Tom Kindlon
2 days ago

StudyME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/ #CFS, #FM & #LongCOVID Research

"I know of at least two #MECFS studies that failed to get completed because they failed to find enough participants. That’s a horrible thing to have happen in a field that needs every research dollar it can get its hands on."

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME @longcovid
#PwLC #postcovid @fibromyalgia
#Fibromyalgia #Fibro #FMS

StudyME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/CFS, FM and Long COVID Research
We all know what the way out of diseases like ME/CFS, fibromyalgia, and long COVID is - it's more more research! Research studies, though, require participants, and finding people to participate in them can be one of the more costly and burdensome parts of an already very expensive process.

The Open Medicine Foundation, though, has found a way called StudyME to cut down those costs and accelerate and improve research studies by zinging people with these diseases to the researchers who are studying them. It's brilliant!

Want to make a difference with these illnesses? All it takes is about 5 minutes of your time. Check it out in

Study ME (Please!) The Open Medicine Foundation’s Project to Accelerate ME/CFS, FM and Long COVID Research
2 days ago

It’s been about 6 weeks since I got covid, and I still feel like shit.

My joints are the worst they’ve benn for a while, and the headaches are so bad. Also have a poorly cat to look after. I’m exhausted, so haven’t been posting/engaging much.

Being chronically ill, I’m used to living with pain, but nothing is helping this 😩

#Fibromyalgia #Fibro #Diabetes #ChronicFatigue #CFSME #CFS #ME #MentalHealthDisorders #Autistic #ADHD #AuDHD

5 days ago

#Covid Question:
I've had symptoms for about a week now. But it also could be a #fibro flareup or who knows what. Tests show negative but they seem to be pretty unreliable. Especially with the new version.
The most disturbing symptom is my head feels like it's been vacuumed out and there's just this empty slightly dizzy void left behind. Is that a symptom others have experienced?

Tom Kindlon
5 days ago

2-minute segment on (US) WFRV Green Bay TV

#Fibromyalgia or #CFS?

Tries to be sympathetic but somewhat flawed e.g. says fatigue rather than PEM is cardinal symptom of CFS & says "important to stay active" with video of person doing weights 🤦‍♂️

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @fibromyalgia
#Fibromyalgia #Fibrositis #Fibro #FMS #FM #Wisconsin

Paul-Gabriel Wiener
2 weeks ago

Ugh. I went to see a new pain doctor yesterday and I still ache from the exam.

"Does this hurt?" Yes. "Does this hurt?" Yes, but differently. "Does this hurt?" Can you give me a minute? I'm waiting for the pain from the last thing to subside. "Which hurts more? This or this?" I can't tell. The pain from the last thing is kind of overshadowing it.

I just moved my shoulder and the tender points he was poking at flared up again.

All that, and he had so little to offer. #NEISvoid #Fibro

I don't do well when the weather changes from summer to autumn.
Yesterday was not a good day.
Today is a new day. The sun is out.
I will put an extra layer on and see how I get on.
#fibromyalgia #fibro

Irish ME/CFS Association
2 weeks ago

Lunch & Learn – Virtual Event September 21

Topic: Stories: A Way to Share Hope & Connection

"These friendly sessions include a brief presentation by a participant, followed by break-out groups to discuss the "get to know you question." Individuals with ME/ #CFS, #FM, #LongCOVID and their supporters are invited"

13:30 EDT/18:30 in GB & Ireland
Find the time in your time zone here:

#MEcfs #PwME @longcovid
#PwLC #postcovid #Fibro #FMS


"Lunch & Learn Virtual Event September 21 11:30 am 1:30 pm MDT Free Lunch & Learn A Free BHC Community Event Bateman Horne Center RESEARCH CLINICAL  CARE EDUCATION"
Tom Kindlon
3 weeks ago

Full text just released for this from Spain:

Increased gut permeability & bacterial translocation are associated with #fibromyalgia and #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome: implications for disease-related biomarker discovery

#MEcfs #CFS #PwME #MyalgicE @fibromyalgia #Fibrositis #Fibro #FMS #FM

Background: There is growing evidence of the significance of gastrointestinal complaints in the impairment of the intestinal mucosal barrier function and inflammation in fibromyalgia (FM) and in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, data on intestinal permeability and gut barrier dysfunction in FM and ME/CFS are still limited with conflicting results. This study aimed to assess circulating biomarkers potentially related to intestinal barrier dysfunction and bacterial translocation and their association with self-reported symptoms in these conditions.

