, my pain got much worse. it was worse for a couple months, until i said SCREW THIS and went out and got a special saddle, and started riding again. Keep in mind, i hadnt heard of TMS yet, so i was still in terrible fear of riding, because usually it would cause a horrible flareup. However, this "living my life" as opposed to sitting on the couch, popping pain pills and being hideously depressed, was starting to lessen my pain. Again, i hadnt heard of TMS yet. Over the course of a year, i would gradually start riding more miles. At first it was about 3, then it got to 5-6 miles. However, it always seemed like at the 5 mile mark, i'd feel burning and i'd turn around and go home. That became a habit in my brain unconciously. My brain was saying "you can only do this for about 5 miles, and then i'm going to send you burning signals to stop". Not to mention, every time i rode, i would have this cycle of fear. I'd have fear before i got on the bike like "how many miles am i gonna last? will this screw up my friend's rides too if i need to turn around and go home?" Then after each ride, i'd be crossing my fingers like "omg i hope i didnt damage the nerve!!!" My riding was surrounded by fear.
When i finally learned about TMS, i started telling myself "ok, try not to be scared, and pretend it's the old days where you had awesome long rides with your friends. you arent damaging the nerve, it's just hypersensitive. and you MIGHT flare up, but you know you'll return to baseline and be fine. it's not dangerous". When i employed these thoughts, suddenly i was doing 9-13 miles. As of hte last few months, i've done 15+ miles, and recently a 27 mile ride! Sometimes i get pain early in the ride again, and i think it's those fear thoughts in the back of my mind. I know i'm going to flare if i push it too hard, but these days when i do, they seem to be weaker flares. So far, practicing TMS for biking has been the only major clue that it's working. I still have substantial pain during the day, like at work or home, etc. This is where i have to keep working at it.
I suggest you keep the exercise going, just try not to think about "will this hurt me later?" Try your hardest to pretend you never had TMS and keep walking like you used to.

Hi NicoleB34, I just wanted to say that I have had PN and IC along with low back and neck pain, migraines, and larbral hip tear pain along with IBS, coccyx and sciatica. When my worst PN and IC pain came about 9 years ago, it was hell finding a doctor who knew anything about it. But I finally found someone and she referred me to a physical therapist that did internal work- you probably already know all this, but I would feel terrible if you didnt and I didnt share- The best part was she had a biofeedback machine to use internally and I could actually watch on this monitor when my muscles were relaxing. Initially, I had no clue that all my internal muscles were clenched, just like I bascially never felt my leg or back or neck or butt muscles tighten- but I found out thats because I have them tightened all the time and it was really hard to tune in to try to feel muscles inside your pelvis, but it got a little easier as time went on and I was able to do it a little bit and I really feel that the internal PT and biofeedback machine was very helpful although I hated all of it and was happy when it ended lol- but I believe that was my first experience trying to feel into my body.-

 

[nicole3]

Hi,

Hope someone can clarify-
In terms of somatic tracking of anxiety and/or pain VS systematic desentisization- which should be used when?

From what I understand they are similar in terms of 'watching the sensation' but different in that with somatic tracking we are 'continually checking in and watching' as opposed to systematic desentization were having a 'little look in' but returning to the breath.

Just wondering- do we move forward using both techniques? Or used one or the other for certain situations etc?

Thanks!

 

[Alan Gordon LCSW]

Hi Nicole,
What a great question.

With somatic tracking, you're not doing anything other than following along wherever and whatever you happen to feel in your body. One of the most important parts of somatic tracking is that you're simply attending free of fear.

But what if you're tracking your body, and your attention happens to go to your pain? It can be hard to attend to that free of fear.

Systematic desensitization is simply an exercise that can help you learn to attend to your pain with less fear, so that if your attention happens to take you there organically, you're able to attend to it more objectively.

 

[Bodhigirl]

This was new for me, pendulating between pain or tension and breath. Brilliant. Swing a pendulum, work the frontal lobe and use a hypnotic style at the same time. The back and forth of it... a dance for the sake of healing.
For years, I have asked myself and others where they have no pain and some folks simply hurt everywhere. But breath? Everyone breathes.
Even me.
I laughed aloud at the simplicity of it. This is why we collaborate. We each see things through slightly different lenses and begin the dialectical approach that includes the best of so many interventions.
Used it today a few times, easy and effective.
Thank you, Alan. Nice work!

