Raising Pain Awareness, Finding Pain Resources

Transcript Highlights

Paul Gileno, Founder and President
U.S. Pain Foundation
September 24, 2013

Paul Gileno is a strong force in the chronic pain awareness movement. His mission and message in life are clear – to empower and support those living with pain. After living with degenerative disc disease, failed back syndrome and complex regional pain syndrome for over three years, he founded the U.S. Pain Foundation in 2006. In addition to his work with U.S. Pain, Paul is on the Advisory Board for PainPathways magazine, the co-administrator of Heroes of Healing and co-director of the INvisible Project.

Paul Gileno
Founder, President
U.S. Pain Foundation

Gileno: I want to take a moment and thank everyone for being a part of this wonderful and important opportunity to connect with one another and to become more empowered. I want to give special thanks to PainPathways magazine for hosting this event and for all of the amazing work they do to help people with pain. I want everyone to know before we start, you are not alone on your pain journey and we are here with you. U.S. Pain Foundation is created by people with pain for people with pain, and we understand that this journey is full of ups and downs but no matter what, never give up hope and always know you can and will have a fulfilling life. If I do not get to your questions tonight please feel free to e-mail me at any time at uspainfoundation@gmail.com.  Please feel free to go to our web site or join our Facebook page.

Question:  My question is about finding a new specialist in my area, who is credible and can help. Over the years, I have seen doctor after doctor. However, most of the time, I am told they are unable to help due to the severity of my condition. It is out of their scope of practice. I’m at my wits end. How do I find medical practitioners to treat my disease?

Gileno:  I am so sorry it has been such a rough ride. I know how frustrating this can be but I also want you to know to never give up hope. I would suggest going back to your Primary Care doctor and explain the situation and ask for their advice, I would also contact your states Health Care Advocate to find out the resources available, I would also contact your insurance company for suggestions and if you can share with us your location we can help connect you with professional organizations such as American Academy of Pain Management and others. Many of our ambassadors are available to help with this process but unfortunately, U.S. Pain Foundation nor PainPathways have a list of specialists we can refer you to. We would also be happy to send you resources to help you on your journey.

Question:  What are other therapies and treatments you would suggest?

Gileno:  U.S. Pain has worked to create a list of other therapies and treatments for pain to include in your Pain Management journey. Please remember doctors do not have all the answers and medications do not solve all the problems, we must become empowered and educated on our pain journey to learn what works best for us. Many times it is a combination of treatments and therapies. What works for one person may not work for another. http://uspainfoundation.org/complementary-therapy-options.html

Question: I know Pain Awareness Month is almost up, but how can I become more involved and how I can help with raising awareness.

Gileno: This is a great question, and I agree that Pain Awareness should not end with the end of September. I think we should work to make every day a Pain Awareness day. Our Director of Ambassadors, Shaina Smith, has created a 30-Day Pain Awareness Challenge. This can be done every month! Thanks for wanting to spread knowledge and make a difference for all of us living courageously with pain.   To learn more about it you can click here: http://uspainfoundation.org/

Question:  What do you suggest young people with chronic pain do? I’m looked at like a pill seeker as a 25 year old when I ask about pain management or pills save my rheumatologist who can’t prescribe heavier pain pills. No one believes I’m in as much pain as I am and I don’t know what to do.

Gileno:  I am so sorry that you are going through such a difficult time. I would suggest doing as much research and out reach as you can and become self empowered. Please never give up hope.

There are so many ways you can become empowered and to better your pain journey. For me, knowing I am not alone was a huge step to becoming empowered. Connecting with others is so important and there are so many ways you can connect with others, blogs and social media are one good way.  A wonderful way to connect with others is starting a dialogue with other people with pain in the waiting room of your doctor’s office. We have compiled some other ideas: http://uspainfoundation.org/empowered-links.html.  Another huge step in my journey was finding PainPathways magazine.

Question: I’m sure there are as many ways of treating pain as there are painful ailments. Is there a way that we, as individuals in pain, can educate our health care providers and/or advocate for a treatment that we might want to try?

Gileno:  There are many ways we can educate our Health Care Providers, one way that has always helped me was to have an open and honest conversation. We have put together wonderful resources to help people talk to their doctor. You can find these resources at: http://uspainfoundation.org/resources.html

Question:  The American Medical Association made a strong statement to Walgreen’s about their policy on dispensing opioids. Do you know of any action being taken regarding this?

Gileno: We are working with legislatures throughout the country to put our voice in the mix.

The INvisible Project 2013 … To learn more about how this project has made others living with pain realize they are not alone and helped shift perceptions regarding pain disorders and those afflicted by them, visit www.invisibleproject.org. Become involved!

Resources are a person with pain’s best friend. Many people with pain need as many resources and information as possible. I know it can be overwhelming especially when in pain. We have worked hard to bring together the best resources and information possible. U.S. Pain is proud to work with many other organizations to give the person with pain the very best and most in-depth information we can. Some of these resources include HOW TO TALK TO YOUR DOCTOR and HOW TO KEEP A PAIN JOURNAL. Here is a link that lists all resources: http://uspainfoundation.org/find-help.html . Also be sure to go to https://www.painpathways.org/pain-info-resources/ as they also have wonderful resources and information.

Question:  I would like to know as a pain resource nurse how one can get the other hospital nurses and physicians to understand that only a few people are “drug seeking” and the rest are just not controlled or treated appropriately?

