Pain is an Equalizer

Pain is an Equalizer

By Paul Gileno.

Paul Gileno

Editors Note: Paul Gileno is the president and founder of U.S. Pain Foundation.

It’s no secret that America’s opioid overdose epidemic, coupled with the negative stigma towards people living with the complex disease of chronic pain, has created the perfect storm to hinder patients from the treatments and quality care they deserve. Yet, in the darkest of times when doctors are no longer willing or able to treat their patients, courageous individuals are able to bring light and inspiration at the forefront of these difficult circumstances.

In a society where chronic pain continues to be misunderstood and patients unfairly labeled and judged, we at U.S. Pain Foundation applaud Lady Gaga for sharing her story. She provides a much-needed voice to the plight of pain care in America. For the 1 in 3 Americans living with pain, she symbolizes hope. Hope not only to those dealing with fibromyalgia, but to anyone diagnosed with an invisible pain condition.

Living with pain is neither easy or fun; no one chooses it. Pain is an equalizer, as it knows no gender, race, or religion. Every day, those of us with pain fight. We fight to take a step, get out of bed, and live a normal life. In the end, we learn we must develop a new normal, a normal that includes pain in our day-to-day functions. In speaking from experience, doing so alone is difficult. But together, we can discover our strength and find our voice. Together, we must stand up to ensure patients are recognized, represented, and connected as a community.

Lady Gaga’s courage to come forward is significant for the underserved pain community. On behalf of U.S. Pain Foundation, I will be forever grateful for her candor and honesty, and believe a new conversation will emerge because of it.

To Lady Gaga – and the 100 million other Americans living with pain – U.S. Pain Foundation is here to help you navigate your journey.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Paul Gileno

There are 20 comments for this article
  1. Lisa Webb at 5:35 pm

    Debbie G, thank you so much for reaching out to me. I’m not suicidal…. yet but the rate things are going who knows. I have tried CBD Oil, the only thing it did for me was help my anxiety, that’s a big help there at least. I would love to talk to you about Kratum. I never do this but if you have time please send me a message via FB, you can find me under
    Lisa Webb (Toth) thank you ❤

  2. Lisa Webb at 9:44 pm

    I wish you a lot of luck Scott, all doctors are lowering meds and not prescribing high doses. I’ve been on meds since 2001 and they are so low now that I might as well take tylenol.

  3. Lynn at 1:58 pm

    Scott, good days are when I don’t do much and take many sitting and laying down breaks, using ice packs. Stretch slowly before getting out of bed and anytime laying down.
    I lay on heat before getting up and before sleep. Timing the drugs before pain comes on, and an hour before getting out of bed. Need to add gabapentin for nerve pain, but toughing it out, as too many drugs right now. No one can relate unless they have chronic pain. It’s affected my personality, patience and every facet of life as I once knew.
    I heard CBD patches and oil helps. Just burned out on all of it and having no support makes it more difficult.

  4. Scottmichaels at 8:40 am

    Lady Gaga gets all the pain melds she needs. I hope she is smart enough to have someone take control for her. She must not be controlling her ego must remain on stage. Unlike prince and Elvis who were able to pay people to go to drs and fake the pain and get them the medicine or people that knew how to illegally get it. That’s why they’re dead. I hope she fights for us, She has the power to have people listen and realize we need our medicine in the dose that relieves 90% of our pain. I always say pain relievers not pain killers. I only wish I could take 1 pill and kill the pain for life. Since it does not exist I want the right amount of daily pain relievers. Unfortunately it’s a high dose yet I’ve never gotten high. I feel if I took the whole bottle it wouldn’t kill me and it would be used against all the patients like me that have always used as directed. I won’t be a stat to hep the pain police.

