#i don't personally think it's necessarily the symptoms of my body falling asleep because nothing has felt quite this potent before

[lyrashifts]

i just wanted to share this in case anyone else wanted to give it a try, but last night i tried out this unknowing meditation and when i got into the groove of it well enough my heart rate sped up and i stopped feeling almost all of my body. and i just sort of felt weightless. i also felt a tingly sensation over my body that was definitely noticeable. it was barely a guided meditation either, and all of this just happened in the silence.

i think i got too convinced on going to the void all of a sudden (not that it would stop me necessarily) and my thoughts started spiralling, but i'm definitely giving it another try!

but if anyone has shifted or gone to the void i am curious if they've felt similar??

[rotationalsymmetry]

About GET: it might not be completely impossible to do it without making CFS worse, but it's really, really hard and the consequences of making things worse are very high. Part of that is PEM is frequently delayed by a day or two. Part of it is...as far as I know there isn't actual data on this, but anecdotally: people can build up sort of reserves by not overextending over time, and be resistant to crashing the next time they overdo it, but if you don't have those "reserves" because you're always near your limit, you crash harder/for longer. And crashes aren't always temporary, people have reported not getting back to their previous baseline after a bad crash.

And part of it is, most people will listen to their doctor over their body, and if their body is telling them "I can't handle this" and their doctor is telling them they can, they'll push themselves through the discomfort. Which is often the right thing to do. But generally not with CFS.

Doctors tend to be motivated to find cures/teeatments more than avoiding making things worse. It's a known problem. And tbf often their patients are very anxious about getting better and not necessarily thinking about the possibility that "treatment" might make things worse, especially if they've only recently gotten sick (like in the last 6-12 months) and haven't had time to adjust to a new normal.

Physical activity tends to be the most obvious trigger for PEM but is not the only one. It can also be triggered by socializing, sensory overload (fun when it's both, like trying to follow a conversation in a noisy restaurant), cognitive activity, or -- this is significant but hard to measure -- strong emotions/stress. Not just "bad" strong emotions either, being excited can both make you run through spoons faster and make you less likely to notice early warning signs.

Ways to adjust your life to reduce crashes:

1. Figured out your energy envelope (spoon budget, amount of cell phone charge, spell slots) and stay inside it: people tend to overestimate how much they can do when they have CFS, so tracking what you do over two weeks and then averaging it can tell you what's sustainable (not just what you can do on a good day if you don't mind triggering bad days.) (Yeah, this isn't always possible: sometimes people can't afford to stop working or have family obligations they can't avoid or taking care of personal needs uses consistently more spoons than they have.)

2. Rest before you are tired, at least once a day for 10 minutes, but many people do a longer rest, more frequent rests, or both. (By "rest" I mean lying down as close to doing nothing as you can manage; I tend to listen to a guided meditation or to music. Some people fall asleep, this is OK for some people and for others it's better not to because it can disrupt sleep.)

3. Break up things into chunks with sitting-down rests in between, or do things differently (eg sitting down in the shower.)

4. Getting other people to do things or doing less.

5. Noticing patterns: often people with CFS, when they get their symptoms under control enough that they're not crashing frequently, notice that they can tolerate more activity in the morning than the evening, or vice versa.

6. Making plans for special occasions and getting extra rest before, after, and during when possible. For instance, if I want to go somewhere for my birthday and I know it'll use more than my average day number of spoons, I can use fewer spoons two days before and two days after, and likely will be fine. Also, get extra rest during and after being sick (I mean, sick on top of the CFS.)

7. About exercise: exercise is risky for people with CFS, because it can burn through a lot of spoons and trigger PEM, again sometimes two days after the trigger. (Especially exercise that elevates the heart rate significantly, like jogging or climbing stairs.) But, not exercusing causes problems: muscle weakness, back or joint pains, stiffness/loss of mobility from lack of stretching, negative effects on mood/stress accumulation, etc. It is generally worth looking for sustainable amounts/types of exercise: I have PT for my back that I can do lying down, and can tolerate about 2 miles of walking on level ground on a good day if I sit down and rest a few times. And I do a fair bit of yoga, of the stretchy floor poses and restorative poses variety. (I'm not doing sun salutations.) In theory it is possible to increase this amount gradually over time, but that's risky (if you're careful enough it might be fine for months before you overdo it, speaking from expeience) so I recommend finding an amount/type of exercise that works and just sticking to it. It's not necessarily going to be what a healthy person would consider exercise, and that's OK. Also, there are approaches to stress relief that do not rely on physical activity, such as deep breathing and progressive muscular relaxation, and there's ways of getting into your body like body scans and self-massage (or getting someone else to massage you if you can swing it) or hot baths.

