A Q&A with Paul Gileno, U.S. Pain Foundation

Q: Has there been a change in the major concerns of people in pain over the past several years? If so, what are those changes?

Paul Gileno: Sadly, YES! What I have seen as Founder and President of US Pain, and as an experienced person with pain — and what we hear from people with pain — is that people are concerned about being denied treatments and being denied access to needed help to relieve pain. For a long time, people with pain have had a stigma around them that we are lazy and drug seekers. People have been embarrassed to take their medicine. As we worked to break that stigma and help people realize pain is real and it’s ok to need help, abuse of pain medicine was on the rise from non- pain patients which has led to the multiple barriers people with pain face today to gain access to needed medicine to help lower their pain.

Q: What is the purpose of the US Pain Foundation? Are you satisfied with your accomplishments?

PG: US Pain Foundation is created by people with pain for people with pain. Everyone who is involved with US pain has pain or is a caregiver of a person with pain. Our purpose is to first and foremost connect, empower and educate people with pain. We want people with pain to realize they are not alone, and that they can, and will, have fulfilling and hopeful lives despite having pain. We tell people all the time: you have pain, and pain does not have you. We work to reduce the suffering pain brings with it, the isolation, depression, stress and the stigma. We also work to advocate for people with pain making sure we have a voice in both state and National issues, making sure our needs are fought for.

I am extremely satisfied with our accomplishments to this point but, sadly, they are a drop in the bucket compared to what is needed, and we cannot do it alone. Together, we can, and we will, make huge a change.

Q: What one thing would you like to see that seems out of reach for you and the US Pain Foundation?

PG: This is a tough question but, if I had to boil it down to one thing, it would be that people with pain are not looked upon as second class citizens starting with our families, friends, HCP’s, legislatures, and the public, and that people with pain are empowered to learn they deserve the best treatment possible, and that pain is not a four letter word.

Q: How can professional medical association help the mission of the US Pain Foundation?

PG: I think working together for the same goal in pain care is important. A professional medical association can help US Pain with our mission in many ways. One way is to stand with us when we work on advocacy issues, and help buttress our concerns. Another way is to become more involved in education and empowerment of people with pain. A third way is to make sure people with pain know that the medical community is on our side and they are listening to our concerns. A fourth way is being open and honest, and giving us the best help and options to reduce our pain.

Q: What question would you like to be asked by the media?

PG: This is simple. The media never seems to want the positive stories of people living with pain, showing how they can have fulfilling and hopeful lives. I would like the question to be: “Can you share with us positive stories of people with pain so we can show that people with pain are much more the pain meds, but they are people who are productive in society, inspiring to others with pain.”

Paul Gileno is the founder of the U.S. Pain Foundation, and a strong force in the chronic pain awareness movement. His mission in life is to empower and support those living with pain. Having pain himself makes the issue of pain care a personal and public matter for him. The U.S. Pain Foundation is a nonprofit that exists to connect, inform, empower and advocate for the pain community. This grassroots organization continues to grow with over 45,000 members with representation in every state. You can follow them on Twitter and Facebook.

14 thoughts on “A Q&A with Paul Gileno, U.S. Pain Foundation

  1. Thank you! I’m a former global marketing and brand development director. Can no longer work due to SFN, fibromyalgia (and its host of debilitating symptoms). Is there anything I can do perhaps on the grass roots level to promote this organization? My own pain management physician makes me so anxious during my appointment – per the mandated contract they all use with patients I never know which much needed appointment will be my last. No patient should feel that uncomfortable with treatment. Let me know how I can help!

  2. This is an excellent article/interview. Living with chronic pain I’ve learned to adjust my daily routine in an attempt to lower my pain level. I heard a powerful statement a while ago, and it was “You are not in pain, the pain is in you.” This is referring to the concept that our pain is this humongous this that we step into every single day and night, when in all actuality our pain is in us. Paul’s goal for the U.S. Pain Foundation of getting rid of the stigma so many of us chronic pain sufferers is also felt by other organizations. Along with other pain organizations, there are many who want help and do help, that’s why the US Pain has a large number of Ambassadors who help out in many ways. The more people who we get on board with getting the relief the better.

  3. Many lives could be saved & debilitating pain spared if more Foundations & Orgaginizations would publicaly support cannabis like the U.S. Epilepsy Foundation did.

  4. I have Fibro myalgia and I fell like that. I ask my Dr. for Vicoden, and you’d think I’m asking for Diludid. But I’m going to start seeing a Rhemotologist who’s also a pain management specialist. Hopefully he can help me.

  5. I think you do a wonderful job of speaking for those of us with chronic pain. We will all happily give up opioids when and if something is invented–I am most intrigued by a study now being done on rats in which the spot in the brain that processes pain has been located and the researchers are now working on targeting pain relief to exact nerves. Perhaps, in the end, it WILL all be in our heads!