Methods: A pilot multicenter, cross-sectional cohort study with consecutive enrolment of 22 patients with FM, 30 with ME/CFS and 26 matched healthy controls. Plasma levels of anti-beta-lactoglobulin antibodies (IgG anti-β-LGB), zonulin-1 (ZO-1), lipopolysaccharides (LPS), soluble CD14 (sCD14) and interleukin-1-beta (IL-1β) were assayed using ELISA. Demographic and clinical characteristics of the participants were recorded using validated self-reported outcome measures. The diagnostic accuracy of each biomarker was assessed using the receiver operating characteristic (ROC) curve analysis.
Paul-Gabriel Wiener
3 weeks ago

Sister came to visit this morning before I went to bed. We sat in awkward silence for a bit, until she said, "Your body language tells me you're bracing for me to say something awful."

I wish I'd had the presence of mind to be properly poetic to convey the truth of the situation: "I took extra painkillers on top of my prescription painkillers, and still every bone in my body is screaming at me in a different voice, and I'm trying to tune them all out so I can hear you." #Spoonie #Fibro

4 weeks ago

A later than normal "hi" to friends here. We have a random increase in warmer weather this week, meaning I didn't want to game earlier which would make my office even warmer.

But I still have this bug and have had a tough 24-48hrs of higher #Fibro pain as a result.

Yesterday I took a break from tomestone earning and continued the post ARR story and Crystal Tower arc on my other Miqo'te in #ffxiv

#MiqoteTime #FF14

Irish ME/CFS Association
4 weeks ago

"Wexford woman on a lifetime of chronic pain–‘if I ever get bed-ridden again I’m going to end my life’"

Yvonne tragically spent 7 years bedbound with ME. This gets across the difficult life she has had due to ME & #Fibromyalgia

Shared with journalist's permission

We had difficulty getting an interviewee: thanks to Yvonne for stepping forward 👍

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #Fibromyalgia #Fibrositis #Fibro #FMS #FM @fibromyalgia

Screenshot of article which is available here (though behind a pay wall)
Tom Kindlon
1 month ago

En français:

Alain Moreau:

La signature biologique laissée dans l’organisme par la fibromyalgie (le 12 mai)

#fibromyalgie #Fibromyalgia #Fibrositis #Fibro #FMS #FM @fibromyalgia

"Les signatures biologiques laiss dans l'organisme par la fibromy Alain Moreau PhD Professeur titulaire Département de stomatologie, Faculté médecine dentaire Département de biochimie médecine moléculaire, Faculté de médecine Université de Montréal Directeur scientifique Réseau Canadien de Recherche Concertée Interdisciplinaire sur l'Encéphalomyélite Myalgique Open Medicine Foundation Collaborative ME/CFS Center CHU Sainte-Justine/Université de Montréal Laboratoire Viscogliosi en génétique moléculaire des maladies musculo-squelettiques, Centre de recherche du CHU Sainte-Justine Vendredi IRSC CIHR P 2:17/ 1:36:00 mai Journée mondiale dela fibromyalgie HOPE SQF: ICanCME signature biologique laissée dans l'organisme par SQF Société québécoise fibromyalgie fibromyalgie"
Idris They/Them
1 month ago

Come back to me when you have a chronic pain condition and covid, my step dad telling me covid is just a cold 🤬

#Covid #Covid19 #Fibromyalgia #Fibro #CFS #CFSME #ME #ShowThatYouCareWearAMask #FaceMasks #HavingAMoan

I have just woken up.
After 8am !!!!
And I am pretty sure I slept all the way through the night.

