Chronic Pain News and Notes

Chronic Pain News and Notes

You have only a few days—until April 1st to be exact–to submit your comments on the U.S. Department of Health and Human Services Pain Management Best Practices Inter-Agency Task Force draft report. We can’t urge you enough to add your voice to this.

You can read the report and learn how to submit your comments here.

In stories we have done on this draft report, we have received many comments from people who are frustrated and wonder why we continue to suggest that you comment.

The reason is simple:

If you don’t, you won’t be heard (and thus, really shouldn’t complain about no one listening).

In case, you didn’t hear about the Journal of American Medicine report last week, and this won’t surprise many chronic pain patients, a study of patients with cancer referred to a palliative care team for pain management before and after the announcement of parenteral opioid shortages, found that significantly fewer patients had achieved clinically improved pain by follow-up day 1 after the shortages.

As Stanford pain psychologist Beth Darnall tweeted this weekend:

We need acute & chronic pain policies that support *improved* pain care vs. policies that myopically target opioid doses.

She’s right.

Let me highlight another woman who is often right when it comes to chronic pain patients.

One of the clearest voices in the chronic pain community is Kate Nicholson, a civil rights attorney.

If you missed her op-ed in the Los Angeles Times in January, I suggest you read it here.

You can (and should) follow on her Twitter @speakingabtpain.

She has recently picked up her volume on Twitter and I must say, it’s helping educate folks about chronic pain.

Her Tweet over the weekend caught my attention:

#Paintoo I am consciously using this hashtag. The time has come to consider the needs of people in pain in the conversation around opioids and access to treatment generally. I’m tired of the stigma and the notion that pain is an invention of the pharmaceutical industry.

Another extraordinary pain advocate is Dr. Terri Lewis—who told us this month that she is going to turn off the largest chronic pain patient survey ever taken at the end of the month or if she reaches 5,000 respondents, whatever comes first.

Let’s help her reach 5,000 responses. If you haven’t filled it out, please do here.

She has received responses from all 50 states and is using the data to create a patient-centered argument on how to best understand and treat chronic pain.

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Authored by: Ed Coghlan

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Annabelle

I am so tired of being treated like a junky from the street. I have been a Pain Management patient for over 15 yrs and have been responsible for years while taking these meds. Now m life has been turned upside down due to the War on Opiods. I’m literally sick and depressed from medication cutbacks. I don’t know where else to turn.

Cindy

I don’t know about the rest of you but I can not get through the Department of Health and Human Services Pain Management Best Practices Inter-Agency Task Force draft report. It’s too much for me. It’s 90 pages, I have Fibromyalgia, my brain just won’t do it. I want to. Any ideas?

Rose Scalise

I spent 2 days doing the survey and hit the Done button. How do I know if it was effectively submitted and received? Now I have quite a few comments/suggestions/edits to the draft pain report. Even though I read it, I did not see how to get my comments submitted. I have made hand notes on the print-out of the report. I want to type my comments going section by section. Can I just email my typed responses? Or, do I have to go somewhere online? Please help.
Best regards,
RoseS
P.S. While I am awaiting a response, I will give you a general comment on the report. The draft pain report should have a mission statement somewhere so that all the following recommendations/goals/objectives clearly support the mission. Too much of this discussion is conflated. So, if all topics of the report were separated with subsections on 1) chronic pain management patients, 2) acute pain management patients, and 3) illicit drug users it would help separate and keep things clear. Too much is conflated, even the statistics. The CARA legislation that created the task force that wrote the draft pain report lumps legitimate pain patients together with illicit drug users. The act, Comprehensive Addiction and Recovery Act, is legislation that covers chronic pain patients, and by its very name makes us a subset of “addicts” thereby further reinforcing stigmatization, disrespect, and distrust of those of us who need opioids to have some kind of reasonable quality of life.

