Discover and read the best of Twitter Threads about #fibromyalgia

Most recents (24)

Its my 20 month vaccine anniversary today.

I now take: ketotifen, sodium, statins, anticoagulants, antiplatelets, H1 and H2 antihistamines, plus vits/mins to address deficiencies and high needs, and some supplements

I still feel like crap

#postvacsyndrome #LongCovid
These meds address:
馃槥Mast cell activation syndrome
馃槥My inability to produce aldosterone (endocrine dysfunction)
馃槥Endothelial damage
馃槥Clotting
馃槥Platelet activation
馃槥Unexplained hyperhomocysteinaemia (i.e. no MTHFR variant)
Luckily for me, people believe me. But some only seem to believe me because I agree with them about other things, because i take issue with the same people they take issue with, because i havent gone on media they dislike

And that is a HUGE bias we need to overcome
Read 11 tweets
POLLS! #LC #MECFS #LYME #FIBROMYALGIA #MOLD

I'm analyzing some surveys. Could you please help clarify a result?

For those w/ #LONGCOVID, have VAGAL NERVE STIMULATORS helped your symptoms?

Ex: MedFit, Dolphin, Sensate

#MECFS #fibromyalgia #Lyme #MOLD: see SEPARATE polls below
For those with #MECFS, how have VAGAL NERVE STIMULATORS (examples: dolphin, MedFit, Sensate) helped your symptoms?

For #Lyme #Mold & #fibromyalgia, please see next two tweets.
For those with #LymeDisease or #mold exposure, how have VAGAL NERVE STIMULATORS (ex: Dolphin, MedFit, Sensate) helped your symptoms?

For #Fibromyalgia, please answer poll in NEXT tweet.
Read 6 tweets
馃УDentro hilo para contar lo que hemos hecho hoy en el Congreso de los diputados, desde la Plataforma Ciudadana "Movilizaci贸n Persistente" en defensa de los derechos constitucionales a la atenci贸n sanitaria y a la protecci贸n en caso de enfermar (Arts 39, 41 y 43) @DefensorPuebloE ImageImage
Art铆culo 43
1. Se reconoce el derecho a la protecci贸n de la salud.
2. Compete a los poderes p煤blicos organizar y tutelar la salud p煤blica a trav茅s de medidas preventivas y de las prestaciones y servicios necesarios. La ley establecer谩 los derechos y deberes de todos al respecto. Image
Art.43.3 : "Los poderes p煤blicos fomentar谩n la educaci贸n sanitaria (...)"
Pero qu茅 presupuesto del gobierno de @sanchezcastejon se est谩 destinando para investigar el #CovidPersistente justo un a帽o despu茅s de su descripci贸n por la OMS
@DefensorPuebloE ?
cutt.ly/zBu4wZU Image
Read 13 tweets
#MECFS never gets easier to accept.

Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.

Each year though, my overall baseline declines.

It feels like dying slowly and painfully. Never knowing when your body will just quit.

1/
And no. I鈥檓 not depressed or anxious. (Though it would certainly be understandable if I was.)

In fact, I continue to be in awe of myself and my community鈥檚 emotional strength in the face of this relentless physical suffering.

2/
Any one of the typical #MyalgicEncephalomyelitis symptoms, turned up to an 8/10 intensity, would be difficult to live with after awhile. It would wear you down.

By the time you get to 3-4 of these symptoms, it鈥檚 debilitating.

Imagine getting to 100-200 daily symptoms.

3/
Read 28 tweets
馃У #LivingLongCovid

Some maybe already know me probably% and maybe my story.

I am a #HealthCareWorker and since before and at the beginning of #COVID19 I have worked in the #ICU saving lives and learning about #IntensiveCare

I've had #COVID19 3 times so far this pandemic.
I developed #LongCovid from my 2nd contagion that was serious at the time, I required hospitalization in #ICU and oxygen therapy.
Since Dec 2020 I have lived with #LongCovid since then and when I understood the Multi-organic gravity of #LongCovid
I SURVIVED!
And I still do it daily.

A few days ago I had a 2nd #InfarctionSilent a year ago I had a multiorgan failure accompanied by #infarctionSilente

We know that #COVID19 can cause #myocarditis and that is possibly the case, I don't know yet.

I tell you now.
Read 19 tweets
鈥濭oebel et al. gehen davon aus, dass #Fibromyalgie, #MECFS und #longcovid Autoimmunerkrankungen sind, die durch lokale (keine systemische) Entz眉ndungen gekennzeichnet sind.鈥
Goebel et al. injizierten M盲usen #IgGs von an #Fibromyalgie erkrankten Patienten. Es dauerte 2 Tage bis sie 眉berempfindlich gegen眉ber Druck, K盲lte und Schmerz wurden und sich ihre Griffkraft verringerte. (Kontrollgruppe: IgGs gesunder Probanden > 馃惌 blieben gesund)
Read 8 tweets
11 super interesting facts about the PAIN NEURO MATRIX that everyone should know:
馃憞 follow the thread 馃憞
#1 ... is a matrix of brain structures馃that process and regulate pain information
#2 ... includes various nuclei in the brainstem, the amygdala, hypothalamus, thalamus and areas of the cerebral cortex
Read 13 tweets
馃У
鈥淚sraeli finding may make hard-to-diagnose #fibromyalgia easy to confirm:The chronic pain condition can be detected based on analysis of gut microbiome,scientists say in peer-reviewed research,potentially paving way for objective diagnosis,treatment鈥
timesofisrael.com/israeli-findin鈥
1/
2/

鈥淢any medical professionals have been eager for an objective diagnostic method [for #Fibromyalgia], both for practical reasons and also to rebuff those who doubt the genuineness of the condition鈥

#Fibro #FM #FMS
3/
鈥渞esearchers鈥ay they have found biological markers. They report in the peer-reviewed journal Pain that they have identified patterns in the gut that could form the basis of an objective method to diagnose #fibromyalgia

#Fibro #FMS #FM
Read 11 tweets
Criticism of the new #Fibromyalgia coding for ICD-11:

Concerns about the taxonomy, definition and coding of fibromyalgia syndrome in ICD-11: the potential for negative consequences for patient care and research, H盲user, Clauw, Wolfe et al:

Free text: clinexprheumatol.org/abstract.asp?a鈥
To submit comments on ICD-11 coding for Fibromyalgia:

First register with the ICD-11 development platform, here: icd.who.int/dev11/Account/鈥
Read 7 tweets
馃У It鈥檚 #DisabilityPrideMonth and we鈥檙e seeing another wave of COVID globally, so here鈥檚 a list of reasons why you should watch the Netflix documentary 鈥楿nrest鈥 and educate yourself on #MECFS and #LongCovid
ME/CFS, also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a multisystem, physical disease that can be identified by its cardinal symptom, PEM (Post Exertional Malaise), in which after activity, the individual experiences a delayed worsening of symptoms. 1/
These symptoms are debilitating and leaves sufferers after activity, even on the mild end of the spectrum, with migraines, light/noise sensitivity, vertigo, nausea, vision changes, widespread muscle/joint pain, weakness, orthostatic intolerance and at its worst, paralysis. 2/
Read 14 tweets
This is the kind of paternalistic, unscientific nonsense that #MECFS #Lyme #Fibromyalgia #HSD #POTS #MCAS #Pandas #Pans #EDS #VaccineInjured #FQtoxicity patients have endured for decades. Now it鈥檚 the turn of #LongCovid
I鈥檓 going to make an offer to our colleague. Hopefully @DrKGregorovic can convey this message as I am blocked. Happy to have a Zoom coffee with both of you. We can examine
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC
-the evidence for the 鈥榝alse sickness beliefs鈥
-the quality of the studies advocating exercise & talking therapies
-studies looking at the outcome of exercise in #MECFS & #LongCovid populations
-cardiovascular & other outcomes in #LongCovid

I think that is fair? Let me know
Read 6 tweets
1. If you鈥檝e enjoyed/found my threads useful and have some disposable income would you consider donating to OMF? They fund research that will help those of us with #MECFS #LongCOVID #PTLDS & #fibromyalgia.
2. My life has basically been on hold for over a decade since I first developed ME/CFS. It took me until 2020 to get a diagnosis. Delayed diagnoses like mine are common because there are currently no labs that doctors can order to definitively diagnose ME/CFS.
3. Diagnosis is by process of elimination where doctors run tests for other possible diseases and rule them out to narrow it down to ME/CFS.
Read 8 tweets
Dear World,

Recently a man of much wealth and so undue power & influence, @elonmusk, made a bizarre, senseless attempt to malign a drug, #BUPROPION (aka Wellbutrin/Zyban), which continues to profoundly benefit the lives, the functioning, of myself & others.