I can't remember the last time this has happened.
Got to get moving now and keep this positive vibe going 🤞

#fibromyalgia #fibro #fibrolife

Tom Kindlon
1 month ago

New from Spain:

Increased gut permeability & bacterial translocation are associated with #fibromyalgia & #MyalgicEncephalomyelitis /#ChronicFatigueSyndrome : implications for disease-related biomarker discovery

Only abstract available currently

"Biomarkers of intestinal barrier function and inflammation were associated with autonomic dysfunction assessed by COMPASS-31 scores in #FM & ME/CFS respectively"

#MEcfs #CFS #PwME #MyalgicE #Fibro #FMS @fibromyalgia

Screenshot of abstract
1 month ago

Today I am officially a "healthy weight" according to the NHS.

However, that isn't why I lost weight.

I've lost weight because I feel better like this and my #ChronicPain is less bothersome like this. My #Fibro flares less when I'm lighter, I don't have to crawl up the stairs as often because my body is so exhausted it feels like gravity has been turned up to 11.

I don't care how thin I am. I care about feeling better and participating in life more!

#Fibromyalgia #WeightLoss

Idris They/Them
1 month ago

Yesterday my ex was coming over to see the kids, he text about an hour before, saying his gf has a cold, so might stay and look after her.

Meanwhile, I feel like I’m dying most days and just have to get on with it. I’m so fed up of people not realising how difficult functioning day to day is.

I’m either having the worst flare up after traveling, or have got a bug as well 😩

#Autistic #ADHD #AuDHD #Fibromyalgia #Fibro #ChronicFatigue #CFS #Depression #Anxiety #Exhausted #EverythingHurts

Does anyone else with excess lymph get that taste at the back of their throat during lymphatic drainage?

I have #fibro so I have to be medicated first but shiatsu massagers helps with inflammation.

A lot of people cannot tolerate it at all so I don’t recommend doing it unless you must. If so, I have a shiatsu massager.

I’d follow with alternating in-person massages when I could afford it, back when I could go outside.

Hate that taste though.

1 month ago

I'm glad my LOTRO guides are needed by the community. I just wish my own code didn't always fuzz out at crucial moments. So, it's been a stressful 48hrs, making my #Fibro flare up.

I missed it yesterday, so now it's #MiqoteTime in #FFXIV.

Was a painful, restless night & a bad fibro day.
Top to toe and spasms
Maxed out on pain meds and diazepam.

Loving the nature pics and whimsy posts, helping me to stay positive.

Just about noon and off for a hot bath.
It feels like a bloody long day already

#fibro #fibromialgia

Tom Kindlon
2 months ago
Judge admits disability due to fibromyalgia, which Social Security rejected
Irish ME/CFS Association
2 months ago


Martine McCutcheon: “I also ask my friends to google CFS / #fibro symptoms. If they love you, it’s the least they can do! Understanding helps with support. So thank you to our friends who came with a few hours notice!

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

Mamie Nanote
2 months ago

Journée douleur et migraine à errer entre le lit et le canapé, et maintenant qu'il est minuit passé, mon corps refuse d'aller se coucher. Yep, c'était un beau dimanche #fibro

Tom Kindlon
2 months ago

Sinéad O'Connor obituary

In 2003 she announced "she was retiring from music. Both her mental and physical health were suffering, Diagnosed with bipolar disorder, she was also battling the painful condition of #fibromyalgia."

#Fibrositis #Fibro #FMS #FM @fibromyalgia

Am trying to convince myself that I am feeling better and this current bug has gone.
Positive thinking is not yet winning, but I've not given up yet. Looking for my lost spoons.

If its not one thing its another

#Immunosuppressed #Fibro

2 months ago


Because I badly planned this week, then was caught off-guard and had to change my plan twice, and my brain's been awfully distractable, I've lost most of my rest time this week.

It's not been good for my #Fibro pain.

I'm not losing my gaming rest time in either game next week, it's not good for me.

Time for an hour in #ffxiv before I sleep. I need a bit of #MiqoteTime.

3 months ago

I work really hard to only get into my bed when I’m ready for bed. No eating, reading, watching movies, checking my phone, etc in bed. Part of having #Fibromyalgia is having to practice good sleep hygiene. But another part of #fibro is just the VERY STRONG desire to take my bag of Oreos & climb into bed at 7pm & watch Schitt’s Creek because I’m tired & in so much pain 😭 #Spoonie #ChronicIllness

Schitts Creek Eating GIF by CBC
Leonie Jonk
3 months ago

Hello! My name is Leonie and this is my lovely studio assistant Motto. I'm an artist with fibromyalgia and ADHD and that can put a strain on ones mental health so I create art to make myself feel better and to hopefully make others feel better too!

