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!
-Rebecca
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!
I 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.
All your sensations, whether they're perceived as pain or strange sensations are still TMS. I can well relate to what it feels to have that sensation of tightness or like a golf-ball stuck up there (I'm referring to the pelvic pain now), but this went away when I started to ignore it for real. I wasn't pretending anymore, I really meant business--which meant that I said to myself: "Ok, so there's the sensation. So what?" And then I got on with the rest of my day.
