Small Fiber Neuropathy Network

We are a community providing support and resources to others that are also suffering from Small Fiber Neuropathy(SFN).

[Small Fiber Neuropathy Network @sfn_network]

If you or anyone you know may have or has been already diagnosed with Small Fiber Neuropathy(SFN), we are waiting to hear from you! #neuropathy #smallfiberneuropathy #

https://t.co/j3e4RngKLO

[Small Fiber Neuropathy Network @sfn_network]

#SFN can be caused by about six different conditions - but in about 50% of cases, the cause remains unknown (idiopathic). Not having answers is frustrating, but it doesn't make your symptoms any less real or valid.
Find support: https://t.co/f1RKqHasum
#NeuropathySupport #SFN

[Small Fiber Neuropathy Network @sfn_network]

Pacing is key with #SFN. That's breaking tasks into smaller chunks and resting between activities. It's not giving up, or being a failure, or your body working against you.... it's working to understand the body you live in at its most authentic level. Join the discussion below!

[Small Fiber Neuropathy Network @sfn_network]

Temperature sensitivity is one of the most frustrating SFN symptoms. Your feet may burn but feel cold to the touch. This misfiring of nerves is one key to small fiber damage. Join our community for support!

https://t.co/f1RKqHb0jU

#chronicpain #chronicillness #SFN #support

[Small Fiber Neuropathy Network @sfn_network]

You are not invisible. 💙 Living with SFN is isolating. The pain is real, but no one else can see it. You've been dismissed. Misunderstood. But there's a community here that gets it. We see you. Join us 🧡
https://t.co/f1RKqHb0jU
#SFN #SmallFiberNeuropathy #ChronicPain

[Small Fiber Neuropathy Network @sfn_network]

Managing #SFN is a marathon, not a sprint. Be patient with yourself as you and your medical team find what works. Small improvements matter. Your efforts to advocate for your health are valid and important. 💙And don't forget, there is community out there through us. See our pinned posts to join our discord.
#SmallFiberNeuropathy, #Neuropathy, #ChronicPain, #InvisibleIllness, #ChronicIllness, #RareDisease, #PatientAdvocacy, #PeripheralNeuropathy

[Small Fiber Neuropathy Network @sfn_network]

We're here to support the #SmallFiberNeuropathy community through education, connection, and advocacy. New to our network? Drop a comment and introduce yourself! #SFN #PatientAdvocacy,#SmallFiberNeuropathy, #Neuropathy, #ChronicPain, #InvisibleIllness, #ChronicIllness, #RareDisease, #PatientAdvocacy, #PeripheralNeuropathy

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

You know what else is NOT #FND? The Havana syndrome. Many neurologists argued that Havana syndrome was FND, aka hysteria, aka there was no real underlying pathology there. They were all wrong. Havana syndrome is not FND, and neither are #LongCOVID, #Dysautonomia or #MECFS.‼️

[Thea 🐾 @nyaathea]

@sfn_network @Simon_Hypixel this

[BethBPersist🏳️‍🌈 ✍️😷💉 ☣️ @BethH_persist]

@quarecuttie Small Nerve Fiber Neuropathy
“Symptoms of sensory small fiber neuropathy include numbness, hypersensitivity, and spontaneous painful or annoying sensations called paresthesias.”

https://t.co/PtXmoH15u6

[DiscoverMedNews @DiscMedNews]

@Yash25571056 Patients diagnosed with a new-onset small fiber neuropathy (SFN) and post-acute/long COVID suffered from symptoms of neuropathy such as numbness, paresthesia, and allodynia.

https://t.co/kPQg1hpoN7

[°✿˚E𝕣i𝕜a𝕜a⋆˚✿˖° @Erikaka86]

@sfn_network @Simon_Hypixel Strongly agreed. Cat ears should work as an ears variant, not hair

[Simon @Simon_Hypixel]

Gathered thousands of feedback inputs via social media and in-game feedback form, made plans to address most of them, lots of QoL/fixes/quick wins in the pipeline already! Staying busy.

I've also asked the art team for lots of new avatar options. Expanding the art team ASAP!

[Small Fiber Neuropathy Network @sfn_network]

@Simon_Hypixel Nice. Tell them to add a proper Cat Ears and Cat Tail instead of a beanie or strange hair.. 😋

[Small Fiber Neuropathy Network @sfn_network]

@Simon_Hypixel Fix the Multiplayer to be easier to join. It's really bad right now.

[Small Fiber Neuropathy Network @sfn_network]

@elonmusk I'm sorry he betrayed you. I think we need more Love, Communication and Compromise. How about you?

I'd like to see the Elon Musk back that we were excited to see on Big Bang Theory, the Dreamer that wants his Son to see Mars. We want to see it too... 🫂💜

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

2/🧵
In no particular order, here is
1⃣ Dr. Peter Novak and his group showed in an open-label study that long-term high-dose IVIG is more effective for autoimmune autonomic and sensory small fiber neuropathy than the usual care.
https://t.co/Bt0ikDq5ar

[ArianeK 💜 #Care4Complex (she/her) @arianek]

See also: doctors (including neurologists!) desperately need to be retrained on how to spot, evaluate, and treat post-viral inflammatory Small Fiber and Autonomic Neuropathy.

Inflammatory/Autoimmune SFN is also what’s driving a massive portion of the POTS and #Dysautonomia happening in a#LongCovid, as it has been known to do with other viruses for decades.

It’s treatable with immunotherapy like IVIG, plasma exchange, and the new #FcRN inhibitor class of meds including #Vyvgart, and early treatment can prevent more severe illness and permanent nerve damage.

#Care4Complex

[Small Fiber Neuropathy Network @sfn_network]

@SandyofCthulhu I'm so sorry you had to lose your brother this way. We definitely need change. The auto assumption that people are addicts is inhibiting the proper diagnosis and treatment of conditions like these.

[Small Fiber Neuropathy Network @sfn_network]

@SuddenKebab We need PS1/PS2/GameCube style games right now. Don't doubt yourself and keep up the passion! 😀

[Small Fiber Neuropathy Network @sfn_network]

@Piokou Just saw this on YouTube. Maple Story Style without Microtransactions sounds wonderful! Please consider adding Online Co-op for at least 1 other player. 🙂