You can find everything all my fun links on my links page :

Buy my art & products :

Or even support me on Patreon!

#disability #fibro #artistsonmastodon

A photo of Leonie with her tuxedo cat motto, in the background we see a potted plant, some art books and some art prints
A digital illustration of a smiling woman with blushing cheeks and she's surrounded by moons and stars. It's a digital portrait commission example.
A small painting of green leaves and white and yellow flowers painted in Gouache.
A photo of a small copper enamel pin of a tuxedo cat with stars all over it's black fur.
Idris They/Them
3 months ago

I rarely pretend that things are ok, sometimes it’s the less exhausting option though. Things are not great, but I’m working on them. I wish someone could come and sort my house out for me.

Diabetes check up with nurse today, and gp appointment about new leg pain.

#Autistic #AuDHD #ADHD #ChronicPain #ChronicFatigue #Fibromyalgia #Fibro #Diabetes #MentalHealthDisorders #Exhausted

Shows what someone may post/hide when replying to someone’s message.

Hi. Sorry I haven’t texted you back. (I’ve been anxious and depressed. I haven’t had time to catch my breath) you know how life gets. (I am so drained I can’t even collect energy for the most basic tasks, like texting you back, or washing the dishes.)The weather has been beautiful right? (Yesterday I fought off a panic attack while driving and had to pull over because my vision was blurred. I just want to sleep all the time, but if I told you, you would just want to uncover a reason behind all this, and there is no reason you would accept as valid.) How are you? I hope well. Let’s get dinner soon. The text in brackets is crossed out to show that they just replied with; Hi, sorry I haven’t texted you back. You know how life gets. The weather has been beautiful right?How are you? I hope well. Let’s get dinner soon
3 months ago

I think it's time for a nap. Watching Russia implode is exhausting. Also, I hurt everywhere. Stupid #Fibro

5 months ago

👋 hello~ time for an #introduction!

this is my chill-space (aka, a personal side account)

📝 basics:
- hi hi i'm beso! ("kiss" in spanish)
- xe/he pronouns (more info on
- late 20s
- i'm a #singer and #artist, though i can't take art commissions often due to my health. (i post my creations in the tag #BesoMakesThings)

👤​ identity:
- soy xicano! i live in the usa
#xicano #chicano #latino
- i'm bi and polyam, in a throuple relationship
#bisexual #polyamory
- i'm a nonbinary just-some-guy (tme)
#trans #bigender #nonbinary
- mentally ill and neurodivergent
#depression #adhd #autistic #AuDHD #kinetic #KineticAutistic
- proudly (and exhaustedly) disabled
#disabled #fibro #mecfs #cfs #arthritis

💖 likes:
- #tech #FOSS #libre
- #VideoGames #IndieGames #TTRPGs
- #manga #manhwa #manhua #webtoon #anime #WebNovel

🔗 links:
- main:
- fandom:
- tumblr:
- discord: dm me to ask!

5 months ago

📌 new pinned post! so i don't keep editing the old one haha

this is my main account, where i'll mostly post about tech, news, activism, and similar subjects.

📝 basics:
- hola~ i'm beso! ("kiss" in spanish 😚)
- xe/he pronouns (more info on
- late 20s
- i'm a #singer and #artist, though i can't take art commissions often due to my health. (i've posted some are here in my #BesoMakesThings tag)

👤​ identity:
- i'm a latino who lives along la frontera in the usa
#xicano #chicano #latino
- bi and polyam, in a throuple relationship
#bisexual #polyamory
- i'm a nonbinary just-some-guy (tme)
#trans #bigender #nonbinary
- mentally ill and neurodivergent
#depression #adhd #autistic #AuDHD #kinetic
- proudly (and exhaustedly) disabled
#disabled #fibro #mecfs #cfs #arthritis #CripplePunk
- very VERY vocal leftist

💖 likes:
- #tech #FOSS #libre #accessibility #design #art
- #VideoGames #manga #anime #WebNovel

🔗 links:
- personal:
- fandom:
- discord: dm me to ask!

