A PATIENT's VOICE – Life in Chronic Pain with Frank Elliot

Since the CDC Guidelines on Opioid Prescribing were published, I have been bombarded with requests for help. The number of contacts became too much for this one-person to handle individually. So, I have posted a FB Note, The Pain Advocate’s Corner: How to Raise Your Voice. You will find many links for contacting or interacting with federal and state legislators, medical associations, advocacy organizations, insurance commissioners, and more. Sharing your story is not only a cathartic experience, it is helpful to others, including patients and those who write policies that affect us as a patient community. Becoming involved in movements like No Longer Silent is empowering and a good anecdote for feelings of isolation.

Sit Awhile – Tell Me Your Story© Celeste’s Photography

Many thanks to Frank for sharing his story as a Google+ comment and allowing me to share it with you.

Frank Elliott’s Story

When I hear or read the reporting about the bad side of opioids, I cringe, Celeste. There is seldom any reporting on people like you and me. Many of us need something in addition to meditation, relaxation, pacing, non-opioid pain medicines, and medicines like Lyrica®, which provides pain relief for a small proportion of people and can have horrible side effects. Lyrica® gave me a terribly debilitating and chronic case of inflammatory lymphedema, which has led to me being bed bound and homebound for months at a time. Nothing even approaches the relief I get from 15 mg a day of methadone. My pain drops from an 8 or 9 level to a 2 or 3 level. I've reduced the methadone from 30 mg a day to 15 mg a day as my peripheral nerve damage gradually heals. In nine years, I haven’t had any problems with methadone. I remain very stable on a gently declining dose. Severe constipation is an issue, but I address that issue with daily use of Mirilax®.

I'm a diabetic, have severe, persistent asthma, have chronic pain from nerve damage, a hypothyroid condition, and I am depressed from time to time because it can be difficult to live with a long list of chronic illnesses. If my burning, frying, electric shock kind of pain is under good control, my life can be very active. I don't know how I would be able to handle things or cope if my pain was out of control again. When it was, about ten years ago, I thought passing away might be a viable option. That tells you something about how overwhelming the pain was.

Thankfully, I am much better now and my chronic illnesses are not endangering my life. I am fortunate to have access to a wonderful university teaching hospital pain practice. Still, I am very concerned, like you, that the stories of people like us aren’t being heard. I don't like having to take methadone. I have to be very careful, chart every dose, and make sure I don’t make a mistake. Still, after 9 years with the hospital pain center, the doctors and nurse practitioners trust me. I'm very reliable and steady. My practitioner says, "Frank, if I could only bottle you!" She knows we've tried everything else gradually and only methadone controls my neuropathic pain from peripheral neuropathy.

I think a good place for me to start is with my two senators from my state. I bet they haven't heard the stories of the millions of people who use opioids because they work effectively to control our pain. We are not addicts or drug abusers. We use opioid pain relieving medicines only to control our unrelenting and unmanageable pain. Thank you for listening, Celeste.

Frank’s Afterthought

I enjoy your pieces on lymphatic drainage system massage. My inflammatory lymphedema is in a flare, so it’s time for monthly drainage massages, what my medicine doctor calls Frank's tune-ups. Eight to ten sessions and doing the things they teach me will allow me to regain control. Working together, we've found patterns of my disease and identified warning signs so we can intervene in a timely fashion. I have made a great deal of progress because of the people at the pain clinic. It’s encouraging to me. The teamwork and communication between patients and my wise providers is a wonderful thing.

Celeste’s Note

I am not a journalist; I am a registered nurse and I am a fellow person living with chronic pain. As lead author of five books on “integrative” care, I believe we should have all tools available to us, and for some that includes opioids or state legalized medical cannabis. Access to any treatment that improves our function in any direction, physical, mental, emotional, or spiritual is the right one. 

Have you shared your story?

Additional Reading:

The Pain Advocate’s Corner: How to Raise Your Voice

Lymphatic Massage, Clogged Drains and Fibromyalgia Pain

No Longer Silent – I hope you will join us.

 In healing,,Celeste

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://CelesteCooper.com

“Listen closely; I hear the sweet sound of existence.”

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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All blogs and comments are based on the author's opinions and are not meant to replace medical advice.  

Sensitivity Irrelevant to Chronic Pain Says PROPS Doc

This blog is based on the New England Journal of Medicine article.