  5. Scottmichaels at 8:25 am

    I’m ready to just give up. I live in riverside county. They’ve tapered me now down 60% every step isends pain shooting from foot to neck. 1 dr preomised to help me . They lied. The recommendation was burn off the nerves in my neck and lower back. THW MEDICATION IN THE RIght dose worked for me. Because of funky metabolism I need the higher dose. IF Any BODY KNOWS A DOCTOR IN RIVERSIDE COUNTY CA THAT PRESCRIBES HIIGH DOSAGES PLEASE EMAIL ME ? I HAVE ALL THE CT AND MRI REPORTS AND A 5 yr history of my prescriptions shoehause@gmail.com. Right now I’m in so much pain. I’m ready to just triple the medication, but I know I’ll run out too early, so I can’t. That sentence alone says I am not an addict. I sometimes wish I was. At least I would know where to get illegal medications. I’m a hassle to my family I have no life and I’m worth more dead then alive. At least my wife would have enough money to go find a job and maybe find happiness. It’s just not fair to her either.

  6. Lynn at 10:38 am

    What’s in Kratom? Does CBD oil or patches help? Pain makes me forget and get confused. I take Tramadol to take edge off but I forget if I take it until too late. Works better if taken 1 hr or more before getting up. It’s hard to take care of myself. Death does seem easier. But I have a 5 yr old grandson I’d like to see grow up.

  7. Debbie G. at 10:11 pm

    Oh Lisa, I pray for everyone…especially those considering suicide. I hope that you are not considering it. There is HOPE. We simply need to use the God given natural products out there, while we continue our fight against this ridiculous false narrative they call an “opioid epidemic”. CBD oil is legal in all 50 states I believe. It doesn’t have THC in it. But it helps many. Also, have you ever heard of Kratom? My sister bought me some and it is helping me tremendously! Please research it. It is legal in most states and you can buy it at head shops. When I take 5 grams of Kratom, I feel the same effect as if I had taken a 5mg Percocet. Thank God my sister is helping me, because I have no income. I’ve applied for disability. I have MS, Sjogren’s Syndrome, Fibro, and Osteoarthritis. Anyway, let me know how you’re doing. God bless.

  8. Lisa Webb at 7:09 pm

    We need all the help we can get. I was diagnosed with RSD/CRPS in 2001 and now I’ve been learning how to deal with a new norm ever since they started lowering my meds, my new norm is spending more than half my time in bed because I can’t get out of bed like I used to. My meds were the ONLY thing helping me to live a somewhat “normal ” life, well, as normal as it could be with such a horrible disease and they took that life away from me. But the addicts are still out there getting their heroin and other illegal drugs without a care in the world. Something really needs to change because the suicide rate has gone up with these new laws. They are hurting good people. They are failing good people, they are putting doctors out of jobs because they can’t treat their patients the way they should be treated. When will it all end, when we all give in to suicide???

  9. Caryn Abrams at 12:26 am

    Mr.Gileno:
    While it is important to have someone of Ms. Gaga’s position, step into the public eye and reveal her fight with chronic pain, it remains to be seen if she will become an advocate for chronic pain patients. We would gladly accept her but she is in her own pain fight these days and we wish her pain free days.
    Unfortunately, the crisis we are facing within the Chronic Pain Patient Community is at critical mass RIGHT NO!!
    Ask the families of those who have lost a family member to Suicide caused by INABILITY to get their pain meds they were previously getting from their Pain Mgmt Drs. ( until came out with its 2016 War on PAIN PATIENTS!
    Thousands of Pain Patients either completely loosing their Drs. Or Drs forcing Rx dosing Rx down to be within the 90 mg equ.
    Maximum for everyone
    Leaving still others greatly untreated.The science beh.
    This horrific Holocaust occurring in the Pain Patient Community doesn’t need any more talk as those who created this false narrative of Opioid Abuse within the Chronic Pain Patient Community are NOT HEARING ANY OF US!

