There is a smell that I've only ever encountered while hiking, and I don't actually know what it is. I've never had a bad or traumatic experience while hiking.
I was listening to some unrelated talk about scents and how they can bypass a lot of higher level cognitive functions.
I'm wondering if using the memory of a smell could be helpful for grounding?
I understand this approach doesn't work for everyone and I'm not advocating that everyone do it
For those who do find this approach helpful, can you recommend specific recommendations for guided meditations and talks on befriending chronic pain? With and without a Buddhist background?
Here are a few I have found helpful, but not quite specific to chronic pain. They all happen to be Buddhist in nature (probably due to the youtube algo when I was searching), but I'm open to any recommendations:
https://www.youtube.com/watch?v=mEf_pj4PNfg
I'm looking for other recommendations for specific guided meditations or talks (not just names of people) that may be helpful for either trauma or pain or ideally both.
Here's a short list of stuff I've found helpful:
I've sorted through a lot of guided meditations and so far this one has been the most reliably helpful for trauma, but not as much for combined physical and emotional pain: https://www.youtube.com/watch?v=xlyuGSwaZQ8
This one is pretty decent for pain and feels "close" to the experience of it: https://youtu.be/sIy-fB-eqR4 but is definitely more overtly Buddhist-oriented than Tara's above.
Something I've noticed is that more Buddhist resources can be helpful at a higher level (https://www.youtube.com/watch?v=GL7WpaSllC4), or for practical meditation advice (e.g. https://www.youtube.com/watch?v=reZGFJJKnnU), but it feels like they are not as "close" to trauma and pain, I presume because their goal is mostly to teach Buddhism, and also because Buddhism is not therapy.
Here is an example of some that sound theoretically good for pain, but feel a bit "detached" from the experience of it. I'm not sure if this is because they didn't experience it, or if that's just how it comes across once a certain level of skill is attained:
https://www.youtube.com/watch?v=4cBt0ILsyvM
https://www.youtube.com/watch?v=AWTDQwlPqlA
https://www.youtube.com/watch?v=MlLvjFPtFXw
Not as recommendations but just to give you an idea of resources I've found an affinity for: Tara Brach, Yongey Mingyur Rinpoche, Rebecca Li, Guo Gu, Guo Huei, Sheng Yen, Thich Nhat Hanh
I started wondering, if the body is in a lot of discomfort and this (speculating wildly here) means that it doesn't "feel safe", does this mean that introducing new foods during this time is more likely to cause a bad reaction?
And inversely, would low symptom periods be the best time to introduce small amounts of new foods?
Even if I've listed an author, please recommend other specific stuff by them you found helpful.
I can't figure out if I have trouble resonating with some resources because of 'internal resistance' that is common with trauma, or if cultural factors are also playing a role. For some Asian cultures the notion of talk therapy can feel awkward, and while this isn't the case for me (except with certain therapy styles), I can see some parallels to guided meditation for me. Some of them can feel awkward, or maybe 'fake nice'? And I often have a lot of trouble imagining a loving parent.
On the other hand, more religious oriented practices like Buddhism (especially Chan Buddhism) and Daoism can feel rather 'cold' or indifferent, or simply not specific to trauma and chronic illness.
I liked TNH's Calm - Ease https://plumvillage.app/calm-and-ease-one-of-the-most-liked-guided-meditations-on-the-app/ , though sometimes I find myself looking for something warmer. His talks are probably great for learning Buddhism, but difficult for me to follow right now.
I liked this one from Tara Brach https://www.youtube.com/watch?v=xlyuGSwaZQ8 but had difficulty with some others where she asks you to imagine a loving parent. She offers alternatives but that first suggestion puts me on guard. For some reason I really can't watch her in video form lol. I don't know why. Her facial expressions feel incongruent with the messaging somehow.
Thanissaro Bhikkhu's talks on pain have been helpful: https://www.youtube.com/watch?v=z-tYn6DVtHQ
Yongey Mingyur Rinpoche has some good short talks, and his guided meditations are more like talks. He has a nice warmth.
