#fibromyalgia

I am exhausted and limp and overheating, but I have finally taken a SHOWER. For days, our main bathroom has been inaccessible due to mold remediation, and I wasn't up to cleaning the dead bugs out of the shower in the backhouse. Today there was a final application of chemicals, and when I came back home, the vapors had dissipated enough for me to finally spend a few minutes back there. Now I'm damp and clean and moisturized and wearing pajamas for the first time in a week. Things will really be better when we can sleep in our bed instead of on living room furniture, but this feels like a nice step. Hey disease twins, is it POTS that makes you want to puke and pass out after a shower? Because something sure does. #ChronicIllness #IIH #POTS #Fibromyalgia #migraines #DiseaseTwins

Schmerzen ade, dank Protein-Schalter? 🥲 Gestern Abend habe ich in der Arte-Mediathek eine Doku zu aktuellen Forschungsergebnissen entdeckt. Vor allem die Forschung zu einem Protein, was Schmerzen „an- und ausschalten“ kann, scheint vielversprechend. Die im ersten Abschnitt vorgestellte junge Frau hat mich dabei sehr beeindruckt. Hoffentlich gehen ihr Stärke und Kraft nie verloren. arte.tv/de/videos/131021-005-A… Verfügbar ist das Video bis 27.02.2027 #Schmerzen #Pain #ChronischeSchmerzen #ChronicPain #Fibromyalgie #Fibromyalgia #CRPS

Fibromyalgia is a chronic disorder characterized by widespread pain, fatigue, and cognitive difficulties, which a landmark study has now definitively linked to specific biological and genetic variations. Researchers identified 26 distinct genomic regions associated with the condition, proving that it stems from neurobiological differences rather than purely psychological origins. #GenomicEpidemiology #MolecularGenetics #Neuroscience #Fibromyalgia #sflorghttps://www.sflorg.com/2026/07/geno07282601.html

ICYMI, you can still get my latest album for free for #DisabilityPrideMonth. This album was mostly recorded in the summer of 2025, when not on bed-rest for #longCOVID, #MECFS, #fibromyalgia. It's a response to the rising christian nationalism/dominionism in the US and the world. I was a worship leader for many years. I left that world for how it treated me and other queer, disabled folks. If you grew up in the church and have been burned, this one's for you. ❤️‍🩹 https://arendleejessurun.bandcamp.com/album/the-tower-of-babel-falls

Baby Yoda neck pillow(with a hood), and what a game changer for my fibromyalgia! I actually managed some half decent sleep😁 Hooray! #fibromyalgia #pillow #babyyodadada #babyyoda #grogu

The #Finch app said I should "doodle a quick self-portrait" today. I don't like looking at my face, and I suck at drawing human faces. So I did... Depictions instead. #depression #indecision #Fibromyalgia #ChronicPain #doodle #sketch

Hey spoonie hivemind! Are there side effects/onboarding issues I should watch out for starting low dose naltrexone? Any other advice/observations/tips also welcome. I assumed I could just start it in the background and mostly ignore, wait for slow improvements. But wonder if part of my symptom buffet has shifted (now getting mild headaches, etc), it's so hard to tell with *waves at everything* #lowDoseNaltrexone #fibromyalgia #MEcfs #longCovid #spoonies

IN OTHER LIFE AFTER #FuckCancer NEWS am in massive pain on my #mastectomy side and am literally exhausted from the pain. i already had to deal with #fibromyalgia but when the #lymphedema decides to hit hard, it takes me out. so if you are also suffering from chronic pain, loudly or in silence, i see you. my doctors have been amazing but i wish the whole USA health care culture took pain seriously. there has to be a better way than leaving these side effects to chance.

Fibromyalgia is such a pain in the ass. #fibromyalgia

After 2 years working to be able to walk properly again and getting myself off double forearm crutches, and then 4 years being essentially bedridden except for absolute minimal basics of daily life(and some days not even that), yesterday I moved the tv back into the lounge room. Finally feeling like I'm at the stage where I can sit and watch tv without expending too much energy, and still have ability to do other things. It's a big deal. Please clap. #fibromyalgia #chronicpain #chronicfatigue

@FibroJedi@gamepad.club the waiting and uncertainty between appointments is so exhausting on top of everything else. hoping the blood tests give you some useful answers and that the med tweak actually makes a difference this time. sending strength your way 💪 #fibromyalgia

Another day or so of disconnect, due to energy lows and #Fibromyalgia pain high. I managed to do a walk, and start reading the second Dragon book with NJ. Oh, and I'm still alive. I hate how much #chronicpain has affected either what I can do, or taken the desire to do things away, or sapped my energy so I'm just not up to doing them. It's beginning to feel to restricting now. I have to exercise for health and weight control, so can't channel that energy elsewhere either...

