Chronic Pain Patients To “Assemble” at the CDC on June 21st

Chronic Pain Patients To “Assemble” at the CDC on June 21st

An Indianapolis woman is leading a group of chronic pain patient for a two-hour event in front of the Centers for Disease Control Office in Atlanta on Friday June 21st.

Johnna Magers says that patients—some of whom who will be in wheelchairs– from Texas, Indiana, Kentucky and Colorado are already planning to go.

The group is called Chronic Pain Warriors Unite for Our Right to Pain Management.

The idea she said is “we want to educate the CDC” about the impact its Guideline for Opioid Prescribing for Chronic Pain has had on patients.

In April, CDC issued a statement that stated that some policies, practices attributed to the Guideline are inconsistent with its recommendations. Here’s the media statement.

But for many pain patients that moderation was too little too late.

Magers has been promoting the event thanks to number of Facebook pain groups and others and says there’s understandably lots of enthusiasm for the getting more visibility for the chronic pain patient point of view.

The Facebook page for the event is CDC Protest for Pain Patients. As the Facebook page says, “We will have an assembly peacefully to show our dissatisfaction of the CDC 2016 guidelines that have affected millions of lives.”

In addition, she has what she described as a 40-page list of chronic pain patients who have taken their lives in the last several years and will have some cut-outs to commemorate them in their line of protestors in Atlanta Saturday.

Magers is a 50-year old woman who has battled chronic pain for 15 years—at times the pain was so debilitating she could barely work. “I know that I’m going to need pain medicine for the rest of my life.”

The group—which has already secured an assembly permit–will gather at Clifton Road and CDC Parkway in Atlanta. The event will also be live streamed on social media.

Magers wanted to give credit to a number of groups that have been supporting this effort including Pain is Pain, Chronic Pain Voices, CCP News Source, Chronic Pain Support-Pain Doctor.com, International Support Fibromyalgia Network, Adele Faba Foundation for CRPS/PAIN, Refugees of the Opioid Crisis, Don’t Punish Pain Rally Organization, Chronic Pain Patients Lives Matter, United in Pain, Pain in the USA, Pain Patients United Community, Chronic Pain Management Forum, The National Pain Report, PAW Pain Advocate Warriors, Richard A. “Red” Lawhern Ph.D., Steve Ariens P.D.R.Ph., Leah Houston, M.D., and Arnold Feldman, M.D.

Magers is looking for more people. If you want to find out more about the event or contact her directly, email her chronicpainpatients@gmail.com or visit their Facebook page.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ed Coghlan

newest oldest
Notify of

I live in Pennsylvania and Governor Wolf is among the leading Governors pushing this insane war on opoids. Question is WHY? We’ll after a lot of research and knowing the right people, turns out Governor Wolf has a reason to be fighting so hard. He is making millions off his investments into his “DBA” Private companies he uses to hide what he is doing. He is heavily invested in “NAXOLONE”, a drug used to reverse opoid overdoses and plans to mandate opoid patients also get his Naxolone for our protection… And his personal wealth. His entire term as Governor, he really has done nothing but raise out taxes and push legal gambling ( PA has the highest gambling profits and tax revenue), can’t help but wonder how much he invested in our casinos. He doesn’t care about our state a or the death of any opoid patient, just making millions. Oh this is just a wild guess and my opinion… For legal purposes.
God help us.

Fila Paragas

I am with you all in thoughts and prayers for your great efforts despite tremendous difficulties with all your conditions. Pain patients are suffering in US and elsewhere. Some are no longer around to lend their voices. Chronic Pain patients and their lives do matter! You deserve better…to be treated with dignity and respect! And more! Let your voices be heard. Thank you very much.

Jenny

I wish I could be there. I have recently been going threw it with my doctors. Every time I walk in the door literally feeling like I’d rather be dead, I’m told WE DO NOT give pain meds… ok I haven’t ask for any. I have ask you to help me… I have ask you to find out what is wrong and help me. Not yell We do not give pain meds. Physicians stopped caring. Rather it’s all these “guidelines” or what IDK. But enough is enough. Even animals should not be made suffer like this. We need help. Who are these people to sit back and decide that we have to live like this. Why do they get to decide when they do not know us. I get it. ER visits. Maybe limit those to 5-10 pills. But leave us alone. You do not see us everyday. You do not know my story, We deserve LIFE!!!! We can’t have LIFE with out our meds!!!!

