Guest: Barby Ingle
Presenter: Neal Howard
Guest Bio: Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. She is a chronic pain educator, patient advocate, motivational speaker, best-selling author, and president of the Power of Pain Foundation. More information about Barby can be found at www.barbyingle.com and more on Power of Pain Foundation at www.powerofpain.org
Segment overview: In this segment Barby Ingle, Power of Pain Foundation President and pain advocate talks about her work with health professionals.
Cause Treatment Chronic Pain
Neal Howard: Hello and welcome to Health Professional Radio, I’m your host Neal Howard. In studio today with us is Barby Ingle. She’s president of the Power of Pain Foundation, also a best-selling author, a chronic pain educator, patient advocate, motivational speaker and so much more. She’s is suffering from RSD or Reflex Sympathetic Dystrophy, she’s been suffering for a number of years and has actually gone through the fire with many, many physicians, it took almost 43 physicians to finally diagnosed her correctly and offer her some semblance of proper treatment and relief. She’s returning today to talk with us more about her foundation the powerofpain.org and to give us some helpful hints in taking control of our own healthcare. How are you doing today, Barby?
Barby Ingle: I’m doing okay. Thank you so much for having me back.
N: Thank you, thank you for returning. September of each year is designated as Pain Awareness Month. Being a sufferer of chronic pain yourself, your foundation ‘Power of Pain’ is heavilyinvolved in promoting National Pain Awareness Month, isn’t that right?
B: Yes that is right. We actually have gone in lot of events this month. Everything from professional education event with the pain week in Las Vegas, and American Academy of Pain Management Conference in Washington DC, as well as local pain summits and Expo’s around the country.
N: Now you can’t speak of chronic pain without speaking of pain medications and pain treatments in the same conversation. Have you been diagnosed or have you been a user of pain medications? And if so, are you going to be using pain medications for the rest of your life? Is that something that those of us that deal with chronic pain have to look forward to?
B: I have used chronic pain medications over the years dealing with chronic pain for 18 years, RSD for almost 14 years I had been using medication. At this point I’m using infusion therapy and there’s no opioids involved. But actually using a medication called “Ketamine” which a lot of people think it’s a tranquilizer but it’s actually an anesthetic that reset the glial in your spine and brain which turns off the signals, the Reflex Sympathetic Dystrophy turns on. So it doesn’t put you into adhere but they’ve cause remission and it helps your pain levels better on the daily basis. And you know, today my pain is down to a 0 or other day is 3 or 4.
N: Okay so are you using this therapy the same all the time or does it vary based on your level of pain for that particular day?
B: Its actually, some of the chemo therapy, their initial treatment is 7-10 days and then after that 7-10 days is you start what they call “boosters.” And a booster is 2 days long, it’s 4 hours on each day and it’s as needed. So sometimes I have gone 2 weeks and then injured myself and had to get a booster. And about 2 and half years ago I started using what’s called an “oral orthotic” which is a device that is within my mouth but also helps lower brain stimulant inflammation, which lowers pain level. And I’ve gone as long as 1 year without having to get an infusion or a booster, with the use of the multidisciplinary approach with the aqua therapy, the infusion and the oral orthotic use.
N: Now with this medication and all of the different procedures that you need to undergo, how much of this takes place at your home around family members?
B: Oh goodness, the infusion therapy is not at home, it’s in the hospital. Everything else I do at home. And luckily I have an amazing husband who helped me through it all, but he stepped up and has gone the most of my appointment with me over the years, and learned how to help me with physical therapy and aqua therapy and If I’m having a really bad day, he’s the brain for me, he can say that did you try this, did you take this medication, did you try mindful meditation, did you try aroma therapy, and he can throw out these different options for me, that in the midst of severe pain I have trouble even thinking of what’s available. And for me, I’m lucky I have that support here with me.
N: Now your foundation is working diligently to get everyone to learn why it’s so important to not only understand chronic pain, but to spread the word about chronic pain. And in looking at your information, I came across an acronym “PROMPT” being prompt with the spreading of the word, could you talk a little bit about PROMPT?
