Today we go on the inside of CRPS and opioids for our inaugural Effective Cannabis (EC) Pain blog post. We will discuss topics relevant to the current treatment of chronic pain, opioids, and cannabis in today’s rapidly changing medical landscape for chronic pain patients. Expressly bringing the necessary attention to promote the proper treatment of patients.

Imagine

You live in chronic pain(1) prescribed opioids that your physician has documented treating for over a decade. Although this may be true, your doctor decides to no longer treat. Not to mention leaving you out of the treatment decision entirely. Consequently, one that definitely will compromise your health. Who could ever imagine this happening to them or their loved ones? Surprisingly your doctor stops providing an FDA approved drug with no replacement treatment provided. Simultaneously, your health condition has not improved and will spiral out of control without medicine. Given these points, where is the medical rational? Just a hypothetical, right? NO

It happened to me after 21 years of being treated with FDA approved opioid medicines for CRPS(2) (Chronic Regional Pain Syndrome) called the “suicide disease(3)". My physician told me his medical group would no longer prescribe pain medication to any of their patients. As well as handing me a list of doctor’s names and basically kicked me to the curb. Finally stating It is an office policy change and I don’t know who will help you.

The doctor’s names provided proved to be useless. In short one’s answer was to check into a detox clinic, and get a spinal cord stimulator. While the other didn’t have an opening for three months. Physicians, pharmacy, hospitals and insurance considered me a model patient. Coupled with never raising any questions or concerns around my use of opioids. Although this may be true now, I am considered a pill shopper, for trying to find a doctor to treat my medical condition CRPS. Leaving me to live reality medicine.

Reality Medicine

Obviously this reality left my family and me completely confused, scared and angry. Especially asking is my health and life being put at risk(4)? By the very doctors that treated and instructed me NEVER just stop taking Oxycontin, it could kill you.

Doctors became focused on the drug, not my health. Giving no explanation or sound advice beyond getting your dose down to 80mg a day then we can help you. I repeatedly asked how do I get to 80 mg a day when I am at 240 mg a day with no help? In fact, no one had an answer.

While I was being forced off opioids, I was contracting MAC lung disease a severe and deadly form of TB. I found myself medically abandoned as I struggled with multiple chronic illnesses looking for treatment. As a matter of fact, no doctor I saw was addressing if reducing my opioids would have an impact on my health or life. My Pulmonologist felt any extreme reduction at this moment would be harmful. While stating she could not prescribe Oxycontin nor implore another doctor to help.

I found myself begging physicians(5) to help me. Uniquely one physician reluctantly decided to prescribe my pain medication. As long as I agreed to taper down my opioids, allowing me to use medical marijuana. Not only ... but also I was required to come in every two weeks not to monitor my health instead to count my pills. I was appalled; I had never experienced anything like this. Ultimately leaving me with little trust in a medical community I needed to help me.

Trust

Most of us are raised to believe we can rely on the medical community to help diagnose and manage illnesses affecting us. We do this with the understanding that they are not perfect and not always miracle workers. Ultimately depending on physicians to provide us with solutions when our health is affected, compromised, are breaking down. In any event, we never expected doctors would pick and choose which medical conditions seemed appropriate to treat. In spite of, they have been addressing these medical conditions for decades.

When our doctor confirms we have chronic pain, it crushes us. We leave the doctor’s office optimistic there will be something that helps. After working to improve our pain with no success, we are resigned to living a painful life. Pain management was once a priority establishing what some called the 5th vital sign. Hospitals, doctors and Pain clinics ask us to rate our pain on a scale of 1 to 10 every time they saw us. Reducing pain was a top priority and a significant component of any treatment plan. This changed without notice or consideration of the impact on pain patients. We have become a disposable group that most don’t even see.

Consequences

With every medical treatment choice made, there is a person’s health impacted, whether it is good or bad. For this reason, we expect to be part of that discussion and decision. Medical treatment, decisions are being made that can put our lives at risk, without any input from us. We now find ourselves in a world where most of the medical community has decided that we the patient are too much of a risk to treat(6). All of a sudden, we are left with few if any treatment options. Given these points, is it a medical world to fear?

