1. Alan has completed the new Pain Recovery Program. To read or share it, use this link: http://go.tmswiki.org/newprogram
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Pelvic Pain - Healed

Discussion in 'Success Stories Subforum' started by ezer, Jun 23, 2015.

  1. chriss03

    chriss03 New Member

    Hi Ezer
    Thank you for your inspiring posts. I have CPPS for about 9 years and after experience of Several symptoms, I suppose your cognition from CPPS,TMS and PNE ,... is correct.
    I have a question. Don't you think that some part of other therapies such as BTX Injection, physical therapies, .... you had was essential and complementary with TMS approach or Emotional work?
    I want to know that for TMS we should follow just emotional work approach or other therapies like BTX,PT, ... to be Considerred as complementary approach?
    Thank You in advance
    Last edited: Dec 28, 2018
  2. ezer

    ezer Well known member

    Whatever works. If some modalities help you then the more power to you.

    In my case, those therapies were useless (In addition I had a terrible allergic reaction to BTX). I did that stuff circa 2004 and stopped for lack of results.

    But in any case, there is simply no possible correlation between PT/BTX/nerve blocks etc. that I did between 2004-2006 and becoming asymptomatic in 2014 with TMS work.
    Last edited: Jan 1, 2019
  3. chriss03

    chriss03 New Member

    Thanks for your reply Ezer,
    I'm an engineer like you, and as project manager I see myself under tones of job pressure, and these pressures don't allow me to release myself from the types of job pressures. Most of the times tolerating of pressures is too hard for me and exacerbate the pains and other symptoms. On the other hand leaving job is fearing for me because I have to loose my situation and of course I need job income. As I read your posts it seems you had a similar situation and you also left your work too. My question is ;
    1- Do you think that job resigning is a key solution to release from the pressures or vice versa based on some ideas I should change my view points about the job chalenges?
    2- What's your recommendations or guides for me to manage the life and work stresses which made symptoms chronic?
    Thank You Engineer :)
    Last edited: Mar 20, 2019
  4. Syl

    Syl New Member

    Hey all,

    Just a quick post to see where everyone is at with their battle against their reptilian brain danceaI haven't posted since end of 2018 so to let you know, I've been basically working with neuroplasticity for my PN and my digestive issues (the IBS and chronic anxiety/panic attacks I can handle). But the PN symptoms have changed many times, so my brain's been playing games. The moment I lose fear of one type of flare-up scenario another variation comes up to throw a spanner in the works, and cause even more anxiety and fear.

    Since I was last on this forum, I've been in touch with Alan Gordon, Dr Howard Schubiner, Dr David Clarke, David Butler (co-writer of Explain Pain, with Professor Moseley) and I've also looked into the brain-map work of Michael Moskowitz. Every one I corresponded with (I even had a Skype session with Dr David Clarke!) has told me I have true TMS/MBS or PPD (I think PPD is the latest name these days? Psychophysiological Disorder). I liked Dr Schubiner's advise to me, which I will share with you here. He said:

    "You have TMS (he calls it MBS for Mind/Body Syndrome) and nothing more. You can get better, but you are trying much too hard. Here is the best advice I can give you; avoid the 5Fs:
    1. Do not fear pain
    2. Do not focus on pain
    3. Do not be frustrated by pain
    4. Do not fight pain
    5. Do not try to fix pain.

    When you completely avoid these, you will be better."

    Dr Schubiner also confirmed that LPR (laryngopharengal reflux or "silent reflux" as they call it) is MBS, and he said like other MBS conditions, including PN, fear of it will tend to make it worse, and that I'll develop new symptoms over time if I keep the fear going. He reminded me to stop fearing the symptoms, and in the case of LPR to start introducing more foods gradually. You see, I went on a strict low acid diet in early 2018 and lost around 12kg (28 pounds), which is quite a lot, plus I developed food intolerances to certain foods that I never had trouble with in the past. Dr Schubiner said developing food intolerances (not allergies, mind!) is TMS.

    So that's where I'm at right now, introducing new foods slowly to my diet and in the meantime still trying to disregard my new variations of PN flare-up symptoms. For some reason, however, the moment I lose my fear of one symptom, another one rears its ugly head (even with the LPR!). This PN business (and all TMS/MBS/PPD conditions) is like doing battle with the Hydra!

    I would love to hear of your progress, people!

    Greetings from the land Down Under wavea
    BloodMoon likes this.
  5. westb

    westb Well known member

    @Syl. Hi and thank you for this very comprehensive update. As someone whose symptoms are manifesting as IBS, I'm very interested in your report, and impressed by your diligence and dedication to your recovery. Thanks for updating us. I'm particularly struck by Dr Schubiner's advice to you and the 5Fs. Wow. I'm working on accepting the pain/symptoms but the fear and frustration in particular are still there - it's almost as if they've become part of my body's DNA. Not fighting and not trying to fix the pain/symptoms I'm seeing some progress. But it's good to have that checklist.

