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New guy with lots of questions

Discussion in 'Support Subforum' started by mc1986, Nov 5, 2014.

  1. mc1986

    mc1986 Peer Supporter

    Hello, I have been dealing with pretty debilitating pelvic pain for the last 5 months or so. I was recently turned on to the idea of tms by someone from a pelvic pain forum. I am struggling with the idea that there is nothing physically wrong with me. I am hoping to get some reassurance. It all started with a case of testicular pain that was diagnosed as epididymitis and treated with antibiotics. As soon as I was diagnosed I started googling. I convinced myself that because I had had a vasectomy that this was going to be a chronic issue. I soon found a link between epididymitis and prostatitis. I was then convinced that I would get prostatitis. That's when I started to get symptoms of that. I then went back to google and found that prostatitis can become chronic. Catastrophic thinking kicked in again and I was convinced I would get chronic prostatitis. At this point I started to get pain in my perineum along with the pain in the testicles. After this had been going on for I while I began to research pudendal nerve entrapment. Up until this point all of my pain had been achy muscular type pain. After I sought treatment for pudendal nerve pain I began to have pain that was burning and tingling. So here I am now with a couple different diagnoses. Chronic pelvic pain and pudendal neuralgia. I have been unable to work for the last 3 months. I have 3 kids and a wife and we are single income. I have a very physical job that I love but I can't sit down and I can't do anything active. All of the imaging and tests I have had done have been normal. I went through pelvic floor physical therapy and my pelvic muscles are no longer tense. My hang up in jumping into tms with both feet is that pudendal nerve disorders are very difficult to diagnose and the imaging being negative is typical with the injury. I have also seen some improvement with physical therapy but always seem to relapse. I have no doubt that the pain is coming from the nerve. Can tms cause nerve pain? I have been journaling the last 2 nights and find that my pain gets much worse while I'm journaling. Is this an indication that it is tms. I am a perfectionist I am a people pleaser and tend to be fairly stoic. I am also a catastrophic thinker. Is it possible that my pattern of thinking this way has created these symptoms? Almost like a self fulfilling prophecy? Any advice you all could give me would be greatly appreciated. My life is falling apart and I want so badly to resolve this issue.
     
  2. Steve Ozanich

    Steve Ozanich TMS Consultant

    Forest needs to make up some type of digital-rubber stamp that I can use for telling people they need to get a physical exam first, yadda yadda, to make sure they don't have anything life threatening there. Then....once they've done that, I can give TMS advice.

    Now, if you've done that stuff, then I will say you are very typical of many people that I've spoken to, men that is, since you had a vasectomy you're not that typical for a woman.

    What you describe is typical, not unusual, and the pudendal nerve is often involved in TMS. Add that to your admittance of having the Type T personality and voila, you have TMSer soup, and probably TMS. This is good, now you can get your life back.

    I'll tell you story, so pull up a chair (if you can sit). A guy went to see Dr. Sopher, he couldn't stand, sit or walk without pain. He had been diagnosed with pudendal neuralgia,and idiopathic pain syndrome by previous doctors. He had tried everything, and of course these very things were keeping him in pain. Within 3 weeks of seeing Marc, who diagnosed him with TMS, he was feeling better, and within 3 months he was back to living a normal life again.

    But first he had to get away from his doctors, and then accept the TMS diagnosis.

    So, gather the TMS info mc86, let it sink in, and congratulations (if you decide to accept it, Mr. Phelps).

    Steve
     
  3. stephb

    stephb New Member

    I'm a little late in replying, sorry about that. I'm new here. Your story sounds just like my son's. He's 14. A year ago he started having pain in penis (he says in the urethra), and sometimes in his testicles. I've spent the last year researching what it could be, as it's gotten progressively worse until he was pretty much bed ridden. He's been to countless doctors, the Children's Hospital to see so many specialists, psychologists, had ultrasounds, urethrograms, tests - you name it. They can't find anything physically wrong with him.

    In my research, I came across Pudendal Neuralgia about 2 months ago. I was convinced that is what he had - he was literally a 100% match. I was about to schedule an MRI for him when I came across Dr. Sarno's books.