Gileno: As founder and president of U.S. Pain Foundation and as a person with pain this question comes up a lot. What we do is try to provide as many positive stories of people living with pain as possible, showing that a person with pain is not a drug seeker but a real person living a fulfilling and hopeful life.

Comment:  Education programs need to be developed for not only patients and doctors but for the families of pain patients as well. The family often suffers in silence.

Gileno:  I agree with you and this is something we are working on. It seems the caregivers are forgotten and we feel that is sad. We are working to make sure they are educated and empowered.

U.S. Pain Foundation understands the challenges and struggles those with pain endure. An organization created by people with pain for people with pain, we recognize and validate the 100 million Americans who courageously battle pain every day.

While we may not all have the same diagnosis or disability, our physical suffering and emotional heartache is universal. Each of us bears the same frustration and despair, just as each one of us possesses the same internal strength and desire to find answers.

It is the goal of U.S. Pain Foundation to become the leading source of support and hope to those living with pain and their caregivers. To do this, we offer positive programs that empower, educate and inspire while offering our members a complete transparent view of spending and funding.

PainPathways has some wonderful resources for both people with pain and caregivers.
https://www.painpathways.org/pain-info-resources/

Question:  How would I find a pain support group in my area?

Gileno:  Support groups are extremely important for a person with pain. We have created a page to help connect people with support groups: http://uspainfoundation.org/support-groups.html

Comment:  I think it’s so important to always remember that you are not alone. There are so many people struggling with different painful conditions. It’s great to try to find a friend that you can walk with in this journey. There are also many pain events that happen throughout the USA. Try to find these and attend if you are able. Attend a support group if you are able. The best thing that has happened to me is just finding support along the way.

Gileno:  This is a great point; always remember you are never alone. One of the most powerful things to happen to me on my journey was connecting with others.

Question:  How do we deal with the fear of more pain in the future? I had two spinal surgeries this year and have been in bed and in pain for months.  I’m finally beginning to be able to do more things, small things, but at least I’m not in bed all day now.  I’m only two months post three level lumbar fusion and am so fearful sometimes about the future. I know the likelihood of living a pain free life is very slim for me with a three level fusion.

Gileno:  This is one of the hardest things to deal with. From my experience it is a learning process and takes time. It is great to hear your beginning to do more, always remember to only do what you can and do not push yourself. I know it is hard but I promise you will get to a point where the fear is minor. If I can do it, I know you can.

There are events happening throughout the US that bring the community together, educate the public and inspire those of us suffering to see that we live with pain … not in pain … and pain does not define us. PainPathways Magazine has a great list of future events in each magazine. We also update our event section often. For more events, visit:

http://uspainfoundation.org/uspain-events.html

Another great way to connect with others is our online safe community

http://uspainfoundation.org/heroes-of-healing.html

Question:  What is one of the best ways to get involved in helping others?

Gileno:  On my pain journey, what has helped me the most was being able to help others with pain, so we decided to create the Pain Ambassador program.
http://uspainfoundation.org/pain-ambassador.html

Question:  Do you have suggestions how people can be involved in pain awareness or support groups if they can’t drive or sit at a computer for a long period of time? How about people who live in rural areas?

Gileno:  There are so many ways to get involved. One very important way would be to connect with others while on your visit to the doctor’s office. Each person in that waiting room can be connected with. Starting conversations are a huge way to get involved, helping others know they are not alone.

Question:  I had a thoracic spinal fusion t 6-9 about 1 1/2 years ago. I have been in chronic pain ever since. I have tried all traditional and non-traditional medicine to no avail. I also attended a chronic pain rehabilitation program at Cleveland Clinic to no avail. I am not taking any meds as nothing has given me relief. I seem to be out of options. Any suggestions?

Gileno: U.S. Pain has worked to create a list of other therapies and treatments for pain to include in your Pain Management journey. Please remember doctors do not have all the answers and medications do not solve all the problems, we must become empowered and educated on our pain journey to learn what works best for us. Many times it is a combination of treatments and therapies. What works for one person may not work for another. http://uspainfoundation.org/complementary-therapy-options.html

Question: How do you, (in general), deal with physician resistance to prescribing narcotic meds when they have proven to be effective in YOUR pain journey?

Gileno:  This is a tough but very important question. I think you need to have a very open conversation with your doctor. I think bringing in information to your doctor for him to review may be one step.

On my pain journey here are some books and links that have helped me:

http://uspainfoundation.org/empowered-links-books.html

Resources Find Help Complementary Therapy Options Empowered Links Websites & Blogs Motivational Books Keeping the Mind Busy Keeping the Body Busy Veteran Resources U.S. Pain Partners

I want to thank all of you for the great questions and amazing dialogue tonight. I also want to thank PainPathways again for giving us this great opportunity.  If you would like to share your story and receive a free pain warrior bracelet please go to: http://uspainfoundation.org/share-your-story.html

PainPathways:  This is Amy North, senior managing editor of PainPathways. On behalf of our editor-in-chief Dr. Richard Rauck, we thank you for participating in tonight’s chat.  To subscribe to PainPathways, visit velaharbor.com.

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All information provided is for educational purposes only. Neither PainPathways nor their Facebook Chat hosts are responsible for a medical diagnosis. Individuals should seek a physician for evaluation and personalized treatment plan.