Discover and read the best of Twitter Threads about #fibromyalgia

Most recents (24)

I was a clinical sports therapist. My degrees in Sports Coaching and Exercise Science. The Royal Colleges insistent claims that exercise is effective for ME are based on a "deconditioning theory" - Not the actual science that proves #pwME are exertion intolerant.
If graded exercise rehab worked for people with #MECFS then why is the recovery rate only 5%? If I could successfully rehabilitate clients post surgery, after years of immobility, chemo damage and serious injury, then why did the principles of GET leave me severly disabled?
I specialised in reversing chronic injuries and musculoskeletal pathologies not just for elite athletes but for children too. GET took away all available hrs I had on my feet to still do my job. And they claim we are just accessing the wrong services ...
Read 18 tweets
The intervertebral disc degenerates more in the curves of the spine. The pressure in the nucleus increases when there is a lighter load. At night a painful disc often becomes more painful because the nucleus takes on water which increases the pressure.…
When one gets out of bed and walks around the increased load on the disc reduces the amount of water inside and may provide pain relief. This is true in disc pain problems such as the #Fibromyalgia #Syndrome and IDDS(internal disc disruption syndrome).
MRI may show nothing abnormal in the painful disc. The familiar pain is reproduced with awake discography. Also in the lower anterior cervical spine the painful disc may be found by palpation in the area of the C5-C6 skin line. The C5-C6 disc is the most common one for surgery.
Read 3 tweets
1/🧵For months I’ve been grappling with what seemed like a real gap in conversations about #LongCOVID.

Here in @STATnews, I introduce you to 30 references & 3 #COVID survivors – Ray, Pam, and Carolyn – who taught me a lot. I hope you think so, too…
2/ "I feel like I'm getting the silent treatment & it's killing me," #LongCOVID pt Pamela Bishop confided in me about her months-long interactions as she tried to get answers about a strange array of symptoms that have plagued her since recovering from #Covid19.

Pam then & now…
3/ Up to1 in 3 COVID survivors report experiencing #longCovid symptoms 3 to 6 months later. Their stories give me an extreme case of déjà vu because this is playing out similarly to the problem of long-term survivorship after non-COVID critical illness.
Read 26 tweets
UK NHS Wales Employee Mask 😷

What is that?😳

Part 1/2
UK NHS Wales Employee Mask 😷

What is that?😳

Part 2/2
More stuff like this found on masks 😷 😳👇🏽
Read 70 tweets
Trigger Warning: Trauma and Self harm for thread
@nolan_syreeta @manijadegarcia @BlackInMH

Today is my first trauma anniversary of the most severe medical trauma I have dealt with in my life in a critical period of my academic journey. Really, I could be in graduate school
right now. My applications to my 7 planned programs could have been so strong. This medical trauma happened 2 months before the deadlines to my graduate school programs. I had just gotten to the point where I was ready to fill out the applications that acceptance would have
meant leaving my medical teams, but I was prepared to make that change. This medical trauma was the worst 2 hours of my life to a consent that really wasn’t a full consent, to have my pain dismissed, to have wheelchair support to leave denied, to have a resident speak with
Read 25 tweets
Being Black & #disabled has been a journey for me to process being seen as a strong Black woman yet it juxtaposes against disability seen as weakness in our society. It has felt disallowed at points to be proud of my disabilities or to even recognize disability beyond visible 1/
disabilities. I am so grateful for everything that I have learned over the past few years that have helped me to come to this place I am in now and all the amazing people who have been there for me along the way like @Tinu, @manijadegarcia, the @DisInHigherEd team and
so many more that I could stream together. Being bisexual and Christian has been hard like hiding something I am proud of because I know how the Christian community feels about the LGBTQIA+ community with exceptions for accepting churches. The conflict that lies inside of me 3/
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1) This is Ethan, now aged 15, and ill for 18 months. He would like to be listened to and believed. He is certain that he is not anxious and that he definitely does not have "anything to gain" from debilitating daily symptoms.

#AlwaysOurBabies #LongCovidKids #BacktoSchool2021 Image
2) Anna caught #covid in April 2020, 4 weeks later she had a terrifying "inflammatory response" & was so ill. The hospital refused to see her. She has #covid triggered #CFS & #PANS & been ill since. She's not the same happy, energetic little girl she was. 💔 #AlwaysOurBabies Image
3) This is Evie Mae, it doesn't seem two minutes ago that she was this little.
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies Image
Read 15 tweets
The chronic collaboration has been created in response to the recent refusal of NICE to publish the much awaited ME/CFS guideline. Many #pwME would like to protest this decision along with the years of medical neglect & mistreatment they have faced 1/5…
Due to the psychologisation of #MECFS after the scientifically flawed #PACEtrial, part funded by the #DWP btw. Not only has this caused medical abuse in patients with #ME (#MAIMES) its having a huge impact on the treatment & further investment of many other patient groups 2/5
From people living with #ChronicPain & #MUS to #Fibromyalgia & #LongCovid. There are literally #MillionsMissing globally & thousands of #Disabled #pwME & #SevereME in the UK who are desperate for their voices to be heard, represented, just taken seriously in many cases 3/5
Read 5 tweets
Here’s something I’d like to try. Below are a list of workshop ideas that I have ready to go but wonder about interest. These would be first Live on Instagram and Facebook but then published to my website for free viewing & my YouTube channel. Like or comment. Here they are:
Autistic bug out bag: how to prepare yourself for sensory inputs while enjoying the adventure of life

Like or comment to support this video creation by The unLibrarian.