Rose Scalise

I have pages of comments on the draft pain report. I wanted to type my edits/changes/suggestions going along the report section by section. I need help to find how to make my submission. Can I email it somewhere? Or do I have to go online somewhere? I printed the report and have read it. Now I making hand written notes. I want to type it up and get it in. Please help. Best regards, RoseS

Casandra Maxson

I’m a severe chronic pain patient who’s been force tapered immediately off my pain medications. I’ve had three back surgeries one left me with a piece of scalpel that broke off and is stuck in my L5S1 nerve. Nothing can help removal unless I want to live with a colostomy bag and bladder bag. There’s no injections that can help my pain, my body rejects anything foreign so no spinal cord stimulator or morphine pumps work for me. I’ve tried acupuncture , chiropractors, massage therapy, aqua therapy, tens unit caused more pain, so, so many Pain medications, off label medications all of which didn’t work or had reactions to the medications. Psychotherapy, prolotherapy, counseling, multiple injections, steroids etc that didn’t give me any pain relief. So there’s so many severe chronic pain persons that have been forced off their Opioid medications while being treated as DRUG ADDICTS. We are not druggies, we don’t get high YET can live a good quality of life unlike the life that was taken from us because of druggies (people who abuse opioids for a high)!. Yes there’s a lot of us chronic pain persons who need greater than 90 mgs of opioids a day. Some need just one Opioid while other’s use a concoction. Yes, the laws need to change to help all of us who are left suffering day in and day out due to the government only caring about the druggie/overdose deaths. Not one person’s pain can be helped equal to another person. Doctors are scared shitless to treat/prescribe what the patients actually do need due to all the government laws, restrictions even though many organizations state we don’t have enough statistics/data about chronic pain. I’m very concerned about my well being as well as thousands of other suffering chronic pain persons.

Michele McDevitt

I’m in severe pain due to lower back spinal disc ruptures, scoliosis, pinched nerves. This happened as a result of a 1997 car accident when I was at a stop light and a van ran into the back of my car. I also have stenosis that is progressively worse and now there is only a 1/2 inch of clear space! I’ve tried everything ober the years. The cortizone injections made it worse. The 5 Spine surgeons say surgery on the discs won’t work and is too extensive to “try”. Now, I’m 68 and take 3 Norcos a day plus 15.mg extended telease of moraphine as my “core” pain management drugs. I can opt for stenosis surgery after I lose my ability to walk! I have NEVER exceeded my prescriptions over the years. IF these are “outlawed”, I will have NO quality of life due to the chronic pain. Please let the doctors decide. It is so frustrating. SOMA, which is not an opiod, is the only muscle relaxer that works on me, but i can no longer get any of my doctors to prescribe it for me as of 2017. This is because a few people drove after taking it and had accidents. When I could take it, I could cutback on the opioids. Now, my doctor prescribes a mild muscle relaxer of 9 PER DAY! This can’t be the better way to go. Please consider this when making decisions. Please only go after the doctors who over prescribe opiods and allow the many good ones to prescrine based on a patient’s needs. Stop scaring the doctors and HMOs from prescribing alternatives, like SOMA, opiods to people like me, cancer patients, etc. The “opiod crisis” is street problems , not most patients with chronic pain.
Thank you.
Michele McDevitt and
Craig Detwiler

WILSON HULLEY

the worst possible discussion RE: RSD whole body……..with SSA/SSDI…..is a very sad experience….you are dealing with federal employees that DO NOT KNOW A DAMN THING ABOUT RSD. EVEN WENT TO THE SSA OFFICE IN WHEATON, MD……..THEIR STAFF WAS STUPID ………..NO ONE IN THEIR OFFICE KNEW ANYTHING ABOUT RSD….ALMOST AS BAD AS OUR NATIONAL OFFICE OF OUR VA AGENCY……….

Janelle Dalstra

I have been disabled and in severe neuropathic pain from six autoimmune diseases since 1998. I have tried many therapy’s and different medications, even had 21 surgeries, in attempt to lessen the pain I was in. Only the effects of taking opioids gave me enough pain relief where I could find a life worth living. Now that I’ve found a life with them, and been given a chance to enjoy my family and friends, they are taking them away! Do you know what it is like to suffer in such severe pain, where you can’t get out of bed and you call out to God for relief? That the only thing you can do is cry, because you can’t go to sleep, the pain is to severe and it keeps you awake? Thie Government is committing a crime from what they are doing to people like myself, by regulating the only thing that gives us any relief, it is a disgrace! What will they do, when they create a additional crisis, by blaming the drug that effectively has treated pain for 50 years, instead people with the lack of discipline in search for a high. What about those they hurt that has obeyed the law and followed all the rules to earn the right to be treated? Is the drug addicts life the only one that matters? What about the desperation that this will cause in those who still are in pain, forcing them to find relief on the black market, creating another crisis from suicides, rapes, murders, over doses, and deaths? What will they say to our Lord when they have to answer for this tragedy they created? In the 63 years of my life, I have never seen such disrespect to the patient and to the doctor! Just who does the government think they are, by setting rules we have to abide by or doctor licenses will be revoked. They know nothing about us! Do they know what disease we have and how long we’ve been suffering? Of course not! There pretending they know more than the person who paid the price to become a doctor. Shame on them, shame on this nation, ( and those who go along with it! )