Okeley Dokely :audhd:
7 months ago

@TheMacMommy @Pathfinder

#fibro #autism
I'm in a similar boat. My daughter just got an official #autism diagnosis though it's been suspected for years. I've suspected myself, I guess, for about 3 years but only recently did enough research, had enough lightbulbs, etc. to identify #ActuallyAutistic.

I've found this online community extremely welcoming and affirming. wherever you end up, it's your journey and you know best.

Ignore the haters.

7 months ago

@Pathfinder I feel like light bulbs are going off the more I learn. It’s kinda scary though because I’ve mentioned it to a few people so far and I’ve already felt dismissed. Makes it harder to pursue. It’s feels acceptable to get my kids screened but not me because why bother. I’m just a mom and moms are supposed to just push on through. I have #Fibro & I know I’ve been masking around that for a long time so it could just be my way of coping with chronic pain that feels like it could be #autism

fluffy 💜
7 months ago

@TheJewberwocky I talk about it sometimes but it isn't a main focus of what I post (aside from occasional venting about my chronic pain issues). The #fibro/#fibromyalgia hashtags can be pretty helpful for finding folks with that particular symptom complex, though.

Tom Kindlon
8 months ago


"Every day people enter the court to hear whether they can claim disability support and end up being punished for having a condition that is not easily diagnosed. And can’t be treated. It is not just those with ME/#CFS either, but lots of other associated chronic conditions — #POTS, #Fibromyalgia, Chronic #Lyme Disease, #LongCovid. We all run the same gauntlet"

@longcovid @spoonies @chronicillness @chronicpain #Spoonielife #hiddenillness
#invisibleillness #MEcfs #Fibro #MyalgicE #PwME

Tom Kindlon
8 months ago

New from Moreau team in Canada:

"Circulating microRNA expression signatures accurately discriminate #myalgicencephalomyelitis from #fibromyalgia and comorbid conditions"


"The results of this study demonstrate that ME/#CFS & #FM are two distinct illnesses"

#MEcfs #ChronicFatigueSyndrome #Fibro #FMS #PwME @mecfs

Screenshot of abstract
Tiffany Lee Brown (she/they)
8 months ago

@luckytran I'm sure you've heard this before, but -- Welcome to Planet Chronic Illness! We've been here a long time. Plenty of room for our LongCOVID brethren here. People with #mecfs , #fibro (ME/CFS & fibromyalgia) among other "garbage can diagnoses" have been fighting this fight, often from our beds, for decades. It's a tough one. Many of us learn: try not to let the fight itself sap all our strength and healing potential. Slow and steady does it.

Cap'n Mastodon
8 months ago

Question for those who use heart-rate alerts for #pacing: How do you personally calculate your alert level?

I ask because I see two different methods recommended. One is to take 50-60% of the typical max for your age (with some variations). The other is to set it at 15bpm above your resting heart rate.

I've been doing the former method for awhile, and experimented this morning with doing the latter. Wow, it's really hard to stay in that more restricted range! So I'm wondering which one folks here are using.

#MECFS #ME #CFS #fibromyalgia #fibro #ChronicIllness #LongCOVID

I don't think HRT researches have really looked into the connection between #HRT and #Fibro symptoms for #transmasc people yet because we kinda barely exist but, anecdotally, I've noticed, that testosterone shots dramatically improve my fatigue and base level of pain.

Tom Kindlon
9 months ago

"What My Loved Ones Need to Know About Life With #Fibromyalgia" (2017)

Somebody with ME/#CFS could also written a similar letter

""I struggle each and every day, so please ease up on the expectations, accept that I cannot do some things, respect there are limitations and don’t take things personally."

