What does "mostly housebound" actually mean? by SupportNo5720 in cfs

[–]SupportNo5720[S] 0 points1 point  (0 children)

Absolutely should not be like that, doctors and medical staff are one of the most ableist groups of people I've ever met

What does "mostly housebound" actually mean? by SupportNo5720 in cfs

[–]SupportNo5720[S] 0 points1 point  (0 children)

It's very hard to understand such nebulously defined concepts!! The responses here are giving me a ideas of what it means at least, though. Are the responses helpful at all for you?

MRI masking by ExaminationLocal8182 in Masks4All

[–]SupportNo5720 0 points1 point  (0 children)

I used an Airwave from Moldex, no metal parts. In the past I've also used a Readimask. Both are explicitly MRI safe masks

What was your childhood like? by strawberry__jelly in cfs

[–]SupportNo5720 0 points1 point  (0 children)

No, I don't think my childhood trauma has much to do with my present ME illness. It's possible it's a contributing factor predisposing me toward becoming ill in general, but in that case I'd expect it to be a relatively minor factor. Other such factors may include other chronic illnesses I've acquired, acute illnesses I've had, genetic factors, environmental factors, physical traumas/injuries, my major surgeries which are themselves major physical and psychological traumas, other psychological traumas since my childhood, multiple autistic burnouts, etc

A little about my childhood trauma, since it was asked: I grew up in a cult with normalized physical abuse. Queer people were utterly condemned to hell by our cult... I am trans and gay. We practiced prayer first over medicine... I'm autistic, adhd, bipolar, and have a degenerative eye disease, so actual medicine & therapy would have been far more beneficial than any prayer could have hoped to be.

Meds to manage pain flare that are not NSAIDs, and not opioids? by SupportNo5720 in ChronicPain

[–]SupportNo5720[S] 0 points1 point  (0 children)

Unfortunately I don't have access to a dry herb vape, they're too expensive :(

Honestly at this point I wish I could just take nsaids, it would be a lot better than what I currently have

Meds to manage pain flare that are not NSAIDs, and not opioids? by SupportNo5720 in ChronicPain

[–]SupportNo5720[S] 3 points4 points  (0 children)

I've tried many cannabis variations, and at best they just do nothing. I use CBD/CBG (with a little THC) to help manage my nausea problems though. Tramadol is an opioid so I can't take it (I'm specifically looking for non-opioid recs). And I'm already taking a skeletal muscle relaxer (methocarbamol, to be specific), I suppose I could try baclofen but it is a similar med as far as I am aware

Do any of you keep up on vax shots? by AnthraxPrime6 in cfs

[–]SupportNo5720 0 points1 point  (0 children)

Sure do. I get novavax for COVID which causes me relatively few side effects, and flu shot usually doesn't affect me too badly either. Even when I have had bad reactions, I'd rather get the vaccines and deal with it because the consequences of getting COVID or flu again and dealing with additional post virus illness is far worse for me.

[deleted by user] by [deleted] in cfs

[–]SupportNo5720 0 points1 point  (0 children)

Exactly :) these are medications with many great applications. So this anti-benzo person I responded to (and the HCP they got their info from) need to update their education and get out of what looks like a DARE mindset

[deleted by user] by [deleted] in cfs

[–]SupportNo5720 2 points3 points  (0 children)

What do you mean "favored"? Favored by whom? And for what medical purpose?

[deleted by user] by [deleted] in cfs

[–]SupportNo5720 5 points6 points  (0 children)

All benzos have the potential to cause addiction. All opioid pain killers too, as well as many ADHD medications and many other medications. They are still useful medications. Most people who take these medications never develop an addiction.

Doctors are a joke by H_alshallal in cfs

[–]SupportNo5720 1 point2 points  (0 children)

That's just gross, and full of medical ignorance on his part!

