Imperfection is beautiful.
#recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #Fibromyalgia #MECFS #Erythromelalgia
#recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #Fibromyalgia #MECFS #Erythromelalgia
October 1, 2026 at 2:33 PM
Imperfection is beautiful.
#recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #Fibromyalgia #MECFS #Erythromelalgia
#recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #Fibromyalgia #MECFS #Erythromelalgia
"Erythromelalgia".
#poem #poetry #skypoets #blueskypoets #poetsofbluesky #poetrycommunity #writingcommunity
#poem #poetry #skypoets #blueskypoets #poetsofbluesky #poetrycommunity #writingcommunity
August 28, 2025 at 5:53 PM
"Erythromelalgia".
#poem #poetry #skypoets #blueskypoets #poetsofbluesky #poetrycommunity #writingcommunity
#poem #poetry #skypoets #blueskypoets #poetsofbluesky #poetrycommunity #writingcommunity
Primary erythromelalgia and small-fiber neuropathy, plus some kind of trigeminal nerve sensitivity
September 24, 2026 at 7:38 AM
Primary erythromelalgia and small-fiber neuropathy, plus some kind of trigeminal nerve sensitivity
And dysautonomia
SFN
And Erythromelalgia
SFN
And Erythromelalgia
January 25, 2025 at 3:25 AM
And dysautonomia
SFN
And Erythromelalgia
SFN
And Erythromelalgia
gods. I forget *how bad* my Erythromelalgia can be
I basically have my entire day structured around avoiding Erythromelalgia flares, and unavoidably sometimes my routine gets borked
and (gasp) I don't have my feet up during mandatory feets uppie time
Regret. Pain
#NEISvoid
I basically have my entire day structured around avoiding Erythromelalgia flares, and unavoidably sometimes my routine gets borked
and (gasp) I don't have my feet up during mandatory feets uppie time
Regret. Pain
#NEISvoid
May 28, 2025 at 5:50 PM
gods. I forget *how bad* my Erythromelalgia can be
I basically have my entire day structured around avoiding Erythromelalgia flares, and unavoidably sometimes my routine gets borked
and (gasp) I don't have my feet up during mandatory feets uppie time
Regret. Pain
#NEISvoid
I basically have my entire day structured around avoiding Erythromelalgia flares, and unavoidably sometimes my routine gets borked
and (gasp) I don't have my feet up during mandatory feets uppie time
Regret. Pain
#NEISvoid
Just complex chronic illness things:
About 4 years ago, I developed an extremely debilitating condition called Erythromelalgia aka "man on fire syndrome"
About 4 years ago, I developed an extremely debilitating condition called Erythromelalgia aka "man on fire syndrome"
September 8, 2024 at 2:16 PM
Just complex chronic illness things:
About 4 years ago, I developed an extremely debilitating condition called Erythromelalgia aka "man on fire syndrome"
About 4 years ago, I developed an extremely debilitating condition called Erythromelalgia aka "man on fire syndrome"
Never forget that walking away from something unhealthy is brave. #recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
September 28, 2026 at 3:06 PM
Never forget that walking away from something unhealthy is brave. #recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
Unless someone has Raynaud's maybe. I have Erythromelalgia (opposite of Raynaud's) AND Raynaud's sooooo.
June 24, 2026 at 6:30 PM
Unless someone has Raynaud's maybe. I have Erythromelalgia (opposite of Raynaud's) AND Raynaud's sooooo.
Woke up and made homemade chocolate chip cookies AND homemade dog treats.
It’s been years since I felt well enough to bake.
Having a painful condition ruins everything
But I’m trying to enjoy the good days
#chronicillness #erythromelalgia
It’s been years since I felt well enough to bake.
Having a painful condition ruins everything
But I’m trying to enjoy the good days
#chronicillness #erythromelalgia
November 17, 2024 at 3:58 PM
Woke up and made homemade chocolate chip cookies AND homemade dog treats.
It’s been years since I felt well enough to bake.
Having a painful condition ruins everything
But I’m trying to enjoy the good days
#chronicillness #erythromelalgia
It’s been years since I felt well enough to bake.
