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1 year later I'm 90% Healed. Here's what worked and what didn't

Discussion in 'Success Stories Subforum' started by balancedanswers, May 1, 2021.

  1. balancedanswers

    balancedanswers Peer Supporter

    I'm writing this post so you may be able to benefit from my 1 year of research into chronic pelvic pain.

    A year ago, I was in pain everyday on a scale of 5-7. Today, I am near a 1 and sometimes 0 on most days.

    I hope this post can save you a ton of money, time and energy because I know what it feels like. Tons of doctors, none of them really knowing what to do, some pretending they do, and no one really cares when you're all alone in your room, in total pain and wondering why it's happening to you.

    While you may be one of the few lucky ones who meets a doctor or practitioner who cares about his/her craft, cares about you, and understands the exact condition you have, you should not depend on this. I can tell you from 30-50+ practitioners, doctors, PTs, only about 10 were really kind hearted, money wasn't #1 on their minds, and of those, only about 2-3 really had to specific expertise to help me with my pain where I experienced a noticeable, sustainable difference.

    A year ago I woke up in massive pain, like someone stabbing a knife into my pelvic area. I ended up in the ER at UCLA. They did an ultrasound scan and the doctor inspected me. Found nothing and gave me pain killers. The next few weeks, I followed-up with every pelvic specialist I could find. I was super healthy, young and living my best life in LA so this happening to me out of the blue was really stressful.

    The first order of business was to figure out what was causing the pain:

    Tissue/bone damage - The MRI with contrast scan, CT scan and ultrasound ruled out any tumors, nerve damage (MRI) or tissue damage. This was reassuring, but also stressful bc if not this, then what was causing it?

    The next step was pelvic PT. I did a digital rectal exam (DCE) and it was tight. This sent me down a path of pelvic trigger point work.

    This worked a bit, but I hit a wall. This was when I dived into the mind body / TMS / psychophysiological world of John Sarno.

    Sarno's work pushed me over the recovery and I was no longer in pain everyday, but one of the dangers of these doctors / therapists is that they are dogmatic - they believe everything is related to your neuro-connections and that you should ONLY focus on the psychological vs. physical. I think this is very misleading, bc you can still have muscle issues and have psychological perpetuating factors.

    Having been doing Trigger point work for 10+ years on my arms from repetitive stress injury while I was working at Google, I knew that I was prone to these type of injuries. The work of Simon and Travell is well documented, and non of the mindbody doctors knows how TrPs really work.

    So, now I moved further from mindbody work ONLY, to really recording and assessing my progress. So this is where I made major breakthroughs, because I was no longer relying on OTHER people's opinions of what was wrong with me. It's been 7 months now and no one had all the answers. I felt frustrated and I had resentment - a lot, towards the doctors who charged me a ton of money and still had no answers.

    So after months of testing, here's what I learned.

    1. You want to run the diagnostic tests ASAP to rule out any serious, life threatening issues. Having these tests done will also give you peace of mind. Seeing your CT Scan / X Rays of your spine / pelvic area will give you reassurance that there's nothing wrong with you structurally and it will help calm you down.

    2. The majority of chronic pain is partially physical, and partially mental, and partially due to neuro-connections in the brain. Everyone is different. It's possible tissue pain heals and the the neuro-connections for pain are still there. But, your body and mind are smart and it's not always misfiring.

    3. I found that trigger point therapy is not well understand by ANYONE. I was lucky enough to meet Tim Sawyer, the PT from A headache in the pelvic and also, someone who studied from Simons directly so he taught me a lot about referral TrP pain patterns .Without him, I would not have figured this out.

    4. The Mindbody work is really useful, but DO NOT do it dogmatically. One technique that worked for me was somatic tracking. You can find out how to do this on tmswiki.org. Basically you meditate and feel the pain, but you train yourself not to be scared by it.

    5. The breathing exercises, and the meditation to calm the mind is really important. Dr David wise talks about this in his book as the trinity - Trigger point work, stretching, and calming your nervous system. I didn't understand the important of the 3rd part until later - until you can stop the PERPETUTING factors of your pain, it will come back even if you clear the TrPs. Also, if you dont clear all the TrPs or only the secondary TrPs, the original TrPs will continue to perpetuate the secondary TrPs (See Simon and Travell book in link below)

    6. Dr. Dharma Singh Khalsa's book The Pain Cure provided additional context using medical meditation and also, using a holistic approach to pain. He talks about nutritional, physical, mental, and spiritual. I learned that b12, magnesium and turmeric supplements can help muscle recover and reduce pain.