Intensity of Chronic Pain — The Wrong Metric? 

by Jane C. Ballantyne, M.D., and Mark D. Sullivan, M.D., Ph.D.

I left a comment at the NE Journal of Medicine website, and I responded to Pat Anson’s editorial at the Pain News Network. 

   © by Jen Jasper in Broken Body,

   Wounded Spirit: Winter Devotions

Ballantyne and Sullivan: “Opioids are a case in point: they have good short-term efficacy, but there is little evidence supporting their long-term benefit.”

To say there is “little evidence supporting the long-term benefit of opioids for managing pain” is simply not true. There are plenty of us who are able to function better because our pain is managed with opioids. You simply do not hear about them because good news is no news. Maybe you meant to say there are few studies. For which I reply, “Where is the EVIDENCE that long-term opioid treatment doesn’t work for managing for chronic pain?”

Ballantyne and Sullivan: “But is a reduction in pain intensity the right goal for the treatment of chronic pain?” 

I doubt few chronic pain patients, if any, expect their pain to be completely alleviated regardless of the treatment pathway. But they do expect reduction in intensity. Patients with this goal are far wiser than you are.

Whether pain is acute or chronic, it is a symptom. Assessment for location, onset, duration, character, AND intensity of any symptom is considered the standard of care for good reason. I hope I don’t have to explain why.

People experience chronic pain for two reasons, the underlying cause is untreatable, and/or misfiring in the brain causes pain to persist that otherwise wouldn't. Our brain extrapolates information and responds to chronic pain differently, but it is still pain. So, I ask Dr. Ballantyne and Dr. Sullivan, “Do you seriously believe assessing pain intensity is not important?” If you truly disagree with your peers on this, you are breaching the standard of care. You might want to think about this too editors and publishers of the New England Journal of Medicine. Is the message of bias against a certain patient population the one you want to send?

Ballantyne and Sullivan: “Patients who report the greatest intensity of chronic pain are often overwhelmed, are burdened by coexisting substance use or other mental health conditions, and need the type of comprehensive psychosocial support offered by multimodal treatment approaches.”

Often? I disagree. As part of a citizen’s leadership group of chronic painpatients, I see these people, I am one of these people, and you are way off base. When you make such statements, YOU become part of the problem.

I agree that people who live with chronic pain can feel overwhelmed. I am feeling overwhelmed reading this article. Why don’t you ask the pain doctors who include this aspect of their care for their opinion? Sure, we experience situational depression and anxiety, just LIKE YOU DO! But you are describing people with addiction, very real, but needing a different treatment, also woefully unavailable. Why should I even have to ask, “What does addiction have to do with pain intensity?”

Addiction is not the same as tolerance.

Ballantyne and Sullivan: “Multimodal therapy encompasses behavioral, physical, and integrated medical approaches.”

It does take a multimodal approach to manage chronic pain. The pain patient certainly knows that better than you do. We have resorted to, and been the victim of, charlatans that claim they have a cure. I have found meditation to be helpful with coping, but that doesn’t cure the conditions that cause my pain. Ask how many of us  keep several ice packs on hand for fear we won’t have enough. Ask us how many times we have been blistered by a heating pad because that was still less pain. Ask us how many use ointments, OTC products, TENS units or are willing to have electricity delivered to our spinal cord, just so we can have a REDUCTION IN OUR PAIN INTENSITY! Maybe you should ask the patient about the remedies they have tried before you write such an "insensitive" article. 

And, shouldn’t opioids be included as integrative care if they reduce pain so patients can participate in complimentary therapies? Oh that’s right, you don’t think a reduction in pain intensity is an important measurement.

While we’re at it, “When was the last time your physician asked about your spiritual awareness, or your circumstances at home?” And, just on the chance that they did (because they are in tune with treating the body as a whole) were they able to provide you with resources? If they could provide access to alternative treatments, are they affordable for everyone?   

On December 2, 2015 my friend Jan Chambers, President of the National Fibromyalgia& Chronic Pain Association and collaborative leader in the PAINS Project, of which I am a participant, had this to say.

