Discover and read the best of Twitter Threads about #chronicillness

Most recents (24)

18 myths & misconceptions of Post-Exertional Malaise #PEM in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#PEM (aka PENE, "flare" or “crash”) is seriously debilitating symptom caused by exercise

#SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd
1. #PEM is just tiredness

No

#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance

@PNASNews #MECFS #MyalgicE #MedEd #medtwitter
pnas.org/content/114/6/…
2. #PEM is not a real

No

“there exists no medical condition.. where exertion.. causes #immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60%.. of.. [#pwME].. reported these symptoms”

@PLOSONE #MECFS
dx.plos.org/10.1371/journa…
Read 20 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
In 2011 I was bitten by a tick. I have a brain tumor/IIH & such severe intestinal damage that I CANNOT digest food w/out enteral food RX. It's $198/wk, even w/pharma discount. My (now) 77-year-old Mom is my caregiver but she can't afford it. Don't have enough to eat/save 🏡. 😭
I contracted E
Chaffeensis, Rickettsia of unknown etiology, & #LymeDisease. I just had 8th spinal tap to relieve pressure on my brain.
I'd been on antibiotics for 19 yrs.
I caught Coxsackie B4 virus-a cousin of polio. Lost most use of (L) side.
I wasn't treated for 11 mos. #Lyme
Read 17 tweets
thread

Remarkable @bmj_latest @BMJCaseReports report documenting the extreme lengths a bedbound patient went through to get a diagnosis of #POTS, #MCAS, #SIBO and #tachycardia

read her story here

#MedEd #MedTwitter @MayoClinic
casereports.bmj.com/content/2018/b…
2. After suffering for 16 years, seeing 19 docs with repeated misdiagnosis:

Her cardiologist couldnt diagnose #POTS

Her gastroenterologist couldnt diagnose #SIBO

Her immunologist couldnt diagnose #MCAS

Her neurologist referred her to a #psychiatrist!

casereports.bmj.com/content/2018/b…
3. Patient: the "neurologist was out of ideas and suggested I get a psych evaluation, which I declined"

the patient <referred herself> to @MayoClinic

#SickNotWeak #chronicillness #chronicpain #MedEd #medtwitter

casereports.bmj.com/content/2018/b…
Read 10 tweets
Decided on my project for #BlackHistoryMonth 2019. Reads: Black History Month in large block letters with a colored inside and a hollow outside. Black is red inside, Hustory is green inside. Both words are in the foreground. Month is in the background. The graphic is transparent.
Once a week I'll write briefly about up to 7 historical/famous figures in the Diaspora who

- had/have #ChronicIllness
- spoke of the possibility of being in #DiagnosticLimbo
- or were considered #Disabled.
Why once a week and not every day?

I'm a #Spoonie dammit. I have no clue what day or time I'll have energy.

But I can commit to weekly.

The whole thing is for you to see that we're everywhere. For you to SEE us.

So let's get it.
Read 15 tweets
#germanculture
Today is the 124th #birthday of #German #mathematician Karl August Reinhardt (1895-1941) who(for all I know) was the first human being to describe a transitive convex pentagonal #tiling(despite #tilings having been known in several cultures since time immemorial,..
.. it seems to no one had found (or even looked for) for such tilings. (Here, 'convex pentagonal' means that the #polygon tiling the plane is a convex pentagon; 'transitive' means that the symmetry group of the tiling acts transitively on the set of tiles.)
Reinhard found five..
..distinct TYPES of such tilings. I did not read his work sufficiently closely to be able to tell whether Reinhardt claimed to have found ALL. Anyways, it took 50 years till more types were found(by the #American Kershner in 1968 who found three more types). The search for more..
Read 9 tweets
Thread:

The 10 publications below provide scientific evidence that patients with #MECFS have #brain abnormalities in #neuroinflammation, #metabolism, #neurological connections and blood perfusion

#pwME suffer from #chronicillness

#pwME are #SickNotWeak
1. These studies “provide evidence of #neuroinflammation in #MECFS.. as well as evidence of the possible contribution of neuroinflammation to the pathophysiology of #MECFS

#pwME

jnm.snmjournals.org/content/55/6/9…
2. This Australian study found abnormalities in the #brain MRIs and peripheral Blood Pressure and Heart Rate in #MECFS patients including the Vasomotor centre, midbrain and hypothalamus

#pwME

sciencedirect.com/science/articl…
Read 14 tweets
I don’t love my body out of a sense of obligation or because I give up on it changing or because I think it’s me more than my soul.

