What? Another Chronic Pain Survey? Well – Yes

What? Another Chronic Pain Survey? Well – Yes

By Ed Coghlan.

I was on a Twitter conversation with some leaders in the chronic pain advocacy area and there was one general agreement:

Slowly—very slowly or should we say too slowly—the momentum about the treatment of chronic pain patients has begun to turn.

Some of it is because the chronic pain community—a disorganized but passionate group of millions of people—has been finding its voice.

Now, there’s another opportunity. We recommend you take advantage.

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.

Cindy Steinberg

Ms. Steinberg is important because she is the only chronic pain patient advocate on the Task Force.

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

I posted the following comment tonight on behalf of the National Pain Report:

I am editor of the National Pain Report, which covers chronic pain issues and has a very large audience. The commentary section of the stories on our site gives a window into what many pain patients are feeling–which is a sense of abandonment in the wake of the impact of the Opioid Guidelines. A common question is: If you want to reduce opioids, what are the alternatives? I would argue they are still waiting for an answer. I hope that the discussion with your Task Force focuses on the importance of increasing access to quality health care for chronic pain patients by promoting an integrative care approach from which millions of Americans who suffer from chronic pain may benefit. Chronic pain is like snowflakes…no two experiences are alike. Your recommendations hopefully will reflect that.

What will you tell them?

You can do here. (comment here)

We ask that you comment by May 25th.

Oh, and if you do comment—let us know what you say, if you want, in our comment section.

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Authored by: Ed Coghlan

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Kel b

Please join us for our Nationwide Rally, September 18, 2018
Each state, multiple cities.
Find info on Facebook
Or website Don’tPunishPain.com
Thank you!

Denise

Great comment, Dirk. The Hippocratic oath “First do no harm” has been changed to “duck and cover” or “pass the buck”. But we can still use our voices, EVERYWHERE. Feel better, all.

dirk

I have read through a bunch of these replies and from the gist of it the government is failing both addicts and chronic pain patients. Sigh. Nothing ever changes. Try to stay healthy, because medical insurance is like car insurance just patch it together as cheaply as possible and deny you screwed it all up.

Ken Atwood

I’m 66, and have peripheral neuropathy and rheumatoid arthritis. I’m in chronic pain daily and all the doctors gave me is gabapentin which doesn’t work for chronic pain. I have also been on lyrica, cymbalta and celexa which made things much worse. Why are doctors made to give antidepressants for pain but they don’t help with it. The DEA is trying to get a bill passed trying to take away the pain medication from us by using false information about opioids to get a bill passed. This is cruel but they don’t really care. I can’t take it much longer

Denise

Five botched back operations, a cracked pubic bone and fibromyalgia led me to Oxycontin 20 years ago. In this 20 years, I stayed with my dr. 15 years actually voluntarily titrating my dosage down from an initial 280 mg a day to only 40mg. Last June, she lost her license. I was given 6 WEEKS to go off Oxy with nothing for pain nor the effects of rapid titration.
I have to fight for my prescription lidocaine patches; (which insurance doesn’t cover), my nightly ambien and two lousy valiums for panic attacks.
My body is completely confused. Everyday feels like I am moving thru mud. The pain is indescribable. Everyday things I could do last year on Oxy are gone. I can’t grocery shop, I can’t walk my dog. If something falls on the floor, it stays there because I can’t bend from the knees due to osteoarthritis and my spine.
For ten months I have had diarrhea, my brain is totally confused, and even simple tasks like paying bills are overwhelming. THIS IS YOUR BRAIN NOT ON DRUGS.
My withdrawal cost me almost $5k out of pocket from random specialists visits to manage symptoms, prescriptions, people I have had to hire to do simple errands; this is what happens to those of us left with no family who can’t function. An expense anyone disabled can ill afford. Forget massage, acupuncture or psychological support; my insurance doesn’t cover it and I am broke.
I am over 62, I have been legally
disabled since 42. I wasn’t looking for an addiction, I was looking for relief. We were caught in a net by
people who abused a drug that gave us some sembalance of normalcy.
Suicide enters my thoughts often now. I can’t stand the pain. What is so laughable to me is if one more doctor congratulates me for going off Oxy, I may lose it. They are all passing the buck because THERE WERE NO STUDIES AVAILABLE TO SHOW THE EFFECTS OF WHAT WOULD HAPPEN TO US. These Himalayas of the mind are clueless.

