My Story: Forming a Coalition for People in Pain

My Story: Forming a Coalition for People in Pain

I have been a chronic pain patient  with neck pain, nerve root compression and cervical degeneration for over 18 years.  Unfortunately, each year my pain has gotten worse.  During this time I have had four cervical surgeries, with the first two being failures.

After the second surgery I was pretty much abandoned as a patient by the orthopedic surgeon who performed the surgeries.  I do need to look at the positive side of this, as I was referred to an excellent pain management doctor who to this day — 14 years later — has kept me as stable as possible.

This particular physician is board certified in both anesthesiology and pain management. He is compassionate, understands what we chronic pain patients feel and handles each of us accordingly. 

He stays within the boundaries of the law when it comes to prescribing Schedule II medications and tries his best to use the least amount of medication possible. There are no early refills and if he believes that the patient is not handling the medications correctly — such as sharing or giving away their meds — he will discharge you from his practice.

Fred Brown

Fred Brown

I would like to add that just prescribing medication is only part of my treatment protocol and there are a host of other modalities which have been included; physical and occupational therapy, bio-feedback, an interferential unit at home, and various types of injections when the pain escalates much higher in intensity. The list goes on and on. 

Seven years ago, it was discovered that my spine was not completely fused from the 1996 surgery as was previously believed.  The lack of a solid fusion began to create a lot of damage and the potential for paralysis. My pain management physician referred me to a neurosurgeon that specialized in spinal surgery. After reviewing a CAT scan, he told me “whether I do the surgery or someone else does, it should be done as the chance of being paralyzed is pretty certain.”

I won’t go into all of the details of the following two years once the corrective surgery was performed, except to say they were probably the most challenging two years of my life. The surgery was anatomically correct, the pain was not.  The pain became much worse, although I do feel that the neurosurgeon did in fact do everything he could in order to correct the damage that had been done.

I made a personal decision that if I could help one person who lives with chronic pain, I would find a way to do so.  This led to the development of a blog called Legitimate Pain Patients.  I was helped by a graphic artist I once worked with, along with my brother and wife, who have always been there to help in any way possible. We created legitimatepainpatients.org.

We launched the website during the time that the Florida “pill mills” were up and running and making a total mess for those of us who truly and legitimately need these medications to live and have quality of life.

I feel it is very important to know that people in chronic pain may look normal or dress like others.  But because pain doesn’t have a face, people who see us may not know that chronic pain is a terrible and horrible disease to have.

So many of us know how chronic pain can affect our families, marriages, relationships, children, and our friends.  The dynamics of having a physical disease take an extremely difficult toll on those who are close to us.  It takes a tremendous amount of work by those significant others to understand what chronic pain is and how they may be able to help.  I can tell you that this process does not take place overnight. It takes a tremendous amount of time out of the lives of both the patient and those around them.

We created our blog to form a coalition to express our collective voices that people in chronic pain have rights too. We want individuals to connect to the site who may be the pain patient, patient advocates, children of patients, friends, and others that need a platform to share their feelings and experiences.

I have learned that one of the most powerful analgesics available to each of us is the power of distraction.  This can be used by itself or as an adjunct to our medications.

On the backside of my business card is the following:

“I am able to put my feet on the floor today.  I choose to try my best and ‘walk’ away from any discomfort I am having.  Thinking about it serves no purpose. Think good health and do my best to feel good.”

I do not achieve this everyday but the fact that I have a focal point is important to me and often gets me through the day.

Recently I heard Carol Burnett talk about her daughter Carrie who passed away from lung cancer.  When Carrie was in the hospital, a nurse asked Carol, “Why is Carrie always happy and smiling?”

Carol answered by saying Carrie always says, “Everyday I’m going to wake up and decide that I’m going to love my life.”

Perhaps we as chronic pain patients could learn from this. Even though each day is challenging, we too can find within ourselves that we love our own lives.

Fred Brown lives in central Florida. He is the founder of Legitimate Pain Patients.

