wabi-sabi
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Ooh, that's my favorite philosopher!Maybe that was another philosopher - Placebo!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Ooh, that's my favorite philosopher!Maybe that was another philosopher - Placebo!
We can warn her (and anyone else confused about DNRS) away from the program as a treatment for ME/CFS the same as we would warn someone with diabetes not to eat the whole bag of oreos at once. If we're less than diplomatic about it, it speaks to how much we've been hurt by ideas like DNRS. But, you're right. We can do better/kinder about it.
@mbunke
In further discovering the unusual, I've found (with real data from my monitor), that a shower and dressing looks like a marathon, but I can teach a low impact exercise class 3x/week and it barely registers. But many of the people in my class have tremendous physical challenges and they continue to report how much they are helped by the class.
I think there's just something to finding meaningful purpose.
This is what I'm talking about ^. There are certain CONTEXTS where my body does not crash like it usually does, and it's almost always contexts where there's a strong external motivator, something that grabs my interest and passion so strongly that my body simply says, "This thing seems to be more important than inducing symptoms."
Just trying to share my model of what helped me. In MY experience, the thing that got me better was gradually increasing my activity
This has been my experience as well. No motivation makes me better, even when I am losing things I desparately wish to keep. If I had a nice boyfriend I wouldn't even be able to see him.That was my experience when I was more moderate. As I slipped toward severe, eventually there was never a context where I didn't crash. It just made it more painful when there was some external context that I cared about (a person, an activity, etc).
Sadly no. I am passionate about lots of stuff and the more I do them the sicker I get. This is part of the grief of the illness.Say you're passionate about film, you try watching 5 minutes of some of your favorite film or film critics per day and see if it does anything and increase from there or something like that? I'm honestly asking your opinion if you think that would work, not trying to push you.
Sadly no. I am passionate about lots of stuff and the more I do them the sicker I get. This is part of the grief of the illness.
Yes, that's the sad hallmark of our illness. The more you do, the worse you get. No matter how much we wish it were otherwise.I wish I could do small amounts. I've spent the last 5+ years doing that. Maybe I can 'build up' from talking on the phone, or working on the computer. But I've found it's mostly the opposite. The more I rest, the better I feel physically.
Unfortunately LDN didn't do much for me other than maybe give me more vivid dreams? I experimented from around 1.5mg to 4.5mg but didn't seem to help my main symptoms. Maybe I'll revisit it.
Actually, no. The physical expression of a seizure is, you know, physical, but the genesis of that seizure is in the brain, with misfired electrical signals and temporal lobe / hypothalamus issues.If we're including short term physical problems, they treat seizures, which are physical.
Again, no. Benzos dont help with glutamate issues, they actually make them much, much worse, nor do I think that glutamate issues are a primary or even secondary source of ME/CFS issues, probably tertiary, if even that.They also have been found to help.some me/cfs patients a lot , probably bc of glutamate activity
And again, the effects of CNS / brain activity are the cause of tremors, dystonia, and nystagmus, at least as far as I know ...I believe they can also treat tremors and dystonia and nystagmus, all usually physically caused symptoms.
Neuropathic pain, is by its very name, a neuro issue, not a physical one, altho the pain is physical. Again, the genesis is neuro. And tricyclic anti-d's are truly horrible.Amitryptiline is a psych med, a tricyclic antidepressant, used for neuropathic pain too.
Maybe that was another philosopher - Placebo!
Yeah, these are probably the same docs that say that XYZ medication " ..... couldnt possibly cause those side effects, I've never heard of that, no other patient has complained about that ....." while you're writhing in obvious agony on his exam room floor ....I wish there was info in between really scary anecdotes that aren't universal and mainstream docs saying it has absolutely no effect
Yeah, in its way it was worse than the gastrograffin and iodine contrast which only screws you up for a week or three.Unfortunately it's not that type of contrast, it's gadolinium.
Just sticking in my oar, since I can't resist. Neuro stuff is physical because the brain and nerves are just hunks of meat. Some of them are pretty tiny hunks of meat, but still very material stuff.Neuropathic pain, is by its very name, a neuro issue, not a physical one, altho the pain is physical.
ABSOLUTELY !!!The issue you bring up about a misguided idea is quite valid. DNRS and its ilk are a misguided idea. They are a form of praying on vulnerable patients who are frightened, desperate, and cognitively disabled. I think ideas like this should be debunked, the better to get up real treatments that work
Nope. Nyuh-uh. I did that for a long time, and then as each perpetrator disappeared for a while, and then came back again, spewing the same bullshite, I finally lost patience and any ability to be gentle and diplomatic.But, you're right. We can do better/kinder about it.
It wont just hurt them. For some, it can cause severe, and sometimes irreversible, damage.But what we do know is that ideas like what OP was told in DNRS (more motivation, pushing past your envelope, going beyond comfort zone) will ultimately hurt someone with ME/CFS.
If that's true, then they're highly specialized hunks of meat and should probably be treated with great care and some degree of respect.the brain and nerves are just hunks of meat.
PS .... dementia is a neuro issue?I think it's useful to be able to draw a line (however dim) between psych issues like depression and neuro issues like dementia.
I am now thinking about gradually starting to take classes in a graduate program that I'm extremely passionate about
There is research for the concepts I'm talking about for things like chronic pain and other chronic problems, but very little for ME/CFS at this point unfortunately, although there is some.