Greg

I am a Tennessee resident .. moved here from Florida 3 years ago. While living in Florida i was prescribed hydrocodone for chronic back pain due to spinal stenosis and degenerative disc disease .. Ive been fortunate enough to find doctors and pain clinics here in Tennessee to keep me on my pain meds without being tapered. I am still on 3 hydrocodone 10s a day and have been for the past 6 years .. being able to stay on them with the pain clinic i am visiting comes with a price though … I must get spinal injections , or a 3 month steroid shot … That is the only way they will continue to refill my pain meds. If i refuse the injection part of my treatment , they will refuse to see me and i will have to search for another doc that will prescribe them to me … As of now , there are no other doctors that will do this .. I tried the spinal injections and they worsened my pain and gave me severe migraines … Now im on my 2nd 3 month steroid shot which is affecting my intestines , bladder & kidneys. I also have diverticulitus flare ups with these steroid shots. Im damned if i do and damned if i dont .. I will suffer greatly if i lose my pain meds by refusing these injections and im still suffering greatly by getting the injections and putting my self in danger of more health problems … I dont know what to do anymore. The clinic is putting the blame on the FDA and DEA saying i must get these injections to be able to get my pills. They say i have to follow some kind of pain management plan besides the pills alone. These injections arent even FDA approved. This is all about the $$$$ and its killing people. Im one of the victims.

dave

Ed. There are many ways to be heard about pain care. The the first rodeo and wont be the last.
Frankly, as i have stated before, it is demeaning and deceitful for the PMTF to relegate millions of people in pain to being “commenters”. It is clear they refuse to work with people in pain- via multistakeholderism to develop a plan via deliberative democracy . Instead DHHS and Congress have, by design demeaned and belittled the role of people in pain in policy and guideline developments and their moral isolationism and discursive imperialism and right wing authoritarianism is on display. Which one of them is prepared to debate yours truly on pain management. I have given some of them the opportunity. It is clear to me they are quite unprepared to hear and aggregate the concerns of people in pain or refine and enlarge them. Note well they make no mention of what process they will specifically employ in considering the comments of people in pain. They make no mention of using sophisticated analysis like harvard 3 psychosociological analysis. So there is no process in place to ensure fair and full consideration of the comments. So what else is new in DHHS… This is no different then Dr MAckey telling people in pain to get with the NPS-after so many comments criticized the draft of the NPS. I think the NPR is missing the point- the PMTF has grown the trust deficit between people in pain and government.
Let me make a few more points. Where is the evidence that anyone on the task force has special training in absorptive capacity? How bout deliberative capacity or discourse analysis? On the contrary- it is clear that the members of the task force are narrow minded and incapacious when it comes to considering the ideas of others. Not a single one of them has traveled free and far in search of solutions for people in pain-and it shows.
People in pain are finding new ways to be heard and dont need the PMTF as a forum.

Steve A

I am still struggling to get through each day all day from chronic pain. I’ve had numerous alternatives and no relief from my pain. I feel I would be better off dead. I think about it everyday. I have a plan in place non violent to no one but myself. I have told my pain Doctors! They have not offered me any help medically with the right amount of medication or not even a phone number to call for help! I don’t know why the cdc wants me to stay just under the level where my pain used to be better than now.. I was on that medication for years without needing to increase my dosage. I have been under that level for two years and counting! please help!!!

I’m so sick of this [edit] and the government thinking they know what is happening to chronic pain illnesses and the people that get their pills for pleasure. I’ve had 14 back surgeries…my last one just about one month ago to have the electric stimulator removed after having this device not working. After going through two years of this device not working the west coast sales manager saying to me if he was my representative from the start I wouldn’t have been a candidate for this device from the beginning.
Government go after the drug dealers and leave the people alone with chronic illness alone and worry about the damn insurance companies who are the biggest threat to the people who don’t want to live because of their pain.

