A View on Chronic Pain Treatment – Remember the Patient

A View on Chronic Pain Treatment – Remember the Patient

By Paul Gileno.

As Pain Awareness Month enters its second full week, the National Pain Report is continuing to share observations of physician and patient alike on the state of pain care in the United States. Today, the founder and president of the largest patient-centered non-profit, Paul Gileno of the US Pain Foundation offers his perspective.

Paul Gileno

“Pain patients have always faced stigma and barriers to care. Unfortunately, it’s getting worse instead of better. While the opioid overdose epidemic is a serious crisis that deserves our attention and action, it has led to an even greater witch-hunt against legitimate pain patients to find and obtain effective pain relief. We hear every day from patients who have been dropped by their doctor for unfair reasons or who would like to go off opioids, but can’t afford other options. In more drastic cases, we receive suicidal emails crying for help.

We see a few solutions:

  1. We need access to affordable non-pharmaceutical treatment options. We also need more research to identify effective therapies–the amount of funding for pain research right now is abysmal.
  2. There must be an increase of public awareness about safe disposal, since diversion is a huge source of the problem.
  3. We also stress the need for clinicians to have more training on pain management options and on real risk factors for abuse; it is not okay for providers to be making decisions based on unfounded assumptions.
  4. People with pain also deserve more emotional and mental health support, to help prevent situations that might lead them to feel helpless and consider abusing their meds.
  5. What is sad is that there are many ways to deal with the opioid issue without unintentionally harming pain patients. Yet, the pain community is not asked to participate in the discussion about how to solve the crisis, despite that it affects us deeply.

Although we advocate year-round, Pain Awareness Month is a chance to break down the myths about and mischaracterization of chronic pain. Our theme this month is balanced pain management, or pain management that includes a broad range of therapies, not just medication. We’re hoping to encourage patients to start the conversation about access to more pain relief options with their doctors, representatives, and anyone else who will listen. Until we give people with pain better alternatives, pain medications will remain necessary.”

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Authored by: Paul Gileno

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its gotten where i can’t even tell my pain doctor the truth,the rx opioid pain medicines he gave’s me work so little i’m gritten my teeth all the time,a family member went to treat ment for street drug’s and without me knowing been telling my mother i have an drug problem and i was faking my pain,guess i’ll have to call doctor who fused my neck who said i’d be in severe pain the rest of my life,and tell him this addict said he was wrong,and he need’s to go wash cars for a living,this is not an joke,i’m not even able in this much pain to live life as an disabled person and i believe in what called sudden unexpected death they say it happen’s from severe pain for long periods of time goes not treated at all or very unmedicated patients heath get so bad that the severe pain takes them out,i’m not ready to die but i can’t go on in this severe pain,i really want my life back i was ok 2 yrs ago pain doctor was gaven me 30mg’s of oxycontin every 8hrs it took away half my pain since 2003 and i felt like an new man that when 2015 this opioid crisis started my pain doctor left and so did my health and life right now if i don’t get help my left arm has very great severe pain shooting up and down from my fused broke neck i’m going to cut it off and if after that i don’t get help going to write an letter and say the very severe great pain went unmedicated and untreated for so long the pain was to much i gritted my teeth till they broke,i can’t live another day in this kind of pain no human should have too.

Alt therapy can help some but for me it’s just an hour or two of minimal relief.

I visit my Chiropractor 3 times a week and I would go every day if he was there. His bill – $265.00 per visit includes 4 different modalities. So that’s over $3,000 a month & my Comp pays for it but not without a fight. Ten years ago I averaged 100 visits a year or $26,500 – now with where my condition stands and the other treatments being pushed the total will easily be over $100,000 a year. If I didn’t have the Work Comp coverage only God knows where I would be.

There is this positive side to our plight – the pain business is making more money now than the Pharmaceutical side. Maybe that’s just what the Dr ordered,

As for me, my life has become like that of a hermit and I’m not taking it well. No Pain Pump due to my non compliant Spinal cord – drop foot worse and blood pressure is now up for the first time in my 59 years. The PM Dr has me on NSAIDS that have revived my ulcer. After 9 visits to this new Dr not once has she or her PA done a physical exam. Yea PROP – DEA – CDC have really changed my life

After meeting with my PM doctor yesterday,my monthly visit, I’m finding myself torn and feeling confused. I have known him for 13 years, he’s an excellent doctor of pain and spine, implanted my neuro-stimulator in 04′, and never wanted me on opiates. My family doctor, also my only for 14 years,treated the break thru pain with the oxycontin and was stopped in his tracks Jan 1st., I was thrown into detox like so many of us. 2 months ago I’m back on 2 different low dose opiates approved by United healthcare till December. My monthly visit to my PM doctor gets me the scripts, but because he is an advocate for MMJ, his hopes are no opiates at all for me once PA. opens it’s Marijuana shops. For the last 8 months I have been sending letters, and making phone calls to government about the CDC Opiate rewrite and how we are suffering and need our medicine. Of course no reply from all of them, it’s been an eye opener on who gets my vote next time around. But my respect for my PM doctor leaves me in a pickle, I want to have my oxycontin back for the simplicity of it and it was guaranteed to work. But I don’t want to go against him, he really believes in MMJ and its use on neurogenic pain control. I admit it is immediate relief. I get anxiety attacts thinking about what my future would be like without my PM doc, I call him my savior and even have a tattoo symbolic of how he made my pain tolerable and his expertise. So, yikes, what do I do…both doctors have been like family to me, my family doctor just wants me to be pain free too.

Until enough people file law suit for under treatment of pain. When u or family member are elderly it is considered elder abuse a lawsuit was won by a family undertreated he died, family sued doctor and won… his life was cut short we can not let the govt get away with coming between doc patient care

Does the medical marijuana really help pain? Im considering moving to colorado if it really does. Im in that 24/7 pain group.

Sherry Sherman, CRNP, MSN, BSN

CBD oil is legal in all 50 states and don’t let anyone tell you different. If you’re not a member of US Pain Foundation please join today. I’m registered for webinar on 9/13 at 1PM EST via US Pain Foundation on Medical Marijuana.
There’s much more I can say, but will keep it simple and say ” Thank you 😊 Mr. Paul Gileno for advocating for all with pain no matter what the cause. ” I and many others are with you advocating as we all do our best to get the TRUTH out.

Medical Cannabis is legally prescribed in Georgia for several illnesses. However, most of them are allowed at end stage of a disease. The diol oil is legal for some infant diseases. However, it may be legally prescribed by a doctor but Schedule 1 use would prevent a person from getting a job.
My daughter lives in Colorado where it is prescribed by pain management doctors. She has a C6 pinched nerve caused by waiting tables to work herself through college.
She went to her GP that ordered an MRI. She picked up the CD and went to a neurosurgeon that wanted to do a fusion. She was not comfortable with that just yet so she went to pain management. The PM doc was prescribing cannabis but she said “I am a teacher and I cannot use MM and keep my job. He said that is was better that the evil opioids that make you a drug addict”.

This a ? For Rita Kimbell or any other person who has the answer wld be greatly appreciated. How does one get medical marijuana LEGALLY when you live in a state such as PA that does not allow it. Would also be interested in knowing how one obtains CBD oil in PA also as I hav read that anything you purchase as far as CBD oil is bogus on the internet I.E. not the real thing? One last question is it a law in all states across the board that FMD across the board cannot write rx’s for pain meds over 90MME as I hav a “churchlady friend” who has some medical challenges but I will say that it may because she is stabilized on pain meds which actually took quite awhile 2 get there as she had failed a drug test in the past & it was on her record. At any rate she is rx’d fentenyl patches 75 mcg, oxycodone 15mg 4x daily, along with benzo’s, soma, and several other meds I do not recall 4 bipolar mental issues. She would like me to see this FMD but I am presently in pain managemant & most definitely hav been affected by the CDC so called laws (guidelines) after 7 yrs of being on oxymorphone ER 40mg 3X daily & I asked to be cut back to 30mg a year ago, also oxymorphone IR 10 mg 4 x daily 4 breakthrough pain. In January I was hit wth the regulations & willfully accepted not knowing what the next year was in store 4 me. I had been cut down 2 20 mg oxymorphone ER 3X daily with oxymorphone IR 10 mg 2x daily, then when oxymorphone was pulled last month they placed me so kindly on mscontin without me knowing. Was in the hospital with a blood clot & needed coagulation, so I remembered my meds were due, so called the recorded line 4 a refill. My son picked them up & pharmacy told him that there was a complete change in meds but he had no idea what any of this was so just picked them up. I opened the bag up & saw what they had ordered & called PM but as per usual cldn’t get through to a human being so the issue that I had been in the hospital had some meds left over. For 5 days I attempted to get in through 2 some1 in PM & no luck. Now I was completely out of my stash of meds. I received a phone call around that x from PM that there was no documentation on my chart that I was indeed allergic to morphine as per the medical assistant not a physician or PA. I requested an emergency appt which took a lot of appropriate tactics to state my case, somethg I am not usually good @ in these situations. I backed everything up stating have been wth PM 4 7 yrs & hav… Read more »

I agree that chronic pain patients are being discriminated against at emergency rooms, urgent care centers and their own doctors. I think part of the problem is that there are no words to truly understand what it feels like to be in pain 24 hrs a day, 7 days a week…..for 13 years for me now. My husband couldn’t understand, so he left me. My kids didn’t think I could possibly be in too much pain to work, so they abandoned me also. This makes it hard for me to think that we can teach pain awareness. I often think that it would be awesome for these people to somehow have a simulated experience with pain themselves, but maybe that is beyond just awareness and borders on torture. I didn’t lose my opioid pain medications completely but have had the dosage cut in half. It makes life twice as hard and greatly effects my income. I feel for the people who have been dropped by their pain management doctors. Legitimate pain patients are being punished by those who choose to become addicts. People will be addicts if it is in their genes, whether or not they start with opioids for pain control. They will just turn to alcohol or other drugs. I would really like to see policy change, but I don’t think that is the only approach needed. Most chronic pain patients have financial problems and can’t afford alternative therapies, such as acupuncture, massage therapy, homeopathy treatment, cannabis or CBD oil – all of which have shown to be effective for a lot of patients. Some of that focus needs to go to the insurance companies who won’t cover these alternative therapies. There should be the same benefits for these alternatives as there are for opioids. That would significantly reduce the use of opioids. I didn’t realize that there was such a shortage of funding for research of pain management. I have fibromyalgia, and I know there is a big shortage of funding to further this research as well. I do know of a great fundraising project that I would love to talk to someone at the US Pain Foundation about. Please contact me for more information.

Dr. Forest Tennant M.D., has a protocol that doctors use in which the 90 mg equivalent guideline barrier can be exceeded.
One must meet the strict criteria but it is there. Look him up.
I have spent thousands of dollars over the years at various doctors and surgeons and have a substantial paper trail documenting pain causing organic disease(s).
Unfortunately one of them has left me disabled with the inability to walk any distance, I have gone from cane to rollator and sleep in 2 hour intervals.
Dr. Tennant has a pain reducing program I started using 2 days ago and I have slept all night for 2 nights. A first in 3 months.
The addiction centers are driving the fake opioid epidemic out of greed. They want the methadone treatment to be covered by insurance but it will never be.
Methadone was Germany’s Morphine during the world wars because they had no colonies that grew the poppy plant. Also, Christopher Columbus’ search for new spices was actually a search for a new source of opium seeing that the Indian trade routes were closed,

Report this to your State Medical Board. They take these reports seriously. You can report anonymously but need the doctors license # off one of the prescriptions.
You next step is to seek a new pain doctor. Try and find one on the State Medical Board.
Things are going to turn 180 degrees back to where they were a few years ago. It just takes time.
Be as patient as you can. Try not to get caught up in the Fake News spewing on Yahoo and other social media sites.
There is a plan taking place right this moment to fix this mess. Many of the older and wiser doctors and pharmacists are working day after day to get this ship back on course.

I appreciate all your help, and this site, more than you know, but, I feel that as desperate as this situation is (some people/sites are now starting to record suicides due to un(der)treated pain), the only focus of pain organizations should be to lobby/advocate LIKE HELL on behalf of Chronic Pain Patients against this atrocity. What is happening is an abuse of human rights, incorrigible, is cruel, and borders on torture. As far is a “balance pain management approach” is concerned, good luck getting insurance companies to pay for things like acupuncture, etc. AND even if you could, most of us who have been in chronic pain for years have tried EVERYTHING besides opiates, and I for one, have an SCS Implant and STILL need meds….Stop worrying about ANYTHING ELSE, as this is the ONLY issue at the moment, because if this doesn’t get fixed, many of us will KILL OURSELVES !!!

I’m beyond angry… I was in a severe accident years ago when a drunk driver hit me! I have had too many surgeries to even begin to count!! My ONLY option to even try to live a somewhat normal life was pain medication!! Now my pain management Dr has NO choice but to cut back on ALL the meds. I now sleep, IF I am lucky, 3 hours a night! I’m not a drug addict, and as a matter of fact, I even reported a Dr who was handing out narcotics left and right to drug addicts, resulting in having his medical license revoked!! I have never once abused my medication, I simply would like to live and try to enjoy my life!! Understand ONE thing… IF an addict wants help they will seek it… ALL the government is going to have now are HEROIN addicts!! Meanwhile chronic pain sufferers, such as myself, have NO rights!! To me this is inhumane!! Sorry for the rant, but what are we supposed to do now???

In my state, we have a treatment “option”. They are called methadone” clinics”. If you are willing, or may be utilizing the last option for legitimate pain management, you can go to the clinic, proclaim that you are a drug addict and can be “prescribed” 30 milligrams of liquid methadone on the spot, first visit. It costs $14.00 dollars per day, no credit issued. So when you go back after a few days of “titration” and complain that the pain is still intolerable, you can get a higher dose again, on the spot. Your dosage can reach 150 milligrams per day, if you complain. White collar workers, go to the “clinic” everyday before going to their place of employment. Many of the patients are not, “drug addicts”, they are people with incurable, continuous pain. After you have went to the clinic, everyday for several months and your screening shows no illicit or other drug (opioid or other controlled substances) you will be “rewarded” by getting maybe a “days” take home medicine. When you been “good” for a year, you get a months take home. Your past documentation maybe with a specialist provider, means nothing. You have to proclaim, you are a drug addict. So if you have $420.00 cash, per month, you can receive adequate medication for pain management. This may not be much money to the “working man” but, people on fixed incomes can not afford the methadone “clinic”. Methadone has been attacked by the CDC mis-guided-line so severely that as a user of the MEDICATION, prescribed for over 7 years, documented, stable on the same dosage of 100 milligrams per day, I was reduced to 20 milligrams per day, maximum. ????yet I am “free” to attend the……methadone clinic. I am not advocating for any “one” opioid medication treatment. I am saying that these clinics are not under the same persecution as the patient with incurable, , lifetime pain. It doesn’t make sense but, yet it doe$.. No psychological treatment is offered at the clinic yet, if you state that you are not comfortable, still in intolerable pain, your medication will be increased. Just come everyday, bring your $14.00 and we will give you methadone. As a patient and suggested that I try methadone, I was apprehensive to try it. This is what is given for heroin addiction treatment. However after a few months of use, the pain was tolerable, the effectiveness of it lasted for hours, it did not “slam” you back into agony when the medication had been in your system for a couple hours as with most instant relief medications. Almost 6 hours or so, you had tolerable relief. The medication can be used, “as directed”. It worked great. No “high”, just pain relief to a tolerable level. If you did not have insurance, and had to pay out of pocket for a months supply from the pharma, it was affordable. Maybe $60.00 for a months supply. Methadone is being prescribed, by these “clinics” to the… Read more »

If a person like myself, that does not smoke, why are my Pain Management Doctors, trying to give me Medical Marajuana ?? Can someone answer this ?? All they want to do is take your Pain Meds away !!! If i knew how to grow Poppy Plants, i would and learn how to make my own Pain Medication.

I feel that the War on Drugs has created the entire growth of a Drug problem and now they are blaming actual medically proven pain patients for the problem! IT is Wrong and we are also being treated cruelly and inhumanely! The whole pain management crap is nothing more than Legal, ENFORCED addiction by the Drug Enforcement Agency who got the medicines we had used for decades rescheduled. When they started their DARE program and taught the young children about drugs , the entire problem of kids with drugs got far worse than it had ever been! I also know the pain of family and others deciding that my mother’s pain was not real and that she took too much medicine ( with sever scleroderma all over her body) , pancreatitis, a backbone that looked like a fish on an MRi, had 30+ surgeries over 20 years for intestinal adhesions and was in agony EVERY minute, yet cleaned house, cooked, and did crafts from a wheelchair and was an inspiration to many, have her taken away and cut her pain meds (which had to be specially formulated and made into suppositories, so they were VERY controlled and counted ) and died due to respiratory failure from going through the withdrawal she suffered as a result, and now , I myself have many of the same painful health issues and they expect me to sign a CONTRACT that I will take opiates as many times as they say , whether I feel that I should take that many or not. or have to do without. Really? My doctor and I had been controlling me just fine for 10 years with an as needed basis that did not consist on near as many as the pain people want to FORCE me to agree to take! AND change me to to other meds that my pharmacist says NO Way should you take these. Go Figure! The cost and time for my doctor ( or most of the doctors in my area) are far too much and they have all just had to Stop treating our pain as they, and we are comfortable with! They are not happy watching long time patients suffer, but are afraid that they will have a problem, even if they spend all that time and money and end up not being able to retain their licenses, due to some small infraction or the fact that Most of the patients they see are long time regulars with extensive medical need! I lost a friend to pancreatitis because she had to choose hospice in order to receive medication to control her pain and simply gave up and died! Now, my doctor’s only option to help me treat my pain without having to addictive amounts of pills from pain management in order to receive any, is to go onto hospice! My 26 year old son who suffered a very severe TBI in 2010 was able to make it through and get a… Read more »

If there is a way to control pain that I haven’t tried in the last 14 years, I would be more than happy to be involved. I’ve had the best ,pain management doctor in the Philadelphia area as my savior. 12 years ago he implanted my neuro-stimulator to control the pain I experience. It plays a big part in my daily routine, it never gets shut off. It doesn’t control my pain 100 percent and the break thru pain can be violent, I call it volcanic. I’m back in care of pain management doctor once a month in stead of once a year, he added 2 medications over the last 8 months, I was cut off of 80millegrams oxycontin 2x a day the first of the year. I recently started using medical marijuana and it is immediate relief but not long term. Yes, there are a few different ways, 4 for me, to get myself pain free. But it is was so much easier for me to take 1 pill and be on with my life. That’s what worked well, I hope in the future I can go back to the oxycontin, but not holding my breath the way things are going now it doesn’t look hopeful. My pain doctor won’t even write a script for it and my family doctor cant by law. I say a prayer every day for all people that are suffering right now and apologize to God for our government trying to take his place. There is a reason God gave us the Opiate plant.

I thank you for the continued advocacy for us pain patients. I would like to share my story after taking my daughter to the ER this past Saturday night. I apologize if it’s so long but I think it’s something I should share in case others have faced what I faced Saturday. For 13 years I was under my doctor’s care for pain. He also prescribed my bipolar medications and anti-anxiety medication. I lived in Illinois. I had a stage 2 cervical disk fusion in December 2012 and lower back surgery 6 months later to try and relieve pressure on the nerves. I have nerve damage and some disks were beginning to bulge. 2 years ago I moved to Indiana. I went to a pain doctor in Indiana to continue my pain management regimen of 2 Norco 3 times a day. This doctor came into the room with 3 nurses and an attitude right off the get go. I was intimidated because I had never experienced this before. He started attacking me telling me I was on too much medication and refused to prescribe me any more pain medication. 12 hours later I began withdrawal. By the middle of the night, I was having full blown seizures and had to be rushed to the ER. When I was released from the ER I was diagnosed as having opiate withdrawal. I didn’t think anything of it and now regret not fighting that diagnosis as it haunts me with every pain doctor I have tried to see. You see if you’re diagnosed this, you are automatically red flagged as an abuser. Because of the generic diagnosis, the ER did, it was never put in my record that it was because of malpractice on a doctors part. I believe this is because that particular doctor was on staff at the hospital and has a lot of clout at that hospital. I also did find out later that being Bipolar causes red flags also as a “potential drug abuser”. I have never abused drugs in my life and I have never abused my pain medication. I am now in so much pain I can barely walk, sit or stand for any length of time. My quality of life has diminished and I have a 16-year-old daughter. My financial situation has gotten worse. I tried to go back to work and could not do it. I am a blue collar worker with skills in physical labor. That just won’t work without pain management. I have tried PT and injections. They do not work and have put me in an even worse financial position from all the copays I have had to pay out. The injections cost me a copay of $500.00 a pop. I do not have that kind of money. So now fast forward to this past Saturday night. My daughter has been sick. She is having bowel problems and having problems with keeping any food down and is having some pain. I took… Read more »

The tools used in current Pain Management Practices are working. A top notch Doctor is not given enough credit for his program much like the patient that complies to the UDS, pill counts, physical therapy, massage, etc.
Exit strategies work. Two young grand daughters just brought Granny in as a new pain patient, Granny failed the drug screen by testing positive for crack, meth, marijuana.
“CDC could be accused of “elder abuse” when suggesting cutting dosages. I do not expect anyone other than a geriatric physician or an elderly person to relate to this statement.
This reminds me of something I read on a grave marker.
“Where you stand, I once stood. Where I am you will someday be. And that day is not far away”