Just as I wasn't on here yesterday, a quick health update. I had my phone consultation with the doctor today. We have an easy first "tweak" of one of my pain meds that almost doubles it. That's our first experiment. BTW, that means getting through 250 tablets a month on /one/ of my meds. The second thing is I will have blood tests next week, to investigate whether there's a cause for my daily energy crashes, when not a lot has changed in life. I hate #fibromyalgia & all its evil little pals.

I got my dates mixed up. My medication review is next Wednesday, not tomorrow. Just have to survive another week of pointless high pain and no answers, and hope the doctors can advise medication changes. The pain is still pointless, but hopefully the plan can change. I've lost 1 stone of weight and doubled my physical activity since my last review, so they can't blame it on those two things. #fibromyalgia #fibro #chronicpain

Hey all, I'm in a really rough "place" with my #Fibromyalgia right now. Effectively my meds aren't...effective. They take a bit of the edge off the pain, but it's not enough. I've felt incapable for most of the weekend. I have a phone call with the doc on Wednesday to discuss my meds. I can't go on in this level of pain forever. #ChronicPain #FedUp

oon valvonut kankkualaselkäkivussa. kävin päivällä kitkalla (1,5 km) kaupassa ja sit illalla kävelin (3km)... kaikki ois luultavasti mänt hyvin jossen ois kävelly LIIAN REIPPAASTI mäkiä. MUTKU tuntui hyvältä kävellä reippaasti kerrankin, yleensä ei jaksa. 🤪 vasen kankku on kosketusarka. tekis mieli hieroa sitä ja panna pallo perseen alle ja mutjuttaa muttei voi. vasen puoli on mulla huonompi aina. johtunee siitä, et jalka lyhyempi ku pitäs tai mistä minä tiiän. sen tiiän, et #fibromyalgia on perseestä ja perseessä.

Oodi fibrolle Saatana Kun on kroppa paskana Toisinaan Tahtois vaan olla ja nauttia. Kipu ja väsymys On jatkuva elämys Miten niistä taukoa On se suuri kysymys Ei auta liikunta Ei itseä riuhtoa niskasta Olen kokeillut neuloja ihossa Kaiken maailman hoitoja Joista ei muuta kuin vaivoja Lääkärit kohottaa kulmia Paremmat huomaa turhautuneena Eivät enää välitä vaikka tarjoavat melkein huumeita Kunhan saisin helpotusta Pää on täynä höttöpilviä Vaikea on silloin keksiä Kuinka selvitä arjen pyörityksestä Muisti usein takkuaa Valuttaa kerma kakkua Vaikken perusta makeasta Ja sitten on vatsakin kuralla Usein saan tuntea Kuinka uisin nokkospuskassa Tai kompuroisin piikkiaidassa Ellen saa kuumasta puukosta Aamuna helppoja vuodessa Saan laskea yhden käden sormilla Joista toimii kunnolla vain pari hassua Joskus helpottaa vaivoja Kun istuu saunan lauteilla Leppoisissa löylyissä Välillä Olo on pian kuin krapulassa Ilman oluen makua Vaiva on korvien välissä sanoo osa kun käyn terveyskeskuksessa Psykiatrilla hoidetaan jo pään vaivoja ei niillä tekemistä fibron vaivoissa Psykiatri silti avuliaana Kulkee tutkimassa vaihtoehtoja Onnea on ymmärrys perheessä Tekee elämästä vähemmän perseestä Ei ainakaan niin syvältä Kuin voisi olla paskemmalla perheellä Töissäkin on ymmärrystä Auttaa myös kun on omaa myllerrystä Oppinut pienin keinoin hallitsemaan Melko hyvin sanoittamaan Vaikkei koskaan kokonaan Ja ootappa vaan Jos sattuu vaikka kuumetta nostamaan Tai mikä pahempaa Vatsatautia sairastamaan Siitä fibro vallan riemastuu Ei ole elämä reilua Täytyy mennä sillä pelillä Mitkä kortit muumilaaksossa intiaanit on kanootissa Soppa kauhassa Haistakoon fibro paskat vaan Minä poika jaksan porskuttaa Vaikka aina vähän vituttaa On elämässäni paljoa iloittavaa Ja Ihan periaattestakaan En voi muuta kuin paskalle nauraa Ja kuunnella Kuinka maailma muutenkin tulessa #runo #fibromyalgia #fibro