The Spoonie Network

my tiktok account was permanently banned in what is likely a move of disability suppression

i need some advice and idk where to go! basically i found of a spoonie on instagram (an internet friend) is really homophobic and it’s really hurt me😭 it really upsets me that everyone thinks she’s sweet and nice when she’s not. i just wish i new how to change her mind or i wish everyone knew, but i don’t want her to get hate... idk???

Hi! I’m about to start the autoimmune protocol diet and I was hoping to find some spoonies to talk to about it

also anyone with narcolepsy have tips on staying awake?

at people who have cataplexy, can you get it only in certain areas? i think i may have had a cataplexy attack but only my leg muscles stoppped (i fell but i could keep my torso and head up) and sometimes i’ll have muscle slackening where only my head/neck muscles fall (in this case my head will drop but i can still stand)

I have CRPS in my left foot and I struggle to do anything and everything. If anyone has a good treatment please let me know

Hello, I wanted to ask if you or any of your followers have experience with ivig treatment. I have POTS and a doctor suggested it to me, but I'm unsure if the side effects are worth it.

I hope this is ok if I post this here but if anyone has RA can you maybe help me answer a few questions? I was in the hospital last summer for 2 weeks with ridiculous tachycardia and some chest pain/ shortness of breath. They basically tested me for everything and then eventually sent me home with a diagnosis of pericarditis (inflammation around the lining of my heart) which I had a diagnosis of a month previous when I had a bad cold and a resting bpm of like 168. 1/2

I'm a Spoonie going through a break up, and all the stress and anxiety about it is making my health conditions flare up. My ex-partner wants to not talk and have space, whereas I want close and to end things on a nice note. Wanting the opposite things makes it so hard and he has always only done things his way! Do you have any tips for managing health problems during stress, or for dealing with a breakup? Sorry for the long post, and thank you for your blog 💛

Hi :0) So I’m suffering from near constant pain and exhaustion, with no real diagnosis. Any tips on how to keep my spirits up?

Hi! New to tumblr and wondering how many other spoonie nurses I can find. I live with SLE, fibromyalgia, and chronic migraines. I would love to connect with others that know the struggle!

Hi does anyone have any experience with cbd from hemp? (Hemp being industrial hemp and legal in all 50 states not the medical marijuana stuff) I suffer from neuropathy and am running out of options...

I have costochondritis from time to time. I usually put a heating pad on it when it's really bad. The best thing to do is to avoid lifting heavy things, because I find that makes it last longer. Otherwise, it should go away on its own within a few weeks to a couple months.