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Looking for Reassurance

Looking for Reassurance

by D Sm -
Number of replies: 3

Greetings All,

I'm a middle aged male who has been suffering from Chronic Pelvic Pain Syndrome/Pelvic Floor Dysfunction for almost a year and half now. I literally woke up one day with terrible pelvic pain. The day before I was active and normal, then bam I'm hit with excruciating pain in the pelvis, genitals, tailbone, suprapubic region, perineum, inner thighs, and pain after urination (strange isn't it?). At the start the pain was a 10 out of 10. It was terrible. Over time additional symptoms appeared. I was having trouble urinating, had mild urgency, and flare ups after bowel movements. Sex was out of the question because orgasm would send the pain into the stratosphere. I saw two family Drs, three urologists, and three orthopedists. I had urine tests (negative), prostate exams (normal), pelvic MRI (normal), lower back MRI (normal), hip MRI (mild degeneration), CT scan of pelvis and abdomen (normal), ultrasound of kidney and bladder along with voiding test (normal). Lots of blood work to include Lyme disease, Rheumatoid arthritis, full metabolic work up, and general inflammation all came back "unremarkable". Despite a lack of evidence for an infection, I was put on Cipro for a month along with Flagyl. Neither of those antibiotics did a thing to help my pain. In fact, I was worse off afterwards.  I was attending pelvic floor physical therapy weekly, but quit going because of mix results.

Fast forward to today, I must say my pelvis is doing better. I'd say I'm 60-70% healed in that arena. The healing really kicked off after reading Sarno's "The Divided Mind". After reading that I'd say my symptoms reduced immediately by 20%. It was amazing, but it's been slow going ever since, and I've developed a set of completely different symptoms in the last week or so. I'm getting mild dizziness, brain fog, feeling tired but wide awake (if that makes sense), chest tightness, and strange vision issues that I can hardly describe. My vision isn't blurry or double. I can see fine. It's almost as if there's something in the periphery or my vision just kinda spaces out. I had my annual eye exam last week and I'm seeing better than 20/20. Eye dilation exam "looked great". During these dizzy/vision episodes I'm getting this strange feeling of certain doom. I feel like I want to get up and just run, but I don't know where too or why. It's strange and extremely distressing. Interestingly I feel almost normal in the evenings. However, almost immediately upon waking I can feel the tension in my lower abs and pelvis begin to build and the mild dizziness\vision phenomena start. It really ramps up  when I'm at work (I abhor my job), but it also happens on the weekends to a somewhat lesser degree. In the evenings after my kids go to bed is when I feel the best. My rational mind says my issues are clearly mind body, but I can't shake this tiny bit of doubt that there is something physically causing my issues. The doubt is really holding me back. Sometimes I'll start to panic, because I think the Drs.have missed something. Right now I'm worrying about worrying to much. Can anyone provide some tips on how to eliminate the doubt/worry? I've purchased the Unlearn your Pain book, but haven't started it yet. Thank you.

In reply to D Sm

Re: Looking for Reassurance

by Tim Hutton -

Hello,

Thank you for participating on this forum and for openly sharing your pain, doubt and concern.

I don’t have one person in my day to day experience who has anything but the most superficial understanding of the dynamics of TMS, the degree of the torturous pain it can inflict or its mind boggling ability to effectively and convincingly appear to be a result of a physical rather than mind body cause. I know countless people who suffer from TMS, but they always follow conventional methods for treating it with surgeries and drugs succumbing to the belief that the cause is physical. They escape the insult to their self-image that usually attends the recognition of the underlying psychological factors, but they never resolve their issues which just show up differently in other locations throughout their bodies and will for the rest of their lives if the fundamental cause is not discerned.  

I began participating on this forum about 8 years ago. While beginning to write these words here now, I am stunned by how much my life has changed, how much my relationship to TMS, my body and the residual persistent doubts has changed.

At first, I thought that surely any and all lingering doubts would go away. I mean, after all when you have observed directly, personally, first hand, how TMS works; when you’ve seen how the intense and searing pain goes away and leaves no trace, after seeing this time and time again, how can there be any doubts?

And yet strangely there are doubts. But I’m no longer thrown by these imposture doubts. I am a scathingly honest person and yet I refuse to claim these doubts any more as “my doubts.”  They are the inevitable result of living within a world of billions of people, nearly all of which believe that chronic physical pain is primarily caused by physical deficiencies.

Like walking calmly along a beach, without going directly into the water, you still feel the subtle ocean spray of the waves. It is just a matter of being where we are.

When I first read accounts of people who suffered from TMS I almost always thought, “I doubt their degree of pain was close to my pain,” or some version of “I don’t think they were as deeply effected or as bad off (messed-up) as I am.” I’ve written about the details elsewhere on this forum so Instead of taking time to write about the extent of my suffering which was over a 30 year period, let me just clearly report that it almost cost me my life. It was as bad as any case I recall reading or hearing about.