    I read The MindBody Prescription. It made so much sense. I told my son that day that there was nothing physically wrong with him, that all of the tests he had had proved it, that the pain was from muscle tension and decreased blood flow to his nerve, penis, pelvic area, but it wasn't serious and wasn't damaging him. He wasn't dying. I completely changed my attitude from one of treating him like a patient who was weak and fragile, to treating him like a healthy person who could take control of his pain.

    The amazing thing was - he literally had no pain for 2 weeks after that. Zero. This was a boy who has been bed ridden for the previous 6 months. He has dropped out of grade 10 because his pain was so bad he could barely walk. I was homeschooling him a little bit each day, but even that caused him so much pain we had to stop. He wouldn't leave the house except for the doctor, and even then it was a fight.

    This was a month ago. After his 2 weeks of no pain (I stopped asking him how he was feeling, I stopped keeping his pain diary, I stopped all of his supplements and treatments), he cried and told me he hadn't had pain in 2 weeks. The very next morning he had pain again. I coached him through it and it went away.

    So, now he has pain here and there for maybe 1/2 hour at the most. He had previously had pain 24 hours a day, 7 days a week. He had had nerve pain - burning, stabbing, electrical. He had tremendous spasms where'd he cry out. It's unbelievable that's its now gone, for the most part. I just keep reminding him that he's fine, he doesn't have cancer, he has to think about what's bothering him and what he's angry about. I've learned a lot from him. He has a lot of anger that he was repressing, about being bullied, being sick, pressure from school and friends and me, etc.

    So, what you think is pudendal neuralgia may absolutely be TMS. I did all the research and booked all the appointments and treated my son like he was sick and fragile, and he paid the price. He didn't read Dr. Sarno's book, he doesn't know any of this, except for what I tell him. Just my attitude change was enough to get him back to a relatively pain free life. We still have a bit of work to do, but he's getting his life back, which 2 months ago I wouldn't have thought was possible.
     
  4. Steve Ozanich

    Steve Ozanich TMS Consultant

    The same is true in this case, don't overlook the area as a source of shame and the fervent desire to control an objectionable impulse, as always, to hide shame.

    Steve
     
  5. stephb

    stephb New Member

    That makes sense, Steve. My son confided that his worst pain ever was when he tried to masturbate (he was on Tylenol with Codeine when he said this - it makes him talkative and open). He's a very black and white, good and evil type of thinker, a major rule follower who panics when other people don't follow rules - so I would imagine he is ashamed of his normal burgeoning sexual urges.

    I'm very open and talk about every thing (Dutch - nude beaches were normal for me growing up), but my husband is quite uptight and can be prudish - must be confusing for my son.
     
  6. Steve Ozanich

    Steve Ozanich TMS Consultant

    StephB, you get it.

    I first began to understand this concept when I talked to Dr. McKenzie and he mentioned Raynaud's to me, and how prevalent it was in teens. I cited it in GPD, pg. 308,
    “....(the) extreme need on one part of the mind to control an extremely objectionable impulse belonging to another part of the mind.” This of course is exactly what Dr. Sarno proved. Guilt and shame, as society and family has deemed, are painful, and to overcome the pain of the shame we divert our unwanted thoughts and emotions to our body through bloodflow reduction, in this case, to the hands. In the last paragraph of GPD, I said that "I’m often asked if I could sum up TMS in one word. Although tension results primarily from id-superego conflict, if I had to give the cause of pain an emotional label, it would be guilt or shame."

    Since McKenzie opened my eyes I've received several emails from people who are sons and daughters of pastors, and families of strict societal construct, who go into deep pain spasms when they are physically attracted to the opposite sex. Their mind divided places them in deep conflict as they naturally desire the other, but also feel the need to stop that impulse as to "not be evil."

    Thus, conflict, thus, pain.

    But we know that nature gave us the natural need for the other, so it is society that has created the illusion of evil, in this case.

    On page 33 of GPD, I quoted from Freud's, Inhibitions, Symptoms, and Anxiety,.. .."A symptom is a sign of, and a substitute for, an instinctual satisfaction which has remained in abeyance; it is a consequence of the process of repression…. The ego is able by means of repression to keep the idea which is the vehicle of the reprehensible impulse from becoming conscience." When we stop an impulse the byproduct is tension, and as Dr. Sarno said the symptom is to prevent the thought from rising to consciousness. And by now most people know what the T stands for in TMS.

    I often wonder if people are understanding why I put certain things in that book? But I can say it's working all over the world, now in 14 countries. So at some level people are putting it together. When we don't get what we want, we get tension.

    When I tell people about paying attention to pelvic floor pain I'm serious about the symbolism. Females are prone to the same wants and desires, and also to the same need to be good, and to punish those desires. Dr. Sarno stated on several occasions that these people were suffering from wanting to be good people. When impulses are believed to be bad...the good person punishes himself, or herself.

    "That's all I got to say about that." Forrest Gump (not our Forest)

    Steve
     
  7. stephb

    stephb New Member

    Steve, I'm going to have to read your book.

    If there's one thing I know about my son, it's from a very early age his id and superego were in conflict! He is in constant battle with himself. It's painful to watch. He's also in constant battle with the world - he spends his life getting upset about what should be, instead of learning to deal with what is.

    He attends (attended, he's home for now) a Catholic High School and went to a Catholic elementary school as well - although he questions God and religion and has from a young age, his schooling must have had an effect on his good and evil thought processes, and on guilt and shame especially. I'm sure he feels guilty for even questioning if God exists at all. It's ironic, actually, because my husband and I just send our son to the Catholic school because it's the better school system in our area - didn't think about whether my son could handle the other aspects of it.

    He worries so much about what other people think, and is such a ball of anxiety. It makes sense that his pain would manifest in his pelvis. Coincidentally, he woke up this morning really scared because he finally had an erection after 6 months of not having any, and is now terrified that his pain will come back. I assured him that he should celebrate, because his blood flow is returning and that means he is healing for sure, and that it definitely is just tension and nothing really serious. He's trying to believe me, but his fear is so strong. He needs the positive reinforcement of not having any pain this morning in order to help him quell his fears.

    I apologize if this is TMI for some, but at the same time, my son can't be the only one dealing with this and if this information helps anyone (hopefully the OP at least), then I'm happy to share (and I would never give my son's name, etc or any identifying details).

    You've given me lots to think about, Steve.
     
    North Star and Ryan like this.
  8. Steve Ozanich

    Steve Ozanich TMS Consultant

    Well, he has all the personality markers of a good TMSer. I went into detail about the TMS personality in GPD. I said that they are black and white thinkers, catastrophizers, worry what others think, etc etc.. They also grapple with right and wrong. And even Mother Theresa said she had doubts in her life about God. The essence of life is to live and grow and learn and expand consciousness.

    Perhaps your son should learn about TMS too. My back pain began at 14 yos. I was in pain for 30 years until I found Dr. Sarno. This information could save him lots of suffering. This struggle he has now will make him a better man, and I believe, he's going through it for a reason. He's going to change the world somehow, for the better, if he chooses light. Without struggle we cannot free ourselves from our own bonds.

    Let me know how he does.

    Steve
     
  9. mc1986

    mc1986 Peer Supporter

    I just logged in for the first time in a while. I am so happy for your son. I have had bouts of success here and there but keep looking for physical answers. One more success story definitely helps. I can relate to your son in some ways. I have always been anxious but have become expert at not letting it show. In fact I am known for being so calm and cool headed. I have had to be as I am a fireman. I have embraced this calm cool personality for as long as I can remember. If you were to ask anyone but my wife they would tell you I was the least anxious person they know. Perhaps all this bottled up anxiety is causing my symptoms. I am also very guilt prone. I need to be the best dad best husband best firefighter. If I can't do that I am overwhelmed with guilt. Again these are not things people know about me. They just assume I am naturally all of those things I just mentioned. In fact I feel a little better writing this right now. My biggest pain trigger is when one of my daughters has a melt down. I suppose I need to recondition myself to these situations. I am not really sure where to start. Like I said I am so happy for your son. This condition is hell and I can barely handle it as a grown man. You must be very proud of him. Thanks for posting you have given me hope. Steve thank you for continuing to monitor and giving expert advice.
     