Andrew

My names Andrew and myself a full Deaf with limited access to handle my pain. I fell the stairs to safe my daughter when she was 2 years. As my time continue with condition is get worse. At first, I m try to avoid to dependence the pain medication due side effect of withdrawal. Plus, most of the pain management won’t provide the interpreter with sign language. So it is my limited access and fear to voice out about my pain. I have to lied to pain management, because the pain once awhile went haywire for no reason because I am signing which it involved body movements. Lord, I ask Him to get me home, because the pain start get worse, almost any medication sometime work or just don’t.

When the state is working on legal on cannabis. it is my hope that I can control without to let pills controlled me. I am only 38 years old, been on continue 5 years with fears and worry. I have repeatedly to suicide, but it not the answer. It is selfish for me to leave apart my family and may torn apart on wife/mother only knows the happen because of witness see me the pain.

When the pain out of control, what am I going to do? ER – is wasteful fund. Doctor is one that I am stuck with contract. I just don’t know what else to do.

I been surgery the SCS, shoulders twice, neck fusion, and soon will need other neck fusion that damaged. Now I have issue my foot damage by arthritis. What more do I need suffer and deal with pain management with limited access. It is really discourage myself… Hope this is answer you look for. As everyone else are rights who are the truly Chronic Pain. Chronic Pain is killing you in silent way such as torture, emotional abuse itself, and shedder the hopes.

Joni

The opioid crisis and the chronic pain population are unrelated. Those who abide by the law have the right to a private relationship with their physician and the right to a semblance of quality of life via some pain control. It is so humiliating to be treated as if we are drug seeking criminals when we are just patients with a disease process that isn’t going to get better. Whoever is responsible for initiating these guidelines should have thought of a solution before taking away our livelihood. To whoever ot was, remember, Karma can be a [edit], my friend.

Theresa Kesecker

I am 61 years old. I am under the care of a rheumatologist, pain management, dermatologist and many others. I have degenerative disc disease, bulging disc, lower scoliosis. Rheumatoid arthritis, psoriatic arthritis, osteoporosis, hip replacement needed, bad knees, ankle, fibromyalgia, auto immune hepatitis which is where your body eats your liver along with PBC, SLE along with other autoimmune diseases. The current restrictions make it difficult for people like me to obtain my monthly meds. I am not only receiving pain meds for my daily living i am also doing alternate options as well. But in reality as others have stated the more restrictions make itmore difficult for people like me to get but the addicts will still be obtaining them probably easier then me. My suggestion is maybe to have them filled by pharmacies only praticiating in national data base and national monitoring. Yes there needs to be restrictions but not to harm, damage or make it impossible for the ones whom need it to get them! Here is the main point people rely on them for daily pain relief to perform daily work, and to provide for their family and if it becomes impossible for people to get them that need them then disability claims and welfare lines will just increase! So think about people who need them vs the addicts for once!!

Melissa Guthrie

Im am 39 years old .i have been on pain meds for 15 years .i need them to get out of bed .my health is bad .i have 3 herniated disc .i have ra gout and graves disease .i can not walk with out my meds ..i also have had a major heart attack when i was 35 .it happened when my meds were taking away because my dr was scared of losing his license . it is not fare to the people that are in chronic pain .i got my meds back from a different dr. But now there talking about taking them away period .and thats not fare. What they dont realize is if they take them away u will have more deaths on your hands then u do now .people as my self will not be able to live in pain …u think the st drugs are bad now [edit] wait until u take away the pain pills .im out here in this world everyday the pills are not the problem the st drugs are .get Fentanyl and carfentanil off the market and you will see a big difference but don’t punish chronic pain patients

