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#fibromyalgia — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #fibromyalgia, aggregated by home.social.

  1. Fibro thoughts
    There’s a lot of self blame out there about this awful disease or “syndrome” as my pain doc put it.

    “it’s your bodies reaction to trauma you never delt with.”
    Way to victim blame it’s essentially saying it’s your own fault

    Meditate and it will get easier and the pain will ease.
    Look I get the brain body stress make everything worse link, for my AUDHD ass it doesn’t work I meditate a lot buuut it doesn’t make the flares lessen, when existing and moving in the world causes the nervous system to explode how could it.

    Here we’ll give you this gabapentin and that will lessen the nerve signals.

    That shit is bad yeah it works for a while then it’s less and less effective I’m coming off it now they don’t tell you you develop dependence (hooked) and tapering HURTS nor do they tell you it completely kills sexual desire and mutes the fuck out of your brain oh also yeah you’ll get dementia.
    But they won’t prescribe opioids because you’ll get hooked ??? Wtf 🤬

    Meg: rant over

    #Fibromyalgia

  2. Fibro thoughts
    There’s a lot of self blame out there about this awful disease or “syndrome” as my pain doc put it.

    “it’s your bodies reaction to trauma you never delt with.”
    Way to victim blame it’s essentially saying it’s your own fault

    Meditate and it will get easier and the pain will ease.
    Look I get the brain body stress make everything worse link, for my AUDHD ass it doesn’t work I meditate a lot buuut it doesn’t make the flares lessen, when existing and moving in the world causes the nervous system to explode how could it.

    Here we’ll give you this gabapentin and that will lessen the nerve signals.

    That shit is bad yeah it works for a while then it’s less and less effective I’m coming off it now they don’t tell you you develop dependence (hooked) and tapering HURTS nor do they tell you it completely kills sexual desire and mutes the fuck out of your brain oh also yeah you’ll get dementia.
    But they won’t prescribe opioids because you’ll get hooked ??? Wtf 🤬

    Meg: rant over

    #Fibromyalgia

  3. Fibro thoughts
    There’s a lot of self blame out there about this awful disease or “syndrome” as my pain doc put it.

    “it’s your bodies reaction to trauma you never delt with.”
    Way to victim blame it’s essentially saying it’s your own fault

    Meditate and it will get easier and the pain will ease.
    Look I get the brain body stress make everything worse link, for my AUDHD ass it doesn’t work I meditate a lot buuut it doesn’t make the flares lessen, when existing and moving in the world causes the nervous system to explode how could it.

    Here we’ll give you this gabapentin and that will lessen the nerve signals.

    That shit is bad yeah it works for a while then it’s less and less effective I’m coming off it now they don’t tell you you develop dependence (hooked) and tapering HURTS nor do they tell you it completely kills sexual desire and mutes the fuck out of your brain oh also yeah you’ll get dementia.
    But they won’t prescribe opioids because you’ll get hooked ??? Wtf 🤬

    Meg: rant over

    #Fibromyalgia

  4. Fibro thoughts
    There’s a lot of self blame out there about this awful disease or “syndrome” as my pain doc put it.

    “it’s your bodies reaction to trauma you never delt with.”
    Way to victim blame it’s essentially saying it’s your own fault

    Meditate and it will get easier and the pain will ease.
    Look I get the brain body stress make everything worse link, for my AUDHD ass it doesn’t work I meditate a lot buuut it doesn’t make the flares lessen, when existing and moving in the world causes the nervous system to explode how could it.

    Here we’ll give you this gabapentin and that will lessen the nerve signals.

    That shit is bad yeah it works for a while then it’s less and less effective I’m coming off it now they don’t tell you you develop dependence (hooked) and tapering HURTS nor do they tell you it completely kills sexual desire and mutes the fuck out of your brain oh also yeah you’ll get dementia.
    But they won’t prescribe opioids because you’ll get hooked ??? Wtf 🤬

    Meg: rant over

    #Fibromyalgia

  5. Fibro thoughts
    There’s a lot of self blame out there about this awful disease or “syndrome” as my pain doc put it.

    “it’s your bodies reaction to trauma you never delt with.”
    Way to victim blame it’s essentially saying it’s your own fault

    Meditate and it will get easier and the pain will ease.
    Look I get the brain body stress make everything worse link, for my AUDHD ass it doesn’t work I meditate a lot buuut it doesn’t make the flares lessen, when existing and moving in the world causes the nervous system to explode how could it.

    Here we’ll give you this gabapentin and that will lessen the nerve signals.

