Chronic Pain Patient Activist Wants Your Help

Chronic Pain Patient Activist Wants Your Help

By Ed Coghlan

In the wake of the adoption of the CDC Guideline for Prescribing Opioids for Chronic Pain there has been a constant stream of criticism from chronic pain advocacy groups and individuals about the Guideline’s impact on patients.

With that criticism has come a call for more action—in Congress and state legislatures- and a growing frustration that not enough is happening fast enough.

At the National Pain Report, we receive emails, comments and phone calls from people asking, “what can I do?”

That brings us to Lana Kirby,  a retired paralegal from Indiana now living in Florida, who suffers from a neurologic condition that necessitates her to use pain medication on occasion.

When she was living in Indiana, getting treated by her neurologist and having her prescriptions filled was never a problem.

However, Lana found out when she moved to Florida finding a doctor and getting her prescription filled was indeed a problem.

“What’s going on?” she wondered.

Lana, who wound up her career working in the U.S. District Court in Indiana, solved her own problem. She drives back to Indiana every 90 days or so to see her neurologist.

“It’s an inconvenience,” she said.

She also quickly added that she knew for most people that wasn’t a solution.

So Lana decided to do something— to find out if other people are having the same problem that she is.

“I felt we should quantify the problem,” she said

So she has been promoting a survey to find out how pain patients have been impacted. (To take the survey, click here)

Over 1,000 people have filled it out in the last two weeks through promoting it on social media. (We are hoping many more National Pain Report Readers participate)

“Some of the stories that the people are sharing are heartbreaking,” she said. “Something needs to be done.”

Once the survey is tabulated, she’ll be sharing the results with the National Pain Report audience and other opinion leaders, advocacy groups and elected officials.

“I felt I had to do something,” she said.

She has.

We ask you to fill out the survey.

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Authored by: Ed Coghlan

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Unable to take Lana Kirby’s Survey on line. Is the system down temporarily or is her survey closed? I may have already entered my comment, but would like the information below to be listed in the comment, please…. My pain management physician (PMP) discontinued my Norco for Fibromyalgia, stating it would cause me more pain long term. It was giving me 30% pain relief, but two years ago, it provided about 60-70% pain relief. The same thing has happened with the Lyrica that I have been on for seven years; it has slowly become less effective.The other medications I am not able to tolerate. I was on LDN for three months, with no improvement. I also have peripheral neuropathy, IBS, and Osteoarthritis. I have resorted to Kratom which will most likely be banned after the Drug Enforcement Agency (DEA) December 03, 2016 deadline for Public Comments. Mr. Chuck Rosenberg is the Director of DEA. I have a lot of Fibro flares; they increase in the wintertime. I won’t be able to tolerate the pain without some help. I am a 62 year old retired Ultrasound Technologist, who was forced to leave her career because of cognitive impairment and episodic memory loss. I reside in Virginia, a state that has banned medical medical marijuana (with the exception of uncontrolled epilepsy). My state has stiff penalties for 1st offense possession of a very small amount of marijuana. I need help trying to find legislative advocacy groups in my state. I have no money to pay for legal service. I live on social security disability with no retirement to fall back on. No one cares that the “voluntary” guidelines that the CDC posted has caused a concern among PCP’s, and PMP’s. They could possibly lose their medical practice license if they don’t reduce dispensing opiate-based medications…or at the least be under stringent scrutiny by our government. This has left thousands (or maybe millions) of people who have been told that they “will have pain the rest of their lives, and need to get used to it or just think of pain differently”.I have chosen to not live with pain… my daughter heard this from me and requested that I visit a Pain Psychiatrist. Fortunately, the Pain Psychiatrist has Fibromyalgia and Lupus. I have seen her three times and each time, she increases my anti-depressants. The anti- depressants are not working for me, so we will see! For now, I just want to focus on my state and federal legislators. How do know if my letters and/or phone calls are being shared with them instead of being thrown in the trash? I would appreciate any assistance.

After more research I discovered that many people had left comments about abusing pain medication years ago. The comments went on about people taking large amount of meds. I was taking in NY 2tabs Q6H MDD 8. Just one person alone was taking over 30 tabs a day plus handfuls of valium. Over 100 comments and not one mention of pain from anyone. It reminds me of the ‘Sudafed’ scare. People making meth using 500 tabs min. Now for a box of 30 you need a drivers license, signature and monthly limits. My Narcolepsy med is $1700 d/t usage by college kids. Does anyone see a pattern emerging here. We are up that famous creek and the low lifes have the paddle.

Snowy Profuse Tundra

Bernadette, my chin dropped to floor after I read your story. I had the same reactions when I read Zoann’s story and several others.