Sunny Patrick

I am a U.S.M.C. disabled Veteran who is no longer allowed monthy pain medications from the VA, as the VA is ‘discontinuing’ them. My frustatration, my pain, my anxiety has increased to level’s of uncontrolable measures! Im very disappointed on how this has all turned out. I believe there is a better solution/s than to have those in severe pain constantly made to suffer! And/ or forced to go looking for other means of relief. Legal of otherwise. Safe or otherwise. Proud to serve.
SEMPER FIDELIS
SUNNY P

Kat Koe

I have a rare, incurable, chronic, intractable, condition, trigeminal neuralgia type 2 (TN2). I tried numerous medications, saw over 85 providers, tried at least 20 different medical treatments, and two brain surgeries, all of these options failed. It was then my doctor’s prescribed two opioid’s. I finally had major improvement to my 24/7/365 excruciating pain. I could function again, get out of bed, spend time with my family, did my own errands and didn’t need to rely on other’s. My health improved and I wanted to live! By then it was apparent to my doctors that my TN2 was resistant to medications and medical treatments. The two opioid’s were the only medication’s that helped. Prior to opioid’s the TN2 pain was totally debilitating. It was driving me mad, wearing me down, had taken its emotional and physical toll on me.

Pain management doctor’s need to be able to practice medicine again without interference from the government or the threat of going to jail. More and more doctor’s have stopped writing opioid prescription’s and leaving chronic, intractable pain patients to suffer in agony without any pain medication. We never know if our prescription will be filled at the pharmacy or denied by the pharmacist or insurance company; it’s a never-ending battle. The doctor’s have gone to medical school, plus extra schooling for many years. We understand there are some unscrupulous doctors and pill mills and those doctors need to be reined in. It’s sad there are people who fake injuries to obtain opioid’s illegally, they have ruined it for the millions of people with chronic, intractable pain patients. There are thousands, if not millions of other people just like me who have chronic, intractable pain conditions, and have tried most medications and treatments before resorting to opioid’s. We don’t sell or divert our medications, it’s unfortunate we need to take them to survive, we feel lucky the option is available, please do not take away the option of opioid medical treatment from the people who need it most. Thank you for your time

A. MacKenzie

Ed – I take issue with this phrase from your comment: “I hope that the discussion with your Task Force focuses on the importance of increasing access to quality health care for chronic pain patients by promoting an integrative care approach from which millions of Americans who suffer from chronic pain may benefit.”

I believe that our stance needs to be that opioids MUST be available to chronic pain patients. Subjecting chronic pain sufferers to an ENDLESS pursuit of relief through a wild goose chase of alternatives is cruel. I for one did this for years before I finally gained relief from a small dose of tramadol/apap daily.

We need to ensure that opioid meds are available when they are (for myself anyway) THE ONLY THING THAT PROVIDES RELIEF – and gives me back a semblance of my life.

Ali Shepherd

Please don’t leave us behind. Many if us use opioids responsibly and do not have any other effective way to manage moderate to severe chronic pain. Opioids can be a very effective tool when used properly. Please keep our interests at heart.

David

My comment
Please help legitimate patients who suffer from chronic pain. I visited my doctor today for my monthly visit and for the 3rd time in less than 2 years my medication dosage was lowered. I have medical issues backed up with medical records spanning about 30 years. As a disabled American and as a basic human being, I should have in the least a basic right to be treated for my condition and not labeled or put into a generic group of people.
One size does not fit all and with no recourse for patients forced to suffer from legitimate medical conditions, our rights as human beings are being strongly effected causing major and in some cases irreversible damage. While pain medications may not be the answer for everyone, for some it is the only option and the regulations being forced on us is inhumane.
Thank you
David

c.c.

As soon as I mention who controls Afghan heroin and why is there a record high ,
10,000tons twice as much as the year before. Gone up since 2000. go to you tube ask “who controls afghan heroin?”

