What Have People Tried to Reduce Their Pain Symptoms?

What Have People Tried to Reduce Their Pain Symptoms?

The answer to this question falls into the category of ‘what hasn’t been tried’ (with various degrees of success or failure)? The nearly 5,000 persons who responded to this survey addressed objective questions and used the open comments feature to add clarifying information about their responses. Both approaches have offered enormous opportunity to understand the experience that you are having managing your chronic illnesses and associated pain in this challenging environment. So this installment offers a snapshot about the methods folks are using to cope with the reduction of access or changes to their care routines. First, let’s address some current contextual influences.

Current Pharmacy Utilization

An estimated 50 million people of all ages are actively dealing with chronic pain and of these more than 19 million persons are dealing with intractable pain. In 2018, 5.8 billion prescriptions were dispensed, up 2.7% from 2017 (IQVIA, 2019). Traditional medicines made up 97.8% of prescriptions in 2018 and most large therapy areas grew faster than the total market. Pain medicines, which include non-narcotic drugs, declined by 21 million prescriptions, driven by the declines in number of opioid prescription issued.

Chronic prescriptions (>90 days) account for more than two thirds of prescriptions. Prescriptions for specialty medicines − those that treat chronic, complex or rare diseases, grew by more than 5% for the second year even though these medicines account for only 2.2% of prescriptions and have little impact on the overall growth of dispensed prescriptions. According to market trends tracked and published by IQVIA (2019), 127 million specialty prescriptions were dispensed in retail and mail pharmacies in 2018, up by 15 million since 2014.

The number of patients with autoimmune diseases being treated annually is up 63% since 2013, an increase of six million patients. This includes persons with Ankylosing Spondylitis (11.4%), Ulcerative Colitis (23.9%), Crohn’s Disease (14.3%), Psoriatic Arthritis (17.1%), Psoriasis (16.6%), Rheumatoid Arthritis (6.3%), and all other autoimmune indications (3%). On average, survey respondents reported 6 or more diagnoses for which they need ongoing treatment distributed across 300+ ICD 10 codes.

Use of prescription opioids in 2018 declined by 17% or 29.2 billion MMEs. Changes in state regulations, clinical patterns, and insurance reimbursement patterns, together with implementation of CDC’s Guidelines for the Treatment of Chronic Pain and enforcement actions by the DEA, shifted utilization of high-dose prescriptions downward by 43% from a high in 2011.

Theorizing that prescription drug monitoring programs (PDMPs) and risk scoring algorithms will result in reduction of deaths by overdose and emergency room visits, PDMPs have been adopted by 49 states and risk scoring tools have been deployed into pharmacy and insurance operations, further limiting the prescribing of high doses of prescription opioids. This has led to many reports of patients for whom step therapies have been implemented, patient abandonment, or reports of suicide. There is little to indicate that PDMPs and risk scoring tools have had a positive effect on overdoses, suicides, or illicit drug use.

The rate of prescription abandonment increases steadily as costs exceed $50, where 31.2% and 27.6%, for commercially insured and Medicare Part D, respectively, abandon new prescriptions. Among survey respondents, 36% reported that the cost of healthcare remains steady at <25% of their annual household income, while 21% report 25-50%, 6% >50% of their annual income. This has led some to abandonment of prescriptions and a search for other methods of addressing pain reduction to increase daily function.

The HHS Pain Task Force

On May 9 and 10, 2019 the HHS task force completed its charge under CARA to produce a set of recommendations regarding the address of chronic pain and the use of opioids as a primary therapeutic tool. Even as members of the task force analyzed more than 9000 comments and incorporated the feedback into their comprehensive review, we are still left to determine as a community what it will all mean given the variability that is readily observable among persons who develop and live with chronic and intractable pain.

This survey is an attempt to address the current experience of persons with multiple chronic illnesses in order to break down stigma and begin to reset our ideas about the role that opioids and other tools play in allowing people to live their best lives during what is without a doubt the most challenging of times.