My PCP retired last fall. He had been my pain manager and when he decided to retire, he referred me to an onsite pain management clinic a few months before his retirement date, so that I would establish myself there before I had to get a new PCP. The first PCP I tried, an ARNP, told me flat out that he was glad that I was already a patient of pain management as he would not prescribe *anything* for pain control. I took that to mean that he wouldn’t even prescribe higher-dose ibuprofen if needed for an ankle sprain. Going over my list of meds, he noted that the promethazine I take for the very frequent nausea of my gastroparesis, was another drug that can be misused. I got a strong feeling that he had already written me off as an addict.

He cemented in my mind as not the one for me by refusing my request for a refill for citalopram (Celexa), wanting me to get it instead from mental health. He continued to refuse the refill when I told him that my current supply would be gone within 2 weeks. I would be extremely lucky to find a psychiatrist who would have an availability within 2 weeks, especially during the Christmas season. My pain manager ended up writing it for me. At least she understood that Celexa requires a step-down weaning. I was wanting to switch to something else anyway. It took me 5 months to completely wean off of it.

I *ran* away from him and went to another PCP, also an ARNP. She and I get along well. I was thankful for my doctor’s 3-month warning about his retirement. I would have been accused of doctor-shopping, which I really was doing but it was not because of my opiates. I was trying to find a practitioner like the doctor who retired. He listened to me, heard what I said, and treated me like an adult who knows her own body.

My first Pain doctor in FL stated that since I was not in a pain mangement clinic in NY & being treated by my PCP he could not believe me about my pain levels. Said all NY doctors were incompetent. Forcefully opened his office door and ordered me and my husband out of his office. When I was in the hall he told my husband to divorce me. Reported his actions with little result.

Jean Price

Hopefully this survey will give you an overview of patients and their issues with pain treatments. There are widely varying problems and access to care. It would be great if family doctors would re-enter patient care for those in pain…and keep an overall picture of their patients needs, but this has created a new specialty and I doubt it will happen. I asked mine if I went to a pain clinic every six months for an evaluation and their recommendations, would he pick up my care to keep it all under one roof…the answer was NO because he didn’t want his office and staff interrupted or his files reviewed by agencies to monitor him!! So patient care is secondary to other concerns., it seems!

My story is kind of opposite of Lana. I lived in Ohio and couldn’t get help. After a year of unending pain after an accident, I found a doctor in Florida, and left my husband to move down there for treatment. Then, after another year, my insurance decided they could not fill my prescriptions through mail order. There was one month when it took me 17 pharmacies before I found one to fill my prescriptions. I have had one doctor, been on the same medication the entire 5 years, with the exception of trying alternatives to opioids, which did not work for me. My dosage has increased over the years. I have a wonderful pharmacy now, but every month I get anxious the few days before its time to refill. I worry this might be the month when they tell me they can no longer fill my prescriptions. It is madness! Is a diabetic not addicted to insulin? No, they are dependent, not addicted. Just as we are. We are not addicts, we merely depend on these medications as we attempt to live a normal productive life.

Tim Mason

That contract that you sign protects many people. It keeps people honest. My contract said that I would not seek pain medication from other doctors. This does not include certain types of injections or procedures. I asked mine three weeks ago about ACUTHERM Decompression catheter I saw in the book “Pain -Wise” (A patient’s guide to Pain Management), He said that they did not do that but if I could find someone that could or would do it, that is was OK. I actually took my copy to my visit. Interesting note that the PA took note of the authors.


Thanks Lana for all you do. We have 2 pain patients in our household however only 1 can take the survey from my computer. Anyway to fix that? My wife is trying to get to the library to take it

Christine Taylor

Zoann Murphy-

Pain Clinic does not treat patients with multiple diagnosis? How is that any different from saying that they won’t treat black people or that they won’t treat a gay person? People in the USA really need to do something. This is flat out discrimination.

It is also discriminatory for a doctor to make a chronic pain patient sign a contract that states the doctor refuses to treat their condition. Most patients on disability are disabled because of chronic pain. Are businesses allowed to routinely discriminate against the disabled?

Chronic Pain Sufferer

Done. Thank you for doing this!

Christine Taylor

Pool money together and file a law suit as chronic pain patients are now routinely being discriminated against. This seems to be the only disability that does not allow choice in treatment options. Informed consent requires that one should be presented with adequate treatment options with the benefits and risks being explained along with the benefits and risks of refusing treatment. What other disability requires that patients who are already vulnerable and likely making a lower income to undergo drug and urine tests at their own expense when there is no evidence of drug abuse? It is time to stop this nonsense. Chronic pain patients and their families are suffering physically, mentally and emotionally. Quality of life is greatly diminished and patients are left to feel humiliated and embarrassed. The USA accuses other countries of Human Rights’ violations yet they are violating the rights of their own citizens and in doing so are condemning them to a life of torture.