 

[Click#7]

I think that one of the most frustrating things about TMS is inconsistency. Yesterday was a really good day for me - had lunch with my sons and went for a 6 mile bike ride. Most of my symptoms were fine and my biggest problem, neuropathy was manageable. I have been taking Ambien at night for three weeks because I usually have pain in my feet most of the night. I woke this morning with symptoms (little anxiety, some tingling in hands, and feet hurting). Things really went downhill this afternoon when I got stressed out over having to babysit my granddaughter for a week because my wife wants to do it. I am concerned that the pain will limit my ability to help out, yet I feel guilty for not wanting to do it. I am angry because the decision is not really mine to make. Tried meditation and ended up taking a gabapentin. I did Alan's "safe meditation" and read the section plus the comments. My feet feel better! To answer an earlier comment - although stresses can trigger symptoms, its probably tied to some repressed emotion. Patience is hard when you've had symptoms for months or years, yet I know that after 66 years I need to give it time to change my pathways.

I believe Steve Ozanich in the Great Pain Deception talks about how inconsistent symptoms get big time. I feel the same way this week. Did great for 2 days and then I cried yesterday. Funny how we have to take day by day and not commit to anything. I have lower back, hips and feet pain that can severely limit my mobility. But the one thing I am learning to do is spit in the face of fear and move on. Yes I hurt and when it becomes severe enough I will take a pain med, but I will continue to stay active. I am 63 and never knew until this year that I had TMS. I suffered severely from it at age 32 and then again at 42. I struggled and ignored the pain after finding out all tests were normal. The symptoms eventually melted away until 3 years ago when it started again. Working thru this now and understanding what is happening actually gave me psychological relief. Hang in there because it can and will go away....I am living proof.

 

[allinthemind]

Thanks. A lot of this stuff is kind of confusing to me and abstract. I need to come up with some simple "to do" things to counter the TMS. Like when I feel pain, do such and such. Do I push through the pain, ignore it, do the activity anyway even though it usually makes the pain worse? While telling myself it is safe, it is safe. I kind of need simple bullet points on simply what to do when in pain. I guess I'll go over all the days so far and try to come up with such a list.
Sorry for your pain also

Hi munkin,

What I do when pain comes on, (as hard as it sounds) say to yourself 'thanks brain for shining some light on a potential problem in my body (pain signal) but this sensation is not dangerous and I am totally safe right now'. Hard when your in a shot load of pain but keep at it.

 

[Emre]

My hypothesis is that, i, a tms'er, feel like i am a cat without nails to protect itself, like a dog without teeth, like a snake without tongue...
Somehow i have been "domesticated" too much by my parents...
This i believe is the definition of a tms...afraid and scared most of the time, without any "protection competency" to protect itself...

 

[joe12stories]

My hypothesis is that, i, a tms'er, feel like i am a cat without nails to protect itself, like a dog without teeth, like a snake without tongue...
Somehow i have been "domesticated" too much by my parents...
This i believe is the definition of a tms...afraid and scared most of the time, without any "protection competency" to protect itself...

And knowledge grows those nails back, those teeth back, that tongue back. I am now 9 days out from reading "Healing Back Pain" and I will proudly announce two things: (1) I am doing more than I have since "the great back spasm" of 19 months ago that landed me in the hospital; (2) I'm still in agonizing pain throughout the day but it is undeniably diminishing, and it's actually freaking me out (in a good way).

I read someone else in the forum questioning whether they had TMS because the doctor's reports showed a problem and they couldn't get past the fear of "what if I don't have TMS? What if the reports show the real cause of the pain?" I don't belittle their fear when I say: re-read the book, and ask yourself: if that herniation/bulge/tear/degeneration etc. is causing your pain, how is it that someone else shows a WORSE herniation or tear or bulge or has MORE of them than you do and yet experiences NO pain? Please, I say this as a living witness: the records (MRIs, X-rays, SPECT scans, etc) mean NOTHING if they don't detect cancer, a tumor, or some other serious and obviously non-TMS condition. The report is not SHOWING your pain, it's CAUSING your pain!!! Read that again. Then mentally (or even physically if you have them), throw those damn reports away.