Cheryl Ford-Marosi

The so-called Opiod Crisis has done nothing but to provide the Feds with more leverage and control in places they don’t belong. My physician is a very conservative General Practitioner. He has treated thousands of patients and is well versed and degreed on patient care. He never prescribed more medications to his patients than needed. He treated me conservatively and correctly for debillitating spinal stenosis, fibromyalgia , Rheumatoid Arthritis and degenerative disc disease. When my pain became so unbearable he prescribed me a low dose of hydrocodone so to alleviate some of my pain so I could function and attend to my ADL’S. I was so happy to get some relieve with something that didn’t hurt me with my functioning. Then the feds decided to dictate to my physician. They threatened to remove his license and make it difficult for him to practice if he prescribed opiods. He decided it was not worth his trouble to become involved with the federal government making his life miserable so he stopped prescribing any opiods at all. I feel like my doctor was forced to abandon the care he felt was working very well for me just because the federal government threatened his profession. I’m not alone. The Federal government has violated my patient rights and care by dictating to my physician what can or cannot be safely delivered to me for my physical condition. This is like the Nazi’s did to people. This must STOP! What’s next you must ask yourself? We must act. People are suffering. We once could function. Now we lay in pain totally unable to do anything contemplating suicide. All because the Federal Government stuck their noses in patients charts where they did not belong!

kelly

I had to watch my beloved mother die in unspeakable agony over nearly a 3 week span of time, during the first round of opioid hysteria (this was in ’97, when oxy started being called “hillbilly heroin” because recreational drug user morons were abusing it). She was at home with hospice & they refused to give her anything but CHILDREN’S LIQUID TYLENOL, even after she was unable to swallow anything at all. There was absolutely NO question that she was dying, & fairly soon. It was sadistically, inhumanly, evilly cruel. I really almost lost my mind.
The fact that this vicious criminal behavior is happening again is beyond unconscionable and monstrous. I sincerely hope that at some point the architects of these crimes –because that is what they are!– are brought to justice. I also frankly pray that every one of them goes through the suffering & torture that they are inflicting upon innocent people FOR NO REASON. I no longer care if that is not a decent thing to wish; they are savaging untold numbers of people because they are liars, because they stand to make money from these crimes against humanity (Kolodny, Ballentyne, & many others), because they’d rather jump on the propaganda hysteria bandwagon & ride to fame than pay attention to any actual facts or evidence (Gillibrand springs to mind).

I commented on the Inter-Agency task force report long ago. I’d put in a thousand comments if I could. Please everybody, speak up & insist they use evidence & facts rather than propaganda, PR, & hysteria!

ElizabethR

I submitted comments and also took the Survey. Hope enough others did so that long term pain patients are recognized as a sizable, legitimate group. That is probably the best way for us to gain the attention of policymakers and others who can help to change the draconian measures put in place 3 years ago.

Amanda Tix

I did the survey and at the end seen July 2018? Is this a typo?

Gwin

I have been on pain meds for about 15 years. It’s Tramadol/ace. My GI doctor told me he couldn’t help me if I didn’t give up pain meds n muscle relaxers. I have RA, osteoporosis, fibermyalgia, degenerate disc, stenosis, and other pain related diagnosis. I think it’s unfair for everyone to be grouped with pain med abuser. Was told by a lab technician he could tell I was a drug user by my veins. Someone needs to educate health professionals. I can barely get up n down. But stop all meds that helps alleviate pain.??? Tired of being persecuted because I have to take pain meds even if not strong medication.

Cindy

I believe that denying opioids violates the 8th Amendment’s ban on cruel and unusual punishments.

It’s torture — physical and mental.

And suicides by desperate pain patients are murders by our gov’t, imo.

And anyone arrested for buyng illegal drugs after a forced taper should be found not guilty by reason of self defense.

And dont’ forget the harm to our bone health, heart health, etc when we are forced to become even more sedentary due to forced tapers.

The Declaration of Independence asserts our rights to life, liberty and pursuit of happiness. Denying legitimate pain patients our needed meds denies all of this too.

