Create accountLogin

Recent searches

No recent searches

Search options

Only available when logged in.
med-mastodon.com is one of the many independent Mastodon servers you can use to participate in the fediverse.
Medical community on Mastodon

Administered by:

Server stats:

427
active users

med-mastodon.com: AboutProfiles directoryPrivacy policy

Mastodon: AboutGet the appKeyboard shortcutsView source codev4.3.7

#fibro

4 posts4 participants1 post today
Public
Arend (they) 🏳️‍⚧️😷🎙️🍉🏴🕊

I gotta make recording easier for myself, especially with my spoons these days. Most days #fibro wears me out before I can get started.

As much as I love capturing guitar and voice at once, I think I gotta start doing more overdubbing of the two separately, and I'm struggling against the shame of doing so as a folkie. I'm sure I'll get over it.

Fellow #DisabledMusicians, please drop your tips for music-making.

#disabled#DisabledMusician#DisabledArtist
Public
Tom Kindlon

(UK)
"I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME & #longCovid ..."

threadreaderapp.com/thread/190

#MEcfs #chronicillness #Spoonies @mecfs @longcovid @chronicillness
@spoonies
@disability
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #PosturalOrthostaticTachycardiaSyndrome #POTS @pots

miss m Profile picture miss m @FatiguedStill 14h • 15 tweets • 2 min read • Read on X Last night I spoke with my friend's husband who's a PIP assessor, for advice about my upcoming PIP review, and was given some useful insights about how the process works from the inside, including specifics about ME and long Covid 🧵 People with ME and long Covid will only receive points for cooking, washing and dressing. It's unlikely we'll receive points in any other activity. Few applicants will be awarded points for eating and drinking. It's viewed that if you can grip cutlery, no matter how much pain you're in or how long it takes you to eat, then you are independent. Only applicants with eating disorders or a paralytic hand will be awarded points.
Public
Arend (they) 🏳️‍⚧️😷🎙️🍉🏴🕊

It felt good to sit in my blue chair.

It was nice to see and laugh with my friend Paul for a bit.

I played some Animal Crossing.

I made us peanut butter and plaintain smoothies.

My partner made us some dinner.

I really enjoyed drinking tea all through the day.

Despite my #fibro fatigue, yesterday was a good day. That's more than #3GoodThings.

Public
Daniel Dvorkin

A conversation: someone describing all the ways in which #fibromyalgia changed their life, and someone else responding with a cheery "Have you tried giving up all #FODMAPs† yet?" My reply was as follows.

"A friend with fibromyalgia calls this the 'cucumber water' question, as in 'have you tried cucumber water?' Anyone with any #chronic #illness has most likely tried anything you're likely to suggest. Unless they ask you for ideas, sympathy and support are all you should offer."

That was as civil as I could possibly be, and probably more than they deserved. I think there's at least the *possibility* of getting through in this case, which is why I didn't immediately turn green and rip my shirt off.

But having observed in detail the effects of #fibro and other #chronic #diseases on the lives of people I love—

NO. DO NOT.

===

†Fermentable oligosaccharides, disaccharides, monosaccharides, and polyols ... one or more of which occur in most of the meals most people eat every day. But sure, you should just drastically limit your diet because some stranger on the internet says so.

Public
FibroJedi

Hey folks,

My non-blog week continues. Earlier, I made some progress on the end project for my #pyrography mini-course (the dragon outline).

I have a lot left to do on it, but it took me two attempts to burn an outline I wasn't completely dissatisfied with.

I'm now currently proofreading some of my fiction-writing. But my #Fibro pain is still really high, so I'll end up in a game soon.

A snapshot of my woodworking table, which is FAR too small. On it I have a coaster that says "There is always a way" in english and in one of my invented languages. Behind that is a Celtic-knot practice piece and an outline of a dragon that will form my project to end my pyrography mini-course.
#woodwork#woodburning#learning
Public *
Tom Kindlon

Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia

frontiersin.org/journals/neuro

From the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #GulfWarSyndrome #GulfWarIllness #GWI

Frontiers in Neuroscience Dysregulation of lipid metabolism, energy production, and oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome, Gulf War Syndrome and fibromyalgia — Davis et al. "These results suggest a metabolic shift in ME/CFS patients from a hypometabolic state at baseline, characterized by down-regulated pathways to a hypermetabolic state post-exercise, characterized by over-activated pathways." "energy production pathways may fail to respond efficiently to physical exertion, potentially driving exacerbation of symptoms seen in PEM."
Public
Tom Kindlon

StudyME is a free global participant registry proudly launched by Open Medicine Foundation for ME/CFS, Long COVID and related diseases

omf.ngo/studyme/

Image is from AMMES March 2025 e-newsletter

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM

Open Medicine Foundation logo StudyME StudyME is a free global participant registry proudly launched by Open Medicine Foundation (OMF) in April 2023. This innovative recruitment tool is designed to bridge the gap between individuals living with ME/CFS, Long COVID and related diseases, and the researchers working tirelessly to uncover effective treatments and solutions.Our goal is to enhance the quality of life for individuals affected by ME/CFS, Long Covid, Fibromyalgia, and other post-infection illnesses by expediting research in these areas and increasing awareness by showing how many people are waiting for a cure. Signing up is easy. Read more here>>
Public
Tom Kindlon

🧵
"Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical & mental wellbeing, study finds"

eurekalert.org/news-releases/1

Research on people with autoimmune diseases but people with other conditions will sadly be able to relate

@chronicillness
@spoonies
#neisvoid
#chronicillness
#chroniclife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll
@lupus @mecfs
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #MEcfs #CFS #PwME
1/

News Release 2-Mar-2025 Chronic diseases misdiagnosed as psychosomatic can lead to long term damage to physical and mental wellbeing, study finds Peer-Reviewed Publication University of Cambridge
ExploreLive feeds
About