#autism #neurodiverse #neurodiversity #ConstructiveAdaptation #EverydayMagic #SelfCare
The link between self advocacy and confidence: removing the aggressive narrative

Like or comment to support this video creation by The unLibrarian.

#advocacy #disability #SelfCare
Read 9 tweets
THREAD: I’m going to let you in on a little secret. In March 2020 millions of people across the globe- including a disproportionate number of healthcare workers like me- got in touch with each other and signed a pact. We all decided to fake a new illness.
We started exhibiting a bewildering array of seemingly disconnected symptoms reproducible between individuals. Chest pain, fatigue, breathlessness, brain fog. Blood tests, x-rays & ECGs were usually normal. #MedTwitter take note. This means it’s in the head.
Some of us were able to make our pulse rate, blood pressure and oxygen saturations fluctuate wildly, foxing doctors. In fact, some got so good at this game that we could fake damage to heart muscle on MRI & produce weird rashes & antibodies on demand.
Read 10 tweets
I have tried to assemble the evidence base to support conducing an RCT of high-dose thiamine for people with #MECFS, #Fibromyalgia and #EDS. I would appreciate feedback on whether the case has been made, and if not, what additional evidence would help.
I document existing RCT evidence (for IBD fatigue) and hypotheses for why it could work for people with ME/CFS, Fibromyalgia and EDS here:… . More technical discussions here:… and here:…
Most recently, I summarize results of survey of retrospective use of high-dose thiamine among 55 people w/ #MECFS, #Fibromyalgia and #EDS here:… . Key graph below:
Read 14 tweets
Body Politic has published an important open letter to the @NIH @NIHDirector urging the prioritization of #LongCOVID research that builds off prior research into #MECFS and related conditions.

👉… by @itsbodypolitic @fi_lowenstein @ItsAngInLA The organization Body Politic has written an Open Letter to
In December, Congress provided $1.15 billion over 4 years for @NIH to “support research into the prolonged health consequences of #COVID19”. With many newcomers to the field there’s cause for concern that experienced #MECFS researchers may be overlooked.… “We are writing today to urge the NIH to prioritize fundin
#LongCovid and #MECFS have much in common and are increasingly joining forces to drive change that might lead to diagnostics, treatments, and a cure. “Long COVID patients share both symptoms and experiences w
Read 10 tweets
1) World With Complex Regional Pain Syndrome
(CRPS) As My Constant Companion

I live in a world with Complex Regional Pain Syndrome (CRPS) as my constant companion. Physicians don’t know why it develops, but #CRPS is a nerve disorder that
2)usually occurs after a traumatic injury, surgery, sprain, fracture, infection or a period of immobilization. CRPS/RSD is said to be the most painful chronic disease that’s known today. On the McGill #Pain Index it (Causalgia) scores 42 out of 50.
3)How does that compare to other types of pain and/or chronic pain conditions? #Arthritis pain is ranked about 18, Non-terminal Cancer pain at 24 and Chronic Back Pain is at 26. Natural labor and delivery of a 1st child is about 35. With a score of 40, the pain associated
Read 31 tweets
Different groups have FOIAed this #Lyme crooks email over the years. On the surface it is appalling, but what does it really mean? “This battle cannot be won on a scientific front...we need reinforcements from outside our field.”

In short, it means they’re guilty. Of what? 🧵
They rigged the #LymeDisease case definition to conform to diagnostics that were designed to detect a small minority of cases that are genetically predisposed to produce a strong antibody response.
Allen Steere had done a ton of research on the association of various HLAs with different antibody responses in #LymeDisease. Everyone knew by the early 1990s that the people with an arthritic knee had a strong immune response but weren’t very sick.
Read 21 tweets
We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues for symptom management or therapeutic treatment.
Here are a few that might be interesting:
1️⃣Low serum carnitine:
2️⃣ Low natural killer cell function:…
3️⃣ Elevated lactate (blood, brain):…
4️⃣ Cerebral hypoperfusion:…
Read 25 tweets
#chronicillness - a thread
Imagine being 12. A preteen in between 7th and 8th grade. The lower back pain started as a dull annoyance, then a constant vice tightening on my lower half. I was written off as "growing pains." Meanwhile I'm literally crawling to the bathroom so I can
Take a 4 hour scorching hot bath. Daily. ER says constipation sends me home. 2 days later I'm back at the ER in a wheel chair. My uterus almost ruptured because I was written off as over exaggerating. I had to have emergency surgery TERRIFIED AND 12 YEARS OLD. Fast forward 19
Years later.
The list goes on.