Non-pharmacological Interventions

Table 1 continued (Click for larger view)

Table 1 (Click for larger view)

Table 1 identifies 85 different coping non-pharmaceutical methods (ACAM) that 4837 survey respondents identified as having attempted with various degrees of success or failure. These methods generally fall into 12 categories described here:

 

  • ACAM (Acupuncture, Chinese medicine, Yoga, Tai Chi, and more)
  • Animal assisted therapy (pets, service animals, comfort animals)
  • Art therapy (arts, music, writing)
  • Electric stimulation (TENS, deep brain stimulation, spinal cord stimulation (SCS)
  • Esoteric treatments
  • Geno/Phenotyping (determination of genetic characteristics in order to identify potentially better drug utilizations)
  • Medical Cannabis (CBD, Vaping, Smoking, edibles, and lotions, and other configurations allowed by states)
  • Medical equipment (assistive technology, adaptive devices, home modifications)
  • Nutritional supplements (Kratom, Nutraceuticals, vitamins, dietary changes)
  • Over the counter drugs (all types of lotions, pain OTC pain relievers, alcohol, cigarettes)
  • Physical and occupational therapies (PT, OT, Rolfing, massage, myofascial release, etc.)
  • Psychoeducation and counseling (EMDR, Biofeedback, CBT, mindfulness therapy, and more)

Treatment Delivery Models

Table 2 (Click for larger view)

The methods through which treatment is delivered and received as noted by respondents is found in Table 2. There is significant variation by state, insurance plan, and characteristics of the local medical systems. Each state Board of Medicine regulates the delivery environment based on state regulation and available resources. There are by no means equivalent systems between the states. Some states struggle with geography, health system capacity, and payor source availability. Some states lack uniform Medicaid expansion which makes a large difference for some groups of affected patients.

The difference between insurance contracts and regulatory definitions imposes real challenges to ensure that people are served properly and that the data generated by these interactions means the same thing across systems. This is a challenge that we must grapple with if we are to get to solving the twin crises of caring for persons with chronic and intractable pain, and those who need care for the disease of addiction.

Pharmaceutical Alternatives

Table 3 (Click for larger view)

Respondents reported more than 120 various medications distributed across 21 classes of drugs (Table 3). Of concern here are treatment stabilization, involuntary taper, step therapy, and imposition of alternative medications. Because we are all concerned about the impact of multiple drugs interacting with multiple progressive diseases (polypharmacy) I put the individual self-reported drugs into the Drugs.com interactions checker (https://www.drugs.com/).

I looked for adverse interactions of individual drugs with other drugs (Table 4.a) and with specific diseases (Table 4.b).

Table 4.a (Click for larger view)

The single largest group that raised safety red flags are the Gabapentinoids and anticonvulsants which have become the most frequently substituted for opioids and other controlled substances among respondents.

 

Table 4.a continued (Click for larger view)

Table 4.a continued (Click for larger view)

 

 

 

 

 

 

 

 

 

Table 4.b (Click for larger view)

It’s Essential That We Challenge the Conventional Wisdom

The current national dialogue posits that addiction springs from exposure to prescription opioids by any number of methods and, that opioids are ineffective for long term support of chronic and intractable pain. Slowly, the recognition is dawning that –

  • patients are not passive about their healthcare choices but are captive in a system that is rapidly removing choice without evidence of efficacious outcomes;
  • both addiction and chronic pain are unique disease processes that may or may not share characteristics for individuals and treatment models-clearly the answer is person specific;
  • the prescription opioid crisis has been subsumed into a crisis of illicit street supplies that includes the availability of carfentanyl analogues, heroin, methamphetamine, cocaine, and things that we haven’t dreamed up yet;
  • the influence of economic and social stressors is real and exerts a tangible (if poorly understood) role in health outcomes; and
  • deaths of despair, polypharmacy, overdose, and suicide are different with origins that are still elusive to us.

