The New Norm for Chronic Pain Patients

By Rochelle Odell, PNN Columnist 

Come the new year, I will start my 28th year battling Complex Regional Pain Syndrome (CRPS). Like so many high impact pain patients, I have been experiencing a pain flare that isn't improving and prevents me from doing many tasks. I am praying it will get better and not become my new norm.  

I have been a palliative care patient for a couple of months now. Palliative care is not what many people think it is. My meds did not get increased and I still live at home. A home health RN visits me twice a week, takes my vital signs, asks how I am doing, how is my pain, and what doctor do I see next.  

I was evaluated this time last year for Transitional Care Management or TCM. It’s usually for patients getting out of the hospital and is short term -- only two to three months at the most. A medical doctor evaluated me and told me I was “high functioning” but needed assistance. High functioning? I have no help and only have me to depend on. I have to function to some degree just to survive. 

My RN tells me palliative care is meant to help patients be as comfortable as possible. They used to be able to give their patients pain meds, but now all they can give is Toradol, a non-steroidal anti-inflammatory drug, which does me no good because I am deathly allergic to NSAID's and aspirin. She is compassionate and caring and says what is happening to me and others in pain is "Just not right." I have to agree with her. 

Perhaps part of this new norm is reading so much negativity coming from our not so illustrious leaders in DC, along with blurbs from the CDC and the FDA. To me it appears to be getting worse as opposed to getting better.  

Is my increased pain clouding what I am reading? I don't believe so. Many of us suffering from high impact pain -- about 20 million Americans – are unable to get opioid medication. Even those suffering from life ending cancer are being turned away. That is nothing but plain cruelty. 

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There is a core group of pain patients, probably numbering a few thousand, that is trying to change things. We call and write our elected officials and various government offices that have deemed it their duty to destroy our lives piece by piece.  Those that are physically able can attend a Don't Punish Pain Rally. There is another DPP rally coming up October 16. I have only been able to attend one rally. It's hard when one is in extreme pain and with limited funds to be able to travel to the rallies.  

Why Are We Being Treated This Way?

What is happening to us? Why are our physicians, those trained to treat and care for us, turning their backs on us? Why are we being shunned? Why are we being treated like we did something wrong?  

Why are people who abuse drugs being treated with compassion and care but not us? They hurt their families, they steal, they destroy their bodies, they seemingly don't care. We don't do any of that. Our pain is caused by diseases we never asked for. We care, we want to live and we want to participate in life.   

They get clean needles, clean rooms to shoot up in, free Narcan, and in Canada they are giving Dilaudid (hydromorphone) to those who abuse drugs. Dilaudid is an opioid used for treating severe pain. I was on Dilaudid three years ago. Not anymore.  

I just read about a county in England that is going to provide medical grade heroin twice a day to drug addicts. Why? The police are hoping it will lower crime in the area. I bet they have lines form they never expected.  

So now those who abuse are getting free heroin. Yet pain patients are kicked to the curb. How can physicians care for one who abuses their body but refuse to treat a human being suffering from intractable pain? I don't mean to sound so cold when it comes to those who abuse, but people in pain are suffering unrelenting pain because of them.   

If we ask for meds, ask for referrals or refuse a treatment we know will have adverse effects, we are accused of being non-compliant and dropped by our doctors. I believe the loss of compassion from our physicians is why many of us are having these unexplained pain flares that are becoming our new norm.  

I have been reading on social media that patients on opioids who move or are dropped are finding it impossible to get a new primary care physician. I saw my PCP last week and asked her about it. She emphatically told me "they" would not accept new patients who are on or had been on opioids. I was afraid to ask who “they” were, but am assuming it's all or most of the doctors in this area. 

I am sorry for all my friends in pain and for those I don't know who are in pain. I am sorry we are being treated like addicts. That those in healthcare would turn a blind eye to us. My heart breaks for those who feel the only solution is to take their life to end the pain. That is so wrong. Human beings are being pushed to that point by those elected to represent us and those in healthcare who are supposed to care but don't. I am so very sorry. 

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Rochelle Odell lives in California.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

‘Don’t Punish Pain’ Rallies Draw Local Media Coverage

By Pat Anson, PNN Editor

Hundreds of people – including some in wheelchairs and others on crutches – took part in a nationwide series of rallies Tuesday protesting the poor treatment of chronic pain patients.

“Don’t Punish Pain” rallies were held in over 80 cities from Anchorage, Alaska to Jacksonville, Florida. The protests were organized on Facebook by a grassroots group of pain patients, including many who have lost access to opioid medication or seen their doses drastically reduced due to federal and state guidelines that target opioid prescribing.   

Rally organizers were disappointed by the low turnout in some cities. Only a handful of people showed up for rallies in Las Vegas and Providence, Rhode Island. But over a hundred patients and their supporters rallied in Oklahoma City. And about two dozen people rallied on the steps of the state capitol in Olympia, Washington.

Due to their small size, the rallies have yet to attract the national media attention that organizers are hoping for.

But they have been successful in drawing local media coverage and getting reporters to tell a side of the “opioid crisis” that’s rarely addressed.