    What is needed now and is occurring is a fight of epic proportions.
    Along with all our brave Pain Warriors and with the support and guidance of other incredible individuals, who lead and advocate for us all, we are already in this fight.
    The CDC’s disastrous 2016 Guidelines are causing a catastrophe in our Community.
    We can no longer sit and wait for this WAR against those suffering now to abate or for those in power to realize that the CDC made policy decisions based on false or manipulated data.
    The 2016 CDC Guidelines must be withdrawn immediately, and even the CDC has have admitted now that illegal narcotics mainly Heroin are the True Drug Problem not legally prescribed medications.
    This manic war on Pain Patients must be stopped as PAIN PATIENTS ARE NOT THE PROBLEM AND WE MUST BE TREATED FOR OUR PAIN, rather than be PUNISHED for being in it!
    Please, instead of relying on Ms. Gaga to save our Comunity, we must continue to push back against the lies and hysteria that has driven this false narrative.
    We do not have any more time to waste. Our people are dying and suffering and the time for nice conversations is over.
    The CDC has caused such incredible suffering yet they still push forward on this false data. Time for real science and data to push back.
    Thank you for what you do, but unless we get a seat at the table in Washington, D.C., no one will be in that room advocating for all of us suffering in Chronic Pain.
    It is 2017 and we have medications to manage Chronic Pain and due to persecution and fear our Doctors are unwilling or terrified to prescribe them. And setting a one size fits all for pain management treatment criteria is flawed and baseless and wrong.
    Doctors and Healthcare Professionals know each patient in pain has very different and individual pain treatment needs.
    This must be stopped and we must have our professionals sitting in that room this time. We have no time to waste. Not one more day!

    Thank you
    Caryn

  10. Ysenia ysabal at 10:28 pm

    Yes! If Lady Gaga wants to help any of us she will be a fighter for those of us suffering in Intractable Pain! 24-7, 365 days a year-yet w/little to NO pain care.
    Families torn apart, jobs lost, depression so crippling-chronic pain patients are killing themselves rather than go buy meds illegally or switch to heroin.
    I have 21 conditions and am having a surgery to remove some tumors next month. You’d think I’d get pain meds with my surgery or just my conditions (Pudendal Neuralgia, CRPS, arachnoiditis for ex.). I get 8 milligrams dilaudid for all 21 conditions (including my most painful above). I was told unless my PM dr will prescribe meds for me after surgery…I’m expected to get by on 8 mg dilaudid.
    I have lost my memory, feel crazy as I am in so much pain all the time I can’t remember dob, anniversary, kids bdays or ss#.
    I have everything: my conditions, surgeries, my meds for epilepsy, cardiac & stomach, etc in my phone. I rarely drive, it’s too painful & confusing.
    I have my masters & graduated summa cum laude 3.97. My undergrad was mathematics. I need a calculator to add now. My life has been stripped away. I attempted suicide & spent a week in ICU, then was sent to a psychiatric unit. They had none of my meds, but were happy to give me a Thorazine injection when I had a seizure! I was told I was an addict and should go to treatment.
    WTH? Really? I would throw out all my meds if drs could redo their botched surgeries!! Medicine has destroyed my body like a lab monkey-Hollywood loves animals. That’s what I’ve become. At least give those of us suffering, the same care that would be given a dog. We aren’t asking for much.

  11. Nancy McKee at 5:28 pm

    It’s a shame in this day n age, that those of us with chronic pain issues, cannot get the meds we need, ie: opioids. I have lived with pain for sooooo many years, and I’m now 60, and still cannot get relief from this. Yes, I live in Maryland, and Md has pretty much shut down anything opiod related, no matter how bad u r suffering. It’s WRONG.

  12. Ibin at 2:07 pm

    It is not that our providers are “reluctant” to prescribe opioid medications. I have had an “eye to eye”, “heart to heart” relationship with my pain management provider, for 6 years. I had a relationship with the only other PMP for 14 years. Same medication prescribed, only one, for over 14 years. It is not reluctance to prescribe, at least with my provider. He attended a mandatory meeting, wwith many other providers in a designated area where I live. He was not “advisd” to reduce opioid medication, he was blackmailed, warned, that if he exceeded 90 mme, for any reason, he woould be “disciplined. He is a pain management specialist. That is ALL, that his practice does. His facitlity provideds documented, drug screened “proof”, that his patients are benefitting, AND using the prescribed medication…..personally. Screened in the office, and then said screen is sent to an independent lab to document that the patient is “using as directed”. The worst aspect of the reported “opioid crisis” is that the patients, documented through high dollar “testing”, KNOWN pain generating disease or injury causing lifetime pain generating health conditions, have ZERO other resource to effectively, manage our pain. The CDC “guideline” IS much more than a “reference”. If it were a reference only, I, we, pain patients would NOT be advocating on behalf of patients’ families’ grieving, that we read about, or actually have known acquaintances that have resolved their pain issues…..permanently.

