Amy! Reading your newsletter never fails to a) leave me feeling comforted and less alone with the ebbs & flows of long-term illness and/or b) put a name to a thing I’ve experienced but didn’t know there was a name for. Yesterday it was both. Peripheral neuropathy, huh? Finally a word for those sensations — which used to make me panic, but like you I’ve learned to take a step back and simply observe what’s happening in my body and what information it might be communicating about what it needs. Thank you as ever for another thoughtful, encouraging and resource-rich post. I look forward to trying that app, it looks really helpful.
Also, I know exactly what you mean about wearables!! But I recently started using the Oura ring and so far (4 weeks in) it’s been completely different to all the others (even, counterintuitively, Visible) in its emphasis on rest and finding a balance between physiological stressors & recovery time. There’s even a ‘rest mode’ which I activate whenever my symptoms are flaring, or if I’ve being doing more than usual. It’s NOT cheap and it’s still early days for me so will let you know if my assessment of it changes, but so far I’ve been pretty impressed by the app’s ability to meet me where *I’m* at rather than wherever it thinks I should be (10,000 steps, less exertion zone alerts etc) in non-judgmental and gently encouraging language.
And I’m so pleased to hear your migraines have been affecting you less — that must be a huge relief.
Marion! Thank you for your kind words of support. I’m so glad to be of some help and/or comfort.
I’ve always been curious about the Oura ring! Thanks for sharing that info with me. For now I think I’ll save the money. My sleep is mostly pretty good and when it’s not, it’s easy to blame perimenopausal hot flashes! Lol. I’d love to hear whether it keeps working well for you over time. Thanks again!
Great input for things like RSD(reflex sympathetic dystrophy) / CRPS (complex regional pain syndrome.)
Another truly awesome book you might enjoy is “Outsmart your pain” by Christian’s Wolf MD. Here’s a link to a great interview Dan Harris did with Dr. Wolf
You are a GEM of a resource Amy! And the Pain Reprocessing book, while I haven’t read it, sounds so in alignment with how I was able to reenter the world, even while still experiencing the same symptoms that once upon a time took me to the emergency room. I truly believe “indifferent calm” is possible, and once our brain understands we’re not “freaking out over here” then it decides to stop freaking out too. It’s miraculous but also, as it sounds from this book, very scientific and measurable. So cool.
And thank you for the generous shout-outs! It’s such a joy to be connected with you and your brilliant, lovely self!
Yes! The book is like what Dan talks about; the only big difference is that Dan poo poos somatic tracking and Gordon embraces it. Sometimes I think Dan doesn’t realize that he’s more aligned with brain training and mindfulness folks than he’d like to think 🤭.
Thanks for everything you do, Kim. It is indeed so great to be in each other’s orbits!
New to substack, trigeminal neuralgia pain, a gift from LC, makes looking at screens a huge pain trigger (5 yrs of no tv, probably a hidden blessing but I do wanna see Loki. Bad). I digress, your column makes that pain worth it OR lessen yay! And basically just throwing a giant motherfucking grab bag of dare I say positive emotions & thoughts & motivations your way after having the worst pain ever last nite & NO pain so far this morning getting lost in your column lying in bed on my phone. Ah the mysteries of LC, TN, PEM, life & being human. Or alive. GRATEFUL my therapist gave me that book & PCP recommended it too last year & I have yet to read. That will change today. Thanx for the ass kick & all the helpful details XO
Isn’t the brain FASCINATING, Beth Ann?! I have had many similar experiences where something I read or hear has an almost immediate effect on symptoms. It’s so trippy. Really glad you’re here. Thanks for the kind words; it helps keep me going with this newsletter 💛.
Would also love to hear what you think of the book during or after reading it, so stay in touch if you remember!
Thanks for the post Amy - I am a bit late in reading this one. I am going to share the information about the curable app with a friend who suffers from chronic pain due to an auto accident. Looking forward to your next post when you return!
Hi! Anyone here suffering from neurological issues? Would love to connect. Spent the last 5 months at neurologists, MRI brain scans, lumbar punctures and nerves tests. Still suffering from muscle twitches/fasciculation, electricity feeling in my legs and hands, vibrations, “ants”, feet burning etc. Polyneuropathy confirmed and awaiting genetic results from doctors not accepting long covid. Thanks!
Hi Mags - I’ve had all of those symptoms at one time or another during my five years of long COVID and have had all the same tests except for lumbar puncture. Three MRI scans, EMG, and two separate skin biopsies for small fiber neuropathy.
