Authors of pain communication scale/training tools for all ages to effectively, easily get needs met. Speech Lang. Pathologist, artist, and Mom+child with pain.
Kentucky, USA
Joined January 2017
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MyPainAlert retweeted
UPDATE: A rare WIN for this chronic pain patient. And itās a BIG one. šš„
Remember my post about the monthly circus of pain management appointments, pharmacy availability, insurance restrictions, DUR codes, and the financial anxiety of simply trying to fill a prescription my physician has already determined is medically necessary?
Well, after months of phone calls, going back and forth with insurance, and jumping through enough bureaucratic hoops to qualify for the Olympics, my pain management physician FINALLY completed and submitted the prior authorization paperwork.
And starting next month?
My full-agonist opioid prescription is going from $350 to $1.25.
ONE DOLLAR AND TWENTY-FIVE CENTS.
Thatās $348.75 saved every month.
Thatās $4,185 saved over 12 months.
Healthy people get excited about upgrading to the iPhone 17 Pro Max, scoring a pair of limited-edition sneakers, getting front-row tickets to see their favorite artist, securing a viral TikTok Shop find before it sells out, or booking that dream vacation theyāve been manifesting all year.
Chronic pain patients?
Weāre out here celebrating a $1.25 prescription like we just secured VIP access to Coachella. š
And you know what? WE SHOULD.
Because that $4,185 isnāt just money.
Itās groceries.
Itās electricity.
Itās transportation to medical appointments.
Itās a little financial breathing room in a life where simply existing with chronic illness is already expensive enough.
Now, I want to make something abundantly clear.
If there were a way to identify, target, and successfully treat the underlying causes of my chronic pain, allowing me to live comfortably without opioid medication, I would never want to take another opioid again.
Not one.
I take prescription opioids because, after exhausting every treatment modality available and appropriate for my conditions, they remain part of what allows me to function.
And naturally, someone will inevitably arrive in the replies with:
āHave you tried yoga?ā
āHave you tried acupuncture?ā
āHave you tried physical therapy?ā
āHave you tried meditation?ā
āHave you tried just thinking positively?ā
Respectfully, when I say Iāve tried every modality, I mean EVERY modality.
Please stop assuming that patients who require opioid therapy simply havenāt discovered the magical alternative that somehow escaped their physicians, specialists, and years of treatment.
Weāre not looking for a high.
Weāre looking for a life.
And this past Monday , after months of fighting an insurance system that made accessing legitimate medical treatment unnecessarily difficult, I finally have one less battle to fight.
To every chronic pain patient still making those calls, waiting on authorizations, fighting denials, and wondering whether next monthās prescription will be affordable:
I see you.
I know how exhausting it is.
And I hope your own $1.25 moment is coming.
Today, Iām celebrating $4,185 worth of breathing room, and the dignity of being treated like a patient instead of a problem.
Sometimes the biggest victories arenāt glamorous.
Sometimes theyāre printed on a pharmacy receipt.
ā¤ļøāš©¹
Tomorrow is another pain management day.
That means another long drive with my dad, and another day of hoping the whole process goes smoothly.
Will the pharmacy have my medication in stock?
Will the price of my prescription full-agonist opioid go up?
Will I be able to pick up the medication my doctor prescribed without spending the day worrying, making calls, and trying to solve a problem I didnāt create?
For people who rely on full-agonist opioids to treat serious pain from diseases and chronic conditions, this uncertainty isnāt an occasional inconvenience.
It has become part of the monthly routine.
We already live with pain, symptoms, appointments, and the effort it takes to get through ordinary days.
Having to wonder whether the medication we depend on will actually be available adds another layer of stress we shouldnāt have to carry.
And a special, deeply sarcastic thank you to the anti-opioid voices and policies that keep putting more barriers between patients and medically prescribed full- agonist opioids.
Really helpful.
Nothing says āsupporting patientsā like making people with legitimate medical needs worry month after month about whether theyāll be able to access the treatment their doctors prescribed.
