I was scheduled to head back inpatient for another 5 day #KetamineInfusion on Tues.

I'm sick with #COVID. Since I haven't really left the house for a couple of weeks, Peter likely brought it home.

He's a sharing, caring type of guy. 🫠

Oh well. I've rescheduled for March.🤞

#SmallFiberNeuropathy

Navigating neuropathy? This story is full of wisdom & hope.

Meet Will Schwalbe — author, editor, and FPN supporter — who has lived with small fiber neuropathy since 2017.
Watch here → https://www.youtube.com/watch?v=mHazfr-zoXs

#neuropathy #smallfiberneuropathy #patientstories

( COMPASS-31) or the severity of the initial #COVID infection.
Multiple 2025 studies indicates that approximately 46% to 59% of patients with painful LC meet the diagnostic criteria for #smallfiberneuropathy (SFN).
- Evidence suggests an immune-mediated pathogenesis.

Because I'm Medically Fascinating: Nerve samples from my skin punch biopsies are on their way to Harvard. (🤞🏻 seeing if I'm eligible for Immunoglobulin therapy, IVIG) I feel fancy!

#smallfiberneuropathy #dysautonomia #neurosarcoidosis #sarcoidosis #autoimmune #chronicillness #IVIG #spoonies

I'm so curious to hear if anyone in South Korea has used the LG Electronics MediPain MSP1 device. It was made to stimulate the c fibers to relieve small fiber neuropathy pain. It looks like they're not produced anymore, but may be available used in SK?

#chronicillness #smallfiberneuropathy

My appt with the neuromuscular disease clinic was great! We have a plan. It'll take awhile to get through all the new testing. In the meantime, I'll be happy with the other body systems who got some attention this year and are doing well 😜.
#neurosarcoid #dysautonomia #smallfiberneuropathy

Primarily two blood pressure readings are shown. One is high at 194/114. The other is low at 103/73. These are both just from standing or doing regular activity like walking to the kitchen. My body's signals can't automatically do what they are supposed to. They can't regulate.

My dysautonomia is doing a tango today.

#dysautonomia #sarcoidosis #smallfiberneuropathy #chronic #bloodpressure

8/

Like, "It's just #fibromyalgia." "It's just #SmallFiberNeuropathy." "It's just #hEDS." "It's just #migraine."

No. It's all of it, plus the pain of #dysautonomia ( #coathangerpain ) and the pain spikes from the flares. It's the systemic nerve stuff of #SmallFiberNeuropathy.

Those of us with #SmallFiberNeuropathy | #SFN | #Dysautonomia | #POTS | #Lupus | #UCTD

How do you get your water in?

a woman standing next to a couch with the words where 's my heating pad written on it ALT: a woman standing next to a couch with the words where 's my heating pad written on it

Really annoying that just as summer’s ending, my joints and nerves are more functional and in less pain, just in time for it to get cold and my winter flare to start all over again 🙃

#Lupus #HealthSky #Spoonie #UCTD #SmallFiberNeuropathy #Dysautonomia #Arthritis

I'm paying for yesterday's work in the garden.

I really overdid it. 🫠

#chronicillness #chronicpain #pwME #mecfs #cfsme #fibromyalgia #dysautonomia #migraine #SmallFiberNeuropathy #fatigue #pem #PENE #spooniesky #disabledsky

Black text on a purple background reads: One thing you realize when you have an illness that seriously affects your energy levels is that *everything* takes energy.

#chronicillness #chronicpain #spooniesky #disabledsky #cfsme #pwME #pem #PENE #fibromyalgia #dysautonomia #migraine #fatigue #SmallFiberNeuropathy

I went for a walk today! Just a short one, and I came back with a headache from the sun and crashed, but I got that D 😈🙌🏼
#Lupus #HealthSky #UCTD #SmallFiberNeuropathy #Dysautonomia

It takes me so long to make breakfast, it's lunch, and so long to make lunch, it's dinner—but at least I'm eating. 😋

#Spoonie #Lupus #HealthSky #Dysautonomia #SmallFiberNeuropathy

It fits!! I sits!!

I'm already excited for shower time, which says a lot, considering it's usually my most daunting task.

#FuckLupus #SmallFiberNeuropathy #Dysautonomia #Spoonie #HealthSky

Talk with @ruhoy.bsky.social Do Not miss that!
Misunderstood and Misdiagnosed: A new Look at ME/CFS
#Septad #MCAS #Dysautonomia #POTS #OI #ConnectiveTissue #EDS #hEDS #CCI #SmallFiberNeuropathy #Autoimmunity #Infections #Sibo #LongCovid #LongLyme #LongSomething

youtu.be/kmrUpXZel9A?...

Dr. Clair Francomano explains 3 lesser-known neurological complications linked to #EhlersDanlosSyndrome (EDS): #Craniocervicalsyndrome, #tetheredcord, and #smallfiberneuropathy. youtu.be/K11wNtPn128?...