    That shit is bad yeah it works for a while then it’s less and less effective I’m coming off it now they don’t tell you you develop dependence (hooked) and tapering HURTS nor do they tell you it completely kills sexual desire and mutes the fuck out of your brain oh also yeah you’ll get dementia.
    But they won’t prescribe opioids because you’ll get hooked ??? Wtf 🤬

    Meg: rant over

    #Fibromyalgia

  6. Morning cuties love you,
    I think the Wales holiday broke me 😢 this is the longest recovery I’ve had I still have no spoons and too much pain for the 5th day on the trot

    Anyway hump day hope today contains only small sleeping policeman and nothing difficult for you.

    Today’s plan, nope not doing today, I’m going to disassociate in bed with meds and a hot chocolate.

    #Fibromyalgia #hEDS

  7. Morning cuties love you,
    I think the Wales holiday broke me 😢 this is the longest recovery I’ve had I still have no spoons and too much pain for the 5th day on the trot

    Anyway hump day hope today contains only small sleeping policeman and nothing difficult for you.

    Today’s plan, nope not doing today, I’m going to disassociate in bed with meds and a hot chocolate.

    #Fibromyalgia #hEDS

  8. Morning cuties love you,
    I think the Wales holiday broke me 😢 this is the longest recovery I’ve had I still have no spoons and too much pain for the 5th day on the trot

    Anyway hump day hope today contains only small sleeping policeman and nothing difficult for you.

    Today’s plan, nope not doing today, I’m going to disassociate in bed with meds and a hot chocolate.

    #Fibromyalgia #hEDS

  9. Morning cuties love you,
    I think the Wales holiday broke me 😢 this is the longest recovery I’ve had I still have no spoons and too much pain for the 5th day on the trot

    Anyway hump day hope today contains only small sleeping policeman and nothing difficult for you.

    Today’s plan, nope not doing today, I’m going to disassociate in bed with meds and a hot chocolate.

    #Fibromyalgia #hEDS

  10. Morning cuties love you,
    I think the Wales holiday broke me 😢 this is the longest recovery I’ve had I still have no spoons and too much pain for the 5th day on the trot

    Anyway hump day hope today contains only small sleeping policeman and nothing difficult for you.

    Today’s plan, nope not doing today, I’m going to disassociate in bed with meds and a hot chocolate.

    #Fibromyalgia #hEDS

  11. I’m having a #fibromyalgia flare up and I’m sure there’s some #arthritis in the mix too. The brain fog has me feeling lost creatively. And I wanted to work all day today.

  12. 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. ❤️‍🩹

    arendleejessurun.bandcamp.com/

  13. 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. ❤️‍🩹

    arendleejessurun.bandcamp.com/

  14. 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. ❤️‍🩹

    arendleejessurun.bandcamp.com/

  15. 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. ❤️‍🩹

    arendleejessurun.bandcamp.com/

  16. 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. ❤️‍🩹

    arendleejessurun.bandcamp.com/

  17. @Kaonarose I can empathise. Had to go out to get some food yesterday and today the pain has been so bad I can hardly bear to move. Sending gentle 🫂
    #Fibromyalgia

  18. @Kaonarose I can empathise. Had to go out to get some food yesterday and today the pain has been so bad I can hardly bear to move. Sending gentle 🫂
    #Fibromyalgia

  19. @Kaonarose I can empathise. Had to go out to get some food yesterday and today the pain has been so bad I can hardly bear to move. Sending gentle 🫂
    #Fibromyalgia

  20. @Kaonarose I can empathise. Had to go out to get some food yesterday and today the pain has been so bad I can hardly bear to move. Sending gentle 🫂
    #Fibromyalgia

  21. It's so frustrating that I can't even go out for an hour without causing a fibro flare. I had to do some errands yesterday (couldn't do them all because of pain), and I'm paying for it today. Some days I get really sick of living in this body. #Fibromyalgia #ChronicPain

  22. It's so frustrating that I can't even go out for an hour without causing a fibro flare. I had to do some errands yesterday (couldn't do them all because of pain), and I'm paying for it today. Some days I get really sick of living in this body. #Fibromyalgia #ChronicPain

  23. It's so frustrating that I can't even go out for an hour without causing a fibro flare. I had to do some errands yesterday (couldn't do them all because of pain), and I'm paying for it today. Some days I get really sick of living in this body. #Fibromyalgia #ChronicPain

  24. It's so frustrating that I can't even go out for an hour without causing a fibro flare. I had to do some errands yesterday (couldn't do them all because of pain), and I'm paying for it today. Some days I get really sick of living in this body. #Fibromyalgia #ChronicPain

  25. 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

  26. 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

  27. 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

  28. 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

  29. 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

  30. 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

  31. 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

  32. 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

  33. 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

  34. Tehosipa Burana 600 kun tauti aluillaan. Eilen dedä duhaided, naamaa kuumotteli, posket hehkui, olo oli tavallista kummallisempi, ( ja luulosairas tietenkin kuvitteli jo taas vaikka ja mitä..).
    Lääke naamaan ja helotus alkoi hiipua..