Wouldnāt it be nice if this could just be predictable?
The appointment, the pharmacy, the medication, all handled without a crisis.
People living with chronic pain deserve that kind of stability.
MyPainAlert retweeted
USMLE TIP: Aspirin became available as a pain killer in 1899. It was the only NSAID on the market for half a century until the 1960s. It was prescribed at doses up to 650 mg every few hours which is rarely ever done in modern practice.
Many of aspirin's adverse effects tested on Step exams are historical relics from this older era: Reye syndrome, tinnitus, hearing loss, and acid-base disturbances of overdose. These can still occur but they are incredibly rare in modern practice.
So if you ever wonder why we test these adverse effects of aspirin so much when we don't do this for many newer drugs, the answer is HISTORY.
MyPainAlert retweeted
No, I didnāt disappear again ā¦ Iām still here!
Iāve been quiet for a few days, busy and emotionally drained.
Partly because Iāve been helping Juliaās family after her passing.
Partly because P3 was selected to give a 2.5-minute public comment at FDAās 9/9 meeting on opioid medications.
Those 2 things intertwine in more ways than I can explain.
Deciding what most needs to be said in 150 seconds has been an emotional exercise in grief alongside an intellectual challenge.
Part of me wants to yell at the top of my lungs that we have lost too many pain patients like Julia, Jeff, and so many more. And make everyone listening understand that some would still be alive if agencies had measured patient outcomes that mattered from the 2016 CDC Guideline forward.
But we have described the suffering for a decade now. If that alone were enough, change would have come long ago.
So this comment must stick to the line by line instructions in the comment request and answer 1 of 3 of the FDAās listed questions:
I chose:
āAdditional actions that could be considered to address the public health effects of opioid medications.ā
My answer is simple:
Alongside the already extensive analysis of treatment risks, require a public health benefit / risk assessment that measures three crucial but missing areas:
ā¢ Benefits patients receive from treatment.
ā¢ Current public health harms of undertreatment and lost care caused by existing guidelines, education and policy.
ā¢ Foreseeable public health consequences for patients who benefit from opioid therapy if FDA changes labeling, availability, access or treatment options.
For years, opioid policy has celebrated OUTPUTS:
Fewer prescriptions.
Lower MME.
More tapers.
More trainings.
Those measure administrative action.
OUTCOMES measure what happened to patients:
Pain.
Function.
Access to care.
Mental health.
Illicit substitution.
Whether they survived.
The SUPPORT Act requires FDAās to create and enact a plan to address broader public health effects as part of the benefit / risk assessment.
Congress did not require another risk only assessment.
The word BENEFIT is now written explicitly in the federal statute.
That analysis cannot continue to ignore treatment benefits, focus only on treatment risk, or substitute outputs for outcomes.
And this principle reaches far beyond opioids.
Itās time all policy impacting any population is required to:
Define intended outcomes.
Measure benefits, harms and counter-harms.
Publish what happened.
Set a review date.
Correct course when evidence shows harm.
Human consequences cannot remain outside the analysis.
MyPainAlert retweeted
I am officially on my last nerve today with medical disinformation on opioid therapy and pharmacists who are at the peak of the curve that describes the Dunning Kruger Effect (original paper from 1999 can be found at pubmed.ncbi.nlm.nih.gov/1062ā¦).
Here are the facts about opioid therapy:
1) The @US_FDA has approved opioid analgesics as safe and effective when prescribed appropriately for moderate-to-severe pain. Because they are safe and effective when prescribed appropriately for moderate-to-severe pain.
2) It is ethically impermissible to deprive patients from an established therapeutic benefit in a randomized, placebo-controlled clinical trial (RCTs); after a drug has been proven effective, studies that examine its long-term effectiveness should involve randomized comparisons to other drugs, such as in Enriched Enrollment Randomized Withdrawal (EERW) studies. Critics who wrongfully insist that we must have RCTs to justify the use of Long-term Opioid Therapy (LTOT) are either disingenuous or they are woefully uninformed (again, see the Dunning-Kruger Effect).
