1. Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
    Dismiss Notice

It can start structural!

Discussion in 'General Discussion Subforum' started by CarboNeVo, Jun 19, 2017.

  1. CarboNeVo

    CarboNeVo Well known member

    2.5 years back I woke up one morning into hell, prior to that I was healthy athletic guy enjoying his life. My nightmare did not come gradually, it literally started overnight.
    I'll try to explain how I got TMS and how it can start structurally:

    19.02.2015: This day changed my life forever. I woke with severe sharp pain in my bladder/prostate area. It worsened by sitting. Over the months I had all the tests done and results would always come back negative, diagnose: chronic pelvic pain CPPS. docs: we can't do shit for you, sorry.
    Symptoms: pain in prostate/butt area, terrible pain after urinating, pain worsened by sitting, erection pain. Huge pain relief on weekeds and when I had not to sit in the office the whole day, depression and suicidal thoughts.
    I started googling like a maniac, in all the languages I know for 10+ hours a day. every results would lead me to CPPS and the stories were pure horror: destroyed life, relationships, people had to leave work and so on. then I came across to the pudendal nerve entrapment site, the cases there were even worse ! When I read the stories on PNE forums i thot my life was over for good. The internet is a scary place! I felt into deep depression.

    6 months later: My life is miserable, living in depression, managing my days around CPPS and finding a way out, it consumed my mind, till one day the same pain become extremely bad , within few hours it spread to my right flank. I thot this is gonna kill me for good- landed in the ER. a CT scan revealed two stuck kidney stones before my bladder opening. My urlogost: these stones are the culprit! we'll get them out and you'll forget this for good.

    over the period of another 3 months: I had the stones removed. It took 2 surgeries to get out the first stone that was stuck deep in my ureter's tissue. Pain gone? NO, my full blown CPPS persisted. The surgeries had no .impact on the CPPS whatsoever. Only the pain after urinating stopped, otherwise I was struggling with the same symptoms. I dismissed the idea that the stone were the culprit and thought there was no relation between my chronic pelvic pain and the stones.

    3 months later: still googling like a maniac, discovered tramadol- my miracle drug, 100mgs would gave me relief and numb my brain/depression/anxiety, as soon as I get the high/euphoric state, my pain would vanish. I however was really afraid abusing this drug as it's very addictive. So I used it only when things got really bad. One thing however I noticed and even read about during my obssesive googling, that the pain patterns would change according to my mood/ stresses/ emotional state. Prior to this I read few stories about people claiming that it can be psychological but I immediately dismissed the idea as the pain was clearly not in my head as I thot.

    15 months into this: The stress -> flareup pattern becomes more and more obvious, my pain started to disappear on holidays or when travelling or distracted with friends.
    I still did not know where to search however. Still battling with debilitating pain.
    Till one day I read a success story on the chronicprostatitis.com forum from a nuclear engineer who worked in CERN, he described the same behavior of his pain as mine, pain disappearing when distracted or not stressed about work. I had my omfg!!! moment. He ofcourse mentioned dr. Sarno, I read Sarno's books, resumed my life, returned to the gym. started playing football(soccer) stopped caring about the pain and it disappeared, but not entirely because during stressful events it would always creep back. Also I noticed that it started to leave my pelvis/pelvic floor and spread to my buttocks and legs. But the buttock/leg pain was nowhere as bad as the pelvic pain so I was happy.

    5 months back: I wake up in the morning with same sharp bladder/prostate pain as 2.5 years when it started !!!! This time I did not get fooled and immediately urged my urologist to send me for a CT scan. The CT scan showed a 6mm kidney stone stuck before the bladder opening, this time on the left side however. My full blown CPPS was back again, but this time i did not give a dusty fuck about it and was happy despite being in terrible pain. took the stone 12 weeks till I passed it. Once I passed it my CPPS disappeared completely, doesnt even return when I have stress, simply vanished, I have no clue whether it will return or not, but I am pretty sure that knowledge of the culprit helped me to neutralize the fear of the false diagnose and that I dont suffer with any pudendal nerve or prostate problems.

    My conclusion and thoughts on this:
    1- TMS can start perfectly structural.
    2- The docs flase diagnose, uncertainty and obssesive googling and self diagnose with scary diagnoses can cause your body go highwire and the pain sort of somatizes.
    3- This thing starts to have a life of it's own, I'll explain:

    Like I mentioned as soon as I started to discover the psychological connection to this disorder my pain started to change locations. When I was struggling with the stones near my bladder few months ago, my buttock legs pain/numbness disappeared, as soon as I passed the stone, my CPPS completely disappeared but the leg buttock pain creeped in pretty badly, not as bad as CPPS but pretty annoying to a point I sometimes take tramadol in order to be able to focus on work. And that's how things have been going so far and here's where I am stuck.
    Would really need some TMS veteran's idea on this, what drives my damn TMS?? It 100% started with the stones, now that I got my answers and CPPS disappeared, what keeps my TMS alive?
    I have two thoughts on it:

    1- either my body was using the stone and misdiagnosed CPPS to distract me from my emotional state.
    2- my body has gone highwire and will keep producing symptoms till I neutrlize the fear associated with them, then they will creep somewhere else...
    How should I proceed? No clue...
    Would appreciate someone's thoughts on this :)
    keenie82, adyxon and jaumeb like this.
  2. Celayne

    Celayne Well known member

    I'm still new to this game but from what I have read, yes, it can start with a structural problem or an injury. Our (TMS sufferers) brains never get out of the flight or fight response to the perceived threat. I either read it in The MindBody Prescription by Dr. Sarno or The Great Pain Deception by Steven Ray Ozanich. Maybe in both. Anyway, chronic pain/TMS all starts with our wonderful brains and that's where you have to do the work to get past it.
    Cap'n Spanky likes this.
  3. Gigalos

    Gigalos Beloved Grand Eagle

    Impressive, I certainly hope to never ever get kidneystones. I agree with cricket that it is entirely logical that the onset can be structural, but the severity and staying around of the symptoms is the result of your brain not letting go.

    You discovered and accepted the psychosomatic nature of your problems, most people don't and suffer their whole lifetime so congratz to you. You experienced shifting symptoms, which you could see as a brain being caught in the act, it blew its cover. That my dear is worth more than gold, because you can always go back to that insight, even at the worst of times.
    From here you can do many things. Mindfulness, to train your brain not to react to symptoms and emotions, but rather accept them as being benign. Journal or talk with a psychologist to dig a little deeper in what might be responsible (don't overdo it though, so it won't become a distraction just like your symptoms). One thing I often do nowadays is simply use an affirmation that is very powerful: 'Despite all, I always love and appreciate myself '. It is powerful because this is often at the root of things. We good-doers and perfectionists constantly criticize ourselves and feel guilty for not meeting up with our unrealistic standards. Use this affirmation or create your own and particularly use it when you feel your symptoms flare up. Another tip is that trying to get better can also be your pitfall. Take your time, don't get upset because things improve slowly or not at all. Don't get upset for failing in your efforts to think psychological. You are only human.

    Hope it helps! Take care!
    keenie82 and CarboNeVo like this.
  4. Celayne

    Celayne Well known member

    The shifting symptoms are so weird. I noticed them for years and used the shifting to reassure myself that I didn't have something terminal but I had no idea about TMS. I was stunned when I read The MindBody Prescription and learned that that was one of the clues in diagnosing TMS.
    CarboNeVo likes this.
  5. JFH

    JFH Newcomer

    Hello CarvoNeVo,

    Please can you tell me if your urinary flow was weak when you had CPPS and if it improves once it heals? Thank you

    I apologize for my English.

Share This Page