New guy with lots of questions

Thanks, North Star.

My son actually had twinges of penis pain going back to when he was 8 but we always thought it was dehydration. It was mild and only lasted a few minutes.

But to start at age 4! Man, that's young to be dealing with this!

 

So I'm not having the success that your son has had steph. Probably because I havent stopped all medical interventions. I keep telling myself if I could just get rid of these trigger points then I'll switch to tms only. The other issue is I have visited a tms doc who says it's fine to work on trigger points while pursuing tms. He is not a "purist" in his own words. Last night I had my wife stick a needle in a trigger point in my right glute. Right when she was done I had excrutiating nerve pain even though she was nowhere near the nerve. This leads me to believe that either the trigger point is producing a lot of my symptoms or tms is tricking me that every time I do a physical intervention it's going to make me worse. Perhaps I have a conditioned response to needles because I had terrible pain after the last set of injections I got. Steve I am in the process of reading your book and I understand this can be a long road to recovery. It is difficult not to rush when I haven't been able to work and am a couple months away from losing my income and my job which I love. I guess my question is with tms do physical interventions actually make you worse? Does tms cause trigger points? Steve if you read this and could give some advice I would really appreciate it. Also steph did your son continue to get worse with physical intervention? I hope he is still doing well.

 

I had to cancel all treatments altogether for my son, otherwise he would continue to focus on the physical side of this. He really liked his physiotherapist and doing the biofeedback, but I cancelled it - I had rented a biofeedback unit and returned it - I didn't want him focused on anything other than dealing with his emotions, triggers, and conditioned responses. So, he has only been to his family doctor since I discovered Dr. Sarno, and that was to renew his Clonazepam.

He started having a bit more pain last week, and I think it was because I reduced his Clonazepam too rapidly - it can cause muscle tightness and spasms upon withdrawal - so I increased his dose slightly again and he's been fine since then (Friday or Saturday). He even managed to get through a very stressful day on Sunday without pain (a big family event), which was a huge breakthrough for him.

I took him to his regular psychologist last week, and he was in quite a bit of pain that night (Thursday) - and when I tried to coach him through it and remind him it was muscle tension, try to think about what's bothering him, etc. - he told me that his psychologist said I was wrong and that he couldn't control the pain, etc. So, I told him to ignore her and she was wrong and I was right, etc. I won't bring him back to her again even though I did like her and thought she was good. I can't have her questioning Sarno, though, and putting doubt in my son's mind!

Since then his pain has been better - a lot better. As I said, I've also brought his Clonazepam back up a bit, too.

I'm reading to him from The MindBody Prescription and he does pay attention, which is good.

So, to answer your question - we have 100% stopped all treatments. I even cancelled his pediatric urology appointment and ultrasound - with my son's blessing (it's actually rescheduled for January just in case but he doesn't know that - that was more of a safety net between me and the doctor). I cancelled his chiropractor. I told my son that while I want him to start to become more active (he still lies around a lot), he doesn't have to do the specific physio exercises anymore - no more foam roller or myofascial cupping massages. We have 100% taken the focus off of his body. I was a huge believer in trigger points and thought that was a big part of my son's problem, but now I've totally given up on them. I no longer even think they're an issue.

I'm sorry you haven't improved much, but I do wonder if the continued treatments are actually hindering your progress. It sounds like you're putting all of your belief into trigger points instead of TMS. Do you still believe dealing with your trigger points will cure you? If so, then you're not fully invested in TMS yet. Have you tried a few weeks without physical therapy?

 

I am stopping physical therapy. Last time I went I came back in excrutiating pain. My pain doc wants more imaging done but I know there's nothing there. The reason I am so hung up on the trigger points is because I can reproduce my pain with them. It's hard for me to let that go. You're right I am not yet 100% on board with tms. I am practicing all the principles but can't get over the trigger points. I have seen some improvement when I decide I just don't care about the pain anymore. I am also weaning off the clonazepam. I read that when you develop tolerance you can have withdrawal symptoms and I think that is happening with me. Thanks for responding. It feels good to have a reminder this can be beaten.

 

That's so interesting that you're weaning off the Clonazepam at the same time my son is. We had tried once before, in September, before discovering TMS, and he had really bad pain that week as well.

