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