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#fibro

2 messages2 participants0 message aujourd’hui
Public *
illmarks

It’s my birthday, but I now view time by different measures

I crashed so this is belated, but for my birthday/Stonewall anniversary ask, I received over 40 pro-mask messages of people wearing N95 or similar respirators! I think there are even more, I lost count a few times. Thank you SO much to everyone who participated and helped take care of themselves and their communities.

https://www.illmarks.com/2025-6-28-its-my-birthday-but-i-now-view-time-by-different-measures/

A human figure on a manila bookmark wears a party hat and an N95 respirator (mask). There are three squares hovering over the body, one at the shoulder with pink and purple is labeled 2.5 Years & Infection 1. One over the lower abdomen in darker purple, shows a partial GI system, labeled 1.8 Years & Dx (diagnosed) Long Covid, the third one is over the leg and knee, is in purple-green shows soft curving green-blue lines between the body and the edge of a purple virus. It is labeled 1.75 Years & "How long I have kept myself safe from Covid infections which will further degrade my health." Their body is outlined in a mix of pink and blue green, and they have a tattoo on their forearm, and wear a prosthetic-orthotic. Metal screws and plates are drawn on them as well.
#art#chronicIllness#CleanAir
Public
Tom Kindlon

Some low-energy products for washing one's hair

From: May 2025 Caregiver Call Summary

Links:
walgreens.com/store/c/walgreen

medline.com/product/ReadyBath-

walgreens.com/store/c/cleanis-

cvs.com/shop/cvs-health-pre-mo

Hashtags:
@chronicillness
@spoonies
@mecfs
#ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #POTS @pots @fibromyalgia
#Fibromyalgia #Fibro #FMS
#chronicillness
#chroniclife
#Spoonielife
#ChronicIllnesses
#Spoonies
#Spoonie
#ChronicallyIll

Washing one’s hair if one has energy and arm limitations can be very difficult. A call participant mentioned Shampoo Caps that one places over the hair, rubs in, removes the cap and hair is cleaned – no rinsing needed. Some of these are available with fragrance free shampoo (They said they tried both of these. The Medline was what the hospital provided for their partner.) https://www.walgreens.com/store/c/walgreens-rinse-free-shampoo-cap/ID=prod6293401-product https://www.medline.com/product/ReadyBath-RinseFree-Shampoo-and-Conditioning-Caps/Z05-PF66410?question=Shampoo%20cap& They also told us there are wash gloves with similar shampoo – though they haven't tried this. https://www.walgreens.com/store/c/cleanis-aqua-pre-moistened-wash-glove,-shampoo/ID=prod6187681-product https://www.cvs.com/shop/cvs-health-pre-moistened-no-rinse-shampoo-glove-prodid-920210?skuId=920210&cgaa=QWxsb3dHb29nbGVUb0FjY2Vzc0NWU1BhZ2Vz&gStoreCode=R10694&gQT=1
Public
Tom Kindlon

🧵
Medscape (widely read by health professionals):

‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms

medscape.com/viewarticle/sympt
(may require free registration)

Thought this was good & interesting.

@chronicillness
@spoonies
#lupus @lupus #neisvoid
#chronicillness #hiddenillness #invisibleillness #ChronicIllnesses
#Spoonies #ChronicallyIll
#POTS @pots #IBS @ibs fibromyalgia@a.gup.pe
#Fibromyalgia #Fibro #FMS @longcovid #LongCovid @mecfs #MEcfs
1/

Medscape Medical News > Features ‘Symptom Invalidation’ in Clinically Uncertain Diagnoses Can Leave Lasting Mental Health Harms Tara Haelle June 03, 2025
Public
FibroJedi

You know what the depressing/distressing thing about seeing your tweets flash past while @cyd migrates them to BlueSky?

That the care and treatment of #Fibromyalgia is no different in 2025 than it was in 2018. It's why I have days/weeks of just "Survival Mode", why I can't do what I want to, or get content or stories done when I hope to. Why doing literally everything - or nothing - hurts.

"Chronic" means 3 months+. I'm a couple of decades from it starting...

Aug 3, 2018, 6:23 PM: Huge #Fibromyalgia #pain spike now and family home soon. So I think I'll be a wee bit quieter on Twitter this evening and try to have family time and just play as/when family time allows. And hope my meds work. Here's a nice peaceful shot of Angmar in the mean time.
#ChronicPain#Fibro
Public
Tom Kindlon

Postacute COVID-19 syndrome & fibromyalgia syndrome are associated with anti-satellite glial cell IgG serum autoantibodies but only fibromyalgia syndrome serum-IgG is pronociceptive

journals.lww.com/pain/fulltext

Screenshot from Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #Fibrositis

PAIN Postacute COVID-19 syndrome and fibromyalgia syndrome are associated with anti-satellite glial cell IgG serum autoantibodies but only fibromyalgia syndrome serum-IgG is pronociceptive — Berwick, Richard J. et al. "as RC2 (recovered) participants, reporting no pain or fatigue, demonstrated equally strong staining, anti-SGC staining titre alone seems insufficient to explain symptoms in PACS. Instead, high staining in the recovered PACS group likely indicates a persistent immunological imprint from recent infection (2-6 months prior)."
Public
Tom Kindlon