We have a lot to learn about these issues. The only way to address this is for us to begin a conversation that sets aside the popular dialogue (which is full of error, stigmatizing language, political interference, and just plain zealotry) and get to a granular level that begins to break this stuff into its parts, examines the natural histories and lived experiences of persons who are affected. My next step is to determine how diagnoses and interventions are associated. That will be the next installment.

Table 5 (Click for larger view)

Table 6 continued (Click for larger view)

 

 

 

 

 

 

IQVIA’s 2019 assessment is located at this link: https://www.iqvia.com/-/media/iqvia/pdfs/institute-reports/medicine-use-and-spending-in-the-us—a-review-of-2018-outlook-to-2023.pdf

If you are interested in pursuing more information about any of the alternative methods addressed here, check out some of these links:
https://nccih.nih.gov/health/ayurveda
https://nccih.nih.gov/taxonomy/term/416
https://nccih.nih.gov/health/chinesemed
https://nccih.nih.gov/health/aromatherapy
https://nccih.nih.gov/sites/nccam.nih.gov/files/news/nhsr12.pdf
https://nccih.nih.gov/Health/magnets-for-pain
Music Therapy
https://nccih.nih.gov/taxonomy/term/630
https://nccih.nih.gov/health/reflexology
https://nccih.nih.gov/health/taichi
https://nccih.nih.gov/health/yoga
https://nccih.nih.gov/taxonomy/term/544
https://nccih.nih.gov/taxonomy/term/417
https://nccih.nih.gov/taxonomy/term/71

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Authored by: Terri A Lewis, PhD.

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I have tried…. Every patch OTC & RX. Every cream ,stopped at 40$!. CBD oil. CBD water@5$ a bottle. Ma- papOTC 650mg. Acetaminophen. That dosage your liver is shot is shot in 2 yrs. Scary.

I have tried every patch, OTCpain relievers. Which frankly at 650mg a tablet scares me. The last was a 40$ pain cream. So….EVERYTHING!!! Lets not forget, CBD oil, water. Kratom( God what a stomach ache)!

A. MacKenzie

I firmly believe that the attack on valid, legally prescribed opioids is a trumped up issue designed to – hate to say it – but to pad people’s pockets, for one thing. I also believe there are ideological underpinnings here, in large part to attack the pharmaceutical industry, aka “Big Pharma.” This took off like wildfire and as people are inclined to want to be on the right, popular side of anything, everyone is jumping on the opioid “crisis” bandwagon, unwilling to consider how this affects people with chronic pain issues for whom opioid pain meds are an absolute godsend! AND I MEAN THAT – when I stumbled across tramadol reading a fibromyalgia newsletter after years of suffering daily stiffness and pain that seriously affected my career and curtailed my social life, it was an absolute miracle for me to FINALLY have relief when a rheumatologist allowed me to try it. And I lived IN FEAR that someday, this too would be denied me, as I had tried for several years to get help with this issue only to be told that I needed to exercise more … when I had been very active. And I was a relatively young woman at that stage, having no idea what had gone wrong with my body. And now, that fear is being realized. So far I can still get my tramadol prescription, but I do not know for how much longer. And I think that it is not only ridiculous, it is CRUEL and downright CRIMINAL to deny people the only kind of pain reliever that works. Anyone who thinks any kind of over the counter med will even touch fibromyalgia pain and stiffness has not experienced it and has NO idea what they are talking about!