    7. Pain Free Body - Egocues method - this gave me the framework for reworking my body. I found that I had mild curve in my spine, that could be corrected with proper, targeted stretching. I met the guy's instructor once at a Tony Robbins event and when I read his book, I understood the importance of this.

    8. Acupuncture, craniosacral therapy, electric stimulation, facial counterstrain did not work for me.

    9. Massage therapy was useful in reducing stress and resolving some TrPs I have trouble reaching.

    10. Drugs helped when I was in pain, Gabapentin, Hydrocodone, Valium suppositories. But, they are not reliable long term and you can develop dependency. Also, they mask the pain signals which give you hints as to the real problem / source. I had looked into homeopathic medicine but it's hard to find resources in the US compared to Europe. Chinese herbs and medicine helped a bit but my experiments were not conclusive.
    So, after about month 10, here's my daily schedule:

    1. Wake up - Do Egoscue stretches and medical meditation that reduces pain

    2. I do my normal work and I take my morning supplements. Magnesium, B12, multivitamin, Turmeric, Ginger. I juice and make sure I eat foods that are anti inflammatory and pain reducing.

    3. I go about my day

    4. Evening time - I run, stretch, and I do any TrP work that's needed. I check for TrPs at least once every 2 days using a TrP ball, a yoga mat, and just going through my whole body, especially the referred pain points in the Simons and Travell book for pelvic pain

    5. Baths really help calm me, sometimes I meditate in the bath and do my internal pelvic work there (you need a wand, and you need to be trained by a pelvic PT on how to do this) - this is really important if you have pelvic pain bc those muscle are hard to reach and you can injure yourself and your nerves if you're not careful. But once you know, it's super empowering when you know you can use it to reduce your pain

    6. I meditate at least once a day. Whenever I feel stressed, I go for a walking (walking meditation) or I lie in child's pose and breathe.
    A lot of times I was mislead by the following:

    - The mindbody doctor sent me on a path that it's all in my head. This was not useful

    - Only working on TrPs aggressively flared me up, without understanding how to calm my CNS, and how to relax

    - I didn't understand how my sitting posture and how my standing posture may be a perpetuating factor until I went to an egoscue center and good feedback on the exercises to correct my posture

    -I kept learning about TrPs. There was a TrP in my QL muscles I missed that was perpetuating the ab cramps and pelvic pain

    -Dr Wise thinks diet doesn't matter, but I felt that eating healthy made me feel better

    -Test and measure. Again, I believed the mind doctors that I shouldn't think about it, I think this is wrong. You should record your progress so you can track what works. You don't remember 3 months later what you did then that made something work. You just don't obsess over it. Over simplified answers like, "just dont think about it and be happy" is very dangerous when you're dealing with pelvic pain, IMHO.

    -Review your medical history - most doctors don't listen or don't give a F. I realized I had TrP issues 10 years ago - I was able to self treat. That meant my body was sensitive to muscle injuries. I had no issues of trauma or repressed emotions, even though the mind body doctors kept saying maybe it was hiding. I think at some point, you do your research and read the studies and you have to trust your instincts.

    It was when I combined therapies that worked for me, tested them, and optimized it, when things worked.

    Here are the resources and tools that helped me the most:

    Pelvic pain books: https://kit.co/Giovanniwan/books-for-understanding-and-relieving-pelvic-pain ({{SEO.ogTitle}})

    Trigger Point Tools: https://kit.co/Giovanniwan/self-physical-therapy-pain-relief-carpel-tunnel-pelvic-pain-back-pain ({{SEO.ogTitle}})

    Mindbody work (Free): https://www.tmswiki.org/forum/painrecovery/ (Pain Recovery Program)

    The book that saved me: Simon and Travell 3rd Edition https://amzn.to/3eEYDTY

    I've been getting a lot of DMs so let me clarify

    You should not listen to anyone but yourself. It's very rare that someone else has the exact same condition you do and all the doctors want to do is to treat you using THEIR Method.

    Even my advice could be wrong for you.