Tim Mason

There needs to be a lab done in medical schools where a potential physician has medically induced pain until he begs for relief. It would be of the chronic pain type. It could be induced by several of the stinging sea creatures.
The pain would mimic different conditions depending on the specialty that the doctor was wanting to practice.
This would not be any different than our military being exposed to tear gas or other agents.
Police departments use a tazer on each other.
Some courses have made people spend a day in a wheelchair while doing things most people take for granted.
I feel it is a good idea.

Zoann Murphy

I tried to fill out the survey, but because I can’t answer some of the questions (there were not options such as “non-applicable”), I couldn’t finish it. I’m sorry, because I have a different perspective than most pain patients - I don’t take pain medications because my PCP has a signed contract with his patients that he will not prescribe pain meds. There is only one pain management clinic near to my location and they don’t treat anyone with multiple diagnoses.

Ms. Kirby, please feel free to contact me if you want more details about my story.

Al Patient

Lana, do you think your results will be used in government studies? I have one question too. When you say confidentiality is “as much as possible,” what do you mean? Thanks.


Very true, Sandy Auriene Sullivan - coming soon to a doctor’s office near you …

Crystal Jones

Ms. Kirby,
Thank you for collecting this survey.
I am first off, a Mom to a now adult disabled daughter with many issues, RSD now full body due to lack of diagnosis, AMD no one believing a !2 year old little girl that said she was in the worst pain of her life, Lupus, Fibro, many things now.
I am also disabled but I am her sole caregiver.
I am also an advocate. And I am totally appalled and disgusted with how patients with legitimate prescriptions are being treated.
Bad enough that we are STILL lumped in with Heroin Addiction, that we are often not believed, not adequately treated, and made to feel unworthy of care.
Doctors are supposed to “First, do no harm”. They are following blindly the bandwagon of recommendations and flawed statistics that the CDC hastily and erroneously released.
In my opinion, this is not only immoral, it’s unethical and cruel.
The alternate treatments? Who exactly will pay for those? Most of us have little to no coverage and try getting such things at a Community Health Department.
Pain KILLS. That’s right. Not only does dealing with chronic pain cause psychological changes within the body, it causes physiological ones, also. They need to NOW release the SUICIDE rates, since they so love spouting statistics off.
Some folks already have a lot of blood on their hands, and they know it.
I will be participating in your survey.

Paulette Diana Wright

Discriminated against RNFNP-BC. Forced to surrender licenses because of prescribed medications x 15 years for Fibromyalgia and Chronic back pain after 2 surgeries and 44 years of Nursing in Arizona and California. False accusations from people who don’t understand pain management ruined my career…but life goes on. Now an advocate for pain patients. I was a pain specialist in practice but still discriminated against! Past member American Pain Society. Now a volunteer for patients! Also author of a book on Pain misunderstandings in the practice of medicine called 44 years The Good and Bad of the medical profession.


I had to move out of Florida because the pharmacies simply quit filling my pain prescription. There was nothing I could do. Except leave last year. I live in Nevada and can only get 4 pills per day maximum OF ANY KIND OF MEDICATION. Gabapentin, tramadol, oxycodone. The pain medication is designed to last 4-5 hours max. I deal with it. It’s not pleasant but it’s better than getting nothing in Florida.

Sandy Auriene Sullivan

Over the last month my doctor not only adopted these guidelines in Florida all on his own - he’s forcing us into sleep studies too. He’s drastically reduced everyone’s medications and tried on me. Except when I went off a low bio-availability 12hr med back to one that worked; was able to reduce my own equivalency as oxymorphone performed so horribly it reduced my own tolerance and dropped 40mg equivalency.

It’s coming soon guys if you’ve not faced it, please expect it. My doc stated he had 2 deaths; I said “we are sick, we die and when we do we have our meds in our system” then “how sure are you they arent suicides?” he said “without any notes, I can’t say for sure….” at least he was honest. I said “well you should ask family what they think happened for sure; you should know that med reductions without meaningful change in pain is a recipe for disaster for patients”

I’ll participate in the survey.

Jacqueline Schneider

Thank you on behalf of a Facebook Support group for patients with Arachnoiditis and another for patients suffering from Tarlov Cysts.

My daughter has tn. Over 3 years now. She was born with treachers Collins syndrome. She 28 years old now. It’s hard to put all this into words. When she had flare ups and was in hospital. The er. Nurese drs and administration treated her so badly. Like I said there’s no words for it. So many with this problem trying to get proper help. We actually can see why they call this the suicide disease. If you like more on what we went thur let me know. Thx

Sue Walker

Why are you not supporting the National Pain Strategy and the White House Petition to implement the NPS?

Denise Myers

I have lived with chronic pain all my life. I am now 63 and have had pain relief for 3 years. Since my Kaiser Dr. Will not allow my pain Dr. To prescribe my pain meds. It must be through my primary care Dr. He insinuated I was an addict and EDS had no symptom of pain. I felt negated and not listened to. Back to square one, how depressing.