This time, I tried slower but not slow enough -he was so eager to be done with it that he stopped taking his afternoon dose without my knowledge. He takes .25mg in the am, .25mg in the afternoon, and .125 in the late evening, although he weaned off of that final dose and I'm hoping he won't need it again. When he stopped his afternoon dose, one day when he was in pain he showed me how tense he was - his butt was clenched so tight, as were his thighs, it was unbelievable.

I told him that while I don't think he needs the Clonazepam, it is the actual withdrawal of it that causes his symptoms to increase (not the Clonazepam that cures him, if that makes sense), so we'll try an incredibly slow tapering off in January after the holidays are over. I worry about him building a tolerance, as well.

Regarding trigger points - my son responded to them as well. I found one on his lower back that when I pushed on it, it caused his penis to hurt - a direct effect. This was in the spring, probably. He also has a huge knot in his upper left back that we were working on with cupping therapy. When I tried the cupping on his upper thigh on the outside, it was so painful he screamed. I could barely touch him. The chiropractor found the same thing.

The other interesting thing is that he would get yeast infections really frequently. I was convinced he had candida (systemic) and put him on all sorts of supplements for it and a yeast killing diet. Also, he couldn't even wear normal pants (he had to wear baggy track pants if he left the house) because he was so sensitive, and any friction at all hurt - even taking the stairs was too much friction. So, obviously I'd think - this is definitely physical! How could it not be! But since I've started teaching him about TMS - he can wear pants again. I am shocked. He hasn't used yeast cream in 2 months, which was unheard of before. I am gobsmacked that even his infections and sensitivity seems to be gone.

So, yeah, TMS = powerful stuff.

 

Oh, and just in case you're thinking exactly what I did - when I learned about TMS and decided to try it on my son, my thinking was "I know he'll be the one person this doesn't work on", and "he's always the one that beats the odds - in all the bad ways". I still have doubts whenever he gets a hint of pain. I'm lucky because I can hide my doubts from my son - you can't hide your doubts from yourself.

My son named his "disorder" after himself because he said he was the only one in the world with it. No one I spoke to had ever heard of the pain he had. The doctors are all stumped to this day. So we were convinced he had some rare new disorder that he was the only one with in the world, or at least the youngest. And of course, I also thought Prostatitis, Pelvic Floor Disorder, Pudendal Neuralgia, etc.

I just knew that his pain would never go away and that he would not respond to TMS thinking. At all. But I tried it anyway.

So, if you're thinking that way, you're not alone. Can you get your wife to read the books and talk to you the way I talk to my son? She can apply the principles and coach you through it (things like - you're fine, it's just muscle tension, it will go away in a few minutes, what are you angry about, visualize blood flow to the area, what happened last year on this day/this weather/this event that triggered the pain today, get out of bed because if you act like a sick person you become a sick person, I know it hurts, but do it (shop, walk, clean) anyway and the pain will go away, etc.)? Maybe having a partner who can hide her doubts coach you will help? Fake it till you make it?

 

Thanks that is a good suggestion. Unfortunately we both have about the same amount of confidence in tms. We tend to look at it as a last resort which I know isn't good for my recovery. Some days I just feel defeated. I can't believe such excruciating pain isn't physical. I know you can't go half way with this. If I saw improvement like your son did it would be much easier to accept. But unfortunately I'm not improving. I also haven't bought into it all the way either. It's hard. I think a lot of my issue is pressure. I don't know how to take the pressure off of myself to get better. Thanks for continuing to monitor this thread it is very helpful.

 

Your wife doesn't have to have 100% confidence in TMS, she just has to pretend she does, if you know what I mean. She has to be confident to help you be confident. It won't work if it's half-assed.

Somewhere along the line I stopped looking at it as a last resort and started looking at it as a first resort. Considering that all of your tests have been normal and the doctors can't find anything - its most likely TMS. I think its actually MUCH more likely to be TMS than anything like Pudendal Neuralgia, which is really rare, so rare that really only a few doctors in France even study it and perform surgery for it. TMS is not rare, it is everywhere.