I am deeply grateful for the role that TMS has had I my life. The unique way it has impacted me. The one Diamond that is forged from the fires of TMS is that it offers you an opportunity, time and time again, to finally and eventually take a stand as your own best friend. I believe that I will never in my heart of hearts betray myself again. I’m no one special, but I’ve earned my self-respect. There will be moments, perhaps extended periods, when I will again be bewildered, self-doubtful and confused, but I will land on my feet because I have found a home within myself and I’ve discovered that the instincts of my heart can be trusted.

Presently while writing this I have TMS pain. It had been absent for so long, but a financial crisis has come along (which were always major triggers for me) and I have been struggling with the pain. It happens that this is quit severe pelvic pain. But this struggle is so very different from the way it used to be. It hurts badly, but I can’t really even call it struggle, it sort of doesn’t qualify, because relative to this, what I used to call struggle was so overwhelming to my mind. So defeating on so many levels. This, though very painful, is like “There the dog goes barking again.” It’s kind of like knowing the truth of what it is, is more important than feeling pain-free. 

Pain-free will come. I know the truth now and there is a great depth of solace and peace to that.

Wishing you the very best my friend,

Tim.


In reply to D Sm

Re: Looking for Reassurance

by Howard Schubiner -

Thanks for writing, D. 

Your story is so amazing, horrifying and unique, but yet so familiar at the same time. Tim, thank you for such a beautiful response. It was very moving to me. 

 The problem with you, D. and Tim and me and all of us is that we are human; simply human. We have a brain, a mind and a body; these interact in fascinating and powerful ways; and at times, pain and suffering occurs. But it is temporary; you will recover. You are not damaged or broken; you are whole, and in the process of healing from the inside.

Your symptoms are shifting to new ones since you are no longer afraid of the old ones. The danger signal in your brain is just trying to protect you (from life itself) and it is trying to scare you into doing nothing. Don't be fooled. There is nothing wrong with you.

The new symptoms are simply different forms of MBS/TMS. Nothing more. The scary thoughts and the doubts about them and about if this is all really TMS is also your brain trying to scare you. Separate from those doubts, know they are just your brain, watch them rather than trying to quash them; they will subside, only to rise again. But each time they rise, you will be ready and able to just observe them and not fall back into more fear.

Does that make sense?
Let us know how we can help.

Best, Howard

In reply to Howard Schubiner

Re: Looking for Reassurance

by D Sm -

Thank you all for replying. I really appreciate it. 

I had a strange gut feeling (almost otherworldly in nature) yesterday to try something that had very interesting and completely amazing results. I was driving home from work and I was having some pelvic pain and mild dizziness with pressure/pain in my head and neck region. As I was driving I would simply say out loud to myself in a kind and caring voice "I have TMS. Right now I have pain in my suprapubic region, and that's ok." Instantly the suprapubic pain melted away and moved to the sacral area. So I tried it again "I have TMS. Right now I have pain in my sacral region, and that's ok." Poof, the pain instantly vanished and moved to my right hip. I was amazed, but still not quite convinced so I tried it on my headache/head pressure and it did the same thing. At first I had pressure and pain at the base of my skull, then it jumped to a tight band around my brow, then to my right temple, then to the back of my upper jaw. I began to laugh. It was completely crazy. Just saying  "I have TMS. Right now I have pain in my XYZ region, and that's ok." cast a light on the pain which made it scurry to another spot. It was like I was literally chasing the pain around my body in real time. I was simply dumbfounded. How can I have any doubt now?  I woke up today with zero pelvic pain. A couple of times today it started to creep back, but I was ready for it. Same thing with head pressure and head pain. I'm still experiencing some mild dizziness almost vertigo like sensations, but you know what? That's ok. If the pelvic pain or headache comes back for a visit that's ok too. You are right Dr. Schubiner, this condition is driven by fear. 

One thing this condition has made me realize is that I've lived my entire life in varying states of fear and I've had TMS since I was a kid. I can remember periodically waking up in the middle of night with terrible anal pain as a child (which continued into adulthood). I recently learned there's a medical term for it, proctalgia fugax. I recall bouts of chest tightness as a kid, but nothing was every found wrong with me. I remember waking up with migraine headaches. I've always been a habitual teeth grinder in my sleep and jaw clencher when awake. I currently wear a mouth guard when sleeping, because I've worn my teeth prematurely.  As a kid my parents yelled and fought almost daily. My father was very anxious and angry which further contributed to the fear.  I now understand how that would make a child fearful and feel unsafe. Just today I remembered having the same visual disturbances I'm experiencing now while in college. It was my last year in college and I remember being terrified of the thought of joining the workforce. I had lots of self doubt, and still do. Interestingly, my sister suffered from what I know believe was TMS some years ago. She had subjective weakness in her arms and legs, numbness, dizziness, and extreme fatigue. All medical tests she had came back normal. It wasn't until she attend psychotherapy that her symptoms finally resolved. It certainly is not a coincidence that we both grew up in the same environment and ended up with mind body issues. Anyway, thanks again for the replies. Knowing that there are other out there that genuinely care is comforting.