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DON’T PUNISH PAIN RALLY IN OLYMPIA, WASHINGTON

“We’re invisible. We’re hidden in our homes and our beds and in our rooms,” Crystal Irwin told CBS4 News at a rally in Denver. “People don’t know what we’re going through.”

Ben Lawrence has lived with chronic pain since an accident in 2009. He told CBS4 he was still able to work until his doctors stopped giving him opioids.

“They make you feel like you’re a drug addict,” Lawrence said. “They don’t give me the medication I need to go to work. I want to go to work.”

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Rally organizers in Stuart, Florida told ABC25 News that patients are being unfairly targeted in the opioid crisis when the real problem is illicit drugs.

"They are calling this an opioid crisis when actually it's a fentanyl crisis, and they can't control the drugs coming into the United States. But they can control people like us who get our pain medication to survive," said Michael Courtright.

Patients are calling for major changes in guidelines released by the CDC in 2016, which discourage doctors from prescribing opioids for chronic pain. Although voluntary and only intended for primary care physicians, the guidelines have been widely adopted as mandatory by insurers, regulators and healthcare providers.

“Chronic pain patients all across the country are losing access to their pain medications that they depended on sometimes for 20 or 30 years,” Kristen Blanton told Fox55 News in Urbana, Illinois.

Don’t Punish Pain organizers held their first nationwide rallies in April and are planning another series of protests in January.

The Hidden Costs of Patient Advocacy

By Barby Ingle, PNN Columnist

I have been advocating for chronic pain patients and the pain community since 2006. I started advocating because my chronic pain journey was long and hard, yet my story was by no means original. What happened to me was happening to far too many others. We were being ignored by the medical system and had lost our voices. 

I decided that it was time to get my voice back. 

I first started advocating for myself with my own providers, then started going to doctor’s appointments with other patients, followed by peer-to-peer mentoring of other patients and attending health events. Within a few years I was being asked to be the patient representative at many conferences. 

I didn’t start using social media until 2009. Doing so opened up a whole new set of ways to advocate. I began connecting with people all over the United States and the world. In 2010, I was invited to testify at a Defense Department hearing in Washington, DC and also at the Arizona legislature. 

I had patients attack me on social media for not being sick enough. Well, they haven’t seen me at my worst! What they saw was the branding and marketing image of me, which puts an emphasis on positivity. 

I recently watched an argument on social media over how much advocacy costs. There were two sides to the argument. On one side were those who think advocacy should be free and that it costs nothing. The other side was saying that money is needed to fund advocacy work and that people should donate to pain organizations who do it for them. 

If you asked me during my first 5 years of advocacy, I would have said it is free to be an advocate. But over the past 7 years I’ve learned that there are many hidden costs outside of the time you volunteer. 

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As an advocate who makes phone calls, your monthly phone bill would be a minimum of $25 for each phone line per month, plus another $20 for unlimited long distance. For online advocacy, internet service fees would be about $45 monthly. That’s not counting the cost of a computer, printer, telephone, office space, supplies, newsletters, etc.

Whether you are going for in-person advocacy or mailing letters, you need to take the time to research the issues and work on prep materials. That may take 10 to 20 hours per issue. If you are lucky enough to be paid for your time ($15/hour is the proposed national minimum wage), that would be a minimum salary of $150. 

Traveling to your state capital could cost a tank of gas, plus your time. That is not much. But to go to meetings in Washington, DC – as dozens of advocates recently did to attend an FDA hearing -- you will need to pay for your flight, hotel, meals and ground transportation.  

When someone like myself is paying for most of these costs privately, it adds up to tens of thousands of dollars a year. Can you do it for less? Yes, but then you are getting less out of your advocacy work and it is going to be harder to make a difference. 

We do need individual patients to write letters, make phone calls and call for change. But to say that there is no cost involved is really not accurate at all. There are many other costs, like writing social media content, pamphlets, resource materials, business cards, etc. that should be taken into consideration.

Just recently Don't Punish Pain rallies were held across the country. The campaign is said to have begun with one woman and a stack of index cards, but that doesn’t factor in all the other costs of signs, banners, telephone calls, and posting on social media, or the hundreds of people who volunteered their time to organize and attend the rallies. 

Advocacy costs at all levels. Recently I heard from a patient who was on workers compensation, who lost her provider and medical care because she was so involved in advocacy they thought she had a job. 

There are millions of dollars involved in advocacy and the work takes time, effort, heart and care. Please know that I am glad for all advocates and the help that comes from any efforts they make. We are not thanked a lot. 

I send out big thank you notes to everyone who has sent an email, made a phone call, testified in person, attended a doctor’s appointment with another patient, and made a difference for even one other person. Whether you are paid for your advocacy work or not, it has value and it does at minimum cost us energy pennies! 

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Rallies Draw Attention to Suffering of Pain Patients

By Pat Anson, Editor

Hundreds of people braved the rain, wind and cold Saturday to take part in a nationwide series of rallies in support of people living with chronic pain and illness.

The “Don’t Punish Pain” rallies were organized by a grassroots group on Facebook and held mostly at state capitols in 47 states.