Another very concerning trend is that doctors are even declining to see pain patients for any matter. I have experienced this in another city and was shocked the other day that the only doctor taking new patients who comes to the small clinic in my rural area refuses to see pain patients. This is “sanctioned” discrimination, pure and simple, and should not be allowed.

mathian

There is no qualifying blanket approach to treating pain. Each person and his condition presents it’s own unique challenge to create a care and treatment plan. Depending on the condition, a patient will usually journey through most if not all treatments until something works to bring down the pain level. The first and continual mistake in the discussion of pain control including addiction. These are two completely different things. The addict using a an opioid drug for the addiction this is about the closet thing they have in common. There are numerous addictions for the addict. The science for understanding addiction is still in a discovery process as is the condition of pain. Again, there are no blanket approaches to these conditions. There are effective treatments for these conditions and denying patients the means of what helps is wrong in every way. The government should stop using people’s lives as way to control money. Until the day comes when the pain patients can have their medicine that works, I encourage all to use whatever will help them survive this. I know it will very difficult but hold strong as much as you can.

FST

Dr. Lewis,
You are to be commended for the amazing amount of work it took to present these findings. I’m in awe of your body of work, anyway!

But now for my small voice in the wilderness: I’m a holdout in a small uninhabited island in my mind; I base everything on my own experiences, just as we all really do. That’s the only frame of reference I have, and unfortunately for me, the management of my pain back seven to ten years ago was excellent, using polypharmacy through trial and error, finding something that worked for me.

Pain relief is now a distant memory. I think of it often; I relive the moments, hours, and days constantly while I now languish in bed. When the threats of doctor arrests and imprisonments for helping patients get relief got very real, my pain clinic had no choice but respond, if they wanted to keep their doors open and stay out of jail.

Of course their response was to cut, slash, cut, slash. I realize I’m one of the “lucky” ones who didn’t get kicked off and out; but my one-size-fits-all regimen of 80 MmE does not work for me. It’s equivalent to taking a couple aspirin. I’m now useless to my family, my church, and to the community in which I live and was once active in. The blame lies with Andrew Kolodny, MD, and PROPS. This one-man show effectively destroyed the lives of the suicide victims and their families, while untold others regressed and got back in the bed prisons that now hold us captive once again.

I have sweet memories of the life I had with proper medications at the proper dose that worked for me. Although it was short-lived, I’m thankful I did get to experience life in my flower and vegetable gardens once again. As I look out my bedroom window and see the weeds taking them over now, I can close my eyes and “see” the gardens at their finest once again.

VICTORIA FONSECA

I am a chronic pain patient who has had 3 back surgeries with coral cages and fusions and screws and plates at level 3,4,5,S1 joints and cervical fusion with screws and plates at C-3,4,5,6 left me with excruciating pain and nerve damage,degenerative disc disease ,arthritis,neuropathy,spinal stenosis,with electric shock pains radiating down both my legs,burning constantly on both legs and feet.I have tried physical therapy,Tens,epideral injections,nerve block injections,Acupuncture,all failed treatments ,my discs are collapsing and my neuro surgeon say all he can do is more surgery and my second opinion ortho Doctor does not recommend more surgery would get worse or possibly risk being paralyzed or death from all my complications from previous surgeries,so I am stuck living a life of pain and only those who are experiencing this pain understands.The only thing that helps me to function is my pain med’s Norco325mg/10mg ,I follow the Doctors orders on prescription and don’t break the law and I have been on my med’s for over 18 years and without my med’s I would be bedridden and I don’t get a high from my medication it relieves some of my pain so I am able to function out in life and be able to walk some and get around.So yes I have tried a lot procedures at no prevail and I am tired of being poked and throbbed and I have tried many other med’s that cause allergic reactions, hallucinating and very sick to my stomach.My pain med’s were reduced and I am left with more pain,I hope things will change and Doctors will have more compassion and these agencies will not give our Doctors a hard time that they are afraid to give out enough medication that will help people to function in life and that they won’t get penalized for caring for their patients.