    I too have been dealing with food intolerances and am gradually re-introducing foods or trying new ones after being on a pretty limited diet. I also journal almost daily, something I've done since before the Mind/Body syndrome struck (actually I prefer this term to TMS, but that's just me), being a devotee of Julia Cameron's Artist's Way for a couple of decades. I'm trying to get back to proper living as opposed to existing with this horrible condition, but in a weird way I am optimistic - I've changed for the better in many ways through dealing with this, though sometimes I have to acknowledge the fact through gritted teeth. It's about accepting who I really am, warts and all, love and rage and anger and impatience and kindness, fear and faith, all combined. And above all about self care and acceptance of myself and others.

    All the very best to you. xx
    Lizzy likes this.
  6. Rbka

    Rbka New Member

    Hi Syl, what an interesting update!

    I have been pain-free I'd say 95-99% of the time since I discovered TMS and began my healing journey a few years ago. I can now always attribute my flare-ups to something (i.e. I can rationally say "Oh, there is a reason for this, I have pushed myself too hard again"), so I'm not just living in fear of seemingly random flares. I do use a CBD topical pain cream on my perineum when I have a flare up which I find helps (although possibly placebo), but I tend to use it only once or twice per month. I'm feeling so good! I bike, I hike, I jog, I do yoga, I climb, I chase after my toddler and 2 dogs, I sit for many hours as required, etc.

    My sense is that it sounds as though you are far too academic about this. You seem to be too much "in your own head", intellectualizing about everything. You clearly understand the theory in great detail and could probably teach a whole university level course on it :) , but you are unable to allow yourself to enter that truly relaxed state and be present in the moment. Rewiring your brain to live in this peaceful, present state *in the moment* is the key. To accept, to be present with, to let go. Knowing what it is and the theory behind how to achieve it is not the same as actually entering it. I know this is much much much easier said than done, I used to catastrophize about everything. The number of times I went to the hospital for something that ended up being nothing is frankly just crazy to me now!

    Are you engaging in a regular meditation practice? I highly recommend meditating daily, at least 2 times if possible. I often use tracks from a CD called "Unplug" by Sharon Salzberg, she has written many books and is highly regarded as an expert in the field of "lovingkindness" or "self-compassion" meditation (which is a type of meditation that actually has been used in clinical trials for pain and anxiety issues). Some people also respond very well to doing Vipassana style meditation which is taught in courses all over the world (the courses are free for newcomers - you "pay it forward" by donating after the course if you are able to).

    Another book that I have found more recently that has really helped me understand the role that our technology plays in our societal brain issues is Digital Minimalism by Cal Newport. I find that the less browsing I do (facebook, instagram, youtube, forums...), the better I feel.

    Hope this helps! All the best for your recovery!
  7. Syl

    Syl New Member

    Hello @westb

    You're right in saying that "fear" becomes a part of your DNA, as it were. In fact, @Alan Gordon LCSW says in the TMS program that fear becomes its own neural pathway in the brain! So not only does our brain create brain-maps for the chronic pain and other MBS conditions, but it also wires itself with brain-maps for fear, anxiety, etc. I know this for a fact because sometimes I feel anxious or get a panic attack for no reason whatsoever. With my long history of chronic anxiety I've always been able to identify what set off a panic attack in me, but lately they seem to just come whenever, and for no reason! I now know this, however, and I tell Lizard (that's what I call my brain) to delete it (or shut it off). Yes, I talk to Lizard all the time. I know it sounds crazy, but this works for me about 80% of the time.

    When I read about food intolerance being an MBS I knew this was spot on. When I first started on the low acid diet, it seemed I couldn't tolerate simple things like grilled chicken, eggs, and other bland foods that were NOT acidic! No wonder I lost so much weight. Then I'd go running to the doctor and he'd say there was nothing wrong with me; it's just IBS--and he could hear my intestines rumbling inside and the intestinal dismotility, which feels like this horrible pressure bloating (as if someone is blowing up a tyre inside you). There's no distension on the outside, it's like you have an alien inside, just like in the film "Alien". Yuuuuhhhhhhh! But as soon as he'd reassure me that there was nothing wrong with me, I was able to go home and eat a chicken sandwich without any side-effects. How's that for the power of the mind?