I love it because it’s a short way to acceptance that feels good.
I’m angry at my body sometimes. It feels like it has betrayed me.

But not loving it has adversely affected my mental and physical health, of indirectly.

So I willingly and knowingly choose love.
Have you ever tried to grow or nurture anything or anyone you don’t love?

Have you ever tried to be creative with something or someone you don’t love?

Have you ever tried to fully accept someone or something you don’t love, with all its flaws?
Read 5 tweets
#triggerwarning #contentwarning
Ya'll, be careful with #YouOnNetflix #YouNetflix #YOU if triggered by:
stalking, entitled men, child abuse, child neglect, DV or drug use.

Joe's neighbors are yelling/loud sex types.

Neighbor kid is nice, but neglected.

Joe is a stalker.
Also possible triggers:

College professors harassing TAs/students.

Voyeurism (open windows/no curtains)

Sex scenes & Masturbation.

Imprisonment by said stalker is also a feature.

Homophobia, Hazing & a murder.

This is all by ep 2.
Lax computer/phone security

Misuse of Rx medicines

B&E

Masturbation while watching stalked victim

General predatory behavior.
Read 16 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 29 tweets
My oxygen machine just shut off and sent out a long beep and now I am somewhat panicked about not having air.
I called the medical equipment company, but it's a long time till morning when they come and bring another one.
I have two tanks = 6hrs.
#chronicillness is so terrible.
And the people who are on call are not very nice.
They always seem very put-out that you need to be able to breathe.
So The Wife just called--she teaches in another state on Wednesdays. She said yes, we do have several oxygen tanks at the office, which she will pick up on the way home. And one of my doc friends on here sent me a fix-it vid for her for when she gets home to check the machine.
Read 5 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
Please read my mom's gofundme & help in any way possible. We are struggling to survive. RTs help. 😭
In 2011 I was bitten by a tick (after being on antibiotics for 19 yrs). My rescue dog was bitten & died the next day. Wasn't treated for 11 mos- I had E. Chaffeensis, Rickettsia, & prob.#Lyme in spinal fluid & brain. Caught Coxsackie B4, cousin of polio & lost most use of L side.
Read 10 tweets
Some of the daft & unsolicited advice I’ve received over the years, from people who know significantly less about my illness & how it affects me than I do, but still, they have the answers!

#MyalgicEncephalomyelitis #MyalgicE #PwME #UnsolicitedAdvice #ChronicIllness #Disability
I should move out of (damp and mouldy) Scotland to a drier country - I’d lose my entire support network. I would no longer be eligible for UK disability benefits, and I won’t be eligible for social security in whichever country I move to. What will I do for money and support?
Take up meditation - I’ve tried, it makes me anxious. I have other methods of relaxation.
Read 25 tweets
Diseases like #mcas and #mastocytosis aren't exactly invisible illnesses. Swelling, hives, rashes and big, dark circles under our eyes are pretty visible signs, not to mention the bruises we get from bumping into stuff! 🙄#chronicillness #spoonies #mastcell
Flushing..dermatographism..yep, pretty visible. ☹️
If you watch Summer Caroll's interview you can see her flushing kick in the longer she talks wvua23.com/living-a-night…
Read 3 tweets
I’ve been amplifying the #DoctorsAreDickHeads hashtag the last few days but haven’t actually shared my own story. It starts there, traverses through #DoctorIRespect and #DoctorsAreAwesome and ends with #DoctorsAreHuman (something for everyone!)
And of course it is not the entire profession, but the profession has a major systemic problem when it comes to disabled patients and those with #chronicillness that it seems to have little to no knowledge or self-awareness of. THAT – not the hashtag – is the problem #medtwitter
#MedTwitter, your patients have been trying FOR YEARS to speak out on hashtags like #spoonies #pwd #medtrauma and no one has listened (on this platform) at this scale until patients got....confrontational #DoctorsAreDickheads
Read 46 tweets
starting the day with drugs is not as fun as it sounds #chronicpain
strong cannabis cookie, 1/2 soma, 600 mg ibuprofen, 1/2 a joint, heating pad, and now we wait. #migrainemorning #backpain #walkinglikeagnoll
a whole nother joint and several hours later, i can move and managed a shower! now to eat breakfast and then probably rest again. I've got schoolwork to do, laundry and dishes piling up... i will do what i can do today #spoonie #chronicillness
Read 12 tweets
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 16 tweets
Okay, you know the deal. Tech tweets by day, #ChronicIllness tweets and miscellaneous rants by night.