You said yourself that you are a catastrophic thinker. So is my son, and so am I, I am realizing through this - worst case scenario, every time. Like I said, I had huge doubts and still have doubts. But my son 100% believes what I am telling him, and he is the one getting better. Literally within hours of changing my attitude from one of treating him like an invalid, like he was terminally ill, and incredibly fragile - he improved. As in, zero pain for two entire weeks. After a year of this incredible pain! Especially in the past six months before I discovered Dr. Sarno, I had moments where I honestly didn't see the point in living for either of us. I thought a carbon monoxide leak would be a nice way for my family to pass away and end this torture. It was so horrible. I didn't think he'd ever get better, and he didn't either. His pain was so bad I would hold him as he cried out, screamed at times, as he spasmed, at times I'd cry with him. No one I know can even begin to understand what it was like. I still can't believe he doesn't have spasms anymore. He had them every evening. Now, none.

The emotional toll it took on him was almost worse than the pain. To see my child wish for death, to question why God hates him, to realize he's spent a year of his life in bed, to call himself useless and worthless and a complete waste - and he's only 14! No one could understand except someone whose lived with it - someone with pelvic pain or their loved one (and I could only witness it, not feel it).

It was that horrible - and now it's so much better! He's sitting beside me (laughing his head off at a podcast he's listening to) and I just asked him how much better he is now, physically, than he was at the beginning of October, and he said 70%. It's not 100%, but I'll take it. Life is worth living again. I am terrified at times that he'll backslide and be in so much pain again, and I have to remind myself that he (we) have the tools now to fight this. If he did it once, he can do it again. We just know that we need to deal with his brain and not his body.

Okay, I went on and on, but I just want you to know that I understand how dark that place is. No one knows just how terrible chronic pain is, and pelvic pain - I really don't think there's anything worse. I really encourage your wife to be the strength and the confidence that you need while you can't be it yet. It doesn't matter if she isn't totally there yet - she has to act like she is, for you. She has to tell you that she completely believes in TMS and knows that you will be fine and that there isn't anything seriously wrong with you. She has to ask you what you're angry about and encourage you to express yourself. She has to help you explore your triggers, your conditioned responses, etc. If you can't 100% be on board yet you need someone who is, to build your confidence and coach you through it.

I think you should take some of the pressure off of yourself and allow your wife to help you with your burden for awhile. I know that at times in my marriage we've had some incredible difficulties (my husband's struggling business, for instance), and I've had to build him up and be the strong one at times, just like he has with me. I would be really upset if my husband tried to carry all of his burdens alone - that's what marriage is for, to carry the burdens (and joys) together.

God, I talk a lot! Its because I can't in real life - no one understands this (except my husband, of course)!

 

Also - can you maybe go back on the Clonazepam for a little while? Maybe you just need to get some good Dr. Sarno training in first. Tackle the Clonazepam after you've got a little success under your belt? It's not great, that drug, but if you can improve a bit physically, even if you have to suffer the mental side effects (my son complains of complete boredom and lack of motivation on it), it will help build your confidence in TMS, and then you can try weaning off it later?

 

You're right about the hell that this is. I've gone from fighting fires to not even being able to pick up my kids. I have lose 35 pounds of muscle. I feel worthless. If I didn't have kids I would not be alive right now. As far as pressure goes we're single income, I can't work and my wife can't make enough money to pay our bills. I'm not even sure I could care for the kids if she did work. The reason I'm not 100% on board is I have had a pretty good life. Good parents and a good childhood. The last 5 years have been insanely stressful but they have been very happy. I have tried to journal about repressed emotions and have uncovered a lot but no progress physically. I guess you are right about the odds of tms vs pudendal issues. I'm still on the clonazepam just slowly going off. I haven't let go of getting better before I lose my job and I need to be off of it to work. I love my job. I would rather have my job than another one for triple the salary. Another reason this sucks so bad. I have always been the guy who can do everything now I can't do anything. Like you said its terrible. I'll try to get my wife on board but she is naturally a cynical person. Thanks for the help. It must be great to hear your son laugh. I have forgotten what that's like. Maybe that's part of the problem.

 

I totally understand about having had a pretty good life. I feel the same way. My son was bullied when he was 8, however, so his life hasn't been as idyllic as mine has. However, my son has had a very stable home life with parents who love each other and are best friends, lots of aunts, uncles, cousins, and loving grandparents. We live in an affluent area and he's never had to worry about a thing. But I think it's more the personality that a person has than their life experiences. He does have ADHD and dyslexia, so that may have started it all. Some people have terrible childhoods and major problems and never develop pain. They probably just don't have the personality type.