Early on (2020), the first MRI I got showed a white matter brain lesion on my corpus callosum. It wasn’t there on an MRI from 2018. It was still there in 2021. At my 2023 MRI, it showed that it was dissipating. This roughly coincided with when my off the charts, three years of muscle twitches/fasciculations quieted down a lot. My neuropathy (mostly in my arms, though sometimes in my legs, neck, and face) comes and goes but as I wrote in this post, it is the biggest/loudest warning sign that I am overdoing things. It goes hand in hand with my fatigue levels, usually.
I was put on venlafaxine for the neuropathy, which only helped a little so eventually I went off of it. I was able to try two rounds of IVIG before realizing even the copays alone would bankrupt me. Other than that, I have stopped chasing down doctors and tests because they have nothing new to tell me or ways to help. My neurological symptoms have quieted down a lot since I took my focus off of them (not suggesting you should do this, especially if you feel there are answers coming).
I didn’t know there was a book to go with the curable app, it looks like it would’ve been my kind of read! Same with the app but I was well on my way by the time I heard of it.
I think I’ve ended up doing a similar thing through reading the power of now and the power is within you then combining the pain body/pain communicating sections of those books with learning to befriend severe pain/disabling symptoms.
Meditations I found to accompany it were a chronic pain meditation and inner child (self love), both free off YouTube and very deep and powerful practices - imbedding the teachings in the books.
Affirmations that helped on the onset of attack were “I surrender to come what may. I’ve done enough”
A combination of all these practices (alongside all the others I was doing and the emotional regulation etc) significantly reduced severity, frequency and duration (over time).
To the extent I only live with mild to moderate pain and few symptoms now🙏
I did see a curable app exercise to do on their insta page the other year that I turned into a blog. I went on to be able to function through attack (for the first time in my adult life) after writing in detail my goodbyes to pain and all I’d done to get to that point:
I’ve thought of you a lot Amber as I’ve used these techniques to work on my migraines. It’s been so interesting to do somatic tracking when I have one and then observe from a distance how the pain changes or moves even during a 10-minute sit. That’s another sign of it being neuroplastic pain.
The surrender you mention is key too. I did that the other day and before I knew it, I had distracted myself with other things and the headache left me.
Amy, thank you so much for sharing On the Mend, and for yet another super in-depth and helpful edition. The Way Out is an absolute favourite of mine, and was really one of the 'lightbulb moments' that convinced my very scientific and anti-fluffy-nonsense brain that this PRT really had scientific backing. And a thank you back to yourself for all the time and energy you put into these editions - I hope we can meet face to face on a share your wins call soon!
You bet, Harry; I hope more folks sign up for OtM as a result. I want to join one of your calls, but the time conflicts with my Wednesday spoonie yoga class that I pay for. Maybe one day the timing will work out! 🤞🏻
The Pain Reprocessing Therapy sounds interesting, however it does concern me that literally everything written about it refers to that one study with 151 participants. Obviously they may be doing more research, and I truly hope they are, but usually it takes more than one small study to convince me it isn't snake oil (unfortunately the majority of 'cures' and 'wellness therapies' are designed to prey on vulnerable, desperate people who are tired of being in pain. Again, I'm not saying PRT isn't useful, or isn't legit, only that after over a decade of hearing about new therapies, history shows that you need more than one small study to prove you deserve my very precious time, energy, and money.
If you know of any other research and studies they've done on PRT, I would love to read them.
I understand that there are ‘snake oil’ treatments out there. I had chronic migraines for many years, so this is not my first rodeo with trying various things that claim to work. I’m only sharing what has been helping me. I have been careful not to claim any of the things shared in my Recovery Tools series as curative, just that I’ve taken some part of what it offered and applied it to my own situation.
Lastly, we often don’t think of medications and supplements prescribed by doctors as falling in the ‘snake oil’ category, but what about when you spend years of your life and thousands of dollars trying them all and none of them move the needle? Since there are currently no proven treatments of any kind, and we patients are left to do our own homework on what we might be comfortable trying, I think deciding to give a chance to a low stakes or relatively low cost program or technique is not a wrong move. Especially if there have been many documented success stories. Check out Raelan Agle’s or Dan Buglio’s YouTube channels for an abundance of these.
A healthy dose of skepticism never hurts in my opinion, as long as one can also keep open to hope and possibility too. Once I started to get more balance there, I began to enjoy life more…and improvements started to come (albeit slowly, but I’m okay with that).