Diane

Thank you so much Johnna and everyone else who is going. My daughter has Complex Regional Pain Syndrome or known as RSD. It rated the highest pain level in the McGill Pain Scale. There is no cure, no funding for research, no awareness. It’s known as the Suicide Disease and I know many who have taken their lives because they couldn’t take the pain any longer or their pain management doctors lower their dosages it just stopped giving them cold turkey. The CDC and FDA should mind their damn business and leave it between the doctor and their patients about how much pain meds are needed. I wish you all luck this two hour event.

Tonya

Im in so much PAIN right now I want to scream!!! My stomach is killing me so bad along with my back and neck. They’ve taken me off my pain meds and told me to seek pain management 2 hours away! Why!!!! I don’t understand why! Im no abuser!! I HATE THIS! My life sucks!!! I’ve thought of suicide so much from the pain. I’ve even went as far as to cut on my leg. I hate this town!! Everyone looks at you like your a abuser or your shopping for pain meds, IM NOT!!! So sick of being treated like I did something wrong when all the while I screaming help me with my pain, give me something!!!! Having cancer sucks! Please someone change this policy and help me!!! Im literally going insane with this constant PAIN!!!😭😭😭😭😤😭😭😭😭😭

Eleanor

I live in Atlanta, need major pain meds for a permanent medical condition and will try to be there. But exactly where and what time?

Becky

Thank you Johnna Magers and all who are going for those who cant. God bless you.

My daughter can NOT do ADL’s for ten years now due to extreme pain from undiagnosed Lyme.
To think all she need is pain management to live a partial life to be able to take showers, make a bit of food is distressing beyond words. I must must outlive her to take care of her, physically help her.

Think if your child was suffering full tilt 24×7 no lower than a solid 8 on pain scale. Think if your child got sick and gov said sorry nothing for your child.
Lyme that went undiagnosed for years drills deep in body. The sentence for these Lyme sufferers is worse than cancer, not joking. The gov has ruined ourlives as they 100% started weaponized Lyme and now wont treat the suicidal pain from it.

Lyme is rampant. If folks think they are safe, think again. There are more cases than HIV and breast cancer. When they, CDC, FDA, IDSA, get Lyme, they will know what it is like having a bacteria eat them alive.

No tax money from those who cant work simply because they need pain meds. The original guidelines from years ago was to use opioids to give a quality of life. We need get back to that.

Sorry if your kid took overdose of heroine, those that stand high and mighty. You did something wrong raising your kid, plain and simple. It is unconscientably wrong of CDC to lump illegal drug deaths and users with CPP folks.

Kelb

We are driving down to Atlanta to join you!! From Appleton, WI. See you there!!

Leah McPherson

I am 52 and in 2014 July I couldn’t hardly walk or talk it was like a stroke but it is neuropathy and Parkinson’s so I had to leave how to eat and all the that stuff again I didn’t loose it all the way by enough. Then in October 2014 my husband found me almost dead my eyes were wide open but I was unresponsive I had pancreatitis all organs shut down all came back but kidneys. I was on dialysis for 3 years I prayed to God please make it stop I can’t take it anymore and my kidneys are good enough not to do dialysis at the moment what a blessing and it’s never heard of to be able to stop like that. My family doctor was prescribing my pain meds then one day hes like um we need to find someone else in prescribe your pain medication because the state is coming down hard on him drilling him why he is doing it. So I went to my neurologist and asked him if he would take over all my medicine for pain he said what the other doctor a chicken [edit] lmao I yep he is scared of the state. My neurologist said ok lets see whats going on if you need it you need it. They had me so low on pain medication I couldn’t do basic adl’s and if I did house chores I couldn’t hardly walk forward a few days it was horrible. So I sat down explained things to him now I am on 100 mcg of Fentanyl patch 600mg gabapentin 3 times a day and I was having horrible migraines in the er like 10 times a month constantly vomiting he gave me medication for that and if I get one I have a medication I take then if I still have it 2 hours later take another one. So I guess its can count my blessings that I have a doctor that understands and isn’t scared to stand up for me.