I have a difficult time listening to Kristin Neff's interviews and talks, but some of her guided meditations can be OK: https://www.youtube.com/watch?v=t24v0CtNSkA
Sharon Salzberg has some nice concise talks, but doesn't seem quite as warm.
Ajahn Brahm has some good highlight clips, especially from Q&As. His talks are quite long, and sometimes feel like they lack a little substance.
I'm Chinese American and I have severe chronic illness (MECFS, similar to long COVID; I am partly bedbound and mostly housebound) and a long history of trauma from my parents. I am looking for lower exertion resources to supplement therapy, etc.
I am having a hard time finding resources I resonate with. I'm not sure if there is a cultural factor here e.g. what works for White American audiences may not work for Asians, or if it's simply self-sabotage.
If I have linked an author, feel free to add more resources from the same author that resonated with you.
I have a really hard time with having compassion and love for myself. A lot of the resources I've looked up feel "cheesy" for lack of a better word, and generate feelings of internal resistance. I have an especially hard time with instructions that involve imagining someone I know that is kind and caring, usually it asks you to imagine a parent or something. It feels like a combination of not having parents I feel that way about, and also just some difficulty in general imagining people in my mind maybe? I usually revert to imagining Guanyin.
This would be an example of something that for many people is probably great and helpful, but the instructions to imagine my parents are difficult for me: https://youtu.be/_vT6yZe-vJQ?t=172
I did for a time manage to just arbitrarily smile at myself in the mirror, which helped, but I haven't been able to keep it up.
I had a sitting meditation practice which I have had real difficulty returning to recently due to severe depression.
I found Thich Naht Hanh's Calm - Ease meditation to be helpful. I like how it is concise with words, but guides me through different types of experiences. His talks are somewhat difficult for me; I don't doubt they are good, but they seem to be geared more towards directly teaching Buddhism (which makes sense) versus more immediately practical stuff.
Some of Tara Brach's guided meditations seem to work well like this one https://www.youtube.com/watch?v=xlyuGSwaZQ8 but others where there are instructions to imagine a lovign presence e.g. parent don't resonate as well: https://www.youtube.com/watch?v=mYk-MldGDWA
Thanissaro Bhikkhu's talks on pain have been helpful: https://www.youtube.com/watch?v=z-tYn6DVtHQ
Yongey Mingyur Rinpoche has some good short talks, and his guided meditations are more like talks. He has a nice warmth.
I have a difficult time listening to Kristin Neff's interviews and talks, but some of her guided meditations can be OK: https://www.youtube.com/watch?v=t24v0CtNSkA
Sharon Salzberg has some nice concise talks, but doesn't seem quite as warm.
Ajahn Brahm has some good highlight clips, especially from Q&As. His talks are quite long, and sometimes feel like they lack a little substance.
I know that most of recovery involves work. But sometimes I'm too exhausted to work on anything, and simply need a break to recharge. So I wanted to ask for recommendations for media that weren't as likely to spin up old patterns, and were effective for laying low and seeing some positive interactions.
Each person's idea of safe is different, so it could be useful to include some descriptions with recommendations.
It's been tough for me to find a balance between content that is lighthearted but also not too overexciting. I used to watch a lot of action movies but realized later on that they were wearing me out, partly due to exciting content and partly due to editing and production style.
I included a qualifier about low camera motion, minimal flicker/flashy effects, and some types of music because I feel like these can overexcite some people, including myself.
Some examples that come to mind:
Whose Line is it Anyways? - pretty safe, though it is improv, so anything is possible
Mythbusters - pretty safe although some specific episodes may have some troubling content if people have experiences or associations with those specific types e.g. car accidents
Dungeons and Dragons movie - pretty safe except story note about parental death and loss
Airplane - it's mostly nonsensical so I can't see it being bad
Galaxy Quest, Ocean's 8, Harold and Kumar, We're the Millers, Grandma's Boy, Top Secret!, Eureka, Stargate SG-1 - safe action/adventure comedy
Ted Lasso, The Good Place, Joy Ride - deals with heavier themes at times
The Unicorn - similar to Ted Lasso, The Good Place, but more lighthearted
White Collar - usually fine, some family relationship plot arcs can be tough
Royal Pains - similar to White Collar, but more lighthearted
I can't tell if I just had the Asian glow earlier in life (some Asians process alcohol much slower) or my MECFS started much earlier
https://www.youtube.com/watch?v=vqeIeIcDHD0
This video is very similar to how I was for years. Thankfully I was not quite as severe as her, but still pretty bad.