Thank you for your thoughtful response. And I completely agree with you on prescribed medication and 'therapies' (especially as, until recently, the UK recommend GET for people with M.E/C.F.S despite a lot of proof that it causes more harm than good, and unfortunately this is still used around the world as guidance).
I guess it's hard for me to keep hope after over a decade of trying almost anything. Unfortunately, even if something is low cost, it does have a mental and emotional cost (and more often than not it's had a negative impact on my physical or mental health), and this is why I rarely try new things unless I have decent data to back it up, and that includes anything a doctor or medical provider suggests (as they usually don't have the knowledge on my disability and my body that I have). I honestly wasn't trying to discourage you, or anyone, only suggest going into anything with managed expectations. But perhaps I have become cynical and closed off due to my experience, and that is definitely something I want to work on.
Sending you a virtual hug, Tamara. It must be so disheartening to feel you have tried to have hope over and over and over again, only to have symptoms stay where they are. I totally agree that it’s critical to manage expectations throughout the chronic illness experience. I took great pains in my first Recovery Tools post to lay out all of the disclaimers and truths I could about what “recovery” means and why my sharing tools should be held lightly and not as the word of goddess. Every time I put up one of these posts, I refer back to that section in part one (rather than repeating it in full each time), but spoons being what they are, folks may not always be able to go back and have a read. I do very much appreciate your comments and insights; thank you for taking the time to read my post and share your thoughts and experiences.
Amy, I always learn 17 new things from your posts. The book sounds intriguing - will pick it up. And so glad to hear that there is such a great community for long haulers. (Finally, the mom-mom-mom-mom clip — ha!) Thanks for creating this mix of enormously helpful resources sprinkled with grins.
Amy! Reading your newsletter never fails to a) leave me feeling comforted and less alone with the ebbs & flows of long-term illness and/or b) put a name to a thing I’ve experienced but didn’t know there was a name for. Yesterday it was both. Peripheral neuropathy, huh? Finally a word for those sensations — which used to make me panic, but like you I’ve learned to take a step back and simply observe what’s happening in my body and what information it might be communicating about what it needs. Thank you as ever for another thoughtful, encouraging and resource-rich post. I look forward to trying that app, it looks really helpful.
Also, I know exactly what you mean about wearables!! But I recently started using the Oura ring and so far (4 weeks in) it’s been completely different to all the others (even, counterintuitively, Visible) in its emphasis on rest and finding a balance between physiological stressors & recovery time. There’s even a ‘rest mode’ which I activate whenever my symptoms are flaring, or if I’ve being doing more than usual. It’s NOT cheap and it’s still early days for me so will let you know if my assessment of it changes, but so far I’ve been pretty impressed by the app’s ability to meet me where *I’m* at rather than wherever it thinks I should be (10,000 steps, less exertion zone alerts etc) in non-judgmental and gently encouraging language.
And I’m so pleased to hear your migraines have been affecting you less — that must be a huge relief.
Marion! Thank you for your kind words of support. I’m so glad to be of some help and/or comfort.
I’ve always been curious about the Oura ring! Thanks for sharing that info with me. For now I think I’ll save the money. My sleep is mostly pretty good and when it’s not, it’s easy to blame perimenopausal hot flashes! Lol. I’d love to hear whether it keeps working well for you over time. Thanks again!
Thanks for another round up of info and resources, and for sharing the piece from TIME! I hope it’s helpful anyone experiencing medical gaslighting!
Great input for things like RSD(reflex sympathetic dystrophy) / CRPS (complex regional pain syndrome.)
Another truly awesome book you might enjoy is “Outsmart your pain” by Christian’s Wolf MD. Here’s a link to a great interview Dan Harris did with Dr. Wolf
https://podcasts.apple.com/us/podcast/10-happier-with-dan-harris/id1087147821?i=1000536756393
Ooh, thank you for this, Teyani. I’ve bookmarked it so I can listen soon.
You are a GEM of a resource Amy! And the Pain Reprocessing book, while I haven’t read it, sounds so in alignment with how I was able to reenter the world, even while still experiencing the same symptoms that once upon a time took me to the emergency room. I truly believe “indifferent calm” is possible, and once our brain understands we’re not “freaking out over here” then it decides to stop freaking out too. It’s miraculous but also, as it sounds from this book, very scientific and measurable. So cool.