The primary goal of the rallies is to get the Centers for Disease Control and Prevention to change its opioid prescribing guidelines, which have caused many doctors to stop treating patients with opioid medication or to drastically lower their doses.

Although attendance was sparse in some locations, a dozen or more people gathered in Baton Rouge, Dallas, Little Rock, Annapolis and several other cities.

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Some protestors brought an empty pair of shoes to represent people who were too ill to attend, those who have died due to poorly treated pain, and some who have committed suicide.

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While the turnout may have been disappointing to some, the rallies were successful in attracting local media attention – shining a rare spotlight on the plight of pain patients and how many are suffering in an age of hysteria over opioid medication and the overdose crisis.

"We have gone so much to the other side that we are forgetting that there are voices of pain that need to be heard," Carlene Hansen told KIVI-TV in Boise, Idaho. "I've been on medications for 5-7 years and always take it as prescribed."

 "I think that a responsible doctor is going to do the right thing and prescribe the right medications for the right individual," Michele Thomas told the News Tribune in Jefferson City, Missouri. "Where I have a problem is when the government comes in and tells the doctor that they cannot prescribe what the doctor feels is the best medication."

“Doctors need to be able to treat their patients again,” Karlyn Beavers told WLNS-TV in Lansing, Michigan. "I have pain every day. Whether some days it may be light, some days it's heavy, but it's always there.”

The Don’t Punish Pain rallies were organized in the last few months on social media without support or funding from patient advocacy groups or pharmaceutical companies.

Since the CDC released its opioid guidelines in 2016, many patients say the quality of their medical care has gone downhill. 

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In a PNN survey of over 3,100 patients on the first anniversary of the guidelines, 84 percent said their pain and quality of life had gotten worse. Over 40 percent said they had considered suicide and 11 percent said they had obtained opioids on the black market for pain relief.

CDC researchers recently admitted that they significantly overestimated the number of Americans that have died from overdoses involving opioid medication. A CDC report released last month found that most drug deaths are actually caused by illicit fentanyl, heroin, cocaine and other drugs obtained on the black market.

‘Don’t Punish Pain’ Rallies Set for Saturday

By Pat Anson, Editor

Dozens of protests are being planned across the United States this Saturday to draw attention to the plight of patients suffering from chronic pain and illness.

The “Don’t Punish Pain” rallies were organized by a grassroots group on Facebook and quickly gained traction in the pain community – where there is growing frustration over reduced access to pain medication and medical care.

“One day we were talking and decided we could have a rally. And it went from there. It just exploded,” says David Israel, a 30-year old Michigan man disabled by chronic pain.

Israel says the group is planning rallies in 47 states – mostly at state capitols – and has obtained the necessary permits. For a complete list of the times and locations, click here.

The primary goal of the rallies is to get the Centers for Disease Control and Prevention to change its opioid prescribing guidelines, which have caused many doctors to stop treating patients with opioid medication or to drastically lower their doses.

“There are millions of people that are being affected by this. Not only do we need to get the CDC to change but we also need to get help for the people who’ve been abandoned,” says Israel.

Israel was recently abandoned by his doctor and has been unable to find a new one, in part because of a disputed drug test. He suffers from hydrocephalus, a condition that causes spinal fluid to build up in his brain, leading to headaches and other neurological problems.

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“I don’t have a doctor at all right now,” said Israel. “I need pain meds, but I don’t have any because there was a false positive last year that I proved was false, but the doctor said there was no such thing as a false positive. She dropped my pain meds overnight.”

Some patients have complained to PNN that the rallies are poorly organized and they don't know who to contact or where to get further information. Perhaps the best thing to do is to join their Facebook group by clicking here and see if the information has already been posted.

The Don’t Punish Pain rallies were organized in the last few months without support or funding from other patient advocacy groups. It truly is a grassroots effort, supported by volunteers like Rhonda Posey, a Texas grandmother who suffers from arachnoiditis, a chronic spinal condition.

“It’s been fun to be involved with it, but it’s been quite a job,” says Posey, who helped organize the Don’t Punish Pain rally at Dallas City Hall Saturday morning. She was unable to get a permit at the state capitol in Austin, possibly due to the stigma associated with opioids.

“We had to have legislator sponsorship (for a permit). And we reached out to probably a dozen people trying to get someone to sponsor us and nobody would do it,” she told PNN. “They probably didn’t want their name associated with something like that.  

“Dallas has been very nice. Someone will be there with us the entire time. They’ve been real nice about everything, so it’s worked out well.”

Posey has also been successful in getting some advance media coverage of the rally from local newspapers and from KTRE-TV.  Her group plans to bring 50 pairs of shoes to the rally to represent patients who have died from suicide or medical conditions caused by untreated pain. 

She and Israel say it is time for different tactics by the pain community. Just signing petitions and writing letters to politicians about how the government’s response to the opioid crisis is hurting patients hasn't been effective.

“Nobody’s got the guts to standup and say wait a minute, there are other people suffering. It’s not just people that are suffering form addiction. It’s not just the families who are suffering from people who have died from overdoses," Posey said. “What about me? What about the millions of chronic pain patients that are suffering? What about us?”