I know that biomedical terms are not really useful for CM.
Something I struggle with though is that telling providers that I get fatigue doesn't really capture this cycle of "small amount of exertion leads to 'crashes' of symptoms of different types in multiple places in the body that arrive at different times after the exertion, almost like exerting myself gives me multiple self-injuries. And exertion can be as little as talking for a few minutes. Or trying a new food or herb. It can even be from chewing. Or from getting acupuncture. Then the next day I always feel awful, like hungover, very upset, and extremely fatigued, can't get out of bed"
Would showing them this video help?
I ask because I ran into some issues like:
I'm trying to get some wisdom about how to trial new foods. Previously I haven't been too systematic about it, usually sticking to a teaspoon or less of a solid food, maybe a tablespoon or two if it doesn't seem to too risky (e.g. if I tolerate cabbage perfectly, then a couple tablespoons of broccoli doesn't seem too risky). If it's something used in small quantities like spices, herbs, or cooking oils, I'll also trial much smaller quantities than a teaspoon.
I'm moderate to severe, with no anaphylaxis thankfully. Usually I just get increased environmental/food sensitivity, GI symptoms, pain, and/or anxiety from new foods that don't end up well.
Dull pain is actually encouraging because it often ends up passing in a few days and I end up being able to tolerate the food. But sharp or asymmetric pain is not as encouraging and usually ends up intolerable.
Increase sensitivity is definitely the biggest warning sign, along with anxiety. Both are tricky because they sometimes don't show up until days or even weeks later at small doses of new foods. E.g. it took me about 3 months to figure out I was sensitive to citrus.
GI symptoms are kind of a wash. I haven't been able to tell what they correlate with exactly.
Any advice or experiences you'd like to share?
I haven't found anyone yet who has been through this. Seems like it'd be hard to find this combination. I am concerned that the PEM from dailyish treatments for 7 weeks will durably worsen my crashes
I felt it may be useful to have a general post on this. This question is very basic but for some reason I never considered it broadly before. Instead I usually got hung up on some specific idea.
I searched this forum and surprisingly, there were not many results about this general question, mainly people who had a specific issue and were just looking for referrals in a particular location.
What I found in the comments of these dozen or so posts:
Here is what I can come up with:
I'm looking for a telehealth provider who can get prescriptions filled by either Bastyr or SIEAM dispensaries in the Seattle area, and who has experience reading the classics (e.g. Huangdi Neijing, Huangdi Bashiyi Nanjing, Shanghan Lun, Jinkui Yaolue, and Wenbing Tiaobian)
Main areas of concern (I know these are biomedical terms, but I don't know Chinese medicine well enough to comment in that way):
Filling scripts at these places isn't absolutely essentially but it would greatly reduce the turnaround time for trialing formulas.
More information on post-fermented / wet piling: http://strayleavestea.com/intro_to_liubao.html
It's said to be good for digestion, but I'm not sure if people with MCAS could handle it. Wondering if anyone here has first hand experience
Having some real trouble communicating with my radiation oncologist about disability and how it impacts my ability to seek care and also brings a different perspective to making care decisions vs a "with cancer but otherwise healthy" case
I woke up this morning with PEM feeling like I had a really bad hangover, almost identical in feeling except additional physical symptoms.
I also remembered that alcohol intolerance is often reported early on in mitochondrial dysfunction related conditions (MECFS, long COVID, MCAS).
It got me wondering, has anyone ever tried those Hovenia dulcis raisin hangover supplements? I don't believe it would be a cure, but something relatively accessible to see some mild reduction in PEM symptoms might be useful. And this is widely available and consumed in Japan and Korea.