    Nukutun yön jälkeen olotila palautunut semmoseks mikä itselle ominaista.

    Fibromyalgikolla jyllää jatkuvasti jotain kropassa ja valppaana saa olla. Ehkä toisen lonkan vihlominen ja nilkan kuumottelu enteili..

    Sitä kun on entisajan lapsi, -50-60-luvuilla painattanut maalaismiljöössä ulkoleikeissä, eikä ollut ensimmäisten ~10v aikana juoksevaa vettä, niin likaisin käsin ulkohuusistakin jatkui leikit.. Kesällä syötiin retiisit ja porkkanat kasvimaasta pesemättä kunnolla.

    Voinut saada jersiniabakteeria, vaikka mitä. Lääkärissä ei juurikaan käyty, tai kutsuttu lääkäriä kotikäynnille.

    Psyykkeestä puhumattkaan.. Jatkuvaa kiusaamista. Kuormittava lapsuus, uniongelmainen jo lapsena.

    "Yhdeksi fibromyalgian syyksi on epäilty pitkäaikaisen stressin aiheuttamaa pahaa mieltä ja ahdistusta. Stressin lähteenä voi olla toistuva ja jatkuva ulkoinen ärsyke, kuten stressiä aiheuttava työ, kiire, liikenne, melu, ihmissuhteet, rahahuolet tai työttömyys. Fibromyalgiaa sairastavilla onkin todettu samanlaisia hormonierityksen muutoksia kuin pitkäaikaisesta stressistä kärsivillä ihmisillä. Vielä ei kuitenkaan tiedetä, onko stressi fibromyalgian syy vai onko stressi seuraus pitkäaikaisesta ja kivuliaasta taudista.

    Unen vähäisyys tai huonolaatuisuus on tavallista fibromyalgiaa sairastavilla. Syvän unen aikana aivolisäke erittää kasvuhormonia, jolla on anabolista eli kudoksia vahvistavaa vaikutusta. Jos syvä uni puuttuu, kasvuhormonia ei pääse erittymään. Sairastuneilla on todettu kasvuhormonin erityksen vähenemistä. Fibromyalgian kaltaisia oireita on pystytty saamaan aikaan laboratorio-olosuhteissa, kun koehenkilöiden normaalia unta on häiritty.

    Stressin, unihäiriön tai jonkin muun syyn aiheuttamat hormonierityksen häiriöt voivat vaikuttaa keskushermostoon siten, että kivun kokeminen voimistuu. Sairastuneet kokevat usein henkilökohtaiset ja sosiaaliset paineet ruumiillisina oireina, erityisesti kipuna."

    -Tulikin mieleeni tuosta kasvuhormonista se että olen lapsuusperheeni pienikokoisin.
    Oma lapseni nukkui todella hyvin ja on minua paljon pidempi/kookkaampi.

    Vaikuttaako vauvana sairastettu tuhkarokko?

    #fibromyalgia

    reumaliitto.fi/reuma-aapinen/f

  35. Busy day today ahead of a busy weekend.
    I have been storing my spoons and doing my best to rest.
    7hr round trip this afternoon to collect C2 from Heathrow.
    2nd viewings on our house tomorrow 🤞
    Then 6hr round trip Sunday for 2nd viewing on house we like.🤞

    I know I can get it done, but I know next week will be tricky for me.

    #spoonie #spoons #chronicillness #autoimmune #fibromyalgia

  36. Busy day today ahead of a busy weekend.
    I have been storing my spoons and doing my best to rest.
    7hr round trip this afternoon to collect C2 from Heathrow.
    2nd viewings on our house tomorrow 🤞
    Then 6hr round trip Sunday for 2nd viewing on house we like.🤞

    I know I can get it done, but I know next week will be tricky for me.

    #spoonie #spoons #chronicillness #autoimmune #fibromyalgia

  37. Busy day today ahead of a busy weekend.
    I have been storing my spoons and doing my best to rest.
    7hr round trip this afternoon to collect C2 from Heathrow.
    2nd viewings on our house tomorrow 🤞
    Then 6hr round trip Sunday for 2nd viewing on house we like.🤞

    I know I can get it done, but I know next week will be tricky for me.