As I sat up for the first time to do my work this week (I work from home) for the first time in 19 months, my back pain almost brought me to tears, it was so bad. But I was NOT afraid. I knew if it got to the point where it could spasm, I would grab the ice or heat pad, take a valium, and wait for the throbbing to subside to breathable levels again. But I only had to do this once on Monday night after sitting on a hard chair for more than half an hour, but the very next night just to spite the pain (KNOWING IT WAS NOT DANGEROUS), I sat on the SAME chair and for a LONGER period to force my brain into learning that it was NOT a dangerous activity. Did it hurt? Sure! It hurt like hell. But A LITTLE LESS! And I have been hurting a little less each day this week (FOR THE FIRST TIME IN 19 MONTHS). Coincidence? Hell no. FEAR is the fuel.

What was missing for me was knowing that it's OKAY to reach for the meds or the pads in times of crisis, but try with all of your might NOT to with the conviction that YOU ARE NOT DOING ANY DAMAGE TO YOUR TISSUES by pushing your body. This is the key. The WORST thing that can happen is you have a temporary crisis (i.e., you have no choice but to lie down or take your meds or whatever alleviates your pain). I feel so connected to this group. Our pain unites us, but unites us in the common mission to BEAT the pain, not simply SHARE the pain. Misery loves company, so be careful not to settle for the pain! Know that the FULL acceptance of TMS (and only the full acceptance) is the key to getting the conscious decision to sink into the unconscious, which is annoyingly slow, but it gets there.

Again, I say this 9 days after reading the book. I don't expect 90% recovery. I expect 101% recovery! And I don't CHOOSE to believe it, I simply BELIEVE IT. That one's worth reading again too.

If you're a God believer, may God bless you. If you're not, may the stars shine upon you. But either way, when it comes to TMS.... BELIEVE!!!!!

 

[nicole3]

Hi Nicole,
What a great question.

With somatic tracking, you're not doing anything other than following along wherever and whatever you happen to feel in your body. One of the most important parts of somatic tracking is that you're simply attending free of fear.

But what if you're tracking your body, and your attention happens to go to your pain? It can be hard to attend to that free of fear.

Systematic desensitization is simply an exercise that can help you learn to attend to your pain with less fear, so that if your attention happens to take you there organically, you're able to attend to it more objectively.

Thanks so much Alan for your clarification.

If I can pick your brain once more, I'd like to ask about fear. I have chronic wodespread pain (I'm sure diagnosable as fibromyalgia by the medical model) and I truely do believe it's TMS.

But most of the time I would say I don't feel fear of my pain. There are defiantly times I do (certain events etc) but most of the time my emotional reaction to my pain is more of an irritable (can I swear?!) "for F's sakes, pain there again", OR if I feel worn down I'll just feel flat: "I'm sick of this". But I don't really identify with feeling fear most of the time.

Even though I don't identify in a major way with fear, is it my irritable or despairing reaction that keeps it going anyway? Is the answer still I must react in a neutral and empowering way to re-wire my brain?

I hope my question provides some clarification for others also.

 

[joe12stories]

Thanks so much Alan for your clarification.

If I can pick your brain once more, I'd like to ask about fear. I have chronic wodespread pain (I'm sure diagnosable as fibromyalgia by the medical model) and I truely do believe it's TMS.

But most of the time I would say I don't feel fear of my pain. There are defiantly times I do (certain events etc) but most of the time my emotional reaction to my pain is more of an irritable (can I swear?!) "for F's sakes, pain there again", OR if I feel worn down I'll just feel flat: "I'm sick of this". But I don't really identify with feeling fear most of the time.

Even though I don't identify in a major way with fear, is it my irritable or despairing reaction that keeps it going anyway? Is the answer still I must react in a neutral and empowering way to re-wire my brain?