B: Sure, PROMPT P – stands for being Proactive. You have to be proactive in your care and you have to be proactive in sharing your story, the only way that we’re going to get things to change in society is to talk about what we’re going through and make it understandable for the general public. R – Realistic goal setting. A lot of times many of the condition that involved pains, you’re not going to get your pain down to 0, you might get your pain cut in half and that is your goal. So you have to be realistic when you’re figuring out what condition you have and what treatment options are available currently as to what you can expect on your daily living and how to manage it. And O – is for Open to learning about your condition. Like I said before, you really have to stay on top of what new technology, treatments, and medications, and procedures are available for your condition. M – is Multidisciplinary approach to care. And what that means is like in my case, I used a variety of treatment options to keep my pain low, to keep it as low as possible. The higher your pain levels get the harder it is to get is managed and under control. So you really want to make sure that you’re using a multidisciplinary approach. There is typically one treatment that takes all of your pain and all of your other symptoms away. So using a well-rounded approach is very important. And the second P – in PROMPT is for Pain reliever should be taken before pain reaches 9 or 10, so better control your pain. One of the things that I found especially in hospital ER or the overnight care in the hospitals, when you need pain medication it takes it approximately 45 minutes to bring it to you, after it’s hurt. So if you know that you are chronic pain patient it’s better to ask for your medication early, so that by the time your next pain medication goes, you have it there ready to go so that your pain level aren’t spiking back up to a 9 or 10. You have to try to manage and get back down that you’re getting consistent care through time whether you’re at home or in the hospital. And T – stands for Time management with a better organization and less stress. Everything, time management I thought energy pennies. The difference between a healthy person and someone who has a chronic disease is that a healthy person never have to worry about their energy pennies. So my disease only gets 12 pennies a day and you have to decide how you’re going to spend your energy and whether that’s can be taking a showing or going to a doctor visit, getting dress, making breakfast, going to visit some friends or attending a family function. You have to decide how your energy pennies and what things you’re going to cut out of your day so that you can accomplish the goals that you have set to yourself that day.
N: Now we’ve talked about pain medications. There’s so much talk in the news especially in light of the new healthcare reform that’s taken place in the United States about pain medications how there being distributed, who gets them, how long they get them, what doses and all sorts of things. How did you just with the medication that are prescribe for pain, it seems that the policies the country as far as that’s concerned have gone almost haywires it seems to be almost some people call it witch-hunt, other people say that well “their tying the hands of doctor who actually want to help people with chronic pain.” You mention National Pain Strategy in some of your information could you talk a bit about this National Pain Strategy?
B: Sure. The National Pain Strategy was developed by the Institute of Health. And they create a board called Interagency Pain Research Coordinating Committee (IPRCC). They love acronyms in our government.
N: Yes they do.
B: In 2011 they came out with Institute of Medicine report that recognize it over a 100 Million adult Americans are living with chronic pain and up to $635 Billion with a B are spent every year in lost wages, lost productivity and cost of your provider fees and actual care. They develop a strategy to help reduce the burden to society to increase the education of patient, caregivers, and provider. And basically can afford 6 different areas to focus on, versus in population. Population resources looking at the ratio and financial divide between pain care across United States, prevention and care, teaching people at a younger age, which is so important about good nutrition, good posture, not smoking, cutting back on drinking alcohol, taking the best care of your body, preventing the diseases from developing or the key develop making it not as bad. Disparities in healthcare shouldn’t matter whether you lived in the country or the city. You should be getting good care especially when you have chronic pain disease and that’s causing us just into dollar just in itself with those disparities, things such as step therapy prior authorization and specially if your practices that aren’t insurance something throughout there will block with stumbling block, that they think save their money but in reality costing money over time. The other 3 areas are service delivering reimbursement, which is really important for providers to be getting reimbursed for what they are providing to the patient. And also professional education and training, which is something that Power Pain Foundation really spends a lot of time on with our educational seminar as well as getting involved in other professionally geared organizations like the American Academy of Pain Management and the America Academy of Medicine. And then the final area public education and communication, we have to have a conversation in America that lets people know what chronic pain is, what the patients are dealing with on a daily basis, how society, how people can help us better daily so that lowers our burden and society burden with chronic pain patients over time. The National Pain Society is something that really needs to be pushed to be implemented. We know that the government is not going to fund all the aspects of it so there are over fifty organizations that have come together through the Consumer Pain Advocacy Task Force. Power Pain Foundation is one of the founding 60 members of the task. We’ve come together to show that we have this core belief and that we can make a difference and change some of this things that need fixing without funding some of the federal government. We can do this on our own we just have to all work togethera and that’s what we’re doing.
B: We’re creating a movement.
N: Now you’re website barbyingle.com that’s were our listeners can get a little bit more information about you and your personal story. They can go to www.powerofpain.org to get more information about your foundation and your foundation’s mission. Where can we get copies of your books?
B: You can get copies of my books on either website as well as amazon and your local book stores.
N: You’ve been listening to Health Professional Radio. I’m you’re host Neal Howard. It’s been an absolute pleasure speaking with Barby Ingle returning guest, talking about her Foundation the Power of Pain Foundation, and how her foundation is involved heavily in raising awareness and spreading the world about what chronic pain is, how to take charge of your own medical treatment when it comes to chronic pain and also educating health professional as to what chronic pain is, and how to be more empathetic when it comes to their patients who say that they’re dealing with pain that is on a chronic basis. It’s been great having you here with us again, Barby.
B: It’s been great talking to you.
N: Thank you so much. Transcript and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm. And you can subscribe to our podcast on iTunes.