3) According to FDA Postmarketing Studies (PMRs) on opioid therapy, the prevalence of addiction in patients taking opioids for pain - operationalized BROADLY by the @US_FDA as patients meeting DSM-5 Criteria for moderate-to-severe opioid use disorder (OUD) - is approximately 1.5%. The prevalence of alcoholism in adults using ethanol is about 10% and the prevalence of tobacco addiction in adults who smoke is about 60-80%. Again, critics who refer to the risk of opioid addiction as "high" either lack the knowledge to appropriately contextualize that risk (Dunning-Kruger again) or they are disingenuous.
4) Buprenorphine is indeed a useful medication for treating both chronic pain and OUD, but it is too early to label it as the drug of choice for cancer pain or chronic, non-cancer pain. The largest review of buprenorphine in palliative care [Thakkar, et al. J Pain Symptom Manage. 2025 Dec 29:S0885-3924(25)01016-4] "found consistent evidence that buprenorphine was comparable to other full opioid agonists when used as both a short-acting and long-acting analgesic for palliative care patients. It also did not display significant differences in risks of adverse effect." Additionally, the authors observed, "While buprenorphineās superior safety profile, particularly its lower risk of respiratory depression and overdose compared with full opioid agonists, is well established in the literature, none of the included palliative care studies reported on respiratory depression." Given this, it is also premature to conclude that buprenorphine is truly a safer option for LTOT than other full-acting opioids (FAOs); although that argument is a rational one, it remains unproven.
5) There is a substantial and growing body of evidence that suggests that abruptly discontinuing LTOT or reducing opioid doses too rapidly may cause patient harms including uncontrolled pain, mental health crises, increased risk of self-harm or suicide and increased risk of overdose from illicit fentalogues (See, for example, Oliva et al. BMJ. 2020 Mar 4;368). Discussions about reducing opioid dose or transitioning to buprenorphine should include a comparison of these risks versus the risks of LTOT. Additionally, clinicians must transition from a recovery model of illness to a model that acknowledges that some patients have PERMANENT, INTRACTABLY PAINFUL conditions that justify the use of LTOT under the ethical principle of double-effect.
6) The systemic vilification of opioid medications that began with the 2012 PROP Petition to the FDA on Opioid Labeling occurred - at least in part - to support large-scale multidistrict litigation (MDL) against opioid manufacturers and distributors. Many of the medical experts involved these lawsuits inappropriately influenced federal opioid policy despite having undisclosed financial and professional conflicts of interest that should have disqualified them from participating in the policy creation process [see Kollas CD, Boyer-Kollas B. Chapter 15: Laws and Policies Affecting Pain Management in the United States. Bonicaās Management of Pain, 6th Edition (James P. Rathmell JP, Edwards RR, Gilligan CJ). Wolters Kluwer, 2026, ISBN: 9781975222369. In press for Fall 2026].
7) Ultimately, all pain care should be individualized and compassionate, make use of evidenced based treatments (that use both medication and non-medication-based approaches) and, when appropriate clinically, may include opioid therapy with a focus on optimizing therapeutic benefits while mitigating risks of both long- and short-term side effects, including the risk of OUD; patients with OUD or opioid addiction should enjoy the same level of access to individualized, compassionate care as patients with chronic pain. That level of care is detail-oriented, time-consuming and professionally challenging - but all of our patients deserve nothing less.
MyPainAlert retweeted
Thereās a mom at our school drop-off. Messy bun, always three minutes late, kids usually eating dry cereal out of a Ziploc. The "Pinterest moms" always whispered about her. I honestly felt a little bad for her.
Then one day at the playground, my neurodivergent son had a massive, violent sensory meltdown. Iām sitting in the dirt, crying, totally paralyzed.