And thank you for the generous shout-outs! It’s such a joy to be connected with you and your brilliant, lovely self!
Yes! The book is like what Dan talks about; the only big difference is that Dan poo poos somatic tracking and Gordon embraces it. Sometimes I think Dan doesn’t realize that he’s more aligned with brain training and mindfulness folks than he’d like to think 🤭.
Thanks for everything you do, Kim. It is indeed so great to be in each other’s orbits!
New to substack, trigeminal neuralgia pain, a gift from LC, makes looking at screens a huge pain trigger (5 yrs of no tv, probably a hidden blessing but I do wanna see Loki. Bad). I digress, your column makes that pain worth it OR lessen yay! And basically just throwing a giant motherfucking grab bag of dare I say positive emotions & thoughts & motivations your way after having the worst pain ever last nite & NO pain so far this morning getting lost in your column lying in bed on my phone. Ah the mysteries of LC, TN, PEM, life & being human. Or alive. GRATEFUL my therapist gave me that book & PCP recommended it too last year & I have yet to read. That will change today. Thanx for the ass kick & all the helpful details XO
Isn’t the brain FASCINATING, Beth Ann?! I have had many similar experiences where something I read or hear has an almost immediate effect on symptoms. It’s so trippy. Really glad you’re here. Thanks for the kind words; it helps keep me going with this newsletter 💛.
Would also love to hear what you think of the book during or after reading it, so stay in touch if you remember!
Thanks for the post Amy - I am a bit late in reading this one. I am going to share the information about the curable app with a friend who suffers from chronic pain due to an auto accident. Looking forward to your next post when you return!
There’s never such a thing as late around here! I appreciate you reading anytime 🫶🏻
Thank you for all the fascinating links! 😍
You bet, thanks for passing through 🫶🏻
Hi! Anyone here suffering from neurological issues? Would love to connect. Spent the last 5 months at neurologists, MRI brain scans, lumbar punctures and nerves tests. Still suffering from muscle twitches/fasciculation, electricity feeling in my legs and hands, vibrations, “ants”, feet burning etc. Polyneuropathy confirmed and awaiting genetic results from doctors not accepting long covid. Thanks!
Hi Mags - I’ve had all of those symptoms at one time or another during my five years of long COVID and have had all the same tests except for lumbar puncture. Three MRI scans, EMG, and two separate skin biopsies for small fiber neuropathy.
Early on (2020), the first MRI I got showed a white matter brain lesion on my corpus callosum. It wasn’t there on an MRI from 2018. It was still there in 2021. At my 2023 MRI, it showed that it was dissipating. This roughly coincided with when my off the charts, three years of muscle twitches/fasciculations quieted down a lot. My neuropathy (mostly in my arms, though sometimes in my legs, neck, and face) comes and goes but as I wrote in this post, it is the biggest/loudest warning sign that I am overdoing things. It goes hand in hand with my fatigue levels, usually.
I was put on venlafaxine for the neuropathy, which only helped a little so eventually I went off of it. I was able to try two rounds of IVIG before realizing even the copays alone would bankrupt me. Other than that, I have stopped chasing down doctors and tests because they have nothing new to tell me or ways to help. My neurological symptoms have quieted down a lot since I took my focus off of them (not suggesting you should do this, especially if you feel there are answers coming).
I didn’t know there was a book to go with the curable app, it looks like it would’ve been my kind of read! Same with the app but I was well on my way by the time I heard of it.
I think I’ve ended up doing a similar thing through reading the power of now and the power is within you then combining the pain body/pain communicating sections of those books with learning to befriend severe pain/disabling symptoms.
Meditations I found to accompany it were a chronic pain meditation and inner child (self love), both free off YouTube and very deep and powerful practices - imbedding the teachings in the books.
Affirmations that helped on the onset of attack were “I surrender to come what may. I’ve done enough”
A combination of all these practices (alongside all the others I was doing and the emotional regulation etc) significantly reduced severity, frequency and duration (over time).
To the extent I only live with mild to moderate pain and few symptoms now🙏
I did see a curable app exercise to do on their insta page the other year that I turned into a blog. I went on to be able to function through attack (for the first time in my adult life) after writing in detail my goodbyes to pain and all I’d done to get to that point:
https://warriorwithin.substack.com/p/a-break-up-letter-to-pain
I’ve thought of you a lot Amber as I’ve used these techniques to work on my migraines. It’s been so interesting to do somatic tracking when I have one and then observe from a distance how the pain changes or moves even during a 10-minute sit. That’s another sign of it being neuroplastic pain.