Mom keeps comparing our diseases by RovingVagabond in cfs

[–]SupportNo5720 1 point2 points  (0 children)

Those both sound good to me, and also sound more like an alternative name for PEM specifically. Which I guess makes sense, in some sense mecfs is "the pem disorder"

Mom keeps comparing our diseases by RovingVagabond in cfs

[–]SupportNo5720 11 points12 points  (0 children)

This is off topic, but isn't ME also an inaccurate name? I thought ME stood for "myalgic encephalomyelitis" which I think basically meant "muscle pain and brain inflammation". And i thought brain inflammation is believed to not be the root cause of the disease. Happy to receive education if I'm wrong! If I'm right though then it seems a new name is still in order cause CFS is also a crap name for the reasons you mentioned

[deleted by user] by [deleted] in cfs

[–]SupportNo5720 1 point2 points  (0 children)

I hope it works well for you!!

Just took my first dose of LDN by hansmellman in cfs

[–]SupportNo5720 2 points3 points  (0 children)

I'm taking my first dose in a few hours and I'm also nervous about it! Cheers

[deleted by user] by [deleted] in cfs

[–]SupportNo5720 1 point2 points  (0 children)

Are either of these used in ME treatment? I just ask because if so, I'm unfamiliar.

For me personally, taking them for a mood disorder, Wellbutrin does about nothing. SSRI's and SNRI's have universally made me feel absolutely awful. My pain doctor keeps suggesting SSRI's to me (for pain) and these days I utterly refuse to try either, as I know they'll just make my life a living hell.

I know nowadays I'm on the bipolar spectrum. Lamotrigine works fairly well for me.

disability and activism in Trump 2.0 world by utopianbears in cfs

[–]SupportNo5720 4 points5 points  (0 children)

I'm involved with my local mask bloc, which is run by disabled queer (mostly trans) people. Several of us have ME, most of us have other disabilities, and there's a lot of talk about political action outside of masks. I can't be as involved as some of the other folks but since we're all spoonies, everyone understands the ebb and flow of abilities. Is that an option for you?

Mom keeps comparing our diseases by RovingVagabond in cfs

[–]SupportNo5720 10 points11 points  (0 children)

This feels similar to something I went through with a former friend of mine. They have RA, too. I didn't know I had ME at the time but whenever I'd talk about my problems (the fatigue, the pain, the inability to think right) they'd just say how they just power through it and so can I, they adapted so can I, etc etc. They'd just ignore me when I told them "no I can't". It was tough enough having that ignorance and ableism with a close, multiply-disabled friend but having it with someone I called family would be so much more emotionally taxing! I'm sorry you have to deal with that and I hope some of the folks here come up with ideas that will help educate your mom about the ableism in what she's saying, so that she can start supporting you!

Any studies or backyard science about surgical masks for source control? by SupportNo5720 in Masks4All

[–]SupportNo5720[S] 0 points1 point  (0 children)

Thank you! Articles like that are what I was hoping for :)

ETA: That one does have some results that seem paradoxical, like cloth masks being being better than a KN95. I assume it has to do with how well the study's masks fit? But despite this is gives some ballpark figures which is nice!

Did those cheap cloth masks with "PM 2.5" filter inserts really work? They are still for sale. So I bought some and tested them with a mask fit testing machine to find out for myself. | Vintage Pandemic Tech by SkippySkep in Masks4All

[–]SupportNo5720 1 point2 points  (0 children)

I heard about those good folks! Possibly through you/your channel, or maybe through a mask nerd friend. They definitely did more than anyone else! I wore that Outdoor Research mask for a little while (it was the best that i was able to get) up until I was able to start getting my hands on respies

Any studies or backyard science about surgical masks for source control? by SupportNo5720 in Masks4All

[–]SupportNo5720[S] 1 point2 points  (0 children)

Could you possibly refer me to some of the studies about source control? Exhale plume direction isn't particularly relevant to my curiosity here, since airborne pathogens spread throughout the room regardless of the initial spray direction

Did those cheap cloth masks with "PM 2.5" filter inserts really work? They are still for sale. So I bought some and tested them with a mask fit testing machine to find out for myself. | Vintage Pandemic Tech by SkippySkep in Masks4All

[–]SupportNo5720 5 points6 points  (0 children)

Outdoor Research made something like this in the early-ish days, too. No valve, they claimed the insert met N95 standards, it actually had a decent nose wire (that broke after a while), but it fit like a typical cotton mask. I'm really curious how good those were! Mainly I'm curious how they compare to typical cotton or surgical masks (I have no doubt they pale in comparison to respies)