I hope my question provides some clarification for others also.

I'm not Alan, not a TMS expert, but a "just read the book" guy and would like to take a stab at this question: I think you answered your own question. Your "irritable or despairing reaction" is the same thing as fear because of the word "despair". If you would have said "irritable reaction" I would say, good! Be irritated by it! Scream at it! Be mad at it! But don't despair! Yes, we need neutral and empowering rewiring of the brain, and that begins with believing with no room for doubt that this is TMS and that fibromyalgia is its manifestation, not its cause. (i.e., the TMS led to the fibromyalgia, NOT the other way around). Knowing this and believing it down to your aching bones is what makes the difference.

So, hell yes, be mad at your pain. Talk to it. But don't despair of it. Easier said than done? Tell me about it! I've been in AGONY all week, but a little less each day, and no one on the planet is going to convince me that it's a coincidence.

I sure hope that wasn't a completely useless answer! I just felt compelled to give my 2 cents with this new found energy I have for the first time in 19 months! Apologies if I'm off base and know that at the very least, I'm suffering with you!

 

[Lunarlass66]

I feel the same way you do. I tell myself I am safe and nothing is physically, wrong, yet the pain is constant and relentless and consumes all of my attention.

Hello Kerrj74... I was reading your profile and noticed your medical history looks very similar to mine. I had lumbar surgery 22 yrs ago and did well up until a yr ago (though I had several major personal losses and enormous stress running parallel with my onset of pain...)
I also had a physical injury that seemed to trigger the chronic pain I currently have. (hamstring strain.)
It amazes me how many people have been going down the same road as I am. This TMS has such far-reaching consequences... It isolates you unless you are fortunate enough to know someone who's been there themselves. I find this is the only place. My friends (I don't have relatives) don't get it. They just think it's hypochondria or I'm exaggerating what I feel... Then, of course I feel alone and afraid.
I wonder if others feel that way too?I used to be VERY active, worked with kids at the Y, played basketball with them in the gym, ran around on the playground with them, walked endlessly.. My friends nicknamed me "rocket butt" because I never slowed down. That was not quite 3 years ago. What happened?? I didn't think a person could age 10-15 years in less than 3 year's time.

 

[MicheleRenee]

my biggest issue is still being preoccupoed w the pain. ie when is it going to come back. any tips on this? jist reaffirm the safe messages? i took a tms program that wasnt a great fit for me and basically made me hypercritical of all my actions... which im trying to now turn around.

 

[joe12stories]

Hello Kerrj74... I was reading your profile and noticed your medical history looks very similar to mine. I had lumbar surgery 22 yrs ago and did well up until a yr ago (though I had several major personal losses and enormous stress running parallel with my onset of pain...)
I also had a physical injury that seemed to trigger the chronic pain I currently have. (hamstring strain.)
It amazes me how many people have been going down the same road as I am. This TMS has such far-reaching consequences... It isolates you unless you are fortunate enough to know someone who's been there themselves. I find this is the only place. My friends (I don't have relatives) don't get it. They just think it's hypochondria or I'm exaggerating what I feel... Then, of course I feel alone and afraid.
I wonder if others feel that way too?I used to be VERY active, worked with kids at the Y, played basketball with them in the gym, ran around on the playground with them, walked endlessly.. My friends nicknamed me "rocket butt" because I never slowed down. That was not quite 3 years ago. What happened?? I didn't think a person could age 10-15 years in less than 3 year's time.

It is incredible how similar our experiences are. Lumbar discectomy for me (about 20 years ago) on a herniated L3/L4 with sciatica that made me fall down (not from pain but because I lost all feeling in my right leg.) The surgery fixed that, but my lumbar back pain got worse and I lived with it, "pulling" my back every couple of months, incapacitated for about 2 or 3 days at a time, but I got accustomed to it. Then, 19 months ago, I "pulled" my back again (sneezing), got a pain I could not believe up my whole back gradually over the next 2 weeks, until finally my back for the first (and hopefully last) time spasm'd and paralyzed me, sending me to the hospital. For the the next 19 months I became an invalid compared to my former self, as you worded, I "aged 10-15 years" in no time, and I would say more. I see people in their 70s and 80s more active than me...