Everything you say about yourself suggests the perfect personality for TMS. Stoic, catastrophic thinker, anxious, keeps feelings bottled up, etc. Remember, Dr. Sarno says the anger doesn't even have to be rational - it can be as simple as anger at having to be grown up and responsible. You may not realize it or it might not be logical, but it might still be there.

It's too bad that you have so many financial pressures due to potentially losing your job, and the rush to get better within a certain time frame. That can't be helping you heal, it is such an incredible stress to add onto so much stress already. I get it - on top of my son's illness, actually because of it, we've had financial struggles which are a new thing for us. I've had to borrow from my parents because my husband and I can't work as much because we have to take turns caring for our son - we lived off of my husband's income alone until recently as well - I've had to start working to help out because his business is having a tough year because he can't dedicate as much time to it and our local economy also sucks - just a big mess, basically. We're in the process of selling the house we love to downsize as well.

Looking after little children is a lot of stress, too, no matter how much you love them. With pelvic pain, it is really hard to look after someone else when you can't even walk or sit or do any of the things the kids need you to do. Even though it's no one's fault and can't be helped, maybe there is subconscious anger about having dependents? For instance, when my father in law passed away from cancer, my mother in law was so angry at him for dying. Not rational, not his fault, but anger none the less.

You said "I've always been the guy who could do everything". That's a lot of pressure whether you realize it or not. That sounds like perfectionism to me. You may be happy in that role, but maybe subconsciously there is resentment or anger there because of it?

I just felt like with my son, and my own thinking about his "illness", it was one big downward spiral. Things just got progressively worse and worse until the day I literally said "enough" and told him he was fine. It's been improving since then, but there are always small setbacks. You mentioned in your first post the idea of a self-fulfilling prophecy, and it really sounds like that could be your main problem. It's incredibly hard to dig yourself out of this black hole. That's why I suggest getting your wife to take on that role, because you may be in too deep to do it alone.

 

I was thinking about triggers and conditioned responses and thought I'd mention a few things. My son had major conditioned responses. Since we had tried different diets, etc., he really responded to food - gluten in particular. He was convinced that eating gluten would bring on pain - and it did! Except when I fed him something with gluten but told him it was gluten free - then no increase in pain. Once I found Dr. Sarno, I told my son that gluten definitely wasn't his problem and he could eat as much as he wanted - and now he does. He eats a regular diet (okay, not as healthy as I'd like but he's enjoying himself at least) and gluten no longer triggers pain.

Another big one was showers. Last October he developed some of the worst pain he's had while he was in the shower. Since then he's been afraid to shower because he's always in bad pain afterwards. However, now showering doesn't trigger pain anymore, since I convinced him that it was a conditioned response and showers were not inherently dangerous or bad for him.

He pretty much developed a conditioned response to everything, because he had pain every single day, all day. It's been work, but we're slowing connecting the dots. The first snowfall of the year - pain. Baths and showers - pain. Hot weather - pain. The list goes on, but we're working on it.

 

Hope you don’t mind me butting into this thread. I suffered from pelvic pain (vulvodynia, IC, pain in hips, lower back, legs, stomach pain) for 2 years before I discovered TMS. My muscles were incredibly tense I couldn’t relax my legs at all for a while or sit down without pain. I went through the whole thing of scaring myself about pudendal nerve problems / pelvic floor dysfunction etc. I spent many hours in physio (and money!) having my trigger points released. It was very painful (sometimes it felt as if she was pressing on glass) and sometimes it did seem to provide some temporary relief. I tried doing the trigger point release at home but that never really worked and it just focused me more on the pain.
I didn’t accept Sarno when I first read about it – I felt it was just another bandwagon but a couple of months later I got the book and started slowly but surely to take the advice: start exercising doing things I like (instead of pelvic stretches), meditate, stopped any trigger point work, started to go out again, change my focus etc. I still get the odd twinge of pain but I can talk it away. My muscles are still tight around my back (I’m a work in progress) but now it’s minor discomfort rather than pain. It sounds as you are under a lot of pressure in your life and with doing the trigger point work. I’ve found now that as soon as I put myself under pressure my pain can flare up – so I make sure I do enough relaxing, enjoyable things to counter the daily pressure. It’s hard, it takes a lot of time and patience but you can get there.