The surrender you mention is key too. I did that the other day and before I knew it, I had distracted myself with other things and the headache left me.
Amy, thank you so much for sharing On the Mend, and for yet another super in-depth and helpful edition. The Way Out is an absolute favourite of mine, and was really one of the 'lightbulb moments' that convinced my very scientific and anti-fluffy-nonsense brain that this PRT really had scientific backing. And a thank you back to yourself for all the time and energy you put into these editions - I hope we can meet face to face on a share your wins call soon!
You bet, Harry; I hope more folks sign up for OtM as a result. I want to join one of your calls, but the time conflicts with my Wednesday spoonie yoga class that I pay for. Maybe one day the timing will work out! 🤞🏻
The Pain Reprocessing Therapy sounds interesting, however it does concern me that literally everything written about it refers to that one study with 151 participants. Obviously they may be doing more research, and I truly hope they are, but usually it takes more than one small study to convince me it isn't snake oil (unfortunately the majority of 'cures' and 'wellness therapies' are designed to prey on vulnerable, desperate people who are tired of being in pain. Again, I'm not saying PRT isn't useful, or isn't legit, only that after over a decade of hearing about new therapies, history shows that you need more than one small study to prove you deserve my very precious time, energy, and money.
If you know of any other research and studies they've done on PRT, I would love to read them.
I hear you on the evidence. It looks like they’re recruiting for a new study now that is focused solely on back pain: https://redcap.ucdenver.edu/surveys/?s=ET8XXTN99DDDYXHX
I understand that there are ‘snake oil’ treatments out there. I had chronic migraines for many years, so this is not my first rodeo with trying various things that claim to work. I’m only sharing what has been helping me. I have been careful not to claim any of the things shared in my Recovery Tools series as curative, just that I’ve taken some part of what it offered and applied it to my own situation.
Lastly, we often don’t think of medications and supplements prescribed by doctors as falling in the ‘snake oil’ category, but what about when you spend years of your life and thousands of dollars trying them all and none of them move the needle? Since there are currently no proven treatments of any kind, and we patients are left to do our own homework on what we might be comfortable trying, I think deciding to give a chance to a low stakes or relatively low cost program or technique is not a wrong move. Especially if there have been many documented success stories. Check out Raelan Agle’s or Dan Buglio’s YouTube channels for an abundance of these.
A healthy dose of skepticism never hurts in my opinion, as long as one can also keep open to hope and possibility too. Once I started to get more balance there, I began to enjoy life more…and improvements started to come (albeit slowly, but I’m okay with that).
Thank you for your thoughtful response. And I completely agree with you on prescribed medication and 'therapies' (especially as, until recently, the UK recommend GET for people with M.E/C.F.S despite a lot of proof that it causes more harm than good, and unfortunately this is still used around the world as guidance).
I guess it's hard for me to keep hope after over a decade of trying almost anything. Unfortunately, even if something is low cost, it does have a mental and emotional cost (and more often than not it's had a negative impact on my physical or mental health), and this is why I rarely try new things unless I have decent data to back it up, and that includes anything a doctor or medical provider suggests (as they usually don't have the knowledge on my disability and my body that I have). I honestly wasn't trying to discourage you, or anyone, only suggest going into anything with managed expectations. But perhaps I have become cynical and closed off due to my experience, and that is definitely something I want to work on.
Sending you a virtual hug, Tamara. It must be so disheartening to feel you have tried to have hope over and over and over again, only to have symptoms stay where they are. I totally agree that it’s critical to manage expectations throughout the chronic illness experience. I took great pains in my first Recovery Tools post to lay out all of the disclaimers and truths I could about what “recovery” means and why my sharing tools should be held lightly and not as the word of goddess. Every time I put up one of these posts, I refer back to that section in part one (rather than repeating it in full each time), but spoons being what they are, folks may not always be able to go back and have a read. I do very much appreciate your comments and insights; thank you for taking the time to read my post and share your thoughts and experiences.
Amy, I always learn 17 new things from your posts. The book sounds intriguing - will pick it up. And so glad to hear that there is such a great community for long haulers. (Finally, the mom-mom-mom-mom clip — ha!) Thanks for creating this mix of enormously helpful resources sprinkled with grins.
Thank you so much for getting back to me. Seems like we have gone through a similar path. I’ve sent you PM to connect