...until I read "Healing Back Pain". See my previous posts. It's only been 9 days, but I "get it" now. I understand TMS, and this group is a wonderful place to find others who understand (while family and friends simply don't understand how real the pain is, even though they love you).

Long answer to your question if others feel the way you do: YES. But aging so quickly is the beginning, not the end, of the TMS diagnosis. I believe our previous active lives are there, waiting for us to come back. Let's do this.

 

[joe12stories]

my biggest issue is still being preoccupoed w the pain. ie when is it going to come back. any tips on this? jist reaffirm the safe messages? i took a tms program that wasnt a great fit for me and basically made me hypercritical of all my actions... which im trying to now turn around.

If a TMS program made you hypercritical of all your actions, it almost sounds like the opposite of what the "Healing Back Pain" by Dr. Sarno who coined "TMS" (I believe). Have you read his book? If not, stop what you're doing and read it! If you did, don't forget that reminder in the list of 12 daily reminders: do not be intimidated by the pain! And yes, reaffirm the safe messages (assuming, of course, you've been to the doctor and know you don't have cancer or a tumor or anything serious; i.e., herniations, bulges, cracks, tears, slips are NOT serious. Cancer and tumors are, or herniations that are pinching a nerve seriously enough for you to not even feel your feel when the doctor runs that prickly wheel on it, or if you don't feel it when they give you the electric nerve test - OUCH!, etc etc).

When I was then told I now had a new herniation in L4/L5, I slammed on the breaks and realized I will not go under the knife again if at all possible. I tried everything - physical therapy, extended rest, massage, traction, acupuncture, steroid injections in the spine, TENS units, change in diet, prayer, meditation, (God, am I missing anything?!)... and nothing worked, or I should say, some of it worked but only temporarily. Then at my mother's insistence, I read Dr. Sarno's book. And 9 days ago was the first day of the rest of my life.

 

[MicheleRenee]

oh yes ive read it and took a course for my specific pain but it made u stop yourself and feel.ypur emotions every time you did something that was a habit... so eventually i became hypercritical of my habits which of course made me worse lol. right now im just following alans program. im pretty good w feeling sensations but my biggest issue is the anxiety of it flaring up still.

 

[MicheleRenee]

also im very happy for u! good luck.w your journey

 

[joe12stories]

Thank you, Michele! I know my journey has only just begun, so I don't mean to presume anything, but I'm no stranger to anxiety, having suffered that as well all my life. I reached my bottom point with anxiety when I got full blown panic attacks (about 20 years ago) that wouldn't stop for months, and just like TMS (and I believe they are 100% related now), I tried every medication and different therapists and psychiatrists (about 7 of each in total) over a span of about a year before finding "Hope and Help with your Nerves" by Dr. Claire Weekes, the first book that changed my life (I haven't had a panic attack since!)

What's funny (not "haha" funny, but curious funny) is how my old anxiety is kicking in as my back starts to feel better. How do you like them apples? But knowing that it's TMS, it does not catch me by surprise. I know now that it's just my brain looking for an alternate route (a lifelong older one in my case - good old anxiety) to distract me from my underlying anger.

Anyway, thanks again and good luck to you on your journey!

 

[Kat]

Hello Kerrj74... I was reading your profile and noticed your medical history looks very similar to mine. I had lumbar surgery 22 yrs ago and did well up until a yr ago (though I had several major personal losses and enormous stress running parallel with my onset of pain...)
I also had a physical injury that seemed to trigger the chronic pain I currently have. (hamstring strain.)
It amazes me how many people have been going down the same road as I am. This TMS has such far-reaching consequences... It isolates you unless you are fortunate enough to know someone who's been there themselves. I find this is the only place. My friends (I don't have relatives) don't get it. They just think it's hypochondria or I'm exaggerating what I feel... Then, of course I feel alone and afraid.
I wonder if others feel that way too?I used to be VERY active, worked with kids at the Y, played basketball with them in the gym, ran around on the playground with them, walked endlessly.. My friends nicknamed me "rocket butt" because I never slowed down. That was not quite 3 years ago. What happened?? I didn't think a person could age 10-15 years in less than 3 year's time.