Jill Willson

Regarding the National Pain Report survey, it is unfortunate that it was worded so badly as to not allow many of us a voice. It made assumptions in the wording of questions so that I was unable to properly answer at times. I had to guess in order to move on as I did not have the option ‘does not apply to me’. For example, I have experienced chronic pain since 2008. I have a very supportive team of drs who do what is best for me at my guidance. I still work. I take about 23 different meds and supplements every day. I do not take opiods and never have. I, and my team, agree that opiods per say will not benefit me personally. However, I have had a problem with my insurance (OptumRX) unilaterally deciding to raise the cost of one of my very important meds from $40 a month to $700 a month. I had no way to indicate this on the survey, which should be including this data as it is part of the bigger picture. If you only wanted to hear from opiod users, you should have made that much more clear from the beginning. In my case, I was able to substitute one med for another and get it filled through the Kroger drug plan,, so I could happily cut Optum out all together. They went from getting several hundred dollars a month from me total, to NOTHING from me total as I moved all of my meds to Kroger and away from Optum. This should be part of the conversation as it gives an example of how many hoops we are forced to jump through and just how little providers know about how to navigate insurance. My husband found Kroger. I’m not sure what I would have done otherwise as we definitely can’t pay $700 a month on top of all the other meds and treatments I take!

Sandra Elliott

the pain is very real for all chronic pain patients and the attempts to force tapering is unforgiviable

Dovie

I have chronic pain and have been treated like a drug addict for over 10 years either doctor offices or pharmacy’s. I traveled from Oregon to California for over 3 years to see a great doctor but he retired because he was tired of being tormented by the DEA. He never did anything wrong but he prescribed opioids. I had not been able to find another pain specialist to prescribe opioids but they will prescribe Buprenorphine. I know people who abuse this medication too. If you try to discontinue this medication the withdrawal will last a long time just like methadone. I’m so upset about this. Now buprenorphine is about all that will be prescribed. I should have bought stock. Who is making money on this medication that you CAN overdose on. I think politics has been involved here. Alcohol isn’t illegal and it kills more people and distroys more lives then any drug. The studies conducted on opioids, were other drugs and alcohol also involved? Did someone decide to conclude some died from opioids just because they had opioids in their system yet had methamphetamine, alcohol etc in their system? Not everyone who gets pain medications prescribed goes out and abused drugs.

Marc

[Edit] is [edit], People are the ones who screwed us, the pain suffers’. People that have a sore arm or sore back. I Shattered my neck, shoulder. Broke elbow and wrist. My neck is screwed on both sides from C-7 from C-3. Shoulder has anchors and screws. Wrist 3 surgeries and an elbow. Dr. Only gives me 2 norco a day. That doesn’t do anything. Barely can I move. Can’t sleep at night and no Dr. Wants to help because of this [edit] that’s going on. It’s absolutely ridiculous that the people that abused the system broke it for the people that need it most.

Janice HIll

I have lived with chronic pain for over 15 years. From what I see and hear the crisis is tainted opioids selling on the streets. But the people needing the medicine to help them to do daily activities are the ones suffering. I as most people take their pain meds and know the term to medicate safely all to well. We do not abuse, we know to be cautious as when we need them, they will be there. I pray the people in Washington will hear our voices.

Dianna

Chronic Pain Patients, I know you are tired, I know you are in pain, and I know you are feeling alone and hopeless. I can relate. But, there are thousands if not millions of us in the same condition. Draw on whatever resources you have left, brush yourselves off, and fight. These are important issues and if we don’t come together to make ourselves heard, we will continue to suffer.

Regina Woods

I have an incurable rare disease in my spinal cord; Syringomyelia. It causes excruciating pain. I have tried every type of alternative..and have found opioids give me the ability to walk, and do daily necessary task to survive. I struggle monthly to explain to pain physicians the agony I still feel, the underlying pain..just to be confronted at pharmacies with questions, Suspicion and delay. I have NEVER FAILED a drug test, nor have any Red Flags. I take my script as directed. Opioids have been “lumped in” with street herione, catorgorized as demeaning. There are real invisible diseases, where the “patient looks fine”; we still want a quality of life, we still strive to put our hair in place, fix our faces, move forward, keep moving.. This is a genocide of the disabled and low income people, the restrictions that The CDC, Medicare and that Politicians have put in our medical Doctors to manage our pain properly is torturing Americans that suffer to control their pain. Some resort to suicide. Please put the management of pain, back in the hands of Board Certified Physicians that have established a patient/Doctor relationship with the I’ll.

T. Negrete

When the Government found out that their response to the fake Opioid Crisis was hurting Chronic Pain Patients they could have reversed their response. However, they choose to keep us in pain an committing SUICIDE. It saves them $$$ in Medicare costs and Social Security. They DO NOT CARE about us!

Thomas Wayne Kidd

I have already sent in my comments.