Billie McCurdy

There is a man and a lady in My Pain Management Group they have cut their medicine by 75%. (As mine also) what scares me is somehow they have been in contact with a person that is sharing them part of their medication. People are so desperate. What if this medication is not real and homemade. I have to talk to them in lengthy conversations and I think I have gotten through to them not to be doing this. I know they hurt I know they’re desperate.,Is this how people are going to have to start doing in order the free there self from pain?
I myself take a lot of extra Tylenol with what pain medicine I have taken Advil which I am not supposed to take do to my digestive problems. And I will never take medicine from someone else for I am afraid I would die that it would be something that it’s not. How do we help people not take others medication? Over the last 20 years I have tried every prescription for my disease that is on the market prescribed by the doctors, but due to digestive issues and allergic reactions I am not able to take things that can help.
Something is going to have to give. I’ve already lost two to suicide due to the pain. Those with PTSD those that had 6 to 7 surgeries . They just could not live with the pain. Before all this tapering they were functioning and being a good part of society and accepting their disease. But thanks to the government’s involvement they are gone as are many others out there. I feel for the families that they left behind because there was nothing they could do to help them. May God touch those in charge and let them see how they are destroying what little lies people with chronic conditions . I would not wish my pain on anyone but if ust for one day they can feel the pain that we all go through maybe they would understand and fight harder for chronic pain people.

I didn’t see Dextromathoraphane mentioned. My doctor and I discussed some information I’d found and she did some research and I have to say I don’t think I would have made it through this opioid panic and its detrimental effects without it. I had read about other patients having luck with it but it doesn’t appear on any of the lists here.

omg, I’ve got a more than 4 page list (single spaced) of stuff I’ve tried. And that’s only a fraction of them…I’ve forgotten many in the last 4+ decades, & never bothered to list the herbal things individually.

Rosalind Rivera

Finally, someone has taken hold of the reins. It is indeed sad and criminal that such agencies as the CDC and others have a definitive influence on a tremendous number of pain patients suicides as well as our turning to such pacifiers as alcohol and heroin. The revamping of the system must be accelerated as for as long as the situation remains static as well as crawling at a snails pace in changing the current status of pain medication doses reduction and cutting off of pain medications, suicides will absolutely continue to rise. We need change and we need it now!

Gary Raymond

Where are the reports for illegal, recreational use of controlled substances, Dr. Lewis? Those in pain do not abuse or divert their medication. Show us the entire portrait, not just her smile.

Stacie Wagner

I wonder why suicide rates of chronic pain patients aren’t being looked at more closely. If the military can provide a 22 suicides per day of service members in order to increase public awareness then I would think that it could be done by anyone with access to that information. If anyone knows or has this information I would like to be able to read it. I just don’t think people understand that suicide will continue because many of us believe it is inevitable now due to the lack of pain control. I think many of us are just one doctor visit away from tragedy. I thank you again for all of the information in this post.

In May of 92 I was in a serious car accident that almost took my life. I wore a cast on each leg. Half of my face was full of glass for I had to pull it out of my windshield, both knees were smashed and my ankle required two metal screws, for nine months they didn’t know if they would have to amputate or not. By 1998 my ankle was full of arthritis. The specialist I had at the time of the accident stated I would be wheelchair-bound within 20 years. Thank God he was wrong. My back, hips, knees, and ankle are now consumed with severe and chronic osteoarthritis. That’s what my physician put on my form that enabled me to get my disability tag for my vehicle. I’ve tried many things. Massage therapy, chiropractors who only made things much worse, physical therapy, creams and sprays, ice and heat, steroid injections in both hips, injections from pain clinics in my back( that caused me to go into cardiac arrest twice), aspirin, goody powders, Tylenol, and last but not least, prayer. So far the only thing that has helped me immensely has been taking my opioid prescription medicine. I went many, many years without it thinking I would soon be wheelchair-bound. After I found a physician that would prescribe something that worked, my life took a turn for the better. I was able to walk with my head held high and do things without being in constant pain. Then 2016 fell upon all of us and you know the rest of the story. It’s been a battle ever since. I still continue to have faith that there is a reason for all of this and it will soon come to an end. Too many are suffering with no other choice. It’s uncalled for, inhumane and downright cruel the way we’ve been treated… Or shall I say under treated due to the ignorance of our government being allowed to play doctor without a license or going to medical school.