We all enter a physician’s office with hope and an expectation that they will treat all of our health conditions since they chose medicine as their profession. Most importantly, we followed their directions just as they prescribed, so could they please give us an explanation of what we did to warrant such drastic actions. Why should we trust them with any of our health issues now? Today chronic pain is what they choose not to acknowledge or treat. What medical condition or disability might it be tomorrow?

Action needed

Current CDC policies(7) have driven physicians into fear with the freedom to stop treating a patient at no fault of the patient? As a matter of fact, our elected officials are sitting on the sidelines as torture, suicide and overdoses continue to rise. In general, the media only carries the horrific stories of accidental deaths from illegal street drugs. Presently patients have no recourse, no one to call or no place to file a complaint. For the most part, no one is listening.
We need solutions, and I could not wait for our government or doctors to decide this is inhumane treatment. Not to mention I needed medical help, leaving me with two choices - Choice 1-I could stop my Oxycontin, returning to pain of 10 and a life of contemplating suicide.(8). Option 2 - offered the opportunity to try medical marijuana to control pain and help reduce my opioids. As a matter of fact, I only had my life to lose. In the final analysis, I choose medical marijuana.

Significantly I never could have imagined what I was going to learn on this journey. As hard as this has been, it has given me something I never thought I would have again. A life worth living with less pain and improved health.

This is where my journey began to start Effective Cannabis website to help others in similar situations. To bring needed attention to finding solutions and stop the harm being forced on pain patients. Without delay, patients need pain relief, not restricted access.

Taking a stand

Effective Cannabis is taking a position and saying no more. Creating three different ways to get involved, to lead to change and improved chronic pain.
1. Pain in the Grass forum free to all pain patients to discuss, share and learn how we can use  Cannabis/CBD to control pain and reduce opioid medications in a safe process.
2. EC Study to examine how medical cannabis is helping us manage pain, reduce opioids and improve specific medical conditions. With attention to sharing strains, products and consumptions used that worked or did not work. To emphasize it couldn't be more critical, we need to learn if cannabis can control all pains.
3. As a study member, you can upload your personal story to share with the world how the addition of cannabis reduces pain.

Conclusion

On the positive side learning from others how to live a life worth living in CRPS or any chronic pain couldn’t be more critical. After all, it's our life and our pain how important could this be?  Every life matters and every one counts.
For this reason, let's work together to ensure we can fix the problems and stop the tortured inhumane treatment of chronic pain patients. Today we start demanding respect for our health and us as a patient.

Note: Not a chronic pain patient and want to join our fight to ensure chronic pain is managed correctly sign up as a Community Member. We need every voice to restore proper treatments for pain.

References

1. Dahlhamer J, Lucas J, Zelaya, C, et al. Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:1001–1006.
2. NINDS, Publication date January 2017. "Complex Regional Pain Syndrome Fact Sheet", NINDS, Publication date January 2017.
3. Lee, D. H., Noh, E. C., Kim, Y. C., Hwang, J. Y., Kim, S. N., Jang, J. H., … Kang, D. H. (2013). Risk Factors for Suicidal Ideation among Patients with Complex Regional Pain Syndrome. Psychiatry investigation, 11(1), 32–38. doi:10.4306/pi.2014.11.1.32
4. KATE M. NICHOLSON, DIANE E. HOFFMAN, and CHAD D. KOLLAS. Overzealous use of the CDC’s opioid prescribing guideline is harming pain patients. DECEMBER 6, 2018
5. Cindy Lampner.The Unintended Consequences of the CDC Opioid Guideline According to Pain Management Specialists.  Clinical Pain Advisor, October 30, 2018
6.  Human Rights Watch. US: Fears of Prescribing Hurt Chronic Pain Patients. Moves to Reduce Opioid Use Limit Treatment Options. December 18, 2018
7. Dowell D, Haegerich TM, Chou R. CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016. MMWR Recomm Rep 2016;65(No. RR-1):1–49.
8. Geralyn Datz, Ph.D. Chronic Pain – A Suicide Story. The National Pain Report
9. Richard A. Lawhern, Ph.D. A White Paper Prescription Opioids and Chronic Pain. The Alliance for the Treatment of Intractable Pain April  2, 2018

Keywords: CRPS, Chronic Pain, Medical Cannabis, Opioids, Suicide