    If you plant in the winter, you will not harvest. Running east, no matter how hard you try won't get you to a sunset.

    So, it's important to develop a working hypothesis for yourself and then ask, "what can i DO to test to see if this is true or not?"

    If this is mind-body related - if I go on vacation, does the pain go away for a week?
    If this is TrP related, if I properly learn from an expert how to hit my TrPs for 2 weeks straight, can I measure my results?

    Am I flaring up bc I hit my TrPs too hard, or bc something else is causing it? What condition can I create to test this theory?

    I must have run over 100 tests over a year. There were times when I gave up and just took a break.

    But in the end, I always asked, "what can I do to find an answer. There must be an answer. I refuse to accept that I'll be like this forever"
    Ellen, westb and Balsa11 like this.
  2. Balsa11

    Balsa11 Well known member

    As long as you can see a relationship between mood and pain levels, you'll get the hang of it. The treatments only work if you're relaxed -> being relaxed and happy is the treatment.

    Ironically the trigger points in my back first needed to be massaged out and now they're mostly relaxed and only hurt when I touch on them! Sometimes we forget that a knot is just a spasm held for a long time and these things can pass on their own! They're sensitive areas but do de-sensitize over time. Sometimes the "trigger points" want to relax, breathe, and remain undisturbed:)
    Last edited: May 7, 2021
    Sita likes this.
  3. emporeon027

    emporeon027 Peer Supporter

    Maybe you are trying to much. dont ya think? Glad that worked for you, but only by reading your experience flare up a little my sypmtoms jajaja. The trick for me has been stop everything that means "tryng to heal" i`m not in the 100% better but, i felt the symptom inperactive ones a day, i any place of my body, any illness or even trigger points cant do that, some times the pain goes from my leg to my upper back, or arms. Like really Tp Cant not do this. Also tp are from knots in your mussles but are due to stress, not any longer positions or postures, the only idea of this its probably what dont let you reach the 100%. I spended so much time presurre them with balls works for a little a really little amount of time, of if it works for my upper back then all the pain goes to my legs like really?. Pain its not all in your head, but your head its what is triggering. also my posture its good, that was the first thing that i fixed when i was in so much pain two years ago, but never works for nothing besides looking better.
    Cece and Youness like this.
  4. angieszen

    angieszen New Member

    Thank you for sharing your experience. I really agree with you on the TMS therapists that say you can only think psychological not physical.

    I have had two TMS focused therapists and neither ended well. The last shamed me constantly when I would try to talk about my symptoms, the first one had a mental breakdown and ended my months of work with her via a text hours before an appointment.

    Neither of these women - both still working by the way - seemed to me a good advertisement for the all or nothing approach which they both used to cure their own TMS. In the end, the therapist that insisted there could be no thoughts about any of the pain being physical connected me with Dr. David Clark who wrote "They Can't Find Anything Wrong With Me". Dr. Clark told me he felt the physical had to be considered at the same time as the emotional and that you can't just focus on one. For me, that makes the most sense.

    I don’t want to get into a big debate about it here - everyone has to find their own way - but I do think it is worth stating that the dogmatic approach doesn’t work for all of us.

    I am in awe of those that say they just read Sarno’s book and a week later the pain was gone. That has not been my experience and having a therapist or other person tell me that is my fault - that I am just not trying hard enough - is not helping me get better. My brain has to make sense of what is happening for me to trust my approach to healing.

    You are right that everyone has to find their own way and for some that may be stopping everything and for others that may be fundamentally led by Sarno’s concepts but also incorporating other modalities.
    Balsa11 and Sita like this.
  5. balancedanswers

    balancedanswers Peer Supporter

    You must experiment with what works for you. The Mind body diagnosis is extremely inaccurate due to lack of ways to measure. People on this forum are super biased. I also met with some mind body doctors
    Dr Schubiner is great. I would strongly advise staying away from Dr David Schetcher.
  6. mbo

    mbo Well known member

  7. TG957

    TG957 Beloved Grand Eagle

    @balancedanswers , I volunteered to collect stories for the Thank you, Dr. Sarno! site. Dr. Sarno, unfortunately, passed away and will not see your post, but his family and many chronic pain sufferers would appreciate and benefit from reading your post. Would be great if you could PM me with the text (200-300 words) and photo (optional but desirable) and I will post it on the site. Thanks in advance!

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