Acetaldehyde and other stuff like inflammatory mediators, and anti-inflammatory pathways are involved in hangovers. Holvenis has 9 or more compounds that can target these things by upregulating useful stuff and downregulating harmful stuff. There's also some stuff that happens with fibrosis inhibition, stabilization of mitochondria via modulation of reactive oxidation species and antioxidants, cell death and phagy, etc.
I found this: Heightened innate immunity may trigger chronic inflammation, fatigue and post-exertional malaise in ME/CFS | npj Metabolic Health and Disease - https://www.nature.com/articles/s44324-025-00079-w
After exercise, levels of retina-specific copper amine oxidase (AOC2) and copper homeostasis protein cutC homolog (CUTC) were higher in ME/CFS (Fig. 2F). AOC2 is a copper-dependent enzyme that catalyzes oxidation of primary amines, including neurotransmitters such as dopamine and serotonin, into aldehydes, H2O2, and ammonia. CUTC facilitates intracellular copper transport and regulates copper homeostasis. Copper is a cofactor for the oxidant defense system, which includes superoxide dismutase (SOD), catalase (CAT) and glutathione (Supplementary Text 1.3.10 and 1.3.11 for peroxisomal dys
And also this:
Molecular mechanism underlying alcohol's residual effects: The role of acetaldehyde in mitochondrial dysfunction at synapses in mouse brain cortex - ScienceDirect - https://www.sciencedirect.com/science/article/abs/pii/S074183292500117X
"Acetaldehyde drives mitochondrial dysfunction in ethanol hangover."
And this (though idk about this journal's reputability):
Long COVID, POTS, and ME/CFS: Lifting the Fog - https://www.iomcworld.org/open-access/long-covid-pots-and-mecfs-lifting-the-fog-98646.html
Without P5P glutathione cannot be synthesized from Hcy (Figure 1). A gut microbiome that lacks an abundance of histamine degrading Bifidobacteria leaves allergic features unopposed [42]. This may be contributory to MCAS. GABA secreted by histaminergic neurons also downregulates histamine signaling. The endogenous pathways for the degradation of histamine require either methylation (SAMe, Mg2+, and ATP) or mitochondrial ALDH. Alcohol intolerance is a primary complaint in LC, CFS, and MCAS with their dysfunctional mitochondria. Hepatic metabolism of alcohol in such individuals stops at acetaldehyde and a giant hangover.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11033337/table/T1/
https://pmc.ncbi.nlm.nih.gov/articles/PMC11033337/
"nine chemical constituents such as beta-sitosterol, DHM, quercetin naringenin, lutein, myricetin, kaempferol, emodin, and apigenin, were verified to be related to [alcohol-associated liver disease]"
Quercetin is often taken by people with MCAS. These other molecules seem to target stuff I've seen mentioned with MECFS.
I am taking a probiotic SIM01 and it is coated in some kind of intensely sweet combo of oligosaccharides and resistant dextrin.
When I manage to pour it into my throat without hitting my tongue, no headaches or pain and tightness.
If I taste a little bit, I get a little bit of symptoms.
If I taste a lot, I get a lot of symptoms.
This makes me wonder (piggybacking off this post: https://www.reddit.com/r/MCAS/comments/1q9wjuy/realization_about_mcas_diet_and_why_emptying_the/ ) if intense flavors such as intense sweetness can throw off nervous system regulation?
Wondering about experiences for higher doses of radiation which I don't believe are as common.
Carbonated mineral water that has been shaken and vented to make it flat.
https://www.youtube.com/watch?v=hy765udqi0E
A bit back I posted about how I have a difficult time eating without being distracted because I formed a habit of doing so to distract myself from my dad at meals (usually by reading a book and telling him it was homework).
I've tried many methods and stumbled upon this. Watching it seems to work for me: https://www.youtube.com/watch?v=hy765udqi0E
I'm guessing the particular live cam that works for someone would vary, but I wonder if this particular one is good because it shows, for lack of a better description, a 'relatively healthy' relationship between "children and parents" while they are eating and resting lol. I say this with some reservations as who knows what healthy actually looks like for beaver kits and their mums.
And boy do they rest, I haven't seen them really do anything but sleep for the last 8 hours