Having a painful condition ruins everything
But I’m trying to enjoy the good days
#chronicillness #erythromelalgia
anyway im pretty sure I have something called erythromelalgia (which is a rare neurological condition) caused by a mutation to the SCN9A gene
guess who has a flare affecting one cheek but not the other
September 18, 2026 at 1:41 AM
anyway im pretty sure I have something called erythromelalgia (which is a rare neurological condition) caused by a mutation to the SCN9A gene
Erythromelalgia means "fire pain limbs" BTW
Basically my body sends too much blood to my hands and feet, especially at night
This causes redness, hot extremities, and also extreme nerve pain
I am lucky that I have a friend with the genetic version and immediately recognized it, and also that my PCP is vaguely familiar with it
This causes redness, hot extremities, and also extreme nerve pain
I am lucky that I have a friend with the genetic version and immediately recognized it, and also that my PCP is vaguely familiar with it
May 28, 2025 at 5:54 PM
Erythromelalgia means "fire pain limbs" BTW
One of the happiest moments in life is when you find the courage to let go of what you cannot change. #recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
September 29, 2026 at 3:19 PM
One of the happiest moments in life is when you find the courage to let go of what you cannot change. #recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
crying sobbing. i didnt even realize that i had hardly any issues with my erythromelalgia during the last month or so, oddly when it was miserably hot??? and now it's Back
September 30, 2026 at 12:40 PM
crying sobbing. i didnt even realize that i had hardly any issues with my erythromelalgia during the last month or so, oddly when it was miserably hot??? and now it's Back
Next week, I will be having surgery to amputate both legs above the knee due to complications from EDS and erythromelalgia. My sister has kindly put together a GFM. Please share and consider donating if you are in a position to do so!
www.gofundme.com/f/corins-sur...
www.gofundme.com/f/corins-sur...
Donate to Corin's Surgery Recovery, organized by Mara Ervin
Our beloved Corin Parsons is having bilateral above-knee amputation surgery due to complications f… Mara Ervin needs your support for Corin's Surgery Recovery
www.gofundme.com
August 21, 2025 at 10:40 PM
Next week, I will be having surgery to amputate both legs above the knee due to complications from EDS and erythromelalgia. My sister has kindly put together a GFM. Please share and consider donating if you are in a position to do so!
www.gofundme.com/f/corins-sur...
www.gofundme.com/f/corins-sur...
Life is so weird.
One day you’re hiking the desert, the next you can’t even play outside with your dog.
#chronicillness #longcovid #erythromelalgia
One day you’re hiking the desert, the next you can’t even play outside with your dog.
#chronicillness #longcovid #erythromelalgia
April 27, 2025 at 3:53 PM
Life is so weird.
One day you’re hiking the desert, the next you can’t even play outside with your dog.
#chronicillness #longcovid #erythromelalgia
One day you’re hiking the desert, the next you can’t even play outside with your dog.
#chronicillness #longcovid #erythromelalgia
More on livedo reticularis:
dermnetnz.org/topics/lived...
More on erythromelalgia:
dermnetnz.org/topics/eryth...
dermnetnz.org/topics/lived...
More on erythromelalgia:
dermnetnz.org/topics/eryth...
Livedo reticularis
Livedo reticularis, Livedo racemosa. Authoritative facts from DermNet New Zealand.
dermnetnz.org
November 16, 2025 at 2:39 PM
More on livedo reticularis:
dermnetnz.org/topics/lived...
More on erythromelalgia:
dermnetnz.org/topics/eryth...
dermnetnz.org/topics/lived...
More on erythromelalgia:
dermnetnz.org/topics/eryth...
Me 🤝 Kruk
Erythromelalgia
Erythromelalgia
June 19, 2025 at 11:11 PM
Me 🤝 Kruk
Erythromelalgia
Erythromelalgia
Fuck Erythromelalgia and fuck all my doctors that don’t care about me.
Ranting from me who’s having a hard day. 😭
Ranting from me who’s having a hard day. 😭
March 5, 2025 at 7:32 PM
Fuck Erythromelalgia and fuck all my doctors that don’t care about me.