The "perfect" moms just stared and pulled their kids away.ļæ¼
Suddenly, sheās there. The messy mom.
She drops her giant bag, sits right in the dirt next to us, pulls a heavy sensory toy out of her purse, and calmly shields my son from the crowd. No panic. No judgment. He regulated in three minutes. I was speechless.
We had coffee after. She told me her house is a disaster and she has severe ADHD, but she knows exactly what a nervous system collapse looks like.ļæ¼
I asked her how she deals with the judgmental stares from the other moms.
She took a sip of her cold coffee and said: "Perfect moms know how to bake organic muffins. Chaotic moms know how to survive the trenches."
Every time I see her running late now, I just smile. Girls, be like the messy mom. Stop apologizing for your chaos.ļæ¼
MyPainAlert retweeted
One of the most unforgettable moments of my career still gives me chills. A 36-year-old man stumbled into my office, flanked by his anxious wife and two toddlers clinging to her. He had passed out earlier that day but stubbornly refused to go to the ER, defying the paramedicsā warnings. The sight of him was alarmingāhe had lost 20 pounds, his frame was skeletal, and he was gasping for breath. His blood sugar was a staggering 413, and his heartās ejection fraction had plummeted to a near-fatal 8%āa shadow of the normal 65%.
When I told him the truthāthat he was standing on the brink of death, one misstep away from a fatal strokeāhis wife broke down in tears, begging him to listen. But he wouldnāt. He refused to be admitted to the ICU, where he desperately needed to be. There was a moment of silence as I realized I was walking a razor-thin line between pushing too hard and losing his trust completely. So, I made him a deal. If he promised to follow my instructions to the letter, I would keep him out of the hospital and treat him in an outpatient setting.
It was a risky gamble, but he agreed. I immediately put him on total disability for 12 weeks, fitted him with a life-saving defibrillator vest, started him on Insulin and a rigorous heart failure medication regimen, and enrolled him in a local heart transplant program. I switched him to a plant-based diet and saw him every single week, pouring over his daily emailed vitals to tweak his treatment plan. Every step felt like a battle against time.
This past Friday, six months later, he walked into my officeāstrong, steady, and transformed. He is now off Insulin, managing his diabetes with Metformin and diet alone. His heart function has improved dramatically, with an ejection fraction of 45%, meaning he no longer needs the defibrillator jacket and is officially out of the danger zone. The heart transplant he once seemed destined for is no longer necessary. He has returned to work, unrestricted in activity, and his life-threatening conditions have been reversed.
As I watched him with his familyāhis wifeās relieved smile, the joy in his childrenās eyesāI felt an overwhelming sense of gratitude. The doctor-patient bond we shared had been a lifeline, a partnership built on trust and relentless effort. Together, we not only saved his life but also spared the system millions of dollars in medical care. I barely earned anything for the countless hours I poured into his recovery, but no paycheck could compare to the reward of seeing his family whole again.
The doctor-patient relationship is sacredāan act of faith, resilience, and transformation. Iām praying for his continued health and his beautiful family. Good morning. #Gratitude #ModehAni
MyPainAlert retweeted
3 of the most important things you can do as a patient
1. Learn how to advocate for yourself.
2. Create a network of friends & fellow patients.
3. Research everything!
#fyp #advocate #nationalpaincouncil #network #research #chronicpain #pain #learn #patient #weR1
MyPainAlert retweeted
Today is gym day. I am making my preparations whch include taking enough pain meds to control my chronic, severe pain as completely as possible otherwise I will not be able to even walk to the car.
But the amazing part to me is that with my severe pain nearly fully treated I will do exercises and weights at the gym which guys half my age and not in any pain at all can not do.
Then during days between gym visits I will benefit from the added strength the exercises gave me while my severe pain was controlled to help me avoid any additional injuries to the area of my pain.
Without the appropriate meds to control my severe pain for at least a few hours these exercises would be impossible and further deterioration and loss of strength would be unavoidable.