Wendy Munson

This is what I just submitted to the The Pain Management Best Practices Inter-Agency Task Force:I am in constant chronic pain. I do have a sympathetic doctor who is helping me with my opioids and does encourage alternatives. Anti-inflammatories are out because I take blood thinners for a chronic blood condition and have for the past 20 years. I have a 50 degree scoliosis curve and severe sciatic pain. In addition to right hip bursitis, I can barely stand for more than 2 or 3 minutes to cook my meals so preparing meals is an all day event where I prepare little bits at a time. I can barely take care of myself and my husband does most of the housework. I’m in my late 60s. Additionally I have a condition in my abdomen from three abdominal operations 20 years ago (cutting my abdominal muscle nerves) that created massive ventral hernias. I’ve had three major operations in the past three years resulting in 10-inch incisions (one an intestinal blockage that nearly cost me my life, see attached photo), with very difficult recovery making it difficult to keep up with physical therapy. In fact, each operation was brought on by increasing my physical therapy, which started to help my pain but endangered my life.

Suffice it to say I do need the opioid pain medicine. Until the last 3 or 4 years it was not a problem and my regular physician could prescribe enough of it. Not anymore. Now my husband must take off 3 or 4 hours once a month to take me to a pain specialist who is out of town because I cannot drive; it’s like I’m being treated like a criminal. I’m really fed up with this opioid epidemic nonsense. Most of us, as you can see from these comments, are seriously ill people and we deserve to be treated like human beings, not like criminals. I’m crying as I write this. Please alert the powers-that-be to the terrible, terrible things that they are doing to us normal citizens who simply need pain medication and have tried everything. I have tried steroid injections, I’ve tried physical therapy, I have tried everything I safely can, and I can’t try certain other things. I tried Gabapentin. It turned me into a zombie. I would just sit there for hours doing nothing; it did help the pain somewhat but then I have no life on Gabapentin so there are certain things you just can’t do. Opiods do help the pain, that’s just plain and simple. I follow the rules and I don’t think in that case that I run a risk of “accidental overdose.” You’re talking about OUT OF SPACE

Maureen M.

Hi Ed, I will do the survey after this post. Please…keep them coming! 🙂
Basically I will say that (in my opinion)a good percentage of us long time CP warriors have tried most integrative therapies.
Most of us do not like having to be on our meds for many years now.
Most of us know exactly what works for us and unfortunately that is our medications or medical MJ.
I,for one, would give anything to be off meds. And therefore I continue to try anything to find a way. My newest journey is with ‘energy therapy’ with an experienced therapist, the past 8mths. So far, this has not given me the opportunity to even decrease my med amounts tho. 🙁
As alway, I thank you for being there to help us along! Maureen M.

Casandra

wow, I’m impressed they have a chronic pain patient on the team. I’m a severe chronic pain patient who’s tried tens unit, aqua therapy, acupuncture, chiropractic care, Psychotherapy, Physical therapy, etc none of which worked for me. My biggest complaint is I have a piece of metal stuck in my L5S1 nerve that can’t be removed due to damaging the nerve more. If that were to happen I’d have to live with a colostomy bag and bladder bag, neither of which is something I want. The only thing that worked for me is morphine ER and IM. I’ve tried herbal remedies, all the other Opioids on the market which gave me such seriously allergic side effects. My body rejects anything that’s foreign to my body. It took me over three years of trial by error of medications and therapies to finally get what worked for me and gave me the best quality of life. So my question is, for people like me who’ve tried so many medications opioid medication and non, what are we to do if we’re not allowed to have the doses, concoctions, of Opioids that actually help us live a quality of life? Also, there’s the messing around with our bodies, systems with being made to try other medications that we know will cause us problems then having to stop those medications and waiting for another doctor appointment while being in so much added agony. There’s even more off label marketing of drugs that are being prescribed with worse side effects than the Opioids we were prescribed. There’s not a one size fits all when it comes to managing chronic pain and the medications. Some require less as some require a higher dose, or a combination of Opioids.

Jennifer Reed

I did comment on the docket as well but I used up every space allowed. Thank you!