    #spoonie #spoons #chronicillness #autoimmune #fibromyalgia

  38. Busy day today ahead of a busy weekend.
    I have been storing my spoons and doing my best to rest.
    7hr round trip this afternoon to collect C2 from Heathrow.
    2nd viewings on our house tomorrow 🤞
    Then 6hr round trip Sunday for 2nd viewing on house we like.🤞

    I know I can get it done, but I know next week will be tricky for me.

    #spoonie #spoons #chronicillness #autoimmune #fibromyalgia

  39. Busy day today ahead of a busy weekend.
    I have been storing my spoons and doing my best to rest.
    7hr round trip this afternoon to collect C2 from Heathrow.
    2nd viewings on our house tomorrow 🤞
    Then 6hr round trip Sunday for 2nd viewing on house we like.🤞

    I know I can get it done, but I know next week will be tricky for me.

    #spoonie #spoons #chronicillness #autoimmune #fibromyalgia

  40. New from Spain:

    Efficacy of Low-Dose Naltrexone in Women With Fibromyalgia Syndrome: A 12-Month Randomised, Double-Blind, Placebo-Controlled...trial

    onlinelibrary.wiley.com/doi/10

    #LDN #Fibromyalgia #ChronicPain

  41. New from Spain:

    Efficacy of Low-Dose Naltrexone in Women With Fibromyalgia Syndrome: A 12-Month Randomised, Double-Blind, Placebo-Controlled...trial

    onlinelibrary.wiley.com/doi/10

    #LDN #Fibromyalgia #ChronicPain

  42. New from Spain:

    Efficacy of Low-Dose Naltrexone in Women With Fibromyalgia Syndrome: A 12-Month Randomised, Double-Blind, Placebo-Controlled...trial

    onlinelibrary.wiley.com/doi/10

    #LDN #Fibromyalgia #ChronicPain

  43. New from Spain:

    Efficacy of Low-Dose Naltrexone in Women With Fibromyalgia Syndrome: A 12-Month Randomised, Double-Blind, Placebo-Controlled...trial

    onlinelibrary.wiley.com/doi/10

    #LDN #Fibromyalgia #ChronicPain

  44. New from Spain:

    Efficacy of Low-Dose Naltrexone in Women With Fibromyalgia Syndrome: A 12-Month Randomised, Double-Blind, Placebo-Controlled...trial

    onlinelibrary.wiley.com/doi/10

    #LDN #Fibromyalgia #ChronicPain

  45. I'm continuing to offer my latest album for free for #DisabilityPrideMonth!

    I live with #longCOVID, #fibromyalgia, and #MECFS.

    I'm also autistic and suffer major depression.

    I wrote this song grappling with what resistance and activism might look like given the limits my disabilities impose. I hope it may offer you some respite as we fight an increasingly cruel system.

    arendleejessurun.bandcamp.com/

  46. I'm continuing to offer my latest album for free for #DisabilityPrideMonth!

    I live with #longCOVID, #fibromyalgia, and #MECFS.

    I'm also autistic and suffer major depression.

    I wrote this song grappling with what resistance and activism might look like given the limits my disabilities impose. I hope it may offer you some respite as we fight an increasingly cruel system.

    arendleejessurun.bandcamp.com/

  47. I'm continuing to offer my latest album for free for #DisabilityPrideMonth!

    I live with #longCOVID, #fibromyalgia, and #MECFS.

    I'm also autistic and suffer major depression.

    I wrote this song grappling with what resistance and activism might look like given the limits my disabilities impose. I hope it may offer you some respite as we fight an increasingly cruel system.

    arendleejessurun.bandcamp.com/

  48. I'm continuing to offer my latest album for free for #DisabilityPrideMonth!

    I live with #longCOVID, #fibromyalgia, and #MECFS.

    I'm also autistic and suffer major depression.

    I wrote this song grappling with what resistance and activism might look like given the limits my disabilities impose. I hope it may offer you some respite as we fight an increasingly cruel system.

    arendleejessurun.bandcamp.com/

  49. I'm continuing to offer my latest album for free for #DisabilityPrideMonth!

    I live with #longCOVID, #fibromyalgia, and #MECFS.

    I'm also autistic and suffer major depression.

    I wrote this song grappling with what resistance and activism might look like given the limits my disabilities impose. I hope it may offer you some respite as we fight an increasingly cruel system.

    arendleejessurun.bandcamp.com/

  50. 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.