Discussion in 'Success Stories Subforum' started by ezer, Jun 23, 2015.
As I read posts on NET, can someone please expound on NET?? Useful for TMS? How it works. Etc??
@ezer Do you mean that many of the people with mesh pain might just be suffering from TMS because they’ve heard about the issues with this procedure in others?
I know two cases. Those 2 patients were very vocal about it, thanking profusely a PN doctor for having removed the mesh and healed them. They both relapsed after experiencing stress. They never came back on the forum to tell the truth.
I am in no way saying that all cases are TMS of course. I really don't know.
Thank you so much for your reply. Your story provides hope in what seems a hopeless situation. I hope you continue to do well.
I was reminded that I had not replied to the NET question.
NET initially helped me back in 2012 but I relapsed after a bad and stressful accident a few months later (lost blood, had to drive myself to the ER, couldn't find a surgeon because it was the weekend etc.). Afterward NET was useless.
In retrospect I think NET is based on theories that are fairly close to Sarno. But it is light weight, fluffy, with a lot of mumbo-jumbo added.
I am grateful for having tried it but that was not the solution. It opened my eyes to mind body theories though.
Once again, the lesson for me is that you cannot rely on somebody else to heal you. You have to be fully committed yourself.
I am not discarding the help provided by TMS psychotherapists of course and I think they can steer you in the right direction. But a cure? I am skeptical for something as challenging as pelvic pain (sexuality, guilt, shame, taboo, childhood sexual abuse etc).
Hi Ezer, i go back and read this occasionally and i also steer others to this post of yours. First of all, what is NET? (what's the acronym spell out).
Also, i believe i have TMS, however, when i hear about central sensitization, that almost seems more like what i'm dealing with. Some people say TMS and CS are the same thing. CS seems to deal more with the brain sensitizing a part of the body that has been previous injured thru repetitive trauma (my case) and your sensitivity dial turns up as a result, because the central nervous system considers this pain the "new normal". I know it's more complicated than that, but that's what i get out of it. The last 3 weeks have been the best PN weeks i've had since this hell started. I was getting a lot of hope. Then i got on my bike, which i've been doing lately without too much trouble, but this time i used a different bike and we ended up going to a trail that was super bumpy. I am flaring horribly right now. I know people will say "oh you're just associating bikes with pain. it's a conditioned response" but the weird thing is, i wasnt even thinking about pain during the ride at all. I wasnt thinking about the bike or the trail and whether it would hurt me. Yes in the early days i would freak out every time i rode a bike, then i'd have this guilt that somehow i was damaging my nerves by selfishly pushing my body to do an activity that it shouldnt be doing. I dropped those fears and my pain after biking/exercise has improved. So yeah, i rode without fear, wasnt thinking about pain, etc., and still flared up horribly. I think TMS is more emotion based explanation, and CS is the medical explanation for hypersensitivity. Like i said, there seems to be a correlation and overlap between the two, but i'm still stuck on the CS explanation for what is going on with me because when i read about it, it seems more my case.
Central sensitization as I understand it, is an "evidence based" explanation of chronic pain. There is no proof of its existence as a pathology.
I think all the people that have suffered from chronic pain have been diagnosed or offered an explanation that involved central sensitization. I have been there.
You got 3 good weeks with low PN pain. Why would it be the case if you suffer from so called central sensitization?
You have to be patient and stop torturing yourself with medical explanations. You know that if you had met another physician, you would have been diagnosed with something else than PN/PNE. Fibromyalgia, levitator ani syndrome, CPPS. CS is yet another explanation when they can't seem to explain your pain.
After a few years of Tms pain - every symptom listed- bed ridden on loss of meds- I managed a speedy recovery last year- back running, swimming, at the gym and easy bike riding. Thanks to your post, and montes page. So thank you thank you!!!
I then went back to work bought a second house.... and slowly went a bit backwards. From pain free to a few niggles and Symptom imperative. At work I get tight constricting feeling across chest that sometimes dissipates after tuning in to my emotions.
Anyway.... recently - at the start of this year- sold one house and moved to the county. Realizing the change my make me tense I have pegged back any attempt at exercise- save a few easy swims a week and trying to start running a agin but at the moment I seem to be feeling tones of emotion. I can barely keep a lid on it; sometimes up to 1.5 hours a day across the day I feel my emotions and experience intense physical responses ; shivers, tight chest, heat etc.... in the past this brought relief but it seems like I’m treading water.