 

Thanks for jumping in labrador. Ya I did the pelvic floor physio and all my trigger points were gone in a month. Now I have some externally on the right side and that's it. My nerve pain is bilateral. No one can find any reason for it. Unless I have pudendal nerve entrapment. But that doesn't make sense because if it was entrapment my symptoms wouldn't wax and wain I wouldn't think. Sometimes I'll get a day where I can sit for hours everyday. I was also remembering when this first started they put me on an antibiotic and everything resolved 100% for a week. Then everything came back. A month later they tried another antibiotic. I woke up one morning and my wife said she had a dream that the antibiotic worked. By noon that day I was pain free then everything came back by that evening. Crazy placebo I suppose. So after that I was on a million different antibiotics to no avail. As far as exercise goes in still so worried about irritating my nerves. If it was anywhere else on my body I wouldn't care. Maybe that's how tms works.

Steph
Thanks for mentioning conditioned responses. The shower is one for me too. Also it seems needles are as well. I had a trigger point on my right glute needled a few days ago and everything felt like it caught on fire. Seems like the more I try to fix anything physical the worse I get. I don't know if that's typical with tms but it certainly creates an emotional roller coaster. I keep holding on to the fact that your son still had pain with no pelvic floor tension. That seems to be my biggest hang up about tms. I can understand tms creating muscle tension but struggle to understand how it works directly on nerves. I know my muscles are relaxed. Maybe I'm like your son and just have a million different conditioned responses. My wife started reading Steve ozanichs book yesterday. I'm hoping it will be helpful. Obviously our relationship is two equals and not mother son so I don't know that her opinion will hold as much weight as yours does to your son. I also find it difficult to keep positive because of the prognosis of pudendal neuralgia. I'm sure I'll find my way but as you know time is not on my side. I guess I just need to let go of the worry surrounding my job and focus on getting better. I hope your son knows he's a stud for getting through this for a year.

 

Well, its certainly possible you have a million different conditioned responses. When you're in pain all the time, I would imagine everything you do could become a response, because you're thinking and worrying about everything you do! Just to name a few, my son's were - hot weather, cold weather, warm weather, snow, rain, thunderstorms, baths, showers, washing his hair in the sink, gluten, dairy, sugar, school, studying at home, talking about school, family get-togethers, having friends over, weddings, eating dinner downstairs and not in his room, cleaning his room, any activity of any sort including walking and taking stairs, going to the Children's Hospital (but not his family doctor or psychologist) - the list actually goes on from there. I had to talk him out of each and every one. We're still working on the hot weather one, and having friends over, and school.

I can't say how TMS works directly on nerves, except maybe the muscle tension comes and goes (compressing the nerve) and unless you're hooked up to the biofeedback at the exact right moment, you'll miss it, or maybe just the blood flow to the nerves is restricted, not involving the muscles. But, it definitely works on nerves. There's no way electrical, ripping pain isn't nerve related. My son used to get burning hot in his private areas as well - they were just on fire. That has to be nerve pain.

It sounds like maybe you're trying too hard to understand every in and out, almost like you're trying to prove to yourself that it's not TMS. You don't actually have a diagnosis of Pudendal Neuralgia, right? But you sound as if your mind is set on it. I get it - I was convinced too. Like I said, I had the children's hospital on board to schedule my son's MRI, and I questioned them about getting him an MRN since PN doesn't show up necessarily on an MRI. I had everything in place to get him diagnosed with it, I was 100% sure that's what he had. I showed my family members printouts on PN and said "I figured it out! this is what he has" - and it terrified me, because it seemed pretty much incurable. You're not the first person to conclude that they have the worst possible thing they could possibly have and their situation is hopeless. Instead of cancer, which so many people are afraid of and which in many cases is treatable, you're convinced you have PN, because it's really rare and hard to treat. Could that be it?

Also thinking about PN - it really shouldn't make a difference if you have trigger points and glute pain that responds to needling, etc. If it's an entrapment, it's entrapped, 100% of the time. Pressing a trigger point shouldn't increase or decrease the pain, because it's actually not muscle related at all.