ElizabethR

I hope as many people attend as possible. I also hope the gathering gets some media attention and coverage. The cause of patients living with long term, incurable pain needs publicity outside our own circle, as well as “celebrity” support. I live in “the other” Washington” and cross-country travel is a trip too far for an 80+ Y/O retiree on a moderate fixed income.

Rb@lau

James McCay & CINDY:
..even those who do have family: DO NOT!!. We make them uncomfortable >>uncomfortable (that’s a thought-go figure). Many have “drank the Kool-aid!”
Obviously never have experienced more than a stubbed pinky toe. They better WAKE up!!

I have to pull back from cpp news & commentary because the stories are heart wrenching. If dealing with our very own circumstances were not bad enough.

I’m so sorry!! Humanity, empathy, & liberty have left the public square & policy. Yielding no justice4cpps! /-; Btw:& These mega churches SHOULD be caring for the sick, widowed, & orphaned—instead of buying airplanes & gold plated commodes! Another topic for another day in the life of a cpp.
——
Cindy: I often wonder if seeing us active(online & public)fighting for our lives is being twisted by these idiots & being used in their sick social experiment to see how we live reduced & cutoff from care/treatment.

RB@ Lau

James McCay:
..even those who do have family: DO NOT!!. We make them uncomfortable >>uncomfortable (that’s a thought-go figure). Many have “drank the Kool-aid!”
Obviously never have experienced more than a stubbed pinky toe. They better WAKE up!!

I have to pull back from cpp news & commentary because the stories are heart wrenching. If dealing with our very own circumstances were not bad enough.

I’m so sorry!! Humanity, empathy, & liberty have left the public square & policy. Yielding no justice4cpps! /-; Btw:& These mega churches SHOULD be caring for the sick, widowed, & orphaned—instead of buying airplanes & gold plated commodes! Another topic for another day in the life of a cpp.

Glen

Everyone (if they haven’t) should read up on the ACLU stand on pain patient rights. This is definitely a civil rights issue.

Thank you and good luck. It would have an enormous impact if a national news channel or even one news channel would cover it but it being just on social media just only people that are fed up will watch it. Like Martin Luther King said I have a dream. For intractable pain people, I have a dream to live life to the fullest without such severe pain and not be treated by the fear that the DEA has put into Physicians. That I be judged by my urine test / pill count only and not by the character of addicts. I hope I can survive this turmoil to see this dream become reality.
Godspeed Warriors.

Cindy

I would love to do this. But there is no way I can make it. For those of us who can’t go maybe there is someone, we could all write to.

Cindy

I’m thrilled at this but really don’t understand how anyone in terrible pain, especially under forced tapers, is able to participate. Maybe some who live locally who have someone to take them, but no one who has to travel.

I barely leave the house. Actually, I barely leave the sofa. It’s been so bad in recent months due to a med adjustment — to increase one Rx but reduce another to see if that would help while keeping the forced taper in place — that I consider it to be a big day when I shower and make scrambled eggs. I’m not exaggerating.

But before that, I’ve still been on disability for a decade and couldn’t work even if I didn’t have excellent disability income from the disabilty policy my last job came with, plus a smaller private policy that I paid a lot for but was clearly worth it, especially since not all my jobs had this benefit.

I am super lucky, and grateful, to have this income, but really could never work no matter what. I suppose if I had no income on top of the pain, I’d have killed myself by now. I’ve been extremely poor in the past and don’t think I could do it again — on top of the pain. I’ve lost enough people in my life due to the pain; I can’t imagine if I were completely broke too. I really think then I’d be 100% alone.

Maybe the type of pain matters? I have pelvic pain syndrome and can’t sit up straight and need to be reclining. Standing still in placed is impossible for more than a few minutes at best, and walking — any activity at all — triggers my pain.

And since the beginning, my cognitive function became impaired in a way that would make doing my particular job impossible, where even small spelling errors could cause disaster. I used to think it was due to the pain, but now i think it was the pain combined with the opioids.

Anyway, my deep thanks to all who are participating, and to the organizers.

Dianna Perry

I want to THANK Johnna for standing up for those of us who can’t.