    So now I'm experimenting with all sorts of foods, gently and slowly. I eat chocolate, and I never go without my coffee! I try different foods and see how I feel, but before I eat anything that I'm wary of I tell Lizard not to get its "knickers in a knot". One must never eat when feeling fear because that's a sure way to fail, and make one feel sick. By the way, watermelon, which is considered a high FODMAP food for IBS sufferers is something that I've always been able to eat without any problem. In fact, a lot of what I eat is high FODMAP and it never affects me, so this debunks the low FODMAP diet for me. I really believe Dr Schubiner is correct when he says food intolerance is MBS--I figure if you believe that something's going to make you sick, it will. The only thing I did do, however, was to check for Celiac (Coeliac in Aussie spelling) disease, and I don't have this, thank goodness, because I live off carbs. I love them and always will. I eat the healthy carbs, though, and not rubbish.

    Good luck in your journey toward health. I am sure you will get there. We are all on our own journey and we have to do what seems right to each of us. I am of the opinion that what works for one person may not necessarily work for another; therefore, we must travel on our own road to discovery and health as if we were pioneer explorers going into virgin territory!
    westb likes this.
  8. Syl

    Syl New Member

    Hello @Rbka

    It sounds like you've made wonderful progress. There was a time when I lost all my fear of PN and I was actually feeling better for a while, that is until I started to get new symptom variations in my flare-ups, and all the fear came back. At the same time, I also had to deal with everyday life: financial issues, isolation, other stressful problems, including trauma, plus the emergence of silent reflux (another TMS condition as it turns out) and the re-emergence of IBS.

    I live alone (with a naughty kitty for company) and it's been a rough journey for me so far. In summary, the PN developed shortly after my mother passed away (I was very close to her); then my now ex-husband left me (when I got sick with the PN, that is). As a result, I lost my home and a lot of my own money, and I came away with very little except pain and more pain plus fear and anxiety. Not having any other family, except a brother with a very domineering wife, I didn't have too much support from that quarter, and many people who I regarded as friends disappeared from my life too. So I've been living with this whole thing on my own and trying to keep it together. I was working for a while, but eventually that role became redundant, back in 2015, and since then I've struggled to find new work that would at the same time enable me to fit in the physical limitations of working with PN.

    I've always relied on my own research skills regarding health conditions. This is both good and bad. Sure, it can put all sorts of ideas in your head, but the good side is that I managed to diagnose everything I have, including the PN, without going for invasive tests or seeing ten different doctors with ten different opinions. I believe this gave me some measure of control in my life.

    Meditation is something I tried many times, and in many guises, over the years (even before the PN thing), but it doesn't seem to work for me whereas focus works better, and so I have been focusing on the present a lot more (without the catastrophising), plus I am able to recognise thoughts and emotions for what they are--triggers for PN flare-ups (or I should say for any flare-up, even IBS). I discovered there is no such thing as physical triggers in PN; they are all emotional (at least in my case), and this is what Dr Sarno and others have been telling us for years.

    I used to fall into the trap of thinking that because I vacuumed, or went up the stairs while carrying two shopping bags, or sat in a certain way, etc, etc, this was the trigger for my flare-up, but it was never then case. It took me years to start noticing the emotions prior to a flare-up, and sure enough this is what led to the flare-up in the first place. I mean, how else could I explain that sometimes I vacuumed and DID NOT flare up, and I could sit for hours at the computer and I'd be fine, or sit on chairs without my special cushion, or go for long drives when at other times I could only handle 5 minutes and then I'd flare up, etc. It just didn't seem to correlate with my flare ups. But emotional upheaval seemed to fit the bill all the time (without fail), and this could be fear, anxiety, anger, frustration, problems with my brother (this one's a biggie for me), financial problems, etc, etc; all these things consistently flared me up. And to top it off there are memories from the past and trauma that sometimes rise to the surface and generate emotions of sadness, regret, love, hate, etc, etc; and these, too, have the power to flare me up.

    So this is the reason I work with two things now: the brain-maps (in order to rewire the brain) and catching the emotions/feelings. By "catching" I don't mean I have to dwell on them; it's more noticing that an emotion or feeling has come up, merely observing it without judgement, and letting it go. This is very much what Eckhart Tolle teaches, and I find this works for me better than meditation. Being in the moment is something else I practise a lot more of these days. I am in the moment with nature, when I play the piano, when I write fiction, when I get to spend time with my niece, when I have coffee with a friend, etc, etc. All the "strategies" I have in place in order to "stay in the moment" take time to nurture, I guess. I've read the success stories of how some achieve recovery quicker than others, but at the end of the day everyone is different as we've all suffered different traumas, experiences, and what makes us what we are today, etc.

    Stay well. It sounds like you've done great!
    Rbka and westb like this.
  9. BloodMoon

    BloodMoon Well known member

    Many thanks for posting this, Syl. I've put it on post it notes at strategic places around my house for me to read and remind myself. I like the way it sums it all up in a nutshell - excellent! :)
  10. Syl

    Syl New Member

    Hi @BloodMoon, I'm glad this helps. I posted it on my fridge and by my computer so I can see it all the time and remind myself that I mustn't give up!
    BloodMoon likes this.

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