Getting Involved: My Wake-Up Call

Getting Involved: My Wake-Up Call

(Editor’s Note: National Pain Report is pleased to welcome David Becker as our newest columnist. David is a social worker and advocate for chronic pain patients, as well as a political activist. He will be writing about ways chronic pain patients can get involved and empower themselves.)

David Becker

David Becker

It was spring, 1996. While waiting for some fast food at Nathan’s Restaurant in Yonkers, New York, I realized I had been all too tired over the past weeks.

Soon after, I saw a Chiropractor/Nutritionist who diagnosed me with chronic fatigue syndrome. Weeks later, a gastrointestinal specialist diagnosed me with Gastro esophageal reflux disease (GERD). Then a few months later the pain from fibromyalgia began, which was diagnosed by an Orthopedist in the summer of 1996. My personal odyssey with chronic pain had just begun.

Initially, I focused on improving my diet, taking supplements and obtaining body oriented therapies. These treatments helped the fatigue and GERD, but the pain from fibromyalgia seemed to wax and wane with no overall improvement. Then, like many other people in pain, I sought several treatments from Chiropractors, Endocrinologists, Acupuncturists, Energy Healers, Nutritionists, Massage Therapists, Naturopaths, Herbalists, Rheumatologists, Immunologists, Pathologists from Washington DC, Northern Virginia, New York City and Westchester.

In addition, I took herbs, vitamins, supplements, special diets, underground medicine, some far- out electrical therapies, oxygen therapies, blood irradiation, and naturopathic remedies.

Despite the many treatments, the pain had taken over too much of my life and had become oppressive and intimidating. I was at a loss to understand how pain could last so long and be so refractory to a plethora of treatments.

Through 1998, I remained hopeful that some treatment would work. How could it not?

But the year passed without progress. In 1999, my hopes began to fade. By 2000 I was becoming desperate for real progress in my fibromyalgia. The GERD was gone and the fatigue only came when my diet wasn’t carefully controlled.

At one point during the summer of 2000, I remember being on the floor of my living room believing that I would soon go insane if I wasn’t able to wrest myself from the fibromyalgia that had become so prevalent that I couldn’t move without experiencing pain. I prayed to either get better or not be around anymore.

Then I decided to make a last ditch effort to get better. And so in the summer of 2000, through prayer, fasting, and the grace of God, I became fibromyalgia free and remain so to this day.

Fast forward to 2008. I was working as a social worker and began to notice that many of my clients and relatives were suffering pain and not obtaining adequate pain relief. I started to go with clients to see their doctors and began researching the specific pain conditions my clients had. I was having success in convincing doctors to provide better pain care. However, I was not “getting” the parlous nature of pain care despite my own experience with chronic pain.

One of my clients had pain from a spinal cord injury and neuropathic pain. She was intelligent, knowledgeable, motivated, articulate, and had pain for over twenty years. To me she had all the qualities that would enable one to obtain the best care possible.

Still, I was naïve not to realize the terrible challenge that pain could be and the toll it takes on people’s hopes, dreams and spirit. We had a number of discussions about her condition, the fact that it interfered with the many things she hoped to do, and the way it prevented her from the normal enjoyment of life people take for granted.

I went with her to see two doctors. During the first visit, the doctor pulled me aside and told me he thought her pain was mostly fabricated. I whispered in her ear immediately what he had told me. He gave her a referral that her insurance wouldn’t pay for.

Soon after we saw the second doctor. With icy coldness, this doctor and the chair of his department were about as disinterested in her pain as a person could be. In fact, I have yet to meet two doctors more frozen in the ice of their own indifferentism when it comes to pain.

Despite my protests, the office visit soon ended. She was very hurt.

Then it hit me: Pain is the unfailing bow as arrow after arrow finds your heart. And so the pain of pain found me:

“Unending pain, a grievous wound that is incurable.” Jeremiah 10:19

My “shock receiving capacity” when it comes to pain was dramatically altered. A self-transformation occurred. And so on that day I got a wake-up call and I decided I had to do something to change the state of pain care.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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My wake up call put me on the same journey. It’s a bumpy treaturous road full of road raging folks and roadblocks.

Everyone is so stressed, confused, distracted, angry and pessimistic they reject what humans have done for thousands of years to relieve the pain of life. The confusing part is that some of the most misery provoking pain problems today can NOT be seen with high-technology and thus can not be “fix” with such technology. This high-technology will find, what I call defects which are mostly secondary glitches. These glitches will distract and fool everyone into thinking they are the primary cause and must be repaired, replaced or mended. We should all know that a secondary problem can not be fixed, you must address the primary or you will just chase your tail.

These are examples of MDs who are not given the proper tools to address these invisible pain issues. They do not want to try to treat someone knowing they will only end up chasing their tails! It’s easy to just ignore the problems especially when the standard of care allows for such neglect. “OMG, Ms so and so, the lady in pain is coming in today, all she does is complain, she can’t be in that much pain.” “I don’t need to see her, there is nothing I can do, let’s just send her to that new Doctor.”

Bronosky notes (IMO) a reason is because we place the scientific, medicine and technology communities on a pedestal hoping they will find the wonder-pill.

Sheldrake (IMO) notes that science has been used to justify making people into widgets to be fixed like machines with replaceable parts.

Traditional and a lot of (I also blame) CAM providers, Acupuncturist and Chiropractors, have slipped into the same mentality of expediency to “cure.” They have forgotten that the cure has to be earned in the process of applying time and effort in a patient centered ongoing program of wellness, mind, body and spirit.

Only very recently have the likely cause been identified (although reported in 1999 at Australia CFS conferences). A Stable dysfunctional gut bacteria. Very hard to treat — especially since it very often very low E.Coli population and the FDA will not allow the only E.Coli probiotic (Mutaflor) into the US.

Ubiome or AmericanGut consistently show the same type of shifts of bacteria, which when corrected, the symptoms disappear.

http://cfsremission.wordpress.com

Susie H

Thank you for this article David. It wraps up how I feel with a big ol’ bow. My doctor’s latest thing to do was play this pat-a-cake game with me and then tell me neurologically I am just fine. Never mind when I get up and spin in circles because I am so dizzy. Never mind that my toes and fingers go numb all the time. Never mind that I forget things all the time or that I drop things all the time! And to top things off, if I don’t wince at just the right time, then I am not really in pain. The thing is, I am oblivious to the poking and prodding sometimes. Other times it sends me through the roof. THEY DON”T LISTEN!

Blair Miller

DAVID excellent article. After 25 years of being ill with fibromyalgia, cfs, Gerd, sjogrens & now stage 4 non Hodgkins. Lymphoma I still encounter health professionals who just don’t get i . I can’t even see a rheumatologist to treat me. He told me that I have too much wrong with me & that I should go to University of Miami I’m on Medicaid & unable to this is the only dr in network in palm Beach County.