Glenda

I have been in pain since I was 26 yrs old car wrecks have caused all my pain and botched spinal fusion surgery in 1999 was clamped down and cutting the nerve in two in 2011 a different Dr took all the fusion out and replaced it If it had not been for a pain clinic I would have never known what was going on I have holes in my spine now from the first fusion I know I have to live on pain meds the rest of my life I will be 65 yrs old in August so punish me for what car wrecks and Drs that didn’t know how to a fusion so that’s it for me I go to my pain clinic every month 500 miles away Thursday and find out my Dr spent too much time with his patients so he was told to leave I trusted this man with my life so government has caused him to lose his job Thank you very much for getting in my Dr to leave get out of my Drs and My visit to discuss what we do about my pain

maxlet

Wish I could get there but Oregon is wayyy too far!!

Thank You Joanna Majers for going to CDC on 6/21. I wanted to go to D.C to do something similar. Got no feedback. How can the ppl make a change by sitting doing nothing. Use your voice!!! Good Luck. Is love to go but Im in Pa, can’t afford to cause like so many Im “on disability” low cash flow. Finally you did it.!!!! We all thank you.

I was taken off my pain meds in 2016, I went two years until 12/19 and was offered Belbuca starting at 75 mgc. I increased the dosage and am currently at 300 mcg. I find it has dulled and dropped my my pain from 8 to a strong 7 . I am paying about $96 a month and will be stopping this in July as I can’t afford this med and cost is no worth it. My wife says this med is also driving my pain rage beyond anything she has ever seen in me. My pain management Doc has been God about increasing the dosage but lately will only communicate via email. My insurance has come up with some meds but he won’t budge. I see him in July but I doubt if I will keep him as a provider. I volenteer at two major museums in Portland as a docent but due to a diabetic ulcer I have been off my feet since March. My lifestyle has changed to an all time low. The two failed back fusions from 2009 & 2013 have left me in terrible chronic back pain and nobody cares and I am tired of complaining .

Susan

Ok who at the FDA oversees the chemical make up of drugs. Since the pharmaceuticals got their panties in a wad, the manufacture of many of the drugs chronic pain patients take have hit the bottom. People are not getting the same quality of pharmaceuticals, as they did prior to 1/1/2019. Many patients were very satisfied with Qualitest. But now that quality is not available any more. Qualitest was bought by Par Pharmaceuticals, who was then bought out by Endo Pharmaceuticals. Endo is not concerned with the generics or the quality there in. There are 2 generic manufacturers – ScieGen, which uses talc as one of 5 fillers, and is the most useless of the 2. Then there is Jubilate Crispta (sp), which is one step ahead of the chinese company, ScieGen. So why with all the money the Pharmaceutical companies are making, while being ignored by the FDA, cant they make a generic that will work. ScieGen has lactose as a filler, and yet there are people out there who are lactose intolerant. The chronic pain patient needs quality medications. We need the FDA to do their job, or to close if they dont have time to oversee each and every drug on the market. Some drugs do not contain the proper amount of active ingredients. Some people have tested negative on drug tests because of the poor quality of the drugs they are are give.

WHERE IS THE FDA, AND WHAT/WHO IS RESPONSIBLE FOR QUALITY CONTROL?

Rebecca Hollingsworth

Thank you to EVERYONE supporting this event!! Make our voices heard, LOUDLY. As long as these “guidelines” exist, we are all in harm’s way. What really bothers me is that these “guidelines ” were intended for primary care providers and NOT pain management specialists. Moot point. Every type of doctor that can prescribe opiates were targeted. And now there is a pocket guide for opioid tapering. Are you kidding me? This is a bad joke that has done irreparable damage to cpp’s. As a longtime high dose opioid patient of 15 years, I am stunned that such a thing even exists. A cliff note on how to ruin someone’s life, but slowly mind you, slowly. Still skirting the real issue, that cpp’s dont need government interference in their lives. As we all know it has lead to loss of lives, loss of quality of life, undue stress, stigmatization ,and unwarranted suffering for all involved. I encourage everyone to do what they can to help each other. The road is long…

Melissa

Thank you for letting our voice be heard. I am a chronic pain patient of 10 years whose pain manager abruptly ending my medication. I had them mark my chart I did nothing wrong. It’s because of the CDC guidelines he is afraid of prescribing.

