Discover and read the best of Twitter Threads about #chronicpain

Most recents (24)

1 #medicaltwitter #TBI #Gaslighting #coverups #medicaltrauma #medicalptsd I know why the back of my neck was scraped out. It just gets worse. At a checkup I asked what happened to the hump on the back of my neck. The surgeon said she scraped it out. That she did! That is where ImageImageImageImage
2 my CSF pooled up! I know why my head hurt after surgery like it was hit! She shunted me, but through the back of my head! So I already had my skull messed with before I hit it on a shelf! And my husband massaging my neck hard not only ruined stuff BUT he disconnected
Read 14 tweets
#cpp #ChronicPain #medicalgaslighting #malpractice #healthinsurancefraud @GovRonDeSantis @RepMattGaetz @DEAHQ Been labeled by stupid algorithms and that is how they hide my malpractice! How many are they hiding? How many others are out there suffering from surgeon mutilation?
And then the doctors lie more to higherups. NEVER been in an accident! I had NO IDEA what she broke and pieced together! In 2017 two of my doctors could have helped me get help! Instead I was blackballed from proper care and legal help too. Our medical system is a disgrace!
My lymph tissues…😞 Image
Read 5 tweets
2)which underscores the need for close supervision of these patients."

Let's take a look at their rationale for their conclusion.

Of 9940 patients who received 3 or more #opioid prescriptions over an 8 years, 51 experienced an #overdose, 6 of the 51 experienced a fatal event.
3)The researchers did not make the yearly data available, nor did they provide data on any known prior history of Substance Use Disorder #SUD within the #Patient population.

It's impossible to determine how they performed their calculations to obtain these results.
4)While they did provide percentage risk based on MME dosages, they also Risk based folks multipliers which obscures actual risk. The highest percentage of risk reported based on MME dosage was less than 2%,

Limitation: Low OD Rate 🙄🤦‍♂️…
Read 7 tweets
1-#ChronicPain patients knew that the opioid 'guideline' re: prescribing practices was not law.
But as intended, PROP's 'guideline' shaped the Standard of Care re: #opioid prescribing practices so it might as well have been law.
Tort law.
Let's try and break it down. Image
2-Once PROP's ‘opioid guideline’ was published through CDC, prescribing practices started to formally change nationally and altered how doctors were to treat pain; altering the Standard of Care. This was crafted around an ‘opioids are dangerous drugs' narrative.
#ChronicPain Image
3-The recommendations to instate a maximum morphine milligram equivalent altered things further in the practice of treating pain. It changed pain treatment recommendations for acute pain, post surgical pain control, and most of all, the way #ChronicPain was treated. Image
Read 10 tweets
Just doing some digging. #Pain is extremely nuanced. And the approach should also. W my kids #health & #pain there has been continued lack of knowledge, assumptions, & unwillingness to understand.
➡️#Anatomy of those that had #TPAIT & lack of understanding
by many docs 1
how this can impact #pain
➡️ Not identify or understanding impact of #MalabsorptionSyndrome
➡️Assumption that removal of #pancreas should immediately ‘solve’ issue of #ChronicPain
➡️ #GastricEmptying issues
➡️ Age of my kids (too young to have #pain)
➡️ Lack of 2
understanding & identification of #MedicalTrauma
➡️T3c #Diabetes
➡️ Impact of #NASH on #pain & options for #care

There are numerous factors that are critical in #Treating an #ChronicPain in #Individuals. They list of few listed above that are factors w my kids, have often 3
Read 8 tweets
Reviewing some #NorthDakota information surrounding #prescribed #opioids.
#OpioidPrescriptions #declined 34% from 2006 to 2020

Statement in poster ➡️ ‘Since 2007 every state has been working to address the #opioid epidemic & best practices are now understood’