So my questions;
Are the recent life changes most likely causing the tension levels to rise ? And if so as I settle hopefully they will dissipate as I continue to feel my emotions?
Also- feeling emotions - in the past I have often tried to focus in tightness in chest or any constructions or knots. Doing this and focusing on any uncomfortableness around these areas usually results in physical responses and then releif- but to be honest is this kind of felt perception forcing it? I offer wouldn’t breathe at the peak of this felt moment- and really focus pressure on these tight bits to force shivers or heat release...
You see I recently tried just observing the awkwardness inside- or the tension- and boy that was intense. So intense I could not see out the wave of emotion for it to dissipate- in some cases I would be craning my kneck, contorting my face, feeling heat and shivers and feel like crying but couldn’t..... very very very uncomfortable.... and no releif from tension.
So... any ideas on what technique is the better one for feeling emotions? Do you breathe through them rather than forcing them? Do u only observe and do no manipulation at all and just ride out the physical responses? When I do that it feels like my body is on the cusp of actually exploding but can’t—— so Really uncomftabke. I guess eventually I may actually cry and get releif - just a bit fearful of the unknown and any symptoms that may come back...
Any thoughts would be fantastic !
i have a doctor that believes in both CS and TMS (to a degree). She explained that CS is just a boost in sensitivity, but that certain activities that freak out the nervous system (or produce more pain) will cause an increase in sensitivity. So in her explanation, CS pain can fluctuate based on how much the painful area is prodded. Of course there is a stress component too, which to me, makes it very similar to TMS. Seems like CS is the more physical explanation for TMS-like phenomenon, but ignores the psychological. Both seem to suggest reducing fear and stress and to bring down the nervous system. I'm sure as time goes on and they learn more, the two conditions will merge.
This part. Whenever i tried to feel emotions, the only thing i can feel is a slight tightness. I assume this is anxiety because that's what i have. however, i was told that anxiety isnt an emotion. it's a result of emotions. My problem is i cant really feel anything beyond that. I only seem to have obvious emotions when something major happens. i dont feel anything (other than pain) when i'm just sitting around doing nothing. I want to be able to do this because i think it's real. For instance, if i break down and cry, sometimes my pain dissipates for a little while. however, i cant just go around yelling and crying all the time either.
NicoleB34, that's exactly the point: instead of feeling - having an emotion, you have physical pain. Pain is the replacement. And CS is just physiological correlate of a more psychological explanation. Soma and psyche are not seperate fields. I don't think it helps a lot to think 'physiological' instead of 'psychological' other than that I better understand why this takes some time and that it is a process. Because the psychology is - so to speak - engraved in the body.
While western medicine is amazing at solving acute issues, chronic pain is another story. CS versus TMS is just her opinion which I think is utter nonsense (believe me, that is not taught in med school). But the sad part is she does not realize the nocebo she is creating for you.
I believe there is no right or wrong. I see that you really get it. The key is to not think or intellectualize but to simply feel the experience. It is like the tide. The emotion floods, slacks, and ebbs and you just observe.
I never watched my breathing but maybe it is helpful. Reichian therapy and closely related bioenergetics are all about breathing to access emotions.
@ezer first of all I want to sincerely THANK YOU for your generosity in sharing your story. I came across your farewell post on Pudendal Hope on my first visit to that site during one of my doomed Dr Google spirals. My brain is VERY GOOD at finding symptoms to convince me to pay attention to them and since all my imaging tests have been negative it went looking for something more terrifying and found PNE plus CRPS which is where I am now, what fun.
Anyway my story is long and ugly but I am 100% convinced my problem is psychologically based, just trying to have hope that I haven’t done too much damage in 3+ years of increasing insanely desperate and aggressive attempts to explain and KILL KILL KILL this mind boggling pain all the while watching it get worse...then getting more aggressive and desperate...getting worse...and so on and so forth. (Please don’t get me started on what I have done to myself with foam rollers, massage balls, and the dreaded Thera-wand, all of which I am currently detoxing from after only 2 weeks of being introduced to the concept of TMS via your post.)
You can probably tell I fit the TMS profile, lol.
Anyway, my question is this: my symptoms are extremely intense and 100% constant (not constantly the same, just constantly there). I get all kinds of bizarre stuff like nerve/muscle tremors, huge spasms, feelings of tearing and crushing, etc. When I try to “just feel” an emotion I find it next to impossible to feel ANYTHING other than the pain. Obviously, this is the pain’s purpose and it is doing a really excellent job. But it’s making it quite hard for me to find a window into this. Any insight or advise?