Mark W Ryan

Continued…

I can’t blame the Pain Dr.s for protecting their license to feed their families. However, I find it highly frustrating that politicians and regulators with little to no medical expertise do not take the needs of people with real medical issues into consideration when they impose ridiculous restrictions and threats just so they can go to the media brag about how they are taking steps to solve the opioid crisis when in fact they are too lazy to do the job right. They are actually penalizing the chronic pain patients, causing them even more pain than they have been subjected to already.
The regulators and politicians need to be held accountable for being lazy and causing more harm than good to the real chronic pain patients; we need to threaten them with their livelihood for not doing their due diligence in this matter.
The medical needs of pain patients are not all the same. One dose may work for one patient, but not at all for the next patient. The high dose of opioids that I take don’t make me stoned, they make me functional in society. Pain Management Professionals are the ONLY ones that should be allowed to diagnose and treat pain patients effectively using opioids if need be to allow patients to be as pain free as possible and live a halfway normal life.
Regulators MUST stop interfering with the treatment of real law abiding chronic pain patients and focus on the criminals that are breaking all the rules.
Limiting pills to a chronic pain patient that has already signed a pain contract with a pain management specialist is ridiculous! I am already being tracked in the state database, and my Dr is already being threatened with losing their license.
AGAIN… GO AFTER THE CRIMINALS!!!! NOT THE LAW ABIDING CHRONIC PAIN PATIENTS AND THEIR DR.S!!!

Mark W Ryan

I am a 59 year old chronic pain patient living in Iowa having been through 10 back surgeries, hundreds of injections and procedures over the last 20 plus years. I have been to pain clinics in Mayo, MN, University of IA, and countless additional pain clinics and surgeons within 250 miles of my home in search of pain relief. I recently started seeing the 6th Pain Dr in 4 years because of the scare tactics imposed on each of them for treating me with opioids. All of the Dr.s agree that given my medical condition and history opioid therapy is the proper primary approach that I need for pain relief. I require a high dose to relieve my pain. Since the opioid scare has been driving a high degree of oversight every single pain Dr that I have gone to in the last 4 years has either said that they could no longer provide opioids to me and referred me on to other pain clinics, or actually quit their Pain Clinic practices rather than risk losing their medical licenses. Since most Pain Dr.s are practicing Anesthesiologists they do have another means of making a living. The clinic that I am now visiting is a 3 hour drive from my home, which for a chronic pain patient is more like 4 hours since I need to take so many stretch breaks to make it work. If this pain clinic gets closed down I will have ZERO remaining options for legal pain relief. I cannot fathom life without pain control. I will be forced to buy drugs from the street, or there is the ultimate very final solution which I am prepared to execute.
While I understand that there are people out there that abuse legal opioid medications like I need and use for pain relief, the majority of the opioid epidemic is being blamed on them. It seems that all types of opioids have been folded into one category rather than separating out the deaths associated with each type of opioid. It has been FAR too easy for regulators to take the quick and easy route of just limiting legal medications for people like me who depend on them for relief and threatening Pain Dr.s with losing their licenses rather than taking the time to go after the sales and use of illegal opioid products. I can’t blame the Pain Dr.s for protecting their license to feed their families. However, I find it highly frustrating that politicians and regulators with little to no medical expertise do not take the needs of people with real medical issues into consideration when they impose ridiculous restrictions and threats just so they can

Lora Romney

I am a chronic pain patient of 7 years. I have trigeminal neuralgia, otherwise known as the “suicide disease”. My pain presents as severe burning on the sinus regions of my face. It never goes away. I have tried numerous medications, procedures (including neurosurgery and a stimulator implant in my face), infusions, and alternative medicine (chiropractic and acupuncture). Nothing has touched my pain other than opioids. My doctor prescribed me a very low dose and would not go higher, despite my inadequate ability to bring my pain to a level where I could function.

In my attempt to find pain control I came across Kratom. To my surprise, this plant supplement helped control my daily pain! I still experience many severe flares per month where not much helps, but my quality of life has drastically improved with the use of this plant. I was able to cut down my opioid use to one per day.

I was honest with my doctor and told her that I am using Kratom. Even though it is legal in my state, she told me that I had to choose between Kratom or my opioids. I explained how that I need an opioid during my severe flares, but she refused to fill my prescription, even for an emergency supply of a few pills per month. So instead of praising me for cutting down my opioid use, I was punished.