From ME Research UK:

Symptom invalidation (also known as medical gaslighting) may lead to diagnostic delays for people with complex chronic illnesses like #MECFS finds a study published in the journal "American Psychological Association". Read more: bit.ly/451riym

#chronicillness #invisibleillness @chronicillness @spoonies #spoonies #spoonie @mecfs @fibromyalgia #fibromyalgia #fibro #longcovid @longcovid #hiddenillness @pots #pots

`Symptom invalidation' by health professionals may lead to delays in diagnosis. Symptom invalidation - medical gaslighting -occurs when a medical professional invalidates a patients symptoms or experiences. Research has shown for people with complex chronic illnesses like ME/CFS this may lead to: Self- Shame and doubt guilt Negative self-esteem Depression Loss of Healthcare trust burn out Feeling let down ) Healthcare related anxiety or trauma Under-reporting of Avoidance of symptoms healthcare Diagnostic delays Bontempo et. al., American Psychological Association (2025) RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942
Public
:neuro: Pixy's Journey :v_bi:

It's one of those nights again... :parrot_sad: My #AuDHD is "fighting" with my #Fibro again... If that makes sense... 🤔

My body is aching. My mind is wired and wants to do all the things that my body can't do right now. I feel so tired, but my brain isn't letting me relax. It's trying to push me into getting active. But, my brain is also giving me a headache. All I want to do is lay down, watch TV and doze a bit. But my brain keeps telling me that I am being lazy and I should keep going.

I just took one of the extra meds that I have, and hope that it can calm my mind. I will need to get some more of these before the surgery, so that I have a few extra, should I need them and not be able to just get them. I have a few left. And I am still grateful that the GP took me seriously and gave me a chance to try this out. It's not taking all the pressure off, but... It helps me to relax a bit better when I need it.

I know that some exercise usually helps me to feel better. But, trying to get exercises in when my brain is making my head hurt, it's never a good combination. So now, I hope that my pill will kick in, let me relax, calm my mind... And then I may be able to get some exercises going, to help me feel a bit better physically as well.

I did manage to pause the fitness subscription for the first 4 weeks after the surgery. I can add a max of 4 more weeks to that, if needed, and then my "freezes" are up for the year. But it should save me some euros when I can't use the fitness. 😊

Let's put away the tablet and hope for the pill to do some magic for me... I already started one of my "feel good" series, so that usually helps a bit. Fingers crossed 🤞🏻

Catch you all later folks! Thanks for hanging in there with me.

:pixy_party: 💜 🍀 🐾

#PixysJourney
Public
Tom Kindlon

🧵
From Chronic Living Therapy e-newsletter:

"Round up of articles spotted online in March/April 2025 that focus on the experiences of people with ‘psychologised’ or hard to diagnose health conditions."

chroniclivingtherapy.com/1-els

@chronicillness
@spoonies @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PosturalOrthostaticTachycardiaSyndrome #POTS @pots #OI @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM
#chronicillness #chroniclife #spoonie

1/

Spotted in the news / online Read any articles or research of interest to therapists and counsellors? Please share them with us! We've rounded recent ones up up and added them to our website. Here's what we have from March and April 2025: Physiology for Psychology by Emily Cochrane of POTSUK on how this physiological condition gets misinterpreted and treated as 'anxiety'. #ThereforME published a piece by Ella Barnard who is lost for words trying to describe the reality of ME/CFS. The Smithsonian published an excellent article about how mental illness has become a scapegoat diagnosis for many women with serious physical health problems. And a fantastic piece of research from Australia looking at young people with ME/CFS and exploring how they face challenges building independence and forming their own identities when their paths diverge so much from those of their peers. Can't recommend this one enough! Read our roundup of March/April publications: https://chroniclivingtherapy.com/1-elsewhere-web/
Public
Tom Kindlon

"'Twirl With Me, Mama!' by Melissa Beardall & Rebecca Nichols is a moving children’s book that shines a compassionate light on families living with #chronicillness ."

hazymaybooks.com/about-the-boo

See next post for more information on this book

@chronicillness
@spoonies #parenting #chroniclife #ChronicPain #Spoonielife
#hiddenillness #invisibleillness #ChronicIllnesses #Spoonies #Spoonie
#ChronicallyIll @mecfs
#MEcfs @longcovid
#LongCovid @fibromyalgia
#Fibromyalgia #Fibro #FMS #FM #POTS @pots

1/

Drawing of a young girl using a stethoscope on her mother who is in bed. Has the following text: "Mama says she sick. She doesn't look sick to me. She isn't coughing or sneezing like I do when I'm sick. "You need to go to the doctor so you can get better," I say. But mama isn't getting better.
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