CW: medical stuff.
I had an experience today that kind of sent me over the edge in terms of what costs chronically ill people are expected to shoulder. (Yes, I'm talking about US healthcare. No, I don't want your "just move to Canada/France/wherever!" suggestions.)
Chronically ill patients often are misdiagnosed for years, if not DECADES. That means multitudes of specialists over those years, along with many, many, often painful, tests. In addition to the physical and emotional toll this takes on a person, it also takes...
Read 22 tweets
The accuracy of that brain fog article.

"What if they think I’m seeking drugs if I ask about a specific treatment? What if they think I’m just hypersensitive to everything going on in my body and dismiss it? What if this list is too long and they think I’m making it up?"
I kept trying to explain to an older relative what was happening to me this summer.

She told me that happens as you age.

[Rihanna Incredulous look gif!]
No ma'am. I did not, in two years, go from being able to give 60 minute talks on various areas of my expertise?

To temporarily not being able to remember the word hospital.

From aging.
Read 8 tweets
#Disability twitter, #medtwitter , let us have a discussion about patients discussing #MedicalTrauma on here. A Thread:
#chronicillness #ChronicPain #Chroniclife #MedTraumaChat #Spoonie
2) Last night, a fellow advocate posted a very handy guide for HCPs & patients abt treating patients who are trauma survivors: Trauma Informed Care - Disclosures and Care Transitions healthasahumanright.wordpress.com/2018/08/23/tra… #medtwitter #Disability #chronicillness #medtraumachat #spoonie
3) It's a good resource for both #patients & HCPs, please read it if you have a moment.
This led to a helpful discussion about #MedicalTrauma between an HPC and the person who wrote this guide, who has had experiences with this,
#Disability #medtwitter #chronicillness #Spoonie
Read 13 tweets
I signed this petition. I never sign online petitions. But #Afflicted cannot be allowed to stand. chn.ge/2LcFWGj via @Change
Documentaries are meant to give a view of a subject or topic on a FACTUAL basis. Their opinion isn't supposed to be centered unless the subject is themselves.
#Afflicted is heavily slanted toward the erroneous assumption that the chronically ill patients are

faking,

have psychological illnesses rather than physical diseases,

or somehow in denial.

And I ask you- to what end?
Read 13 tweets
With the exception of my closest friend, I didn't know other people had conflicting #chronicillness or more than one. Not until I went online.

#spooniechat
Then I found people who understood that some suggested solutions aggravate other conditions.

It's a comforting, peaceful break not to have to explain that what solves one illness aggravated another.
It's great emotional support to be able to talk about the health issue of the day, to vent and not be accused of wanting something other than understanding & commiseration.

#spooniechat
Read 4 tweets
1/I've said many times that I am poor because I am unemployed (except for my writing) and I am unemployed because I am disabled.

I am now officially rejecting that shit.

I am still disabled. I still am not employed.

#Disability #ChronicIllness #poverty
2/But the reason I am unemployed is because society has deemed me disposable. This isn't on me.

#disabled #DisabledPeopleMatter #PplWDisabilitiesMATTER
3/It's because society has decided the WANTS of the abled (specifically in my case, to use fragrance and decorate with balloons) are more important than my survival. This isn't on me.

#BanBalloonsInstead #fragrance #MCS #MCAS #allergy #asthma
Read 18 tweets
The MAJORITY of food trends are either false or harmful to #cancer patients and people with #chronicillness.

Spread the word to people not to medically diagnose their friends when even the docs and naturopathic practitioners, and trusted sources are often wrong!
Even in cases where it is proven that changing a part of your diet fixes something in healthy people?

Our bodies are not normal. We. Are not normal. Our bodies often have multiple conflicting ailments where fixing one thing breaks something else.
Sometimes we have achieved a happy medium that allows us the most freedom, rather than a near-cure that keeps us prisoner to treatments we can’t afford.
Read 4 tweets
1. If you want to understand what causes Crohn’s disease, ulcerative colitis, or actually many other chronic illnesses, and why most medicine doesn’t seem to treat it, I want to explain what may be happening. (thread)
#crohnsdisease #ulcerativecolitis #ibd #chronicillness #crohns
2. This hypothesis is a collaboration between my wife and I, and is based on longstanding research + some new studies that have come out in the last year or so.
3. Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract. Like many of the other inflammatory bowel diseases, it can be a debilitating illness that makes life a living hell. If it gets bad enough, it can kill.
Read 75 tweets

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