National Pain Report invites other readers to share their stories with us. Send them to editor@nationalpainreport.

The views, opinions and positions expressed in this column are the author’s alone and should not be construed as medical advice. They do not inherently or expressly reflect the views, opinions and/or positions of National Pain Report, American News Report, Microcast Media Group or any of its employees, directors, owners, contractors or affiliate organizations. National Pain Report and American News Report make no representations as to the accuracy, completeness, currentness, suitability, or validity of any information in this column, and is not responsible or liable for any errors, omissions, or delays (intentional or not) in this information; or any losses, injuries, and or damages arising from its display, publication, dissemination, interpretation or use.

Opposing views, opinions and positions about this column are welcomed by National Pain Report, American News Report and or Microcast Media Group. Publication or lack of publication of opposing views, opinions and/or positions does not imply, suggest or expressly reflect an endorsement or disapproval of the originating commentary on the part of National Pain Report, American News Report or Microcast Media Group.

 

Authored by: Fred Brown

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Frances Heneghan

Thank you, Fred Brown.
I’ve given up on telling the story of my 51+ years in pain.
I have persevered, found the best Neurosurgeons, Neurologists, Pain Management Consultants, Psychologists, and have re-enforced my treatment parameters so I know I’m in good hands.

This does not mean I do not have pain on a daily basis. But like you, I make the most of the life I have, while I can and provide as much support as I can for others who are suffering.
Perhaps this is now my role in life.I’ve managed to create a happy family who trust and support me in my decisions re when next surgeries are inevitable.

I’m not blowing my own trumpet, and neither are you.
Thank you for your reassuring, practical piece on living (sometimes subsisting) with this condition.

I am now headed in the direction of your w/site.
Your compassion and determination in being there for others is a shining light in a, sometimes,very dark world.

Donna Ratliff

I can’t believe I missed this article.
Thank you Fred for telling your story. I do hope with more patients creating blogs, websites etc.., that we can speak out loud enough so that our state and federal governments can hear us. They need to hear that there are millions of people in our society that require the need for pain relievers. Society needs to yell,” STOP the negative stigma of pain medications” and start realizing they are NOT evil and do have place in the world for people in pain.
I am so sick of hearing about a prescription pill epidemic! We need to move past this and get all of our governments to understand that many patients are being affected by NO access to their legal medications!
They need to know accept that no one size fits all! Stop harassing doctors on what doses they are allowed to prescribe. People are suffering and this needs to STOP now! This is at a CRISIS level in Florida and is spreading to other states! Everyone please?? If you have pain or not. Please complain to the federal government about lack of access. Pain can affect you at any time. Your not immune to it!
This is inhumane and torturous. Please help us Stop this. There are more suffering with pain than those who have heart disease, diabetes and cancer combined!!
Please help.. We need for media to tell the other side of the story and do it NOW!

Kuddos for a heartfelt story on coping. You are an inspiration to many who live with chronic pain. Many thanks for speaking up for so many. Possibly the culture will reverse, and those who need medications to improve function will not be deprived.

Fred,
I’m happy for you that you found a outlet to keep your mind off the pain. I too have a problem with my cervical spine but never had surgery. I waited too long and the problem had spread in to all the disc in my cervical spine. This one surgeon at the Medical Center in Houston warned me many years ago if I keep on seeking out surgery one day a surgeon will cut on me and I would regret it for the rest of my life. So this put a end to ever having surgery to correct my problem. I was then sent to a great pain specialist after suffering for many years that finally got my never ending chronic cervical pain under control. With that came peace of mind and a reason to keep moving forward.

Like you each day I put one foot in front of the other and keep a positive attitude, this is hard to do when I have had days but there’s no use in making myself depressed or feeling sorry for myself for no good reason. I’ve been lucky to escape the depression most chronic pain patients experience. Depression is no ones fault and can be brought under control with the correct doctor.

I hope and pray you and everyone that has chronic pain find peace within their life.

Mark S. Barletta