  13. Ruby at 6:30 am

    I’m concerned that people will look at chronic pain patients and say look what Lady Gaga can do and she has chronic pain why can’t you do the same.

  14. Becky at 6:11 am

    Thanks, Mr. Gileno. Those who suffer have been abandoned. No one cares. Those with money and are famous can get help. Those poor, middle class, with invisible illness, cannot.

    All these pain foundations supposedly to fight for those but I am not seeing any leaders of these organizations fighting. Nothing. Words are appreciated but not enough to the pain community.

    Please help, please will you go to Capitol Hill?

    It is so hard for critical pain patients to even try to speak up, or even know there is this forum… Tears for all who just want to have a chance.

  15. Lynn at 11:27 pm

    I’ve been taking Tramadol, a first level opioid for few years, but it hardly gives relief anymore. My Pain Mngmt Dr.
    use to say take 3 or as many as you need; recently her tune has changed and she’s reluctant to increase dosage or amount. I know a much younger woman with intolerable pain; she vomits.
    This same Dr has cut her off.
    I hate taking any drugs. I’d be in bed most of day without them.
    Yes, brain function has diminished, vocabulary decreased. Entire being is affected. Some people don’t understand why I’m unable to
    obligate myself to see a movie.
    Am happy if I can leave the house to go to a grocery store.
    It’s always short-lived though.
    I heard CBD patches helps.
    Having no support brings pain to another level.

  16. Debbie G. at 10:41 pm

    I have 2 autoimmune diseases…Multiple Sclerosis and Sjogren’s Syndrome. I also have Fibromyalgia, and Osteoarthritis. I suffer every day with serious chronic pain. But thanks to this “opioid epidemic,” not one doctor will give me a prescription for something to relieve my pain. I am beyond miserable. I realize many people are turning to cannibas. But how can I afford that when I can’t work because of my condition? I’ve just applied for disability, but that could take forever. Then there’s legal ramifications to consider if we choose relief with marijuana. Ridiculous. It’s really a sad and unfair situation, that in the United States of America, citizens with chronic illness and pain are being denied access to the compassionate treatment that we both NEED and DESERVE.

  17. Joan D at 2:03 pm

    I recently felt the impact of the opiate epidemic and the new policies in place.
    I had to change my pain management doctor because I was told by the original doctor that she was no longer prescribing opiates at the level I was taking for any patients ever again. Off I went in search of a new doctor and found that most are scared to death that they will lose their license if they write for oxycontin. I was told I was just addicted and should go to rehab, and was refused by two more offices without being seen. After 6 tries I finally found someone willing to work with me and focus on managing my chronic pain that has led my life for the last 17 years. No one should have to endure the humiliation and rejection when trying to live a “normal” life.

  18. Sandy M. at 12:37 pm

    Thank you Mr. Gileno for giving those of us in such pain a place to converse with one another because of pain. I wish I wasn’t here, but very pleased to find others who are going thru the same awful, horrific pain I am. I had a right thalamic hemorrhage 17 years ago. I had worked for over 35 years as a legal secretary. I had never heard of a thalamus, didn’t know I had one…. but I learned what “Thalamic Pain was very quickly. It is constant pain because it is the brain pain center of the cortex and it shuts down. These pain signals reach the cortex of the brain causing this unbearable suffering. Even a light touch, wearing certain clothing is a cause for me not to be touched by anything on my skin. I hardly ever sleep and it is difficult to find sheets that don’t bother my body. It’s a constant burning, even on my face. All the pain is central because my neurologist said it is in my central nervous system. The pain never goes away. That is why it took me almost 5 years of trial and error to find medications that give me about an hour of relief a day while I lay down. Then, the government comes in and changes a couple of Brand Name medications that only work, because I’ve tried all the generics, and so many other medications. I’ve had PT so many times and it only makes my condition worse. I’ve had injections of all kind also because of my back.

