Hey - Question - I was surfing FAcebook the other night and a “suggested post” came up about Curable - it’s an app that is supposed to help you work through chronic pain. Apparently it’s a neurobiological approach to teaching the brain how to handle pain and not make it as big of an issue.
As it is more and more ,looking like I’m going to be dealing with constant pain - or at least chronic pain - it seems attractive. Strictly the fact that it’s a monthly subscription rather than a “free” one speaks well for it to be something to take seriously.
P.S. Had another first today - since my treatment that screwed up my head, I have not spent more than 2 hours in the car at a time. We drove down to Cincinnati to bring my daughter to cardiac kids camp today. Spent almost 6 hours on the road - I’m down in the lobby of the hotel letting my brain settle down - but I made it. My wife drove for an hour in the middle so I could close my eyes and blocked all of the sound and visual out. We do it again tomorrow - so it will be interesting to see how day 2 goes. But I made it…
DISCLAIMER: you can ask anyone who even knows me slightly, I’m cheap. That being said…
The app sounds like a rip-off to me. Depending on how expensive it is and how hard it is to un-enroll from whatever you may enroll in.
I’ve had chronic pain for 30+ years (not AVM, chronic neurologically complicated migraines, trigeminal neuralgia - which is facial nerve damage - and lymph edema) and in my opinion you don’t need an app to help you work through it. My advice? Go to the library. There are tons of books on dealing with chronic pain. For FREE. If you would rather own a book to take notes in it or something look on amazon or barnes and noble then go to thriftbooks.com (did I mention I was cheap?) You can get 3/$10 with free shipping and so far every book I’ve considered has been available.
Another option to is check both your medical benefits and your employer employee mental health benefits. It’s fairly standard to have 6 free or low cost visits per year via either one of those channels and there are numerous mental health professions who specialize in chronic pain. I tend to think 6 50-minute hours one-on-one and face-to-face with someone would be much more beneficial than an app you have to pay for and self navigate.
I also tend to think the app is not going to much more than teaching you how to keep a pain journal and a way to do so on your phone. You can do the same thing in a notebook from the dollar store (again, cheap!). It may also include guided meditation, but you can get free apps for that with a little shopping around.
I can tell you (again, for FREE) the biggest secret to chronic pain management is to get on with your life. There have been numerous MRI-based studies that prove when you are distracted doing something that requires your attention the amount of space your brain allocated to dealing with pain actually reduces. The less you do to “keep busy” the more space pain takes up in your brain. They have MRI pictures to prove it, you can google it via chronic pain and MRI study for a wealth of info.
If they offer a free (again, FREE) trial, go for it, otherwise I would explore all those other cheap-or-free options before purchasing some sort of app that requires a subscription.
I like the more recent book “How to Live Well with Chronic Pain and Illness: A Mindful Guide” by Toni Bernhard. She also wrote “How to be Sick”
“The Chronic Illness Workbook” by Patricia A Fennell is another one that deals with general chronic conditions.
You may want to search for books specific to AVM. I know I found good info about both migraines and trigeminal neuralgia by putting in some research time. You’re going to also want to periodically re-research. When I first started with migraine 30 years ago there was very little info, then there was an explosion of research and treatments, so it’s always worth “checking in” so to speak and seeing what’s out there every so often. I actually found my best treatment for migraine by being in the human trials for the medication!