Are they? 1
In the #Conclusion
➡️ nothing that addresses the #harm of #patients that struggled with #chronicpain. #Nothing re #outcomes of those #abandoned by #physicians & removed from #prescribed #opioids. Nothing about the looming disaster of last #physicians that #prescribe in 2 Image
#NorthDakota leaving. #Patients having no recourse. #NorthDakota absolutely has growth in area of serving those w #SUD yet in their pursuit to do this, they have #harmed those w #chronicpain & continue to exclude them in discussions or acknowledge these #harms. @hhsndgov 3
Read 5 tweets
Disheartening things I find w/ #ChronicPain & #ChronicIllness is misunderstanding &judgement from others. Weight seems to be a big thing for others. Overweight or thin seems to be an issue. Is it though or are those "others" basing it from their reality instead of the reality of
#ChronicPain & #ChronicIllness. I'll share just one of the many examples I've experienced. Recently I had to shop in the little girls' section & buy the largest size little girls to find a #sundress that would fit!!!(still a little big)So I'm a fairly small person. I, literally,
also had major #abdominalsurgery 2 weeks ago. A friend gave me a ride to get my staples out yesterday. He, on the way home, asked about my exercise, &about how often I walk. Yes, he knows about #ChronicPain & #chronicillness. Unless someone is asking you for exercise health
Read 6 tweets
#Pain is nuanced
The difficulty with articles such as below example, is nuances not recognized.
For example, I could identify as someone with #chronicPain I have a few conditions that are accompanied by #pain.
My #pain is NOT unrelenting, it’s there ‘hovering’ in the 1 Image
background. I do #yoga 🧘‍♂️ & #meditation & for ME, for the #pain I experience, it provides benefit.
However, take my kids; NASH, kidney disease, gastroperisis, T3, scar tissue neuropathy etc. #mindfullness #meditation is not going even touch it. Not in anyway
2 example of 2
#pain experiences.
It’s understandable that many in nation that are not in #medical profession struggle w the #nuances
What I struggle w & what I believe #harms those w #ChronicPain is the generalization of #pain by #medicalprofessionals & lack of individualizing care based 3
Read 4 tweets
1⃣/9⃣ #COVID19 lockdowns disrupted normal life, including access to healthcare. We conducted 3⃣studies📰 on chiropractic #patients in Spain 🇪🇸 who were isolated & couldn't receive their usual care 👩‍⚕️.

🌟Here's what we found…👇👀 Image
2⃣/9⃣ We gathered observational cross-sectional data from 648 #patients across Spain 🇪🇸 during the strictest phase of the #COVID19 lockdown (April 2020).

🔴Participants were experiencing acute or chronic #pain at the time of the survey.… @SciReports👇
3⃣/9⃣ 🦠 #COVID19 wasn't just a #PhysicalHealth crisis. Influenced by multiple factors, including #anxiety & pandemic-related outcomes, pain worsened ⬆️ during lockdown 😰💭

🔴Time to consider the #biopsychosocial implications of the #pandemic & lockdowns!
#MentalHealth👇 Image
Read 11 tweets
I'm so tired of being told : you need to change doctors, find someone who will listen to me etc. Do you know know what it's like in reality ?
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you
have severe mecfs or very severe you can't go and just find a new doctor. 4. i did that for years. No one listened. No one. Or if one did they had no Idea what to do or put me in danger or sent me to other doctors who treated me like not a human. 5. Each travel to another apptmt
undergoing painful exams being gaslit for years and treated like i wasn't sick it was not enough my pain concerns and words never mattered. 6. The crashes after each apptmt. Physical pain. Suffering. Until being bedbound for weeks and months. 7. The mental toll of all of this and
Read 24 tweets
@WelshGovernment @SeneddWales @vaughangething @PrifWeinidog @Eluned_Morgan

When are you going to start looking into this

You have had plenty of time now

Why have groups like @ukcvfamily & @VIBUK1 have to campaign to get us heard ?
Ive had email correspondence with my MP, who informs me that healthcare is the responsibility of @WelshGovernment , also Welsh Gov are responsible for the rollout of the #covidvaccines in #WALES

MP writes to Térèse Coffery & despite reminding her, there’s no reply
MP goes on to write, he hopes that I get a better response from @WelshGovernment

Yeah right!!!

I raised I’d had health problems after @ASTRAZENECAUK by email to Eluned Morgan April 2022

She didn’t want to know…
Read 15 tweets
What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"

Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
Read 7 tweets
🧵1) of 9 #DisabilityTwitter #DisabilityRights #Disability #chronicillness #ChronicPain #RareDisease Is our country 80+ yrs later treating our most vulnerable citizens any different? 👇 Just killing us in different ways.…
🧵🧵2) "the Nazi ideological conviction which labeled these persons "life unworthy of life".This country makes it near IMPOSSIBLE to get disability after paying into it via taxes for decades once we become ill. Medications unaffordable unless you're rich.Why? Image
3) Yr after yr & appeals we fill out COUNLESS FORMS. "The limited space & wording on the forms, as well as the instructions in the accompanying cover letter, combined to give the impression that the survey was intended simply to gather statistical data."
Read 10 tweets
Are you on #pain medications or use #opioids? If so, and you do a ketogenic diet, you may find you are more sensitive to opioids. (1/6)
Now, this was a mouse study. And you are not a mouse. I am aware of that. But I am not surprised by the findings of this study. Why? (3/6)
Read 6 tweets
1-VERY early on we warned about 'pain contracts', the weaponized PDMP, & probable ramifications.
Some of us predicted that opioid policies would metastasize to other meds; suggested that a palliative care exemption for chronic pain patients and MDs who treated them was needed. 😔
2-We sounded the alarm about suicides in our community, real harms to people already sick and injured due to 'opioid policies'.
We were told that our accounts were anecdotes, that 'studies' would be needed for 'proof'.
We continue to suffer & watch friends/loved ones suffer/die.
3-We saw how 'DRUG' stigma was passed from one community to the sick & injured. How addiction tx options then somehow became the 'solution' for people with #chronicpain; patients already stable and functional on affordable, safe, and effective old school opioid medicines.
Read 8 tweets
Every pain patient should know our history and know who Siobhan Reynolds was.