  10. stephb

    stephb New Member

    Thank you, Steve. I am encouraging my son to read The MindBody Prescription at least. I may read it out loud to him while he plays video games - he absorbs information well that way. He is dyslexic and has ADHD, so getting him to focus on reading or even on videos is difficult (he doesn't even watch TV - too much concentration required). So, he is basically the perfect storm of personality traits and learning disorders to develop TMS!

    Interesting that your pain started at 14. Until you mentioned that, I thought my son was the youngest person I've heard of with TMS. I'm sorry you suffered for 30 years, I am so happy to have found out about TMS this early.
     
  11. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Reading the book to your son, a little at a time, could reach him about TMS. Good luck to you both.
     
  12. stephb

    stephb New Member

    mc1986 - I'm glad you replied!

    I have to say, my son sounds like you. His entire childhood my family would remark on how calm and even tempered my son was. He never got angry - ever - except for maybe one tantrum at the toy store that lasted all of 5 minutes, when he was 2.

    We used to remark on how incredibly lucky we were as parents, my husband and I, because our son never threw fits, never disagreed, never talked back. How wrong we were! Instead he developed this incredible penis pain that left him bed ridden and wanting to die. He has also been diagnosed with an anxiety disorder. He catastrophizes everything! He is taking .5 mg of Clonazepam a day for the anxiety but we are trying to wean him off of it because he hates the way it makes him feel - a painful boredom, mainly.

    It is difficult to accept that pain that severe is caused by muscle tension, but I've seen it first hand. We were telling people that my son's pudendal nerve was severely compressed and my son was begging us for a wheelchair! Just a month ago! He couldn't even wear pants - he wore extra large boxers exclusively around the house - because his foreskin was so sensitive.

    He still has a lot of fear that it will come back, but I just tell him to visualize his muscles relaxing and blood flowing to the area. Or I ask him what he's angry about - he always has an answer now. He had bad pain during the first snowfall this year - until I reminded him that it was the same time his pain hit last year - during the first snow fall. His pain never lasts anymore. Even his intense fear of the pain this morning has not brought it on today.

    FYI - just looking at the progression of your symptoms - they're very similar to my son's. He started with penis pain, though. I was convinced he had prostatitis until his pediatric urologist said the term was basically meaningless. He then developed testicular pain so bad at times that he said it felt like someone was squeezing them really, really hard, and pinching - I almost brought him to the ER thinking it was testicular torsion.

    He developed pain in his perineum -he couldn't sit in a chair at school. He was always lying down. He ate in bed lying down. If by some chance he had to sit in a chair, he leaned way back and sat on his upper butt/lower back - like in the car, his feet would be up on the dashboard.

    He went through pelvic floor physical therapy and it helped - he learned relaxation exercises and did biofeedback. He felt he made some progress but his pain never fully went away. The therapist said his nerve was compressed from tight muscles - she was right, but the treatment was different than the exercises she prescribed.

    I stopped all treatment, even physio which he felt was positive, because I wanted to get it out of his mind that this was physical. and I hid all of his medication and supplements that used to be right on his nightstand, because he didn't need to see them and think about them anymore.

    You'll get there. You have to believe, and you have to stop thinking of yourself as a sick person. And visualize the blood flow returning (my son hates this part - blood grosses him out).

    Let me know how you're doing, please.
     
  13. hoolie

    hoolie Peer Supporter

    StephB-

    This is a phenomenal thread. You are an incredible mom! Be good to yourself throughout this too!

    -Hoolie (A mom, who is learning how to be good to herself as part of the healing process)
     
  14. stephb

    stephb New Member

    Thanks, Hoolie, that's nice to hear. I feel a lot of guilt about my son's illness and just difficulties in general, so thank you.
     
  15. mc1986

    mc1986 Peer Supporter

    Steph everything you say sounds very familiar. I did pelvic pt to the point where my muscles have been determined that they are normal. My problem seems to be completely related to the nerve. This worried me initially and I thought it couldn't be tms because my muscles were not tight. However I began reading divided mind and found that nerves can be directly involved. This has given me new hope. I too am on klonazepam and hate it. I have never been on meds in my life. I think the fact that I need to take meds makes me feel like a failure. I am weening off of it. It's a terrible drug. Hoolie is right it is awesome you are doing this for your son.
     