Ranting from me who’s having a hard day. 😭
Ranting from me who’s having a hard day. 😭
Imperfection is beautiful. #RECOVERED #anxiety #irondeficiencyanemia #nevergiveup #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
February 3, 2026 at 4:11 PM
Imperfection is beautiful. #RECOVERED #anxiety #irondeficiencyanemia #nevergiveup #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
(No advice)
I have a bunch of circulatory system problems including POTS, Rosaceae, and Erythromelalgia
So I had initially assumed "legs feel heavy and swollen, I am super tired and cold" was just some flavor of those things
I have a bunch of circulatory system problems including POTS, Rosaceae, and Erythromelalgia
So I had initially assumed "legs feel heavy and swollen, I am super tired and cold" was just some flavor of those things
Basically my body sends too much blood to my hands and feet, especially at night
This causes redness, hot extremities, and also extreme nerve pain
I am lucky that I have a friend with the genetic version and immediately recognized it, and also that my PCP is vaguely familiar with it
This causes redness, hot extremities, and also extreme nerve pain
I am lucky that I have a friend with the genetic version and immediately recognized it, and also that my PCP is vaguely familiar with it
May 5, 2025 at 3:22 PM
(No advice)
I have a bunch of circulatory system problems including POTS, Rosaceae, and Erythromelalgia
So I had initially assumed "legs feel heavy and swollen, I am super tired and cold" was just some flavor of those things
I have a bunch of circulatory system problems including POTS, Rosaceae, and Erythromelalgia
So I had initially assumed "legs feel heavy and swollen, I am super tired and cold" was just some flavor of those things
While reading the article about a possible next-gen pain Rx, something caught our eye: Man On Fire Syndrome, a rare microvascular disease "that results in intense, burning pain and redness primarily of the feet, and, even more rarely, in the hands."
#raredisease #manonfiressyndrome #erythromelalgia
#raredisease #manonfiressyndrome #erythromelalgia
May 25, 2025 at 12:53 AM
While reading the article about a possible next-gen pain Rx, something caught our eye: Man On Fire Syndrome, a rare microvascular disease "that results in intense, burning pain and redness primarily of the feet, and, even more rarely, in the hands."
#raredisease #manonfiressyndrome #erythromelalgia
#raredisease #manonfiressyndrome #erythromelalgia
[Medical trauma]
The additional fucked up psychic damage is that now that I have diagnoses for what was going on
If I tell doctors the list of things that happened all at once, they visibly wince in sympathy
(Hamstring tear, IIH, terminal ileitis, erythromelalgia)
The additional fucked up psychic damage is that now that I have diagnoses for what was going on
If I tell doctors the list of things that happened all at once, they visibly wince in sympathy
(Hamstring tear, IIH, terminal ileitis, erythromelalgia)
March 11, 2025 at 3:44 PM
[Medical trauma]
The additional fucked up psychic damage is that now that I have diagnoses for what was going on
If I tell doctors the list of things that happened all at once, they visibly wince in sympathy
(Hamstring tear, IIH, terminal ileitis, erythromelalgia)
The additional fucked up psychic damage is that now that I have diagnoses for what was going on
If I tell doctors the list of things that happened all at once, they visibly wince in sympathy
(Hamstring tear, IIH, terminal ileitis, erythromelalgia)
I wish Covid would have killed me, to be honest.
Because of Covid I am disabled and housebound. Because of Covid it gave me the rarest painful condition that has no cure or treatments.
I miss my old life. I want to be able to walk again
#erythromelalgia
#sfn #chronicillness #rarediseaseday
Because of Covid I am disabled and housebound. Because of Covid it gave me the rarest painful condition that has no cure or treatments.
I miss my old life. I want to be able to walk again
#erythromelalgia
#sfn #chronicillness #rarediseaseday
February 26, 2025 at 11:26 PM
I wish Covid would have killed me, to be honest.
Because of Covid I am disabled and housebound. Because of Covid it gave me the rarest painful condition that has no cure or treatments.
I miss my old life. I want to be able to walk again
#erythromelalgia
#sfn #chronicillness #rarediseaseday
Because of Covid I am disabled and housebound. Because of Covid it gave me the rarest painful condition that has no cure or treatments.
I miss my old life. I want to be able to walk again
#erythromelalgia
#sfn #chronicillness #rarediseaseday
Haven’t seen any #dermatomyositis #sjogrens #erythromelalgia @‘s, tags or resources yet, but happy to be wrong if someone sends or tags any my way 🙌
November 16, 2024 at 12:22 AM
Haven’t seen any #dermatomyositis #sjogrens #erythromelalgia @‘s, tags or resources yet, but happy to be wrong if someone sends or tags any my way 🙌