#ChronicPain #RememberingSiobhanReynolds
Read 4 tweets
I don't say it often outside of @maiasz reporting;
but the New York Times did a great job covering this story,… #opioids #chronicpain #disability #adhd #medtwitter
Not a fan of the headline cuz it downplays the story
issue isn't that some folks cannot get Ritalin

the big story is that Federal Prosecutors forced an unconstitutional measure on distributors to curb drug access to pharmacies regardless of how it harms patients
What is happening is what I warned you about; trying to fix a drug crisis by withholding access

Pharmacies are being forced to cut patients off after they divvy out a certain number of drugs to the local populace.

& then every other patient gets screwed…
Read 7 tweets
1-Husband established w/a clinic in our town-
Same one that refused to treat my pain a few yrs ago after exacerbating my neck injury carrying firewood.
MD had told me I'd need a referral to a pain clinic as my pain was related to a chronic condition. 🤨
Husband given a brochure.
2-He then saw this in the exam room.
He took photos for me of all of this as he knows how they treated me in the past and he also knows about all the hypocrisy of what they say vs what they actually do when it comes to CPPs.

3-Following are close ups of the poster.
Read 7 tweets
1-I now have ppl searching for me on FB after reading my article.
One person put a link on one of my posts about how to 'get hooked up with doctors who will give people the pills they want'.
I'm tired.
No, I'm beyond exhausted and I'm really over all of this.
2-I deleted his 'pill hook up' link, he also posted a link to his own article in which he regurgitated the tired THEORY of how- 'over prescribing started the opioid crisis' and how 'prescription pills are now being laced with Fentanyl'.
3-Probably 25 more articles I need to write now expanding on things I could only touch on in my recent article. The first being. dispelling #TheGreatOpioidLie that uses the 'over prescribing' theory to justify the DEADLY, draconian restrictions they've implemented on RX meds.
Read 7 tweets
Makes me sad-
The same arguments/facts we were making back in 2014 when Share Our Pain was one of the few E-advocacy groups here are the same things new people are just realizing.
Siobhan Reynolds-way before that.
All the anti-opioid PROPagandists know.
2/EVERY #chronicpain pt needs to know our history re: our advocacy. Siobhan Reynolds was a lion, hunted down by GOV, cut down in the prime of her life.
Her voice will echo through time, forewarning the atrocities we see rapidly increasing in real time now.…
Read 4 tweets
A woman with severe depression and various symptoms, including suicidal thoughts, #PMS, #panicattacks, #chronicpain, and poor #sleep quality switched to a carnivore diet. (1/5)
She experienced significant improvement in her symptoms and overall mood after switching on #carnivore after just seven weeks. (2/5)
She reported weight loss, improved sleep, better concentration, and no dip in mood during her cycle. She states that the diet is 100 times better than any medication she has ever taken. (3/5) #brainhealthmatters #carniovore #metabolicpsychiatry #nutritional psychiatry
Read 5 tweets
There's no friendly way to put this:

The new CDC Opioids Guidelines are a farce when it comes to saving patients' lives.… #chronicpain #opioids #opioidcrisis #fentanyl #lawenforcement #drugs #politics #health #disability #disabled #cancer #addiction #pain
The CDC 2022 update is not meant to reform the guidelines

It's meant to absolve the CDC of guilt & wash its hands of an opioid prohibition & crisis it helped create… @elizableu @yashar @chadfelixg @conor64 @lhfang @stillgray @joerogan @TaylorLorenz
Christopher Jones, acting director of CDC’s National Center for Injury Prevention & Control

Said the guideline is about "improving the lives of patients living with pain.”

Then why did the CDC push further & deeper restrictions against patients?
Read 13 tweets
The #startup world's dirty not-so-secret: most startups fail. Startups are risky and so investors place bets on lots of startups and fold the ones that don't show promise, which sucks for the company employees, but also for the users who depend on the company's products. 1/ The staring eye of HAL9000 from 2001: A Space Odyssey. Cente
If you'd like an essay-formatted version of this thread to read or share, here's a link to it on, my surveillance-free, ad-free, tracker-free blog:… 2/
You know what this is like: you sink a bunch of time into familiarizing yourself with a new product, you spend money on accessories for it, you lock your data into it, you integrate it into your life, and then, one morning - poof! All gone. 3/
Read 48 tweets
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:
😞Mast cell activation syndrome
😞My inability to produce aldosterone (endocrine dysfunction)
😞Endothelial damage
😞Platelet activation
😞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

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