1/馃摐
The potential implications of this must be addressed.

Of all the drugs on the market 鈥 some easy to get as candy (alcohol, cigarettes, vaping), others blithely prescribed, often irresponsibly (opioids, broad-spectrum anti-biotics) &

聽2/馃摐
in some cases even seemingly maliciously (opioids, anti-psychotics) 鈥 why would he pick one that麓s been in use since the 麓80s, never had any controversy, helps a lot of people lose weight, and helps a lot of us THINK, PERCEIVE, COMMUNICATE, LEARN, and MOVE ABOUT.

聽3/馃摐
Read 17 tweets
#chronicillness Twitter to doctor advocates
-you鈥檙e only speaking out because you鈥檙e sick yourself
-now you know what it鈥檚 like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
1/n
-you need to mention 鈥榵鈥 disease as well. (We鈥檙e learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
2/n
-don鈥檛 dabble in areas you know nothing about. (In my case #Palestine. Being a chronic illness advocate doesn鈥檛 make me a one-trick pony. I鈥檝e visited the West Bank & witnessed firsthand the horrors of #IsraeliApartheid. So I will speak up- I鈥檓 not here for anyone鈥檚 comfort
3/n
Read 5 tweets
What I have learned since being unwell myself has destroyed any faith I had in my profession鈥檚 leaders. I used to think that deep down most senior clinicians acted because they had the best interests of the patient, their colleagues & society at heart. That illusion is gone. 1/n
Be it the treatment of those with #MECFS #LongCovid #Fibromyalgia #POTS #MCAS #EDS #HSD #PansPandas #Lyme #FQtoxicity #vaccineinjuries & other so-called invisible illnesses; 2/n
the refusal of senior medics to stand up & protect colleagues, the public & schoolchildren from airborne spread of #SARSCoV2 as they are too afraid to displease those in the ivory towers of infection control, @UKHSA & @NHSE management & @UKgovcomms; 3/n
Read 7 tweets
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
Read 17 tweets
@debbie_seymour I'm so sorry. How can we support you? The #MECFS community is here for you.

Are you aware of the #NEISvoid community for people with chronic illness? We're a great place to ask questions & get support. We're also a repository of life hacks for living with limiting conditions.
@debbie_seymour I don't know if it would help your husband understand, but this vid does a great job of explaining the physiology behind #LongCovid, #MECFS, and #Fibromyalgia:

Read 3 tweets
I鈥檝e just been made aware of a #POTS management clinic run out of @uclh autonomic service. Brace yourself. I鈥檝e had feedback from an attendee and it isn鈥檛 good. @UKPoTS you may be aware of this @YorkCardiology @dysclinic it鈥檚 awful 1/n
Run by 2 specialist nurses. Some jewels:
鈥淲e learn to think in particular ways
These ways may not always be helpful when you have ongoing health issues. Unhelpful thinking can increase symptoms. 2/n
These thoughts are automatic, you may not even be aware of them, until we train ourselves to think differently鈥
Hypervigilance, particularly of body sensations is a common thinking pattern in PoTS鈥
The website neurosymptoms.org was recommended for dissociative symptoms 3/n
Read 11 tweets
My biggest lesson after almost losing my life to #Lyme 鉂わ笍 failure after 12 dogmatic NYC docs failed to recognize what was wrong, gaslighted me, & implied my serious symptoms were in my head鈥

NO ONE WILL DECIDE MY FATE.
I was bitten by a tick in my sleep in LBI, NJ, July 4th weekend 2014, there for friend鈥檚 wedding.