All pain patients need essential control of severe pain to avoid needless loss of strength and mobility which contribute to needless deterioration putting them at risk of further injuries and escalation of severe pain.
MyPainAlert retweeted
A barrier for one health professional can be a facilitator for another!
A big congrats to Jen Norton on her first PhD publication! It nicely sets the scene for her other studies currently underway.
MyPainAlert retweeted
Red Lawhern states:
"The following was posted over the weekend to multiple social media platforms serving a registered readership of over two million healthcare industry contributors.
This is a note on my ongoing work in contradiction to US public health policy on pain management. As forum moderators and some readers will be aware, I write and speak extensively on the intersection of public health policy and the practice of pain management in the US and abroad.
It is only fair that potential readers would want to know whether my work is generally regarded as credible or scientifically well grounded. One way to do that is to verify how widely the work is cited by others.
The following links provide basic data on where my work is known and has been cited by others:
perplexity.ai/search/how-manā¦
scholar.google.com/citationsā¦
Also useful in understanding how profoundly misdirected the current policies of US healthcare agencies are, is the following: lnkd.in/gdT2EaNH
To join in this work as a patient advocate or clinical professional, you may email [email protected]."
MyPainAlert retweeted
#ChronicPain patients, please respond if you can!
IMPORTANT! Please re-post!
@ibdgirl76 @CMerandi kindly sent an email alerting me OIRA docket requesting feedback on the 2016 CDC guidelines is now open. Thank you Bev and Claudia!
I was able to comment. I tried over a dozen times to attach documents but was unable despite resizing. The docket would not accept even one document. I noted this in my comment. Please take a few minutes to comment. I know many pain patients are struggling, please try to comment even if only a few words.
Here is the link:
reginfo.gov/public/do/PRA/icā¦
@PainNewsNetwork @ThomasKlineMD @ChadDKollas @JoshBloomACSH @GhanaboyPharmd @UrWithintheNorm @DanLairdMD @ravensspirit68 @life_is_art___
ALT OMB docket
MyPainAlert retweeted
From podcast from ā¦@AmerMedicalAssnā© in pain care: He Nailed it. This is exactly whatās happening to chronic pain patients. Weāve been marginalized to the point of being erased.
MyPainAlert retweeted
Dear all:
These bills, Senate Bill 3393 and House Bill 4531, are up for a vote, potentially by the end of the year. They contain certain language that would be harmful to patients in pain if passed as they are. Therefore, we are writing a petition together to call for those sections to be removed before the vote.
Specifically, sections 115 and 166 of the Senate bill calls for post-marketing studies of opioids that could lead to opioid pain medications being removed from the market.
Next, section 120 of the House bill would fund more remote monitoring devices, to which we are also opposed.
These aspects of these bills concern anyone with pain. By signing this petition, we will ensure that the sponsors and co-sponsor of the bills are altered to our collective opposition. By taking this action together, we hope to see those sections removed from the bills.
You are also welcome to send the petition to your own congresspersons and senators if you would like.
na01.safelinks.protection.ouā¦
MyPainAlert retweeted
āThe CDC, FDA, and DEA have severely underestimated the needs of #chronicpain patients and misjudged the consequences of these cuts. While #opioid misuse is a serious issue, penalizing legitimate pain #patients is not the solution.ā buff.ly/4fa1zW5 @PainNewsNetwork #cpp
MyPainAlert retweeted
Henwood & Turnpenny's evaluation highlights the need for a better approach:
Define what effective support looks like.
Personalize assistance for individual needs.
Offer diverse support options.
Let's enhance the wellbeing of carers & those they support! bit.ly/4ep8uL1
MyPainAlert retweeted
To my partnerās parent who berated me in our waiting room , called me stupid in front of others and asked for one good reference that wearing masks were helpful after I asked her to please put herās on, here are 413 references fully summarized for you. Hope you see this. š·
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