Terry

I know this doesn’t really have anything to do with this post about meeting in front of the CDC but I just had an epifany. The reason that the government decided to force taper chronic pain patients off their meds is this, the meth epidemic is a much bigger problem than opioids BUT they can’t do anything about it, they are literally powerless to even make a small dent, with opioids they can blame opioid addiction on the over-prescribing of opioid meds and therefore come up with new CDC “guidelines” that deals directly with the so called epidemic so it at least it APPEARS that they’re doing something to directly deal with the “made-up” opioid epidemic. So they’ve created this HUGE, MADE UP, OPIOID EPIDEMIC when in fact, it doesn’t even exist, unless you’re speaking of heroin and fentanyl, which again they are powerless to do anything about, just like meth. 98.8% of opiate overdoses are caused by heroin and fentanyl and only 1.2% by legitimate prescriptions for chronic pain patients. It shouldn’t surprise us that our government has been spreading a totally false narrative and lying to the American public. Shame on you CDC and DEA! How many doctors have lost their lisense because of these lies? How many suicides have there been from chronic pain patients with NO meds? So everybody suffers so the government can appear to look to be proactive, and now everyone is talking about the chronic pain patients who turned into drug addicts. Appalling!!! How helpless I feel. But how do we fight this? I don’t have an answer. Maybe someone should sue the government and force the false info to the surface.

James McCay

PLEASE GO FOR ME! If there were anyway possible, I’d be there!!! I’m with you all in spirit… I’ve been fighting with my laptop from bed for the WHOLE BROKEN SYSTEM in NYC for ALL homebound disabled and the elderly who were COMPLETELY FORGOTTEN under Di Blasio’s/Cuomo’s mis-“leadership” & fraud.
I have a Facebook page chronicling what a semi-young (I’m 52 now) homebound.bedridden person with Chronic Intractable Pain has to go through in NYC to get Medicaid to DO THEIR JOBS: it’s called “Being Physically Disabled in NYC”. @ekgman1.disabled

I’m homebound & mostly bedridden since 2009 from Advanced General Myasthenia Gravis with Hyperthymusism (no meds work right or at all!), Degenerative Disc Disease (6-discs; four in a row in my neck C3-C7 massively herniated, and two in my lowest back; L4, L5-S1 w/annular tear for 5-years all with pinched nerve issues), and Fibromyalgia. Those are only my medical problems causing severe-excruciating non-stop widespread pain that my once great Pain Management doctor WAS MADE SO PARANOID by the CDC that he lowered all his patient’s opioids by 10% or COMPLETELY WITH LIES. Then 3-months later he told me in privacy “I broke my Hippocratic Oath, I’m HURTING MY PATIENTS!”. I couldn’t tell him what I SO BADLY WANTED to tell him because no NYC Pain Doctors (including my Chronic Intractable Pain specialist!) are taking new patients for YEARS NOW.

I literally have no family (they are all dead). I have no friends who help either. So doing EVERYTHING myself for the last 10-years took its toll. My doctors REFUSE to give me invoices so I can get the Medicaid Spend Down Program which I’ve ALWAYS qualified for because NYC Medicaid changed their copay from 20%- to 20% OF 20%. So NYC doctors make PATIENTS PAY THE FULL 20% that they cannot afford! Everything is broken…

Gary Raymond

It is a shame that we have to show the CDC how many people have died of suicide for lack of effective analgesics. The CDC should be showing us how many people have died of suicide for lack of effective analgesics. The CDC should also be showing the world how many overdose deaths have been caused by illegally obtained drugs. What is the CDC hiding? Dirty chickens?

Stacie Wagner

Edit to previous post I was trying to say has support and uses it. Sorry about not reproofing before sending it. Thanks blessed be 🙏

Kel

I’m a 10 plus year CPP in Indy and would love to meet up with her and be a part of this movement. I have been a CPP advocate for INORML. Etc here in Indiana and been through the struggles many have. Stripped of my QOL when my meds were taken away and surgeries with naproxen are only options given to me at this time. Sad for all of us struggling Hoosiers and world wide. I’m ready to be heard!

Stacie Wagner

Friday June 21st is my 49th birthday and I want to say thank you, to Johnna Magers for the beautiful birthday gift you have given me by planning a protest at the CDC office in Atlanta. I hope that everyone that attends has support and useful. Please know that I am grateful to everyone for their sacrifice, time and I am sorry for the pain to be endured because you have attended. So thank you all for fighting for us, next to us and because of us all. Please someone use this chant or cadence – ‘The CDC is killing me! Lining your pockets isn’t free! ‘