#Fibro #FMS #FM @chronicillness @spoonies #Spoonielife #hiddenillness #invisibleillness #Spoonies #Spoonie #chronicillness

Screenshot from top of page
Tom Kindlon
9 months ago


“Communication is Key

Please don’t assume you know how I am feeling or what I can or cannot do. It changes constantly, and if we maintain a safe and open place to talk about what’s going on, we will better understand how to support one another through this. If you are unsure how to help, just ask”

#chronicillness #hiddenillness #chronicpain #invisibleillnesses #fibro #fms #mecfs

9 months ago

And so it begins. I suffer from chronic pain, and winter is always the worst. I usually fall apart during or just after Christmas (depending on temperature and other stress factors), so despite very low stress the freezing cold got me. Thankfully I often have a cat to keep me company in bed, and my Kindle won't run out of reading material any time soon!

#ChronicPain #pain #fibro #fibromyalgia #caturdayeveryday #caturday #cat #cats #catsofmastadon #catitude #catpasity #felineosophy #catcontent

woman, cat and kindle
9 months ago
A screenshot of the in-game manual from Tunic.

The little fox (wearing a green tunic with a red scarf) is pointing at a vertical stamina bar that has been almost fully depleted of the green stamina within, it is flashing red.

The Fox has a thought bubble that reads "everything hurts way more when I'm tired."
Effie Seiberg
9 months ago

@bennessb Hi! I'm Effie. I have #MECFS, #migraines, and very possibly #fibro. I really liked the #NEISvoid community on Twitter and would love to see more of that here!

I'm also intermittently working with two big ME/CFS orgs, #MEAction and the Open Medicine Foundation, so I have a good line on some technical answers.

Problem Patient
9 months ago

I was talking with a friend yesterday about how, at one point, neither of us would have understood #SelfDiagnosis or developing one's own treatment plan. But that was before both of us got put through the wringer of of the #medical system.

I'll spare you the details, but none of my diagnoses came without me knowing it first and seeking out the diagnosis. I've been dismissed and invalidated, for many years, by many doctors.

I've gone without care and figured out how to reverse symptoms of one condition, and been disbelieved by physicians.

I have some semi-helpful diagnoses now for my most pressing issue, but I have medical questions and no access to the care that could answer them. So I'm on my own, yet again, managing for myself.

So now, if I hear of someone diagnosing themselves and/or treating themselves, I get it. When you can't get a #physician to help you, you either sit around and deteriorate, or you go into research mode and figure the damn thing out yourself.

#HealthCare #NEISVoid #LongCOVID #MECFS #ME #CFS #fibro #fibromyalgia #ChronicallyIll #ChronicIllness #doctor #MedMastodon

Problem Patient
9 months ago

My condition isn't new, but understanding it's #COVID related is. I had #HipsterCOVID (meaning I was an early adopter, prior to the start of testing), and I've been blaming my symptoms on another condition.

I have diagnoses of #CFS and #fibro from a doctor who says she doesn't know which it is and doesn't think it matters, but she does think it was triggered by whatever that virus was that I got at the end of February 2020.

I can't access better medical care, but I'm good at research and reading. I'm learning all I can, and the pieces are coming together. So I'm daring to put myself out there as part of the #LongCOVID community, even though everything is still ill-defined and unprocessed.

*shrug* Only people who get it, get it, I guess.

#MECFS #fibromyalgia #ME #NEISVoid #ChronicallyIll #ChronicIllness

Problem Patient
10 months ago

Folks who use #pacing to manage #PEM #PENE #PESE:

What are your personal early-warning signs that you need to stop now to avoid a crash/flare?

Heart rate? Pain? Dizziness? A certain point of fatigue?

Just curious what signals everyone else has identified. I imagine there will be some variation here, but maybe sharing ideas of little signs that we notice might be broadly helpful.

#pwME #pwLC #fibro #fibromyalgia #LongCOVID #MECFS #ME #CFS #NEISVoid #ChronicallyIll #ChronicIllness

Problem Patient
10 months ago

Folks with #MECFS or #fibromyalgia, would you kindly share tips, tricks, and life hacks related to #pacing?

#ME International recommends using a heart rate monitor to determine how much you can exert yourself before a crash. Anyone try that? (bonus points if you can recommend a good monitor available in the US)

I'd also just welcome any personal stories of how you manage to balance your needs for activity and rest.

Note: Doctor can't tell me whether I'm dealing with #fibro or #CFS and has semi-diagnosed me with either one or both, so until I can get a better answer, I'm looking to connect with people in both categories. Thanks.