In walks #COVID19
My immune system is already screwed so #selfisolation here I come. Nearly everyone in my close family is high risk. I put off appts
Read 5 tweets
I deeply relate to this. After almost dying of ❤️ failure from #Lyme & being told by 11 “top” docs that in spite of my tick bite, bullseye, & classic symptoms, I could not poss still have it after a short course of doxy. Well, I did. 1/
And after the 12th doc saved my life (thx @StevePhillipsMD), I wrote my story in @HuffPost. I didn’t think anyone would care. But they did. The editor called & asked me to keep writing about this scandal as so many ppl were reading my story. 2/…
So I kept writing and began hearing from people all over the world, including a nurse from Ghana, who used my story to guide them back to health. I even interviewed celebrities who had gone through it like Daryl Hall. 3/…
Read 16 tweets
“The latest Fibromyalgia - ME - Chronic Pain!… Thanks to @item9labs @Travis_Statham @SoIsFibroReal #fibromyalgia #anxiety. Is insulin resistance the cause of Fibromyalgia”
MY RESPONSE: Landmark study or red herring? Study of 23 patients with Fibromyalgia (FM) & small fiber neuropathy(SFN; found in FM & diabetics) showed elevated HgbA1c levels & pain reduction with use of Metformin.
The authors point out the obvious: people with Fibromyalgia are often sedentary due to pain. Sedentary people ➡️ obese. Obesity ➡️ Diabetes, which ➡️ small fiber neuropathy.
Read 21 tweets
WARNING: I'm furious, and what follows is likely to reflect that.
I unfortunately use @elicahealth via @DHCS_CA . Their previous psychiatry provider prescribed me a schedule II medication. However, like literally every single provider I've had through @elicahealth, that provider later left the clinic. I was provided no notice of this. Nor was I
Given notice when the previous 6 providers I had been seeing departed. Some providers left @elicahealth so abruptly that I only had time to see them once before they simply vanished.

There has been no continuity of care after any of these unceremonious departures. Each time
Read 21 tweets
#Fibromyalgia: Anyone signed up for FM blood test thru this site? Ad makes it sound like a call for clinical trial participants, but site appears to be helping people get their insurers to pay for the test. I'm thinking dr's offices could do same. Yes?
Researchers who developed new blood test for #Fibromyalgia promote it as anti-rx #opioid: "about 40% of patients on #opioids meet the diagnostic criteria for fibromyalgia. Fibro often gets worse, & certainly doesn't get better, with opioids." 1/2…
2/2 Of course, no one should take any drug--OTC or rx--that makes them worse or doesn't work. But doctors shouldn't assume rx #opioids will never help anyone w/ a given diagnosis. The goal ought to be the best possible life for people in pain, not prescribing purity.
Read 3 tweets
I don't know who needs to hear this (j/k it's doctors) but it's possible to have #Fibromyalgia and #EDS. It's also possible to have EDS without fibro and fibro without EDS. Figuring out what's up is literally your job.
I have cEDS without a fibro pain pattern. In fact, I seem to be hyposensitive to pain (but have a lot of it). But some doctors hear "chronic pain" and blame the nervous system when it's actually my dislocating joints and spasming muscles -- not hypersensitivity but repeat injury.
Meanwhile, pals with fibro who are also hypermobile and have other EDS complications and co-occurring conditions can't get an EDS diagnosis and proper treatment because doctors would rather blame it all on the fibro and send them on their way.
Read 3 tweets
Privacy of #mentalhealth status
I was working for some people from. the #DisabilityRights sector in India and had disclosed about my long-term #depression and #fibromyalgia to them (I have done it publicly too but that is besides the point here). 1/n
The lady incharge there started coercing me a few days later to accept that I have Bipolar Disorder and that she will help me get a diagnose and prescription, so that their venture appears "inclusive" for the records. When I refused harassment began. 2/n
My work that was applauded till then suddenly was labelled substandard and anything I said was called tantrum or disorder. Details about my health were shared with other colleagues without my #consent and was used as a slur against me in work spaces. 3/n
Read 9 tweets
1/ At least 250,000 people with chronic illnesses like #MECFS, #Fibromyalgia, #POTS and #EhlersDanlosSyndrome are currently denied thorough investigation and effective health care in the UK.
2/ This number has the potential to double after #COVID19 with many 'long-haul' patients experiencing persistent symptoms which often overlap with the abovementioned illnesses. #LongCovid
3/ More money must be invested in biomedical research into the causes and mechanisms of all chronic illness. Clearly #LongCovid gives researchers the ideal opportunity to study this, as it were, in real-time.
Read 5 tweets

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