Yes you're right. Only someone who has experienced something like this can really understand. It's so difficult having an invisible pain, as others can't see it, and many less sensitive types don't believe it's that bad if you look ok. I keep getting people saying to me, 'but you look so well!' Very annoying. And incredibly isolating when you're not able to get out and socialise or work - we are group animals, after all. Sometimes I think I wouldn't mind the isolation so much (kind of like being on house arrest) if there wasn't also pain. It's having both that can be so overwhelming. And for me it's really hard not to be jealous of others who can live a normal life and do things like go on holiday or go to the movies. It's hard not to think 'why me?' and get angry. But maybe that's part of the negative thinking that got me here in the first place. I think there is wisdom to be gleaned from all of this. Maybe we can derive some meaning from the pain - at the very least it gives us more compassion for others.

 

[Lunarlass66]

Yes you're right. Only someone who has experienced something like this can really understand. It's so difficult having an invisible pain, as others can't see it, and many less sensitive types don't believe it's that bad if you look ok. I keep getting people saying to me, 'but you look so well!' Very annoying. And incredibly isolating when you're not able to get out and socialise or work - we are group animals, after all. Sometimes I think I wouldn't mind the isolation so much (kind of like being on house arrest) if there wasn't also pain. It's having both that can be so overwhelming. And for me it's really hard not to be jealous of others who can live a normal life and do things like go on holiday or go to the movies. It's hard not to think 'why me?' and get angry. But maybe that's part of the negative thinking that got me here in the first place. I think there is wisdom to be gleaned from all of this. Maybe we can derive some meaning from the pain - at the very least it gives us more compassion for others.

It's so courageous of you to find a positive in your pain situation... The thing with me is that I have always been particularly sensitive to others feelings, needs and pain (if they have any..) people ALWAYS tell me I'm "too sensitive" like it's some kind of character flaw. It's rough in the real world to be a sensitive person, but to me, trying to de-sensitize at this late stage of life would be nearly impossible... It's so deeply inherent in WHO I am.. It would be like trying to change your hair or eye color...
and OMG, the jealousy thing is a huge factor for me also. Jealous that it's mid-summer here and my boyfriend goes out, can ride in the car with no discomfort, can bend, squat and twist however he wants, even people on TV make me jealous when they dance, run and play. I could do all that just under three years ago, even simple things like showering, washing dishes, sweeping, doing laundry are now challenging tasks .
It started with a real injury (hamstring) followed by a "ride through hell) with mainstream medicine, misdiagnosis... And the loss of my job, home, roommate of 20 yrs and my mobility...
The thing about APPEARING ok too.... SO upsetting, if you look ok, everyone, even drs assume you are, pain is subjective and impossible to make tangible. Like The Boy Who Cried Wolf.. I always say, "WHY would ANYONE deliberately put themselves in this place of misery, isolation and constant physical pain?? My problem is that I've always been fear a health issues, and people who know me know it.. So they brush off my pain as minor. Minor wouldn't keep me mostly home bound for almost 3 years. I MISS LIFE! I'm not even sure if the pain itself keeps me down and not moving or the fear of further damage and injury to my leg, hip/spine that is the real reason... Probably a combination of both.
I wonder if I'll ever make it out...

 

[Fabi]

This is an excellent reply and very well thought out... My only issue is this "repressed" rage. I had all the dysfunctional family history and also possess rhe typical personality type of a TMSer... But have ALWAYS been very aware and tuned in to my emotions, especially the negative ones, which now dominate my life.. But due to CURRENT stressors and pain. I'm ANGRY and frustrated ABOUT my pain ruining my life... Nothing repressed. It's current rage.. Which causes my "old injuries" to reproduce symptoms... If that's even possible.
It just seems the more I work at this, the more pain and fear (and depression) I feel. Ready to give up!

Sometimes l feel exactly ad you say
Angry at this ruining my life. A part of me wants to give up finish it. Amother part will not.
Then when anger diminishes l realize l don't know how or what my life would be like without these symptoms