#ChronicIllness #NEISVoid #ChronicFatigue #PEM

Today's post expanding on my #bio and #Introduction:

I am #disabled.

I have a chronic pain disorder called #fibromyalgia. #Fibro is similar to #MECFS, and is characterised by fatigue and altered sleep, memory and mood.
Widespread muscle pain and tenderness are the most common symptoms.

The way that it manifests for me is pain in around my joints, particularly my shoulders, wrists, and hands, and my knees and feet. Most days I have a background pain level of about 3/10, and my flare-ups pop up to a pain level of about 6-8/10.

I also have back issues that stem from the years I spent as a nurse - I have compressed discs in my cervical spine, in my lumbar-sacral spine, and a zygapophyseal joint around T7 that keeps dislocating.

I'm in pain most days, but I think worse than the pain is the utter exhaustion from dealing with it constantly. I also get frustrated because I used to have a very strong and capable body, and now there's so much that I just can't do.

I'm also #MentallyIll - I have #cptsd, #ocd, #agoraphobia, #anxiety, and some other bits and pieces of cluster-b disorders.

I'm #autistic and have #adhd, my #autism is #SelfDiagnosed at the moment but my psychologist agrees with my assessment, my adhd was diagnosed by a psychiatrist only last year (I'm 48 - if you want to talk about late diagnosis, let me know).

There are other things I deal with like #diabetes and #migraines, but the fibro and spinal injuries are the main ones.

(..continues next post)

Tom Kindlon
10 months ago

Healthwatch Sheffield &
Sheffield ME and Fibromyalgia Group, worked on a project to help improve health & social care provision for people with ME/CFS & #fibromyalgia in Sheffield.

The focus was to identify barriers to accessing appropriate care, and find solutions


#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #ME #MyE #MEeps #CFSME #CFIDS #SEID #NeuroME @mecfs #Fibro #fibrositis


Tom Kindlon
10 months ago

(#SunshineCoast, #QLD, Australia)
“Novel brain imaging study seeks answers to chronic fatigue mystery”

-People with #MEcfs
-People with #Fibromyalgia
-People with unexplained #fatigue
-Sedentary healthy controls

#CFS #Fibro #PwME #FMS #FM #Fibro #chronicfatiguesyndrome #myalgicencephalomyeltis @mecfs

This latest Covid vaccine booster has not only turbocharged my #LongCovid symptoms but I think it’s sending me into both #Fibro and #CRPS flares all at once. I really hurt, and I’m exhausted. Just holding my phone and swiping to text is painful.

I didn’t expect this after I had almost zero after effects last booster, but I’d forgotten that was pre Covid, and long Covid.

I have plants to pot tomorrow and I honestly don’t know how I’m going to do it. Right now I just want to curl up and cry.

10 months ago

Just had a difficult doc's appt. and I'm here to say: please don't assume that because a person is overweight, they don't like or want to exercise. I *constantly* encounter this assumption. I LOVE hard exercise, and miss it very much.

When I bring up having #fibro and #MECFS, I'm immediately told "exercise will help," which is an extremely loaded and inaccurate generalized comment to make about those conditions.

Bahh. Why are docs like this? I need tea.


10 months ago

Question for #creative professionals and working #artists who also suffer from #ChronicHealth issues.

Has anyone ever come across a website/organisation focused on helping that subset of people?

I could swear I came across something like it a few years ago but my focus was a bit different then and my hurdles not as large. So I didn’t take note. It wouldn’t surprise me if it no longer exists but IMO it still should.

I wish I’d bookmarked it.

#cfsme #fibromyalgia #fibro #arthritis

10 months ago

@RoryCJ I tried this for the first time this morning. Needs more data gathering before it shows me any results though.

I’ve had huge benefits from smartwatch tech over the last year or two. First the Garmin bodybattery. Then on Apple Watch an app called Athlytic blew that out of the water, with pinpoint accuracy I could show Drs where I was crashing.

I’ve also found a new app called Gentler Reach is helping me thread the needle between over exertion and no activity at all.

#cfs #me #fibro

11 months ago

Hoping to find people with similar interest

#Ghosts show and in life

So much more but this is a start.