Discover and read the best of Twitter Threads about #intractablepain

Most recents (6)

Thank you to @BethDarnall for speaking at #Minnesota @MinnesotaDHS #Opioid Work Group mtg on Thursday: Spoke of importance of #patientcenteredcare, #patientconsent necessary if taper & strongly advised AGAINST force tapers & using pre-determined MME'S. #ChronicPain #NoOneSize
MN #opioid Work Group created Taper Guidance. It will be out 4 public comment soon. Some areas extremely problematic. Although it states NOT 2 taper solely 2 meet system or state policy; MN Quality Improvement requires Drs 2 meet MME thresholds = TAPER TO MEET STATE POLICY. 🤔
If #ChronicPain pt wants 2 try 2 taper from #opioid analgesics 4 any reason & CONSENTS, there needs 2 be safe way 2 do it. Problem throughout U.S, incl #Minnesota; is non-consensual tapering. Many experts, incl #addiction specialists, stress dangers & even state it's UNETHICAL.
Read 11 tweets
#PBM
Pharmacy Benefit Managers have undoubtedly created barriers 4 patients w #ChronicPain #intractablepain #PalliativeCare #RareDiseases w medical necessity for #opioid analgesics. Citing CDC GLs & going even further. This ex shows 67% decrease in Rxs.
benecardpbf.com/PBF/resources/…
All PBMs do something of this nature & plans vary. They should look for & prevent abuse & fraud, but as outlined in their own literature on policy, Benecard is absolutely interfering btw Drs & patients by using CDC GLs & unilateral decisions on what is appropriate for a patient.
Per CDC, based on their clarification of intent of #opioid guidelines; these policies meet definition of misapplication & misinterpretation. Being as @CDCgov @CDCInjury neglects to intervene in official capacity; PBMs, #healthcare insurance companies will continue this practice.
Read 5 tweets
A friend of mine who suffers from many, MANY #intractablepain conditions (among them, suspected EDS, dx'd IC, epilepsy and many more), was just surgically altered with a #painpump. She was told it would help with her allover pain.
She has been dealing with no #paincontrol for the past seven months in preparation for this surgery. She has been suffering sexual harassment and negligence by the surgeon due to her age and appearance.
She has been forbidden to ask any questions of the doc. 3 days prior to the surgery, she was informed that she owed a $3k copay and, if she didn't pay, she wouldn't get the surgery. First she heard of it. That sent her into a massive panic.
Read 12 tweets
Today, I'm seeing a lot of #chronicpain/#intractablepain community members going in on politics, thinking that politicians care one way or the other. Here's the truth about that. Warning: don't read if you don't want to know. #thread
1) Melania recently gave an anti-opioid speech. Here is the link:

ntd.com/melania-trump-…
2) Donald Trump's White House has been notoriously anti-opiod for the past four years.

whitehouse.gov/opioids/
Read 10 tweets
I have a grievance regarding my mom's care during her bout w/#sepsis. #dementia

At the end of October 2019, my husband & I awoke to find mom's breathing labored, & her mumbling to let her sleep. We let her rest. A fever spiked within the hour, & suddenly she became deathly ill.
She was twitching, sweating profusely, in full rigors, & unable to sit up/speak well. She looked TERRIFIED. I thought she had a stroke. Turns out, it was a high fever from an infected gallbladder. She landed in the #ICU. ALL her vitals were jumping around. It was horrible.
She landed in the ER & eventually the ICU. Turns out she had #sepsis from the infected gall bladder. The ICU's 1st step? Changing her meds around INSTANTLY. Specifically they rescinded ALL #opioids abruptly. After over a decade on them, she was thrown into acute withdrawal in ICU
Read 16 tweets
My name is Lelena.

I am a #ChronicPain patient.

I am required to pee in a cup monthly to show #compliance to my #LowDose #opioid regimen.

I am painted as despicable, helpless, & #unclean by the powers that be.

I am a modern-day #Leper.

#EndStigma #PainLeper
Newsflash, America:

I'm not JUST a #ChronicPain patient.

I am not helpless.

I am not #unclean.

I am not #despicable.

I don't just use #pills to overcome my #SeverePain.

I refuse all #stigma, misconceptions, assumptions, and #labels.

I am an #Overcomer.
I will be criticized for calling myself a #ChronicPain patient.

People will say: she wallows in illness. She enjoys it! She IDENTIFIES with her pain.

Wrong. It is part of my reality. I must face it & battle it daily.

And I do. Despite all the negativity I face from others.
Read 5 tweets

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