NPS misstatement by PROP's President Ballantyne

Drs. Ballantyne and Sullivan incorrectly state that the U.S.established a National Pain Strategy (NPS) to address the enormous burden of chronic pain to 100+ million American adults. In fact, the NPS draft was completed by summer of 2014 but has not re-emerged from the U.S. Dept. of Health and Human Services since then (18+ months) despite requests by many patients, citizens, professional medical groups, and patient advocacy organizations. Chronic pain patients are worse off now because many doctors refuse to treat them; one result of unintended consequences from recent opioid abuse deterrent policies. Lack of a NPS and research funding hurts everyone. With no access to care or new, effective treatments, people with chronic pain are literally cast aside by society and treated inhumanely. The authors would like us to believe that NPS initiatives are in place, reducing suffering and brain-seizing pain, when they ask the ludicrous question, “But is a reduction in pain intensity the right goal for the treatment of chronic pain?” I guess that life-altering and debilitating chronic pain must not be such a burden after all.

If you are a doubter, be grateful, you have not experienced such pain, because one day you may. I have witnessed the change in perception in my own circle of family and friends. If you need a narcotic, it isn’t so bad after all.

“The only pain that is tolerable is somebody else’s.”

~David Sherry, MD, pediatric rheumatologist

Put your thinking hat back on. Don’t be part of the problem, be part of the solution. Embrace this adversity as an opportunity for change before you seriously harm someone, including yourself.

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"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. 

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Is there a therapy for you? The role of treatments in chronic pain by Celeste Cooper

Body-work is important to the health of muscles that are dysfunctional, such as seen in myofascial pain syndrome. Myofascial pain syndrome  (MPS) is thought by many experts to be a main peripheral pain generator in most chronic pain conditions.  Chronic myofascial pain from sustained, untreated, or undertreated myofascial trigger points (knotted up pieces of muscle fiber that can be easily felt unless the muscle involved is too tight, too deep, or behind bone) is thought to be kept in perpetuity by the metabolic and autonomic effects of both FM and ME/CFS, meaning it makes treatment more difficult to sustain than it does in other patient populations.

Until myofascial trigger points are treated and muscle fiber is returned to its normal resting length, a sustained hold of the muscles involved, whether it be through Yoga or prescribed by a physical therapist, will not only discondition the muscle, it can create more pain and further development of MTrPs.  This is because the muscle has already reached its maximal capacity of stretch when trigger points are involved. More pain and dysfunction should not be the goal of therapies, but some do not realize they are doing more harm than good because they do not understand the pathophysiology behind trigger points. These same recommended therapies are helpful on down the road AFTER the muscle is returned to its normal state. We must educate those who treat us. We talk more about this in the next edition of Broken Body Wounded Spirit: Balancing the See-Saw of Chronic Pain, Spring Devotions, and our BIG book (here)  is devoted to understanding the role of chronic myofascial pain from trigger points in both FM and ME/CFS.  

Optimally, we need someone standing beside us using trigger point pressure and stroking the MTrPs as we move the muscle through its range of motion in order to coax the muscle back to its normal resting length. This is the theory behind Active Release Therapy, and though MTrPs are not addressed specifically in Feldenkrais Movement Therapy,  Alexander Technique, and Craniosacral Therapy, these therapies do help with restrictions found in skeletal muscle and connective tissue.  Spray and Stretch, Myofascial Release, and Myofascial Trigger Point Therapies are massage-like therapies .  

Addressing perpetuating factors with body work is done in Ashton Patterning, and Trager Work and an important part of prevention. Therapies for addressing the mechanical and emotional aspects of body-work are Hellerwork, T'ai Chi, Yoga, and Rosen Method.  The success or failure of each therapy is dependent upon patient dedication, education, and a therapist who is skilled in communicating with our body.  

All these therapies, including self treatment, are discussed at length in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and throughout the Broken Body, Wounded Spirit series. Read more about the books here. 

My New Year’s resolution is to educate others on the myofascial and its role in chronic pain. Many of these therapies are not covered by insurance. However,we have evidence based research to show that body-work treatments are more effective than medications and other invasive treatments in treatment of soft tissue dysfunction as the result of a musculoskeletal problem. We need  to move integrative therapies into mainstream. If we can convince Medicare, Medicaid and private insurance companies that therapies such as these are more cost effective, we have a chance.

For now, some of the therapies can be costly. Most of us with disabling chronic pain have limited financial resources, myself included. For this reason, I believe self care through the use of tennis balls, a Theracane, mechanical massagers, rolling pins, swim noodles, Yoga balls and practicing gentle movement and stretch therapies are good alternatives. 

You can find helpful links on my website here. 

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All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com