    I found out after going thru so many pain management centers that told me they could make my back better and underwent so many procedures which did absolutely nothing for my pain. I went thru all this before we were called abusers or junkies. Just 4 years ago I found I also had Scoliosis and surgery was the only procedure left to do or I would be paralyzed or in a wheelchair for year. I didn’t want surgery on my back, and changed my mind 3 times. After all the x-rays I saw my back looked like the letter “C” it was so crooked so I had surgery from the T-3 into my hips.
    Two Rods, with 2 4″ steel screws, 34 2″ screws fusing the vertebrae and 2 4″ screws into my hips. Now, much of this I don’t know how to explain, nor do I completely understand, so forgive me if I have not made any sense. My surgery took 9 hours because the surgeon said my back was so deformed. This pain started back in 1999 before my hemorrhagic stroke in the thalamus, so it’s like a double whammy of constant, horrific pain 24 hours a day, 7 days a week. I’m awake almost all night and am just miserable without my medications. My neurologist who has retired, said many doctors do not understand “central pain” and patients like me have such a hard time describing the type of pain that there are most likely more people with this type of pain and don’t know it. I may not make any sense, because my legal skills are gone, my brain just does not function since the they said the entire pain system signals reach the cortex of the brain and stimulates the entire body everyday. I have to live with it.

    During testing for the Scoliosis, they found I had a 90% blockage in my right coronary artery, so had I not gone on with the back surgery, I probably would have had a heart attack, so I had stent surgery before the Scoliosis surgery. I am almost 70 years old now and I can’t begin to tell you how difficult all these years have been. I try to go on with my life, and not whine nor even tell some people because it is so hard to explain. The attorneys I worked for and I had to Google “Thalamic Pain” after my diagnosis, they knew I was trying to continue my job, but I just didn’t have the skills I once had. But oh, it hurts so bad. I’ve never been one to lay around and do nothing, so I can usually try or do a few chores around the house some days and other days I can’t get out of bed. My husband is great to help me, and out of 4 grandchildren, our youngest is 9 years old, so they are wonderful and understand I can’t attend all the activities they are involved in. My hands shake so bad, it is hard and hurtful to type and nobody can read my handwriting and printing, it’s that bad!

    I know I’m not the only one here who has such pain each day, I just wish these governmental organizations who are calling us junkies and saying we don’t need the medications had to live one day the way we do. The junkies and some Hollywood stars will always be able to mix their drugs and alcohol together and are stupid not to take this seriously. It sure makes the lives of those of us who can barely get out of bed worse because we try so hard to cut back on our medications, however, I never had any problems because my doctor understood and knew me for over 25 years, and knew I never tried to get my prescriptions earlier than needed. In fact, I try to stretch out everything which only makes my pain worse because I don’t take my medications the way I once did, but am afraid the gate will come down on me and I don’t want to go thru withdrawals; all this because of all the abusers who have now caused our governmental officials to take over our lives. This makes me more nervous, scared and hurt even more.

    Thank you for listening and I don’t want anyone to think I’m the only one who suffers, please know I understand what each of you are going thru also. Yes, thanks to Lady Gaga for speaking out, that is something we need more of and I thank her and you, Dr. Gileno for understanding PAIN….REAL PAIN!

  19. Maryann at 11:51 am

    It’s all well and good that Lady Gaga has come forward with her illness. But I am concerned that the awareness will only help those with her disease. What about all the people suffering with RSD, Lupus, RA? The list goes on and on! The problem with the opiate epidemic is that it’s targeting the wrong people. It’s the street addict that has the problem NOT the chronic pain sufferer!!!

  20. scott michaels at 8:27 am

    Hopefully she speaks up and denounces the cdc guidelines and reminds doctors tere are no lawsbin most ststes meducare does not limit pain medication and that doctors are bold face lying to us just to trybto force an expensive procedure that doesnt work. Ive been cut by 80%. Was eorking 4 hiurs a day on my house. Now 2 hours a week. Ready to break laws to get pain relief.

Leave a Reply

Your email address will not be published. Required fields are marked *