It's so, so, so hard - but you have to try to let go of this need to find a physical cause and to come up with a million excuses why its not TMS. You'll never get better if you keep searching like that. Remember, Dr. Sarno said that there was a certain population of sufferers that he didn't even attempt to help because he could tell they couldn't wrap their mind around it - don't be one of those people!!

I say this from the position of a person who felt utterly hopeless and like giving up. I wasn't in pain, no, so maybe it's easy for me to say. But I did witness first hand what truly seems like a miracle when I saw my son start to heal.

 

Thanks steph
I do have a diagnosis of pn. But pn is a diagnosis of exclusion meaning that can't find anything else wrong with me. Also I pursued it much like you mentioned doing. The only thing I haven't done is an mrn. Like you said it won't show up on an MRI. I have been emailing back and forth with a guy who was diagnosed with entrapment via mrn and had 2 unsuccessful surgeries. He cured himself with tms. He's 100% now. He is convinced all pn is tms. It makes sense to me because of the fear that surrounds the diagnosis. They convince you everything will hurt. I have a coworker with pn. Pretty crazy given the chances are something like 1 in 100,000.

About my diagnosis. There is one pn specialist in the state of washington. He diagnosed me but even he seems to think I am not typical given I have no muscle tension and my nerve doesn't hurt to the touch. There is nothing wrong with me. I'm just in pain. I keep thinking the nerves just need to heal which makes me want to lay around all day. Most pn cases are people with several pelvic surgeries or some traumatic injury.

I was just reading a blog post by a tms doc that says the brain uses existing neural pathways to create tms. This makes sense for me as I had a bout of severe testicular pain in high school that they could find no reason for. Also when I had my vasectomy I was convinced I would be in the 1% that had complications. Now that I think about if for a guy who considered myself extremely confident my thinking was pretty messed up.

And this all started during an extremely stressful time for me. In fact the last 5 years have been insanely stressful. When my son was born I was 22 and my wife and I weren't married. I was a college drop out working construction for 12 bucks an hour. Since then we have built a great life for ourselves by me getting hired on with the fire department. I worked at the busiest station and was the busiest firefighter in the department by a long shot. I felt like I hadn't slept in 5 years. When we finally got set up financially instead of enjoying it my wife went back to school. Onward and upward. So I started working my 48 hour shift (no sleep) then I would come home run 5 miles and watch the three kids while my wife was at school. Maybe I just got run down.

You mentioned cancer. When this first started we were convinced I had testicular cancer. I often comment to my wife how I wish it was cancer because like you said its treatable. Sorry for my rambling just starting to connect the dots.

 

Oh my gosh, everything you say sounds so much like TMS. If you don't have it - I don't know who does!

I have also started to think that there's no such thing as PN, as well, that it's all TMS. Plus, is a diagnosis of exclusion really a diagnosis? It just means they haven't figured it out yet or have no idea, really. Like, prostatitis is a diagnosis of exclusion, as is IBS. Really, those conditions could be caused by a million things still, including TMS.

I think you know you have TMS, and maybe are just too afraid to commit to it? Your life does sound very stressful. It doesn't matter how happy you are or how much you love your job, life is still full of stress, and like I said before, it doesn't even have to be rational. Your life sounds like it was very, very hectic, and maybe this is your brain telling you you need to slow down and maybe find a better balance?

Just wondering - I obviously don't know you or your life, so don't take anything I say personally or the wrong way.

 

That's funny. I don't know if I mentioned this but I saw a tms doc who said the exact same thing. "If you don't have tms no one does". My hang up is my need to fully understand everything. And obviously fear. I have found really 0 accounts of people healing all the way with physical approaches and several people have fully healed using tms. I guess the odds are in my favor if I commit to tms. I doubt you have checked but has the trigger point in your sons back gone away? Just curious.

 

I haven't checked his trigger points, and I wouldn't anymore since I don't want him to get any ideas in his head about it being physical. But he is much less sensitive over all to any kind of touch or friction.

I think the need to understand everything gets in your way. That was my approach for the better part of a year and all it did was make my son worse.

 

Did he get progressively worse despite the"progress" that was being made with his muscular issues? That is what seems to be happening with me.