  16. stephb

    stephb New Member

    Thanks, mc1986.

    My son was still having nerve pain (electrical, burning, stabbing, ripping) even after biofeedback showed his muscles were relaxed as well. We thought maybe the biofeedback machine was broken because it didn't register any tension. Even if his pain was at a low level for awhile, like a 3 out of 10 (a 3 was a good day), he still had the electrical feeling. So, that's why I was convinced it was pudendal neuralgia as well. I just couldn't see how it wasn't an entrapment when he suffered from 24 hour a day electrical shock feelings in there.

    The chiropractor also did an assessment on him and said that all of his pain was along the pudendal nerve, from lower back to thighs and as close as she could get to his privates, she checked him. She couldn't believe how sensitive he was - she would just barely touch him and he would wince in pain. That was literally days before I tried the Sarno technique on him and his pain went away 100% for 2 weeks.

    The clonazepam is horrible. Originally I thought it was helping his pain due to decreasing his anxiety and possibly relaxing his muscles, but now I don't think so at all. It just affects his mood so much and makes him so unhappy. He's been on about 4 different anti-depressants and every one of them increased his pain hugely and made him almost suicidal. We are done medications - the doctors didn't know what to do with him so they just threw whatever medication at him they could think of. A lot of time and money wasted, and unnecessary pain for him.

    However - don't feel like a failure for trying medication! It's part of the process of trying to figure out what is going on, and if you don't feel it's helping then that is one step further towards knowing it's not a physical ailment but a psychological one.

    My son has also been on Flomax for 4 months and I will wean him off of that next. I think he's scared to give that one up as it had a bit of a placebo affect on him for about a week in August and he still kind of clings to that.

    Anyway, he is proof that TMS affects the nerves as well. I don't think anyone can deny that ripping, electrical feelings aren't nerve pain.
     
  17. stephb

    stephb New Member

    Just saw your reply, Walt. Thank you, that is what I will do, I think. 20 minutes a night while he plays Halo on his Xbox shouldn't be too painfully boring for him!
     
  18. mc1986

    mc1986 Peer Supporter

    Steph
    I don't want this to sound bad but the fact that your sons pain continued after his muscle tension resolved is the most hopeful thing I have heard since this diagnosis. I completely relate to the "electrical" feeling. For me it's like someone hooked up a nine volt battery to the nerve. Not extremely painful but obsessively annoying. Your posts have been just what I needed. I see a tms doc today and am ready to jump in with both feet. Thank you so much.
     
  19. stephb

    stephb New Member

    No, that doesn't sound bad at all - that's why I told you. It was the one thing that would not go away when his pain fluctuated. It was present all of the time.

    My son told me that the electrical shock feeling wasn't the most painful part (the ripping, stabbing pain was, and the spasming), but it was annoying and ever present.

    Also, the fact that your journaling makes your pain worse - to me that is huge. My son's pain was out of control right after he did anything that he considered stressful (such as journaling would be for you, I imagine) - so, going for the urethrogram - his pain was terrible afterwards but not as bad during. Going to school - his pain hit hardest once he got home.

    He is a catastrophic thinker, and my obsessive research totally fed into his thinking. I constantly asked how he was feeling, what was his pain on a scale of 1 to 10, what was his high for the day and low for the day, did gluten make him feel worse, or was it dairy, did the magnesium stop the spasming, what did he think of this new idea (ie. pelvic floor dysfunction - it sounds just like what he had!), etc. etc.

    I literally spent 4 hours minimum per day researching what could be wrong with him. I can't believe how much I fed right into his anxiety with my own anxiety. It's so obvious to me now! Ugh, I wish I could take back this entire past year!
     
  20. North Star

    North Star Beloved Grand Eagle

    StephB, hats off to you! I am so sorry your son has to deal with this. He is extremely fortunate to have a mom like you who has not only done the homework for help for your boy, it takes great courage to take the path less traveled in treating it.

    Re: his age. I just wanted to add that his age doesn't surprise me at all. My first TMS symptoms started around the age of 4 or so.

    Good luck to you and your boy. Thank you so much for sharing so candidly. It's so very cool to see how it is helpful to others, especially mc1986.
     

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