I chose Kratom, since I am able to dose 4 times per day (versus 2x per day with my allowed opioids). I have my life back again! Now the FDA is trying to make Kratom Schedule 1. If this happens I will need to revert back to an insufficient amount of opioids, and live in fear that even these could be taken away. Without this pain control I would be suicidal. The constant pain is to bad to function at all.

Pain patients are being overlooked and treated as addicts, when instead all that we are doing is trying to function in life. I have long since given up on the idea that I will be out of pain someday, but I will never give up on pursuing something that will allow me to be a mother, an employee (even though I can only physically work at home), and a contributing member of society.

Please give pain patients a voice. Don’t take away our medication! Give us plant medicine options like kratom and cannabis.

Sharon

10 years ago I almost died from the pain I had suffered for about 1 year and had progressively gotten worse. I was in the hospital for 10 months and when I was discharged I received a Catheter which was attached to my spine/programmable Morphine Pump (forgot the name). I used this method along with break through opiates for 13 yrs at which time I was no longer capable of carrying the pump and had to switch to oral maint. meds. I do know from the experience that I would rather die than go through what I had to go through for almost 2 years,

I have Atypical Trigeminal Neuralgia. I have tried every non-drug method to try and relieve my pain. I have tried nerve medication, had a mvd and tried Cyberknife. Even though I am in constant pain everyday I go to work and try to do as much as I can with my family. Most of the time this means I miss out on a lot of family stuff so I can rest on the weekends so I can go to work for the week. I carry the health insurance in my family. This past time I tried to have my Nucynta ER filled my prescription insurance gave my pharmacy a very difficult time to have it filled. In fact they denied it and this denial was done by a family doctor somewhere I don’t know. Did he talk to me? No! Did he ever see me? No! I’m sorry do you even know what Atypical Trigeminal Neuralgia is? Does he know that is one of the worst pain causing problem that is worse than giving birth!!! I am not a drug abuser. I am a person who depends on this medicine so I can be a productive person in society! I don’t want to need any medication! I would gladly get rid off all of my medication if you can cure my problem. Otherwise leave me and my doctor and my pharmacist alone!!!
This is my comment to US Dept of Health

FormerPatriot

At least someone is giving us a voice, but now it looks (at least to me) like our efforts may be getting too spread out…there is the FDA hearing, the HHL hearing, the Teri Lewis survey, plus several facebook advocacy groups and rallies…it is getting quite difficult for someone in chronic pain to keep up, diluting our efforts so that anyone not well-informed on this issue may think there are not that many of us, or that the dockets are of little importance to those in pain. Not sure what the solution is except this. If you are in pain and ready to fight, don’t ever stop until this nightmare ends for ALL of us!! No matter what you have done so far, there is always one more thing you can do!!

Cindy R

I am a bit concerned about the lack of anonymity. Putting my full name on a searchable, public database and saying, “I use opioid because nothing else works” seems risky

Sheila Toomey

I can’t submit my comment. Under my comment, it says, “You can’t leave this field blank” but it’s not blank, it’s several paragraphs long. I had the same problem with the survey monkey survey telling me that a populated field was blank. My comment isn’t too long, it says I have over 3k characters left. Every field is populated, including my personal info.
What am I doing wrong?

Susan L.

I went to the site linked; currently, it says that there are “0 comments”. Really?

Mine: I am glad to see an effort being put forth with this new task force. Ordinary chronic pain patients like myself (and their treating physicians!) are experiencing severe stress due to the fear of losing their medications that help them be more functional in their daily lives and some patients have even already lost those medications. Doctors are leaving the pain management practice because of the fear of being brought down by the DEA and even going to jail for prescribing opioids! This has gone way too far. The “opioid crisis” has nothing to do with pain patients taking their prescriptions as prescribed by physicians who know what they are doing. It is a heroin and fentanyl crisis, not a prescription crisis. Most chronic pain patients like myself have already tried “non-opioid therapies” and they failed, hence we rely on opioid therapy! I have tried every conventional and non-conventional treatment out there, even going as far as having a peripheral nerve stimulator implanted for my face and head (which at the time was very controversial although more common now). I suffer from many painful ailments, the most painful of which is named Trigeminal Neuralgia. This is nicknamed the suicide disease and is known in the medical field as one of the most painful conditions known to mankind. I also suffer from CRPS and lupus. Pain medication is the only treatment that helps me to be able to function in my day to day life. Without treatment I become basically bed bound and I have two children to care for, one only 4 years old. My children cannot fend for themselves as I lie miserably in bed unable to do normal things a mother should be able to do for them while my husband is out working to support us. No amount of exercise, yoga and meditating will relieve the severe pain associated with the conditions that patients in the chronic pain community live with. Will these therapies help? Possibly. I have tried all and while they do help to boost my mood they do nothing for my physical pain. I hope this meeting is beneficial for the chronic pain patient community. Please consider us patients stuck in the middle of the debate. Also, please keep in mind the numbers have been terribly skewed especially in media reports as far as addiction that begins with treatment prescribed to patients with real pain. People who have not had previous addiction issues prescribed pain medications have a 1-5% chance of addiction with 1% being the most accurate