Heute wurde ein Stück aus meinem #oberschenkel entfernt.
#thigh #haut #skin #operation #hautausstanzen #punchoutskin #test #gewebeprobe #tissuesample #smallfiberneuropathy #hautarzt #dermatologe #dermatologist #lucia #tierliebhaberin #dragonmeeri #fyp #foryou #foryoupage #foryoupagebluesky

Decreased cardiac output and Preload failure in #MyalgicEncephalomyelitis meeting IOM criteria.
Low flow state in tilt table with impaired systemic oxygen extraction.
#SmallFiberNeuropathy is related to pwME. Fiber dysfunction is related to dysautonomia in pwME
Dr. Systrom
#MECFSConference2025

A strong support network is key to living your best life with neuropathy. Author Will Schwalbe talks about the important role friendship has played in his life
Watch now: https://youtu.be/mosJ8r-iI0M?si=3L21EgkJDeTHrlFG

#supportnetwork #smallfiberneuropathy #neuropathy #PNawarenessweek

"Information-packed discussion with Dr. Kaufman and Dr. Ruhoy on #SmallFiberNeuropathy including potential treatments, skin punch biopsy"

youtu.be/9uk2vEDleQs?... #SFN

Source: @longhaulerbear

Photo showed me at getting an infusion through a port in my arm

It's #InfusionDay!
First day with the new dose: 40mg #IVIG every 2wks, down from 30mg 3/4wks, so it's an extra long day. Going ok so far, just super tired & achy (what else is new) – but maybe that means time for a nap!
~🦋
#ChronicIllness #dysautonomia #sarcoidosis #SmallFiberNeuropathy #SpoonieSky

I am one of many. The #millionsmissing

#mecfs #chronicillness
#chronicfatigue #ehlersdanlosawareness #ehlersdanlossyndrome #pots #smallfiberneuropathy #mcas #SIBO #nocturnalepilepsy #arttherapy #covid19 #longcovid #longhauler #postviralillness

Promo graphic for upcoming webinar. Features photo of Dr. Baula Barreras and text that reads Wednesday Small Fiber Neuropathy in Sarcoidosis Causes, Symptoms, and Treatment Feb 19th | 8pm EST Life & Breath Foundation

Coming Soon:
#SmallFiberNeuropathy in #Sarcoidosis Webinar
Wednesday, February 19th, 8PM EST
Dr. Paula Barreras, Neurologist & Neuroimmunology Expert
Register at us02web.zoom.us/webinar/register/WN_OpQ6llfLTUm6hZeU3t8BwA
~🦋
#LifeAndBreathFoundation #ChronicIllness #SpoonieSky #SarcLife #SarcStrong

Photo of me at infusion center with arm exposed to show port accessed (& bandaged); smaller photo insert shows nurse's gloves hands drawing blood from my arm

It's #InfusionDay!
All went smoothly, from #port access to blood draw, hydration to #IVIG (& more hydration).

So comfy with my fuzzy #IVhoodie; passing the time with #Wicked movie 💚🧹 & #HellsKitchen cast recording 🎶
~🦋
#ChronicIllness #infusion #sarcoidosis #SmallFiberNeuropathy #SpoonieSky

FDA Approves Journavx Drug to Treat Pain Without Addiction Risk The drug, Journavx by Vertex Pharmaceuticals, blocks pain signals to the brain, making it nonaddictive.

New 1st in class, non opiate nonNSAID ,

#peripheral #Pain medicine : #Journavx #suzetrigine

Might be kidney processed.

www.nytimes.com/2025/01/30/h...

#CPP #SFN #SmallFiberNeuropathy #DisabilitySky #NEisvoid

#Fibro #Neuropathy

Photo of me with one arm stretched out & tubing leading to an IV machine; laptop, phone, & coffee are on the table before me

It's #InfusionDay!
All going smoothly here: #port accessed (seriously one of the best medical decisions I've ever made); hydration & premeds done (to mitigate side effects); #IVIG flowing now.
~🦋
#ChronicIllness #dysautonomia #neuropathy #RareDisease #sarcoidosis #SmallFiberNeuropathy #SpoonieSky

We are not even into a full week of 47's 2nd term, and already, things are starting to feel grim. #chronicillness #chronicfatigue #mmwr #CDC #chronicillness #ehlersdanlossyndrome #dysautonomia #mcas #mecfs #smallfiberneuropathy nocturnalepilepsy

Tomorrow, I'll be admitted for 6 days of #KetamineInfusion for #SmallFiberNeuropathy and other pain conditions.

Gotta say, I think I planned well, being heavily medicated and all.

(And I apologize now for any strange or difficult to read posts. But not the funny ones. I mean those.)

Would love to find other creators who discuss/are into:

✨ #EhlersDanlosSyndrome
✨ #Disability
✨ #smallfiberneuropathy
✨ #mobilityaids
✨ #Gardening🍃
✨ #Occult
✨ #Goth
✨ #Horror
✨ #ScaryMovies
✨ #videogames
✨ #Fishing
✨ #vines
✨ #Pets
✨ #PuertoRico
✨ #memes
✨ #Italiangreyhounds
✨ #sphynxCats