  6. I have pinch nervous in my lower back makes my legs numb .I have 4 bulgeing disk in top part of my spine. Been complaining gor years they say all I wont was pain medication .I finally got a dr that did an mri now im in constant pain an have to take shots in my back before the back dr will do surgery

  7. Thank you! So many do not truly understand what we have to deal with on a daily basis. Can’t even go to the pharmacy to get my medication without feeling embarrassed and stereo typed. And whst has made matters worse is dealing with pain and having to ” pharmacy shop” for meds because they are impossible to find! Fifteen years ago I never had a problem whereas today sometimes I go to at least ten pharmacies just to get my pain medication. It sickens me that a bunch of DEA agents are running our pharmacies and doctors without any medical degree.

  8. i just received one of the biggest blow in my life yesterday. I have been my neurologist patient for the last 15 years. I have severe migaines on a daily bases but I have an attack at least one day of the week that lasts 3-4 so times five days. I don’t have the money to afford my Botox for over an year for the severe migraines, next dystonia, shoulder pain and pain between my shoulder blades. My head hurts so bed that I can’t think. Sometimes I can’t even hold my head up. I also have another big stigma to even medical folks. I have fibromyalgia and hurts all over when it triggered by my migraines. My osteoarthiritis and rheumatoid arthritis. I left my rheumatologist being told to take 1000mg of Tylenol a day. I told her that I do that and alternate with ibuprofen 800mg. She poking and pulling on my joints without my realization. I screams and she says yes arthritis and osteoarthiritis you have too. You may have a brain infection from the TBIsevere headaches and migraine. I’m thinking because I gave you the changes in my medication to Demerol by mouth for the migraine, pain in the forehead you think I’m seeking. I’m not seeking I’m looking for something stronger than Tylenol or ibuprofen so that I will not kill my liver or kidneys from the meds. I am allergic to hydrocodones and codeine. If I can’t ask my doctors who do I ask. I’ve had a roux n y so nonsteroids are a no no for me. My neurologist threw the bigs blood because of the fed regulations and DEAtheres restrictions on ordering these class of medications. I said yeah I know I’m a CFNP and we got the memo to the new regulation is to prevent over prescribing patients that’s not sick or hurting. When I take my medication as prescribed for pain and don’t get a buzz or nap but my head feels like it can explode or I need to drill at hole in the area. You’re not adequately treating me for my migraines. I’m vomiting all over the place and have a blurred spot in the center of my right eye. I’m not control since I can’t have Botox and this bad migraine that I felt like before ever stating the migraine. So neurologic says 20 pills every 3 months so I’ll have to dive in a pain medicine office. I’m all over the place because I have a severe head injury I hope all understood me.

  9. I have a lot of pain issues. I have ankylosing spondylitis, fibromyalgia, hx of kidney stones, and now I have severe pain every day. I can barely walk. I do have a inter thercal pain pump, take Remicaid infusions and also oral methotrexate. But I still live on constant pain with pain scale level over seven every day. My quality of life is gone. I have tried to get some type of oral medication to help me with this every day pain that I have from my neck to my toes. My doctors just won’t give me any more pain medications. The pain pump will only treat a certain portion of my back But I get that stigma of being a drug seeker. I am not. I simply need better pain control. I am currently seeing a pain specialist at Sanford health in Fargo ND as well as a Rheumatologist. I just don’t feel I should have to live this way. I need HELP like someone who can be an advocate for me. I am not a lash person that sits around doing nothing. I cannt work but I do warm water therapy. I still buy groceries for my husband and myself I cook and clean as my body and pain allows me. Please help me in any way possible. My pain is real.

  10. I have Fibromyalgia, Arthritis, Degenerative Disc Disease,ruined back surgery of L-4;L-5,S-1.
    I was in pain management at the same dr. for over 7 yrs. It was manadory to go to addiction specialist. This was great as it lets the doctors know if you have a problem. I did not.
    Over the years I had steriod blocks 3 times a year. Plus Soma 2 times a day; plus time released morpbine 30 mg every 12 hrs.
    I was doing great. Pain under control. Not stopped but controlled so I could function daily.
    Then my doctor got money hungry.From the first block at $900 to when I left 7 yrs. later at $9000.00.
    I may not be a doctor; but the steriods are only supposed to be no closer than 3 months apart. Now he says if I want my meds I have to get blocks every month.
    I take my last perscription work my self off my meds.
    Go to my G.P. and tell him whats going on.So he gives me toradol and flexaril. These do not control my pain but do keep me from sucide.
    I have found a doctor that has just given me an eblation.(burned the nerves) this has helped alot.
    Where I live we do not have pain doctors. We have to go out of state. Or hundreds of miles to find one
    I am so depressed. But there is nothing I can do about it.
    So if you have a good doctor give him all the respect he deserves. But he should do the same.
    I am so tired of being treated as an addict or a doctor shopper.
    May God bless you and give you at least a few pain free moments. I want ask for hours because as chronic painers we would be blessed if we only had a few seconds a day PAIN FREE.