8. When figuring out what's sustainable, remember that chores and errands are also physical activity and use spoons (and have more or less the same benefits as exercising for the sake of exercising -- it probably doesn't make sense to walk for fun in place of walking to the convenience store, but it might make sense to do specific strength exercises instead of standing to wash the dishes or vacuuming), so don't track them separately from the things you do solely as exercise.

Full Transcript at the link; 3-minute listen.

Quote:

By taking biopsies from long COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.

Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.

"We saw this immediately and it's very profound," says Braeden Charlton, one of the study's authors at Vrije University in Amsterdam.

The tissue samples from long COVID patients also revealed severe muscle damage, a disturbed immune response, and a buildup of microclots.

"This is a very real disease," says Charlton. "We see this at basically every parameter that we measure."

[b-blushes]

Hi, I hope you're having a good day!! I hope I'm not taking up too much of your time but I have a question..what does fibromyalgia feel like? I'm wondering because for years the later it gets the more achy my body will get and whenever it happens I feel miserable :( I don't know if this says anything but the pain radiates mostly in my shoulder blades, both arms, both legs, sometimes chest, neck and back (usually my upper body aches way worse and it keeps me up at night) thank you for your time💛

hi! hope you’re having a good day too! i’ll chat about my experience with fibromyalgia under the cut in case people want to avoid it (as I’m talking about symptoms which some people might find upsetting) or in case it gets long (: (lets be honest it will probably be long, i am not brief! :P )

For me there are a lot of feels. The pain part of it is like a painful throbbing ache i think, but how i describe it to myself is ‘feeling like the inside of my bones is corrupted’. My pain tends to feel centred around my joints and radiate outwards but that’s just how the physical sensation of pain feels to me. Like, it just kind of *feels* like something has gone wrong inside my bones and that it makes a Bad Pain, even though the cause of my pain is dysregulation of pain signals, not a problem in my actual bones. I don’t want to spread misinformation - I’ve had lots of tests and my experiencing that pain as coming from inside my bones doesn’t mean that that’s what the pain ‘is’, if that makes sense? It’s just how i would describe my experience of it. (To the knowledge of me and my doctors, there’s nothing wrong with my bones! I do have joint hypermobility though which aggravates my chronic pain/causes a different type of pain sometimes.) I think the experience of fibromyalgia pain is different for different people though, and can also differ for the same person (so one person has different types of fibromyalgia pain?) (e.g. burning, stabbing, aching, nerve, etc.). I’m not an expert on the condition in general though, I’m just familiar with it related to my own symptoms/diagnoses, and it’s kinda complicated as I have several diagnoses that potentially overlap in being able to explain symptoms (:For me the pain part isn’t necessarily tied to time of day, but there are certain things that tend to trigger it and certain times that tend to be worse than others. Other times though, it’s ‘random’ (so I can’t point to something that happened or that I did as a ‘cause’, it’s just a bad pain time.)Some other fibromyalgia feels for me are:- nausea- fatigue, both mental (like brain fog, not being able to concentrate/remember/think straight, trouble controlling emotions) and physical (like feeling like i have no energy to move, muscle fatigue like blurry vision because my eye muscles are too tired to focus my sight)- trouble sleeping (like not being able to fall asleep, waking up tired, pain stopping me from sleeping or waking me up in the night)- headaches- vestibular migraine- dizziness/vertigo

That’s not an exclusive list but a bunch of things I can remember right now (: Some of those might be more autistic things, hypermobility things, or anxiety/depression things too, or might just be any/all of those pairing up with the fibromyalgia and exacerbating each other (: (or even a different undiagnosed thing, i honestly don’t know at this point! :P)Whether or not you match with all/a lot of those though, fibromyalgia seems like it can be different for everyone and has a wide range of symptoms that you can potentially have (although you do need to meet the symptoms that are criteria for diagnosis). If you don’t experience it the same as me, that doesn’t mean you don’t have it, or similarly, if you do experience those symptoms it doesn’t necessarily mean that fibromyalgia is the cause of them - there are plenty of other conditions that could lead to similar feels, either alone or together with other conditions. Either way though, it sounds like you’re dealing with a lot and that it’s worth looking into and trying to get to the bottom of! I of course can’t say if it might be fibromyalgia for you or if it might be something different, but you do deserve to get help for whatever’s causing your symptoms and fibromyalgia might be something good to bring up to your doctors to be considered or ruled out (: I found the Arthritis UK website to have a lot of useful information on fibromyalgia (although it isn’t an arthritis condition) https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/They have a really good booklet that you can download as a PDF too, if you think it might be handy to read more about it (: I hope you can get to the bottom of it soon and feel a bit better! If you do figure anything out or just want to check in or ask other things, please do send another ask! I’m happy to chat with you about it and to hear how you’re getting on! Hope today is going okay (: