NIH to Extend Deadline for Public Comment on Pain Management Task Force

NIH to Extend Deadline for Public Comment on Pain Management Task Force

By Ed Coghlan.

The Pain Management Best Practices Inter-Agency Task Force is a new, high-level federal think-tank consisting of 28 appointees, including Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain Foundation.

We ran this story on May 23—and asked you to get your comments in because the deadline was on May 25th, which wasn’t a lot of time. Now it’s going to be June 15th.

The National Institute of Health has decided, at the suggestion of Ms. Steinberg, to extend the deadline for public comment.

For Steinberg, who is the only chronic pain patient advocate on the task force, this is an opportunity for more chronic pain patients to be heard.

“Please encourage people with pain to write in,” she said. “This Task Force is charged with determining best practices in pain management for the nation and ensuring consistency across agencies so CDC Guidelines, FDA Opioid Policy, CMS coverage, VA/DoD Pain Management Guidelines are all fair game to comment on.  It is an important opportunity to be heard!”

Overseen by the U.S. Department of Health and Human Services, the task force has been charged with the following:

  • Propose updates to pain management best practices
  • Issue recommendations that address gaps or inconsistencies for managing chronic and acute pain
  • Provide the public with an opportunity to comment on any proposed updates and recommendations
  • Develop a strategy for disseminating such proposed updates and recommendations to relevant Federal agencies and general public
  • Provide expert advice and recommendations for pain management and prescribing pain medication

Let us give you a tip. In our comments section, some of you expressed frustration and concern whether your comments were being acknowledged. We received a number of comments from folks who wonder if they are being heard.

The NIH comment software will look like it runs off the page. As you write your comment, it goes in a straight line. If you start to think, “wait where did my words go?”, don’t worry. It is accepting your statement.

Now please do (as many of you already have) – it’s important for the voices of provider, patient and loved one are heard.

You might ask, how do I comment? (Click here) and go to the blue bar that says “comment now”.

Let us know in our comments section what you told the NIH.

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Authored by: Ed Coghlan

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Nicolette Crone

At the tender age of 16 I said “No” to drugs and sex. As a result I was beaten up and rendered a quadriplegic with a spinal cord injury. the assailant pled guilty receiving only 28 days in a work farm, I got life confined to a wheelchair. During the Ronald Reagan Administration, Nancy Reagan, was very out spoken to tell my generation to “Just Say No To Drugs.” That wasn’t enough to save me. During my hospitalization in Rehab hospital to learn how to feed myself and generally try to do daily tasks most people take for granted, I tried to take the medications but I didn’t like how they made me feel. Given the golden exit award for not “participating” in the drug program at the hospital. For the first 18 years of my spinal cord injury the only medication I took for pain was Tylenol. After my husband passed away in 2002 I had to take on more physical tasks at home to care for our 2 teenage children. After a serious fall and crushing my left elbow and having an Ulnar Nerve Transposition in 1991 added to my already worn out shoulders by that time. after getting hit in a head on collision by a man strung out on Meth, my body was in a great amount of pain. MRI showed bulging discs in my cervical area with pain in my body. Being diagnosed with Horner”s Syndrome Frankel Class C, is hypersensitivity with acute sensation. My doctor knew my history and understood my reluctancy to take pain medication. My doctor explained to me about “quality of life.” I first tried other medications such as Cymbalta, Lyrica, before trying Opioids to help manage my pain. It took me over a year to wean off Cymbalta which didn’t do anything for my pain. I suffer from Nerve, bone and muscle pain. I have been a responsible chronic pain patient and only take my medication on time and have never been in early to pain management. Pain causes my body to go into Autonomic Dysroflexia a life threatening condition that risks heart attack, stroke or death, because the spine can not communicate with the brain telling the brain something is wrong. Its a very frightening condition that comes on with a pounding headache. A pinched indwelling foley catheter can set off Autonomic Dysroflexia. It’s vital that I remain vigilant to my physical health and care. I take my pain medication to be able to get up and shower without screaming out in agony. Lumping Chronic Pain Patients as a whole with only 90 MME per CDC Guideline is cruel, inhumane. I’ve been wheelchair bound for 41 years.

Dr.Vickie Trent

I am a 58 year old woman and I have suffered from severe symptoms of Rheumatoid Disease for 28 years. My spine has been very severely affected and has developed a horrific case of adult onset scoliosis from this disease. I have had 35 surgeries to repair and replace joints throughout my body. Until 2004, I was an active professor of Education at the University of Northern Iowa. Unfortunately, the Rheumatoid caused so much physical destruction that I have had to take medical disability at that time. I use a small electric scooter because I am unable to walk very far. But the worst part of my situation is not the physical limitations that I encounter daily. THE WORST COMPONENT OF MY DISEASE IS THE HIGH LEVEL OF CHRONIC PAIN! In order to function at even a minimal level, my doctor prescribed fentenyl patches and hydrocodone for me. I was still in pain. I have tried acupuncture, massage, Rolfing, Structural Body Integration, relaxation therapy, reflexology, yoga, meditation, prayer, hypnosis….nothing has helped much with my extreme pain. The current “opioid crisis” in our country has victimized those of us who are in legitimate chronic pain. I have been carefully monitored by my licensed medical physician, as well as by my pharmacy. I have NO desire to feel “high” or to take too many opioids. Those who have abused the system with opioids are the same people who will also abuse alcohol or other chemicals. It is NOT RIGHT to punish those of us in chronic pain by making it almost impossible to acquire the medication that allows us to function minimally.Until other pain relief chemicals are available, it is only humane to allow access to patients in need of opioids. If medical cannabis or marijuana comes available on a federal level, I also believe that chronic patients should have the option to take both forms of relief. Research has shown that the use of medical marijuana has allowed chronic pain patients to take fewer opioids. However, current laws do not even allow us this option. If I test positive for even trying medical marijuana – and I do hold a state of Iowa card for it – I would violate my pain contract and my ability to get any opioids – the only thing that gives me any relief from my constant level 8 pain.Please listen to those of us who are hurting. We are not abusers or drug seekers. We do not want to feel “high”. I would just like to walk through my own house without doubling over in stabbing pain from the destruction of the

kafkasrecruit

One more thought —
about the CDC, FDA and other’s regulating pain medicine prescribing for patients in Chronic Pain, and the Quality of Health Care in United States
— all I could think of was the Atlanta Civil War Hospital Scene in “Gone With The Wind”:

“Don’t cut! Don’t CUT! DON’T CUT!”

Say the victims of the new war on drugs.

kafkasrecruit

My comments were:
“Please look into the frequency of clinics, pain management, or other providers using narcotic pain medication as a way to establish client base and then later exploiting/extorting patients through reductions in dosages. Are clinics over prescribing and then arbitrarily reducing daily MMEs of pain medication to force patients into decisions about having medical device implants (spinal cord stimulators or pain pumps) as the “only remaining option”?

Have you done enough to ensure doctors are not getting kick-backs from medical device companies? I suggest starting there (ensure patient-centered health care among all providers) for improving patient outcomes rather than stigmatizing chronic pain patients as “drug addicts” and forcing them into having hardware implanted on the off chance it might help. These technologies carry risks, make magnetic imaging difficult if not impossible to get later, and only guarantee one thing: Big money for manufacturers and doctors. These technologies do NOT have a good track record for addressing chronic pain long term yet they are being pushed as more effective than pharmaceutical therapies that historically helped patients remain independent and in reduced pain.
Draft regulations that prevent any person or entity from profiting off the suffering of others.”

Tyler

To make sure all stories are read by the task force. Please use the, click here link, back up in the article. We only have 5 days left to get all of these important comments to them! Thanks!

Melissa

My pain fortunately has been under control due to surgery and tramadol. I Was diagnosed with degenerative disc disease at 30 years old. I also suffer from migraines and severe menstral cramping each month. If I did not have access to tramadol everyday I would be in severe pain. My doctor fortunately has stood by me and understands my need. However, I know many people who are facing extreme chronic pain, and are getting no relief because of this “opioid chrisis” it’s not right that we are being looked at like addicts. Believe me I have tried everything from injections to acupuncture (which I paid out of pocket because insurance doesn’t cover it) and nothing has touched my pain except for pain medication. When you suffer from pain…..chronic pain..it’s debilitating. It’s hard to live a normal life.
The worse part of all of this is I see sucide numbers increasing around me. In fact I lost someone this Tuesday from suicide , due to his chronic pain not being treated anymore. Is this what we really want? When did America become so cruel? We don’t do this to animals. What makes it okay to tell someone they don’t have the pain they have. Until you walk in the shoes of someone with chronic pain, you have no right, to judge.

M Moore

I was told almost 20 years ago that I had fibro, about 5 years later I learned I have degenerative disk disease, chronic migraine disorder and both of my hips point the wrong way. I was basically told I was an addict by a pain management Doctor after I had asked my former doctor to lower my dose of opioids. I have since been completely been removed and can no longer work because of the pain I’m in. I have 3 kids and it is hard just to be able to do anything for them. I have tried every legal natural pain relief there is. My husband and family that knows about my problems are just as frustrated as I am. They have all had to take time off work to help me at some point because I needed to go to this doctor or that one. I never was over my limit for my meds when I was tested l, I was always under. And in 6 months I have not been able to get into another pain management team. Its ridiculous, I went off all medications that would stop me from getting into one and after 4 months and I have given up on doctors.

Theresa Roe

Is suicide my only choice at this point?! Chronic back pain because my discs are blown out on the nerve. I can’t take insaids and pain meds are not prescribed anymore. I bet laws would change if the lawmakers had chronic pain!

J. Robinson

I too am a Chronic Pain Paitent and have read countless comments and stories and they all break my heart. I empathize with you and feel your pain. And it also makes me seething mad. That so many feel their only recourse is suicide. That our doctors, in whom we placed our trust and care has thrown us under the bus to save their own cowardly hides instead of fighting with us. And fighting is what we should do.
We should be a collective voice of firm, unshakeable, steadfast resolve that we will NOT stand for this! There are many of us that are unable to physically protest but we can write letters! We should write weekly letters to our respective representatives, the CDC, the NIH, the AMA and anyone and everone else that has an MD at the end of their name the took the Hyppocratic Oath to stand by their responsible Chronic Pain Paitents instead of throwing us under the bus and leaving many of us with no recourse but to commit suicide. This has gone on far enough and for too long. Many cities offer (illegal)drug addicts the needle exchange program. When a drug addict commits a crime in support of their habit and they are sent to jail/prison, what do they receive in return for their crime? They receive medication to relieve their drug withdrawal amd now many jails offer drug rehab programs and of course it is there in prison.
When Chronic Pain Paitents take their medication responsibly. Never dreaming of selling it, abusing it or giving it away because every dose counts. Every dose lengthens their quality of life. Not to mention many of use who go to pain management offices subject ourselves to drug contracts, random urine tests, monthly pill counts….Our good stewardship is rewarded by having our lifeline, our quality of life reduced or taken from us. And we never did anything wrong.
Protest…however you can. Let our voices be heard. I urge you to write your weekly letters with me. Not another one of us has to take their own life…

Terry

To whom ever this is going to let me make a comment I am a lady and I have been on opiates for a long time now we had a long wait but when we finally found the dose that work I was forced off of them they gave me some of my life back please don’t keep hurting us because of people don’t know how many suffer with this disease it will cause people to die and they will go looking for something that might hurt them instead of helping please if you care about people please don’t cut our meds you don’t know what I families go through get to find help and then they want to help but it is all they can do please

Jenn Mills

I have AS and small fiber neurapathy, I also work full time, have a college degree and a life. I am not an addict but I feel like it when I need pain meds to function and live my life. Three years ago I jogged three miles a day and then I got sick. Within six months I could barely walk. Now I’m a prisioner in my own body who needs pain meds to get any sleep or not be in constant pain. My life without even some relief will be a nightmare. Why are the laws hurting real patients.

Connie pearson

I was born with a birthdeft that after years of good doctors trying to fix has left me in coding pain that never stops day after day year after year then I got a pain doctor and for the last 20 years I lived I razed five super great children . my pain went from 8 to a 5 …but all hell felled on me when my pain Dr had to dump me I had for amose 20 years been on 100 morph one 3 times a day and 1600 actiq 4 times a day and then nothing I after a year its not the Madison I am asking for just something for this never ending pain of 8 to 9 it s not right to make anyone suffered ..I try to his my pain but I can’t stop the years from falling . I’ve been all over sanantonio trying to find someone who can care for me but over and over I am told by good doctors there is nothing that can be done that I should move to a state that can get me back on pain meds. I can’t move I pray to god to call me home everything seems so helpless . no I don’t do street drugs more do I drink .I am an alasken I won’t kill my self . but if a bear was to want to eat me it would hurt a lot but it would end . I don’t have a lot of schooling so I aplized if I come off strange to you what I am trying to say is we don’t let animals suffered why is it OK to let people …yes I am crying in zgreat pain that I know there is medison that a pain doctor use to use that helped. I only took what my doctor gave me I dent sail or give my Madison away I think this war on pain doctors is wrong I pray you never fell pain like so many of us do.

Howmuchpain

Why are the chronic pain sufferers paying for the drug abuse of street users and those who became addicted thru bad physicians sins?
I have severe spinal stenosis. I am a 70 years old female and have had previous back surgery on my lumbar spine decades ago. It was the worst experience of my entire life.
I was employed 4 years ago when I first experienced the problem of pain when walking and my leg and foot going numb. I went to a neurologist and had tests done. I didn’t want to have surgery but needed something for the pain in order to keep working before my employment would end. The company I worked for was eliminating my job within a year or two. I needed to keep working as long as possible.
As it happened my employment ended about a year after my back and leg pain began. I was not in a position to get another job as I couldn’t sit, stand or walk for more than 10-15 minutes at a time. I couldn’t find a job that was going to accommodate my pain issues. I went to a few surgeons to see what my options were and they weren’t good. Surgery with at least a year for recovery. I have no one to help me at home and now on social security with a small pension I am only a little above the poverty line. I can’t afford to go to rehab and still pay my house mortgage and pay medical bills and medications.
I opted to try Pain Management clinics. The medication prescribed took months before the right dose was given to relieve my pain and allow me to function. Now I have been advised that due to the government rules I now have to be given less medication and eventually none of one of the opioids. I cannot function with less medication. It just doesn’t work that way. Nothing changed to warrant less medication other than the government rules. Having surgery won’t guarantee that I won’t still be in pain.
I am prepared to kill myself if I have to live in this pain as it is utterly unbearable without relief. I am not an addict. I am a chronic pain patient.

So in conclusion, the TASK FORCE MEETING is going to be writing their own GUIDELINES for prescribing opioid pain medication in addition to the CDC GUIDELINES and now according to Mr. Gottlieb’s statement at yesterday’s meeting, the FDA will also be drafting their own GUIDELINES! This is going to be a complete NIGHTMARE for doctors and pain patients! JUST what we need…..MORE RIDICULOUS UNSUBSTANTIATED GUIDELINES TELLING OUR DOCTORS HOW TO PRACTICE MEDICINE!

Melody Hamby Goss

I have read every comment posted since posting my own some time back. It sickens me to death to hear and feel the pain from people suffering not from physical pain but the emotional pain this imagined “crisis” is causing the chronic & terminally ill.
Not one pain patient would voluntarily sell or give away their meds. They need each pill or injection for day to day survival. My own doctors as well as the AMA are raising concerns over what is about to happen and happening now at excessive rates….the limit on opiod medicines.
The politicians are throwing numbers around that have nothing to do with those of us being treated by legally licensed physicians & pharmacist. These numbers of people dying from overdoses etc are mostly those taking illegal drugs, or from stealing legal drugs. Whenever they decide to separate the two then we should listen, but this is a total humanitarian crisis made up by ignorant politicians trying to make a name for themselves without knowing the facts.
Those people that buy street drugs and those kids stealing from medicine cabinets all have a choice, they also have the ability should they so choose to go to any drug rehab clinic to get “clean”…those of us that are terminally or chronically ill have no such choice.
I find it beneath contempt that I am grouped in with those people that CHOOSE to take illegal drugs from whatever source
I’ve yet to speak with any person taking prescription narcotics that would choose otherwise if there were another source to subdue their pain or help them get from one day to the next…this entire TRUMPIAN & REPUBLICAN mess is totally absurd and others should come to the rescue not only of patients but physicians as well…get the DEA & the POLITICIANS the hell out of our health care…they are killing us…!

Christina Greenfield

I have peripheral nephropathy, fibromyalgia, avascular necrosis in both hips and osteoarthritis in my back, as well as pinched nerves and compressed discs. My doctor prescribes hydrocodone at 4 times a day. I usually only take them 2 or 3 times a day. Without at least 2 per day, I cannot function. It’s not like I can do anything about any of these conditions surgically. Please don’t punish those of us who use our prescription drugs wisely because of the people who don’t. I think my doctor should be able to decide whether or not I have a problem and prescribe what she sees best to manage my pain.

Elizabeth Selleck

after 38 years of living w pain secondary to spinal cord injury I recently rewired pleasure pathways where there used to be pain pathways w/ an 8 week neuroplasticity educational/support group. If I can do it, anyone can!

Stop taking prescription drugs for chronic pain! Rewire your brain. Learn the principals and tools of neuroplasticity!

Michael

I have been a pain patient for about 9 years without pain management I cannot get out of bed with my back and knees as bad as they are pain management helps me get through the day and without pain management I could not work I cannot do a lot of things I would be forced to draw disability I don’t understand why the government is punishing the people who need it I understand there are bad everywhere but not every pain patients should be punished for these people what are we supposed to do without being able to manage our pain on some days the pain is as bad as wanting to commit a suicide

Dennis Schnepp

I am a 60-year-old working professional who has low back degeneration that is non-operable. I have undergone five radio frequency ablation‘s and multiple epidural procedures as well as multiple physical therapy sessions and acupuncture and I barely have manageable quality of life with the current opioids that I take every day – prescribed and monitored by a board-certified pain specialist. I have had to give up golf with my son because I no longer can swing a golf club without excruciating pain. The doctor has reduced the amount of medicine that I take due to the pressures of the current opioid mandates being pushed down from federal and state governments. This has decreased my daily functional levels. My current pain management doctor, who is the only one in a town of about 200,000, is thinking about closing down shop because of the current pressures. He is a very caring physician who has several thousand patients who will be without any options for management of pain should he closed his practice. I will have to go on disability and no longer being a tax paying citizen. There are no other options for my condition. I have been to the finest back surgeons in the United States who have determined my condition to be non-operable. Please consider people like me, a churchgoing non-drinking non-smoking rules following person with chronic pain. If you take away the opiates I will have minimal quality of life. I am currently fortunate to sleep more than 3 to 4 hours at a time without excruciating back pain on my reduced doses. I beg of you, use common sense and realize the problem is heroin and non-prescription medications that are causing the desk in the United States. Chronic pain patients like me take their medications from their doctor and follow all the rules with urine drug testing, drug contracts, and regular office visits. Please, let commonsense prevail.

Martha Arntson

This was an amazing opportunity to listen to not only pain patients but the doctors, nurses but those who attended and spoke up regarding the way pain patients are handled in everyday scenarios. Emergency room physicians, surgeons and physiatrists all participating for one goal…to better the treatment for pain weather acute or chronic they all made comments and suggestions that I personally hope will change what the CDC and DEA guidelines put into place will ultimately change with this conference.

Very sick

I guess there is no sense in commenting. 1,403 comments were received. 1,008 comments are viewable. Another dog and pony show. They don’t give a rats behind!!!

Bren

How do us pain patients find out how much is the maximum dosage each state requires pain doctors to adhere by?
For instance, I am told the state in which I reside, has a maximum of 120mg’s of morphine equivalent, daily. But the next state over, within a clinic I had started 10 yrs ago, has not been specific with their guidelines and I have had a regimen of twice the aforementioned amount, for 3 years.
I had to move on account of my husband’s job.
I’m trying to decipher my rights as a patient from doc’s who don’t want high dose prescriptions associated with their D.E.A. licensure.
Any input would be helpful.
Thanks.

Just a statistic

Doctors are running scared, pharmacists & insurance companies are being doctors without degree’s, the government is controlling lives from behind emotional outpouring from the public who have lost loved ones from overdose. Here I sit in so much pain because none of the listed are me, the individual, with pain but they have made the choice to systematically kill me. 25 years of treatments, shots, ice, heat, rest, meditation and so to no avail. What works? Opiates! What can I no longer get in doses that actually work? Because people that are not me and my Doctor, who has reams of documentation, made the choice to give me a useless, painful quantity of life rather than quality of life! I would rather live only a short period of time as pain free as possible as opposed to a long miserable existence mired in pain. So congratulations you have gotten your results, you have gotten your way. You have gotten my death!

K McMillan

The gov’t becoming involved in this issue created the devasting rate of deaths due to opiod overdoses. They use a data driven method instead of common sense to combat the “epidemic”. More people are turning to illegal opiods now to treat their pain. More often than not, these are laced with stronger narcotics resulting in overdoses. The increase of citizens obtaining theses killer street meds is due to the new restrictions in legitimate pain treatment. You cut people off their meds without any substitute and the pain is still there only it is all amplified with the additonal dependence withdrawal. Of course they will either put a bullet in their head or go look for relief on the streets. Take a look at the rate of opiod deaths. If you categorized them, how many are from pain patients who are following the rules and how many due to illegal use?Also if compare deaths from before 2014 when opiods were made to be more regulated, and now, there is a jump. I have pain every single minute of my life. And there is not a thing left to do to “fix” my bones. I have taken opiods for 6 years now, with meds, I can get out of bed and care for my kids, the pain is still there but it is tolerable enough with meds for me to actually function. That means cooking, cleaning and even bathing. Without meds? I would be worthless. Who wants to live that way? I jave exhausted all other treatment options…and even now, it is a struggle every month to even get my meds. I am made to wait until all meds are gone, then go to my doctor, then drive to the pharmacy which now has to be within 5 miles of my house, fight with my insurance company then pray the meds are in stuck because they are now being rationed. The government should not be treating patients. They are not experienced enough to do so and they have never examined any of the patients. It needs to be kept souly on the shoulders of physician and patient…not rest on the unqualified gov’t

Very sick

In response to the comment below by “A concerned clinician”, these statements are why patients with chronic intractable pain avoid your practices, because your ideas about non-opioid treatments don’t work.

Kari

I hope all the people telling there stories here about their pain and need for pain medications realize that this is NOT the place to leave your official comment for the government to read. You have to actually follow the instructions in the article posted above if you want to be heard by the right people.

David Becker

Experts on pain arent the cavalry coming to fix our pain care system. Theyre stuck inside a systemof poor diempathetic pain care they most certainly helped to create. Their blaming government for their own deficiencies and excesses. And news flash they havent been willing to make deep improvements to pain care. Frankly they dont care much and dont like the facts about themselves to be told by advocates.
Government uses experts for their own agenda like a swiss army knkife and a big golden hammer to imprecisely bludgeon problems like opioids. Government is not the prime mover of poor pain care.
People in pain meed to realize that neither government nor experts are their friends
Theyre way to self centered for that.
Its time to trouble the sleep of experts and govt. Theyve been stone cold careless self promoters who havecrefused to bevresponsive tobthe suffering of pain. Which expert would like to debate me on this issue. They all run out of syeam after a few rounds cause they dont knowvenough to have a real argument

Sheri Lancaster

Really we shouldn’t even be having this conversation. It has gotten out of control. The government believes they can lump us all into one category. They are always saying the opiod crisis, what they are failing to mention is that it is the herion and fentanyl on the streets are what is causing most of the overdoses. Essentially they are causing people in chronic pain to turn to these deadly options. I was in a life changing car wreck almost 12 years ago. A young teen text messaging ran a stop sign and hit me three times. She couldn’t control her car after the initial hit. I now have no discs at my L 4 & L5 it is bone on bone, L3 is bulging and herniated, my spinal stenosis has progressed down from the T3 and T4 into my L3. I have tried decompression, chiropractor, epidurals and finally a nerve block. I did the nerve block knowing that I am allergic to oral steriods, I cannot have anymore because I ended up having a reaction to these as well. The only way I have any quality of life is with my medications, otherwise I would not be able to move. I can guarantee if members of Congress had to live the way people in chronic pain had to live they would never make it. Oh wait I forgot the law applies to everyone but them. They would still receive their medication. People in true chronic pain do not get high off of their medication, it just masks the pain so they can somewhat function. Let’s face it this is not a one size fits all.

Anne

It is time decisions made based on the actions of a few be stopped. Some abuse medication and denying it to those who need it is not only unfair – it is wrong. A famous person overdoses or is addicted and everyone else has to be penalized. There are real people in real pain and unless the medical profession comes up with viable means to decrease or stop real pain – then pain medication is needed.

Paulette Wright

I am from Arizona and we need proper representation.

Paulette Wright

I feel the NIH guidelines and pain management task force should not be politicians. They should be pain management patients, providers from pain management anesthesiologists, nurse practitioners, educators on pain management, and pain patients. Experts of pathophisiology of pain, and how the medications act in the body of the pain patient. Not politicians and legislators. They should only be on a subcommittee, so pain patients are not discriminated against. Medical providers of pain patients need protection from medical boards, false accusations, DEA, and witch hunters, and fake news. We have a government in support of marijana that is not effective for many pain patients. Pain medications are effective, and they should be made available without stigma, to all pain patients with proper counseling, education, and relationships with their team of providers that manage their pain.
By CDC guidelines we were supposed to manage patients as a team, pharmacists, and providers, but that has failed, with pharmacists acting as patient policing medical providers and discriminating against pain patients. I know. I was a provider and a patient! See our talk of our Congressional briefing American Pain Institute, 4/25/18 Washington DC, and CAWNATION internet talk show..Jonelle Elgway…You tube..we clearly explain what has happened in this opiate hysteria on my talk.
See Dr. Klein North Carolina talks, and you will get a professional education on what is really happening in the real world of practicing providers, and pain patients. All the rest…you make your own conclusions. Let the truth prevail. We are all praying for new educated guidelines for providers and patients. Let us get the medical profession back to caring for the patients, without being fearful of witch hunts, and office raids, and patients killing themselves, for stopping their prescriptions, must stop!
Thank you for your time. Please listen to us on You tube … internet talk show of doctors and patients in the pain community… CAWNATION. This is important, for your educated conclusions.

Vicji

Those of us with irretractable pain ate suffering greqtly. Addicts should have no effect in us!

Here is slightly edited and shorter version of the comment I just posted on their site:

Dr Myles Gart wrote a piece entitled “Pain is not the fifth vital sign” Medical Economics on May 20th, 2017. http://medicaleconomics.modernmedicine.com/medical-economics/news/pain-not-fifth-vital-sign

I do not believe Dr Gart has any experiance with Chronic Pain. This is my Letter to the Editor response to Dr Gart:

“… First and foremost, we must bury the claim of pain being the fifth vital sign and replace it with a 21st Century pain assessment tool that incorporates objective evidence and measures of pain. …”

Dr Gart, at this moment are you hungry? In your lifetime have you ever been hungry? Hunger is a type of pain. Did you treat that pain by consuming a substance?

Please correct me if I am wrong. To my knowledge there is no objective test, no simple Pain Meter, that will show me that you are hungry. Yes we could look at enzymes and such. Will that truly tell me just how hungry you are objectively?

If there is no objective test for a pain as simple as hunger, that each of us experience most every day, what hope does a person in Chronic Pain have?

In Ohio the Governor is now practicing medicine by decreeing that there can be no more than seven days of opiate pain medication. Perhaps he should discuss that with the person that was hit by a train and survived with most every bone broken.

My wife Karen died of suicide to stop the pain she experienced for over 20 years, due to the failure of the Medical Establishment as a whole. THIS IS THE REALITY OF Chronic Pain.

“Karen’s Journal of CSF Leak Headaches and Chronic Pain: How Intracranial Hypotension and Levaquin (Levofloxacin) Killed Me”

is now required reading at Duke School of Medicine to educate future Neurologists about the realities of Chronic Pain.

A local reporter wrote in a Cover Story:
“Karen’s first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.” — kpaddock DOT org [I don’t know if this site allows links in the comments.]

May I humbly suggest you read it.

kpaddock DOT com/book
kpaddock DOT com/fq for FDA links on the antibiotic issue.

In book form it has been edited by a medical doctor that has the same condition has Karen had. When bought through the Spinal CSF Leak Foundation 100% of the royalties go to them…

Janet C.

I am one of those chronic pain sufferers that had multiple injuries from 28 years in an auto plant and now that I am disabled from it the only relief I ever got was from opiates. I tried injections of all sorts, physical therapy for months on end, tens units, ice packs, heat packs and all of them only gave me temporary minimal relief. The thing that let me have a life was Percocet. That alone was months of trying this narcotic, then that one since many didn’t work for me either. Once my pain management doctor found that right combination of medications to let me function with as little pain as possible I was finally relieved. Now the government has all the doctors running scared because the addicts of the world can’t be screened out well enough. Really?
I can pretty tell which ones are looking for fix, why can’t the doctors?

C.M.T.

Nevermind. My mistake. It says “CommentS Not Accepted” which I believe means that someone cannot comment on the comment. Is that correct? No need to publish this comment & my last comment asking about this. Thanks.

C.M.T.

Why does it say “Comment Not Accepted” on some on the site of HHS/NIH? One is including Steve Ariens. What are they pulling? Am I reading it wrong?

Joseph Power

I have severe osteoarthritis and osteoporosis as well as 2 compression fractures. I only have VA medical care and they’ve cut me down on my hydrocodone. I can’t even sleep all night through due to pain. I’ve never abused them. Please don’t take pain killers away from those pf us that actually need them.

PETER ODZA

I was in a Glider/sailplane accident when I was 17yrs old. Virtually every bone in body was broken and or crushed as well as internal and head injuries.
I’ve lived a productive life with the help of medication. Have had many corrective surgerys and procedures, epidurals, stimulus programs and more. Nothing helped, sadly if anything it was the opposite. Medications are what enabled me to live life.
With all the restrictions put on Drs trying to help. I stopped for a while which put me in agony doing nothing with my life. Recently I have gone back to see Dr for help to regain my life.
I understand that there is abuse. However, chronic pain patients as myself with no other solutions should not be condemned to spending the rest of life not being able to think and function in society. Which is what these government restrictions are destined to do to me and others. Perhaps those who are making these desitions should be put in a situations where pain is induced and I don’t mean for a minute or two, or even a day or two. Long enough for then to scream uncle. But, guess what there is no relief for those of us who can not turn off a pain inducing device. We live with this 24/7. Hard to do anything, when you are unable to think, sleep, walk or even get up!
Drs should not be afraid to lose there licences or even to be put in jail for trying to help those who are in need of help. Recently I was in the hospital and speaking with Drs who no longer want to be a Dr. Well these regulations will change the caliber of those who want to be Drs in the future effecting our
level of medical care. And for those law makers who don’t care about the wellbeing of those with severe chronic pain.
Think about it that way.

Sherry Warwick

I’m a chronic pain patient. There are several different issues I have been diagnosed.
My concern is, this whole epidemic of opiods. I’ve been on a program for over 3 years. Never abused them as you see i need them in order to at least 1/2 way function. In my opinion you are punishing those of us who need them. Iv’e already been cut back on my doses. I think your going about the whole process wrong. If the heroin addicts and drug abusers choose to overdose it’s their choice. Us that need them to function aren’t doing anything wrong. Let the people die who want to abuse. You can’t help them. Unless they are ready to admit they have a problem and actually want to do something about it. Please don’t punish us.

Cindy Grames

One size fits all does not work with pain medication. My husband has been taking opioid for 30 years with few side affects. This change will lead to increased suicides among chronic pain patients. and people dying from street drugs seeking pain relief.

David Clark

I had heart sugery on 1/31/14. I had my aorta valve replaced and after the surgery, when I woke up, I couldn’t move my left arm. To make a long story short, I suffered a brachial plexus INJURY during the surgery. It took me years and lots of rehab to try to figure out what was going on. They tried several non-narcotics then gave me percocets. They worked. Period. Its the only thing that did. I get discharged from re-hab and now they treat me like a drug addicted criminal. I haven’t had my medication since Dec. I can’t do dishes. I can’t take a shower with both arms. I can’t have sex. A neurologist diagnosed me with Parsonage-Turner Syndrome. Its very painful. They keep sending me to pain clinics where they treat everyone like trash. Those people get paid to say no. Iam physically dependant, not an addict. I am injured, not hurt….there is a difference, but noooooo. So, what am I supposed to do?

Sharon DiSalle

My name is Shar and I have been in Chronic Pain for 12 years. I have degenerative disc disease, fibromyalgia and other painful problems, like knee replacements etc.. Just my DAD has taken my quality of life away. Being able to walk is an effort, therefore I am disabled. I have had 21 surgeries in my lifetime and I’m only 56. I raised 4 kids that I would like to enjoy. Not to mention the grandchildren that I live for. No thanks to all the opioid users, just for a high, my world is destroyed. I don’t want to live on narcotics, but if I want to be able to get out of bed everyday, I have no choice. I feel horrible for all the suffering people out there that have a story like mine. When the Pain Mgmt Dr tells you 90 mg is your max, they are not doing their jobs…..they are listening to governed agencies. Now, I bet those people are at family bbq, birthdays and other events with their loved ones. While some of us have to lay flat on our back and try to have fun by phone. PLEASE, PLEASE, PLEASE GIVE US OUR MEDICATION BACK SO WE CAN HAVE THE BEST LIFE POSSIBLE, UNDER OUR INDIVIDUAL CIRCUMSTANCES. WE HAVE A HEART TOO, BUT YOU ARE CRUSHING IT!!!

Steven j. Coughlin

I’m going to have to drive In pain to a methadone clinic everyday in order to care for myself the rest of the day thanx to this DRACONIAN legislation. Mr. Trump putting forth legislation isn’t a business gaggle of starting high or low and meeting in the middle..its putting forth a bill that is doable for our citizens, is researched and makes sense. That’s what they’re looking for. I voted for you and I like the fact that your draining the swamp but please don’t put forth legislation that physically hurts it’s citizens and veterens.

Steven j. Coughlin

This legislation should be focused on fentanyl. That’s where almost all the deaths came from. It seems that the government want people to be in pain and incapacitated. There’s no other rational. It’s fentanyl that caused this whole problem.

Steven j. Coughlin

In 2013 I was runnover at work on pavement by an 11,000 pound piece of heavy equipment with a tank like track from behind. The machine was moving forward. My toes where touching my shins while this machine was on top of my left leg leaving track marks right up to under my knee. It broke 3 foot bones and ripped all the soft tissue apart and stretched and tore my majors lateral nerve in 3 – 4 places also broke my fibula. . After the 1st operation my orthopedic surgeon installed 3 screws and put in a 6 inch titanium rod above my ankle. It got infected and had a 103 degree temp. After removing all the hardware but the titanium rod I was brought off my 200 mgs of oxycodone. After a couple of months I was still in horrible pain and my foot was discolored red. Finally after 6 months I was referred to pain care where after some texts I was diagnosed with CRPS/RSD. I immediately went home and googled what this was and was horrified. No cure, spreads eventually to your while body and if it has killed at least 2 people who had it spread to vital organs. After trying many different drugs that did not help, I suggested what they had given me in the hospital recently during a bad flair..a shot of a powerful opiate and some valium. Not only did the pain go away but within a couple of hours my skin color and temperature went back to normal. We titrated me up on a long acting opiod methadone and combined it with diazapam (valium). I started to feel relief around 50 mgs of methadone and 20 mgs of valium plus 1200 mgs of gabapentin a day(all I can tolorate). After a year I titrated up to 100mgs of methadone a day, 120 mgs of oxycodone, 30mgs of valium , and 1200 mgs of gabapentin. After 8 months of physical therapy it was decide to do exercises on my own since the hour of the therapy caused a weekly flair of my pain symptoms. I rode my bike and did exercises carefully for the next 5 years. I still couldn’t sit or stand for more than two hour or so but at least I could sleep and do errand and cars for myself. Often I didn’t even need my cane to walk. I did a week trial of a tens device and I felt horrible, no pain relief and also felt cold. The only relief I had was from my medication. I noticed marajuauna would stop the pain and give me energy..but there is no federal money to cover marajuauna therapy for pain since it is federally illegal to use or posses it. Now, I am being brought down off my medication and after a month and a half and 40mgs lower and can barely walk.

Gina

I hope everyone who commented here “copies and pastes” their story at the link provided so the NIH sees these stories and not just those here at the National Pain Report.

I am a 29 year old woman. I have degenerative disc disease and scoliosis as well as multiple herniated discs and torn ligaments in my ankle. I have a 3 year old son and a husband who has RA and AS plus many herniated discs him self. We are a very happy and healthy family! We do physical therapy as prescribed on top of taking pain medication. We are both chronic pain patients. With out the use of pain medication me and my husband will not be able to be a happy mother and father that our son deserves to see everyday. Nor provide him the type of life he deserves. Considering we couldnt work with out the relief of our pain. We never use our medications out of tern and or not as prescribed. If we weren’t able to have these medications me and my husband would be bed ridden and possibly need hospice. As well as child care for our son. Because his mommy and daddy wouldn’t be able to take him to the park yet alone pick him up and give him hugs. I’m afraid my husband would be in a wheel chair with out his medication. I my self would have to quit my career and no longer do what I do to provide for my family. Reading this article has me and my family terrified for our future and what is in store… I plead with the people who have control of this situation and see this for what it truly is. The people who are abusing opiates are not in the same category as the typical chronic pain patient as well as each chronic pain patient are different and schould be treated different medically according to there diagnosis. I know many people who want to go on with every day life just like a normal person with chronic pain and will not be able to do so with out pain medication. I see each side every time I go to my pain clinic. It’s easy to spot the addicts from the people who just want to live a quality of life. I believe that the doctors know there patients and can decide what’s best to prescribe according to there diagnosis! I feel like there is so much more I could say on this topic. I have seen many sides of pain medication and I see more benefits as well as negatives but the positive weigh out negatives. Please do not take away our quality of life. Let my son grow up remembering his mom and dad by his side instead of in pain and sick in bed. I would also like this article to be made more aware to the public. I believe if more people saw this article then they would also have there opinion, knowledge, and experiances! I hope the NIH does what they can do to get the word out.

Sarah

I am a chronic pain patient that suffers from trama induced premature degerative disc disease, arthritis, disc displacement and bone spurs. The initial gymnastics injury occurred when I was 11 years old. I did not ask for this, and have several MRIs, x-rays, etc. that illustrate the progressive degeneration throughout my cervical spine. I’ve tried a number of other treatments including physical therapy and didn’t need an opioid medication until about 12 years ago. 2 yrs ago I was relocated for work. Because of age, I was treated like a drug addict, but after another MRI was able to prove my condition to the only pain management clinic in the area. They cut my dose of Norco in 1/2, which is apparently something they do to all new patients to keep their total pills prescribed low. Now, sometimes I have to ask my husband to help wash and dry my hair before work. I have to go to appts on my lunch break monthly. The office is 30 mins from work, and appts take an hour- longer for drug tests, x-rays, or if they change meds. I’d like to be able to tell my boss I’m late back from lunch b/c I had a dr appt, but I’m afraid he’ll realize it’s for pain meds. At one point, they switched me to butrans, which took 3 additional trips to their office to get them to send in the prior authorization form so I could fill it. After speaking to the insurance company, who recommended fentanyl as a substitute… I was naturally concerned, but had no other option. I couldn’t even get another appt to voice my concern until the following month b/c they didn’t make mid-month appts. At my next appt, I was cut-off and felt attacked on a personal level before I could tell him about the issues I was having feeling sedated and trying to stay awake at work. I even wondered if maybe I look like his ex-wife or something to justify the way he treated me, but i think it was b/c I had reached out on their FB page while i was trying to get a prior authorization form completed. Luckily, by the 2nd month i had developed a chemical burn eating my skin off where the patch was. That dr still refused to write a perscription for anything else and switched me to a different dr in the same practice. My new dr has been prescribing the newer- more expensive XR/ abuse deterant version of norco at the same dosage as before butrans. Btw- I’ve never failed a drug test or given any reason to suspect abuse, but I like my new Dr. I’m just trying to function and keep my job. Please dont make that harder.

Alvy

Talk about over reaction. If Fentanyl is the main problem focus on it. My wife is going to have issues now so that the Govt., Health care, etc can look good and say the are tackling the issue.

Anonymous

In 2003 I woke up with the worst pain you can imagine. By the time I jumped through all of the insurance hoops I had spinal nerve damage and needed spinal fusion to get out of a wheelchair. The pain never went away. I have tried everything including acupuncture and a spinal stimulator. Not everyone who has chronic pain is drug seeking or an addict, and we should not have the stigma associated with that behavior. Pain Management options should not be limited because some people abuse the drugs that we need.