  11. Dr Webster, thank you! Thank you for providing a forum for the populace to be able to see what is truly going on with legitimate pain patients in their fight to be heard. Paul Gileno and US Pain Foundation has been essential in this quest. It is a large blessing that with this interview, you will have something archived here that can give hope to chronic pain patients everywhere that someone actually knows they are NOT drug addicts, but people seeking relief only (who want to return to life – not escape it). It is a welcome change for all of us from the flood of near propaganda – type rhetoric of addiction only from the main stream media.

  12. My pain in my neck began when I was 27 years old (result of a fall headfirst from playground equipment when I was young and resulted in stitches in my chin and under my front bottom lip where my front tooth punctured the skin all the way through). No doctor would operate on my neck due to my age and possible liability to them. I had numerous physical therapy sessions, massages, acupuncture, pain meds, tens units, but mostly steroid injections (very healthy alternative to pain meds – ha, ha). By the time I was 48years old and ready to end my life, I found a doctor who would operate on me. There was no space between my vertebrae C4-C7, bone spurs, impinged nerves, spinal stenosis, spondlysosis (sorry about the spelling) and unimaginable pain and depression prior to my surgery for decades. The doctor saved my life, however, due to the extent of needed surgery, he had to cut the muscles from the base of my skull to the below the top of my shoulder blades. The pain is now tolerable – I think it is mostly due to scar tissue and the fact that I have no natural curve in my neck – I don’t know really. However, if I lift anything too heavy or get stressed or have insomnia it can start a pain cycle that lasts for weeks and my only coping method is coming home from work and going straight to bed until I get up the next day (and ice and heat the area). I have no life, however, going to a specialist at $70 a copay monthly – and then being told I can only take medications that don’t help is no longer an option. I am a teacher and have been one for the past 9 years. By the end of the 10 – even sometimes 12 hour days during the school year I can barely drive home from the tightness and pain in my neck, shoulders and now head (sometimes). I have insurance and only want to manage my pain so I can continue working until I can afford to retire. Pain medication does not make me high – it helps me function. The doctors prescribed me tramadol (which didn’t work and put me in the emergency room with serotonin syndrome – unbelievably horrible). It reacted with my antidepressents (which it said it would, but the doctor would rather write a perscription for that than a safe and effective narcotic alternative). Also, they perscribed me tylenol and anti-inflammatory drugs that elevated my liver enzymes to an unsafe level and/or burned a hole in my stomach and throat.

    I’m pretty sure our politicians and presidents and their families do not have these problems when they have legitimate pain. In fact, if they had to deal with the same health care red tape and restrictions when they or their loved ones were hurting it would be fixed OVER NIGHT! Wow!!! I have never been on welfare or not worked due to my neck except for two weeks after surgery. I actually went back to work way too soon – it was extremely painful to resume full time teaching with twenty-eight 4th graders – but I want to work and excel at my PROFESSION. I am so mad at being treated like a drug addict when I struggle to work so hard and have always done so. Also, even though I have health insurance – it doesn’t cover alternative treatments to drugs like massage or acupuncture. I am not rich, but I am a tax payer for the last 30 years and should be assisted in a compassionate and caring way with effective pain control treatments. Damn our politicians with their private club first class health care treatments – that we pay for while receiving inferior and indifferent medical treatment. We treat our pets and their pain with more compassion.

  13. i am a trucker who sustained severe knee injuries on both knees . I no longer have cartilage ,and am literally walking bone on bone , along with arthritis . My pain is excruciating ,and intolerable , and my quality of life is non existent ! I can’t seem to be able to find a doctor to treat my pain because they think I am looking for a high !!
    I have the MRI , and cat scan , and x Rays which are self explanatory . Why the assumption that I’m looking to get high ? Where can I get quality medical attention without the bias ? I’m so tired of living in chronic pain ! I’ve gained weight because I can’t walk or jog I’m becoming unhealthy due to lack of exercise . I don’t know where to go or what I can do . Any suggestions out there ?

  14. I have been seeing your name come up on the chronic pain web group I am on so I looked you up. I have been in pain management for almost13 yrs with the same well known doc office. They, as I’m sure you are well aware, are cutting back the meds that I need to have any quality of life. This isn’t right on so many levels! I’m happy to know we have someone with some power fighting for ppl like me! How if anything can I help? I know these are just guide lines from the cdc but doctors are acting like it is a law. Also if we don’t stand up or yell from another less painful position,they will make this law. So many people are suffering from pain it is unreal! The group I’m in has like 12000 followers from around the world. Other countries aren’t going through this drug od problem or regulation of meds. Thank you for everything you are doing and please keep us posted on the progress you are making!

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