Also, posted this on another thread but will repost here, curious as to what your approach to literally “sitting through” the pain was during sitting. Any sitting at all gives me level 10 pain plus panic, but I DO do it anyway to the best of my ability—I will for example drive my kids to school, eat dinner with my family, etc. out of pure unwillingness to let this thing take away my whole life but it’s an increasingly miserable situation and I’m not having much luck not being terrified of the pain DESPITE buying the TMS explanation. (It goes something like this: sure it’s TMS but what if it’s so bad and I’ve done so much wrong it’ll never get better? Or what if the physiological changes causing the pain are NOT harmless and reversible even if they ARE being caused by my brain and not by an underlying physical issue? Like if that pudendal nerve is being “attacked” by TMS or squeezed by TMS-tensed muscles aren’t I damaging it by doing things that hurt EVEN if this isn’t a physical injury situation?)
Hoping you can help me get some perspective that will let me get a foothold into a path to healing.
How to deal with sitting guys?
I am trying my best and I follow ezer indications for quite a while.
I am making progress but when I have bad days I am simply traumatised and feel so hopeless .
Now the pain while sleeping subside and when wake up I am mostly pain free. But when I will go to drive my cab I feel a mild discomfort in the first hour then is getting worse after urination. Then I would be in pain for the rest of the day...... and the same story over and over again.
My brain learned this pathway and I am traumatised when I have to go to work.
I have read all TMS books and I am very good at theory .
I had a manageable two months period ( in fact depression was low ) . But now after few bad days I cannot back to the same stage I was before.
I am very glad that In the success stories subforum are many cases of pn/pne/ic/bladder pain than last year.
In my opinion depression plays a huge role in healing TMS pain.
Anybody driving for living while having pelvic pain? Changing my carrier scare me to death .
If anyone has any tips for me with SITTING and DRIVING I will really appreciate .
Goshawk, very late at night or right after waking up I did not experience very much pain. Or when I took a hot bath. The pain was not too much a bother during those periods. But yes, I reckon it is challenging.
This a common theme among people with PN. Your nervous system is in a calm, almost meditative state while sleeping (though, i sometimes have the opposite problem if my sleep is stressed and full of night mares). The good news about this symptom, is that if you had true "nerve damage", it shouldnt be nearly gone in the morning. Not to mention, looking back at our stories, most of us didnt have an injury so traumatic as to permanently damage the nerve. Even if you had a slip, or some sort of other pelvic surgery, nerves do heal!!! Probably only in rare cases is PN true nerve damage, like if it's encapsulated in scar tissue, or an extreme stretch of the nerve. However, injuries and surgeries, etc. can sort of kickstart the process.
As for sitting, i had an interesting history. When my PN first started, i almost never avoided sitting. Yes i noticed that walking was teh most comfortable thing i could do, but i never wanted to inconvenience myself by never sitting. As a result, my brain didnt make the "sitting is bad" association. However, months later, i went to a PN doctor who confirmed what i had, and you know what? The next day i woke up with both rectal and sitting pain, where as i didnt have that before. I think the hopeless doom i felt from the diagnosis now feeling real, is what set this off. So like many pelvic pain patients, i got a special sitting cushion. I was convinced i NEEDED this constantly, or i'd hurt the nerve. I carried it everywhere. Then when i learned of TMS, my first plan was to ween off the cushion. I started going into restaurants and movie theaters without it. i had to break that mental addiction to it. I still use it at work or long drives sometimes because it it feels more ergonomic and lifts me up to see better, but my reliance on it for anything else, and my constant carrying it, is gone. My pain is not any worse since doing this.
Also, i mountain bike!!! i got back into it when i studied mind/body medicine. I'm not as hardcore as before, but i'm building up. You have to build up slow and decrease that feeling of fear.
Same here, hot baths were an addiction of mine. i could never tell if the heat was helping relax the tension, or if making the water as hot as possible, shocked the rest of my body from feeling it. I still bathe every day because it's one of my relaxation rituals. My pain stays low for a while after baths.
Hi everyone, I haven't posted or even read the forum in a long time but I just wanted to say I've been completely cured of Pudendal Neuralgia for almost a year now using the mindbody approach. It took a long time but this stuff really works!
I am so happy you are healed! It is so encouraging and inspiring!Can you tell me some more about what you did to heal? What helped you the most? And How long did it take you to heal? I have pelvic pain myself and I have been trying to apply the tms techniques, but I find myself in constant fear and anger. Really struggeling here. Thank you so much! Sarah
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