Came back to nyc, woke up w crushing head/ neck ache. Little did I know 鈥渟ummer flu鈥 is usually #Lyme.

Few days later, was feeling a bit better but saw bite & rash on shoulder.
Walked to urgent care. They said it was #Lyme, told me not to google it 馃槕, & that with 3 weeks of doxycycline, I would be 馃挴 fine.

My gut feeling said something was very wrong. But I wanted to believe.

I followed up w an @IDSAInfo doc from NYU to be sure.
Read 32 tweets
This #InternationalWomensDay I鈥檇 like to remind my doctor colleagues that medicine has an androcentric history that may impact upon women patients. That woman isn鈥檛 芦聽difficult聽禄, she鈥檚 under-researched and we know less (and even less has been translated to practice). 馃У
We can do Better. Women are also represented less in medical and anatomical textbooks. Here are some papers for further information.
Androcentricity in medicine:

onlinelibrary.wiley.com/doi/full/10.11鈥
Misogyny in medical research:

croakey.org/the-unattracti鈥
Read 21 tweets
If you cannot access an #MECFS doctor, following are suggestions to treat possible co-morbidities & get your symptoms documented in your medical record:

1) Ensure thorough work-up for causes of fatigue. Your primary care provider can order most of these tests: /1
This is a great resource for tests to request or check to see if you've had done to evaluate for underlying causes of fatigue: /2

batemanhornecenter.org/wp-content/upl鈥
2) CARDIOLOGY to evaluate for POTS (Tilt Table Test) or NASA Lean Test can be done in office; at home test: an increase >30 bpm heart rate from supine to standing in adults may indicate POTS.

Treatment for POTS may improve some symptoms but need to find cardio aware of POTS. /3
Read 21 tweets
THREAD: Bring it down safely! 鈫橈笍馃拪

1/6 6鈨weets about our new TI Therapeutics Letter 134: Finding the lowest effective dose for non-opioid #analgesics

馃憠馃従 Full Letter: ti.ubc.ca/letter134

#MedEd #medsafety #prescribing #BetterPrescribing Image
2/6 Consistent evidence that minority of pts get clinically meaningful pain relief from any dose of:
#Cyclobenzaprine (at best 1/4)
#Duloxetine (at best 1/6)
#Gabapentin / #Pregabalin (at best 1/6)

馃憠馃従ti.ubc.ca/letter134

#MedEd #ptsafety #BetterPrescribing #prescribing Image
3/6 Gabapentin, pregabalin, duloxetine:

A 2021 Canadian systematic review found NNT (numbers needed to treat) of 6-7 for "clinically meaningful benefit" (defined as 鈮30% reduction in pain or pain & function)

馃憠馃従ti.ubc.ca/letter134

#MedEd #BetterPrescribing #deprescribing Image
Read 7 tweets
With chronic conditions such as persistent pain, fibromyalgia, CFS, ME and more recently Long Covid, people are still dismissed when their tests show nothing of note.

Cont鈥 馃憞 #LongCovid #MECFS #Fibromyalgia #pain #thepaincoach Image
The idea that a negative test (or tests) means that there is nothing wrong is ignoring the plain fact that there is something wrong.

馃憞
The person has just explained how they are feeling. Have they been heard? Many haven鈥檛 and that is unacceptable. Even some doctors have not been believed by other doctors!

馃憞
Read 7 tweets
An update as I never properly followed this up: My wife, Marjolein, won her benefits back after losing them last year. With amazing support from a kickass lawyer (who should wear a cape) we challenged @UWVnl & won. The judge found their medical assessment to be "unlawful". #mecfs
And in July 2021, her basic sick pay benefits were restored. However, we decided we don't want to go through this humiliating/ exhausting/ inhumane process again & end up in court every year. We can't do it. So, we appealed for longer term support & go to court in May. Again.
My wife left home three times last year. Her life & its geography is now basically 2 rooms. I directly link the uncertainty, anxiety & stress of this sick pay benefits process to her health worsening. Let me put that another way: the Dutch govt & @UWVnl is harming her health.
Read 9 tweets

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