Rich Reifsnyder

Rich R. Hello Miss Cindy Steinberg,I also completed the survey.From A to Z.My whole medical condition and my feelings about the whole issue.The one issue that struck a nerve was Dr.Jane Babin,PHD,Molecular Biologist asked Head Official From The CDC Dr.Dowell some technical questions,one was.When a medical examiner checks the deceased for drugs,what other drugs are checked for beside Opiod Medication?One week later Dr.Dowell “Head Official From CDC”answered “At This Time There Isn’t A Definitive Answer Because Of Unavailable Data”.Dr.Jane Babin,like the millions of CPP,S knew since 2016,most of all the OD Deaths were caused by illegal Heroin Laced With Fentanyl or Black Market Pills Laced With Fentanyl.Very surprising and disgusting the CDC threw all kinds of numbers around on the OD Deaths but now Dr.Dowell can’t answer because Of Unavailable Data.Fraud and Liars from the top to the bottom for Self Interest.$$$$$$$$

Suzanne

Resist:

You use to see me take my pain meds and wonder if I was addicted. I was taking my pain meds and wondering how I will function if they are taken from me. And now they are being removed. I didn’t get high, I got normal. I took those meds to feel as good as you feel when you have a bad cold. Stop the opiate epidemic false narrative and quit punishing my pain! I have become housebound within the last 8 months because of politicians who say I should take an aspirin and tough it out. Ask Rand Paul if that’s what he did after being attacked. Imagine having his pain everyday for 17 years and getting enough relief to get out of bed 50% of the time, only to have that medicine removed and then becoming non-functional and wanting to die. Sincerely, Suzanne

I submitted a comment to the regulations.gov site an hour ago. I’ve suffered from diabetic neuropathy and severe neuropathic pain related to it for about 12 years. Being disabled meant that I had a lot of time to think about how life could go on and how I would adapt. It made it possible to pick up my love of writing and sharing again too. I still write quite a bit on my blog on Google Plus, but have been very ill during the last six months and so have not written very much there, but want to as my strength and stamina improves. I don’t know what I would have done had I not found a wonderful, helpful knowledgeable team of physicians, nurse practitioners, nurses, physical therapists, and psychologists to help me. I am very appreciative of your calling this to our attention. Julie, thank you so much for your thoughts. I feel much the same. I think living near a large area like Minneapolis/St. Paul Minnesota and its excellent health care and hospitals and specialist has helped me a great deal. I know that people in more rural areas are separated by distance, time, and other constraints from getting the treatment they need. Barbara, I hope to be able to find your comment. Thank you for all the work and thought you put into it.

Here’s My Start:

Thank you for considering pain management and how severe unrelenting pain might be best managed too. It has not been an easy for me over the last twelve years to manage the severe burning pain I have experienced from nerve damage from high levels of blood glucose due to diabetes. (neuropathic pain) There are many thousands like me. I don’t know what I would have done had I not been able to become a patient at our Fairview/University Hospital Pain Management Center. Now it is called Fairview Pain Management Center. The terrible burning pain in my arms, feet, hands, and legs as well as my shoulders and upper chest was so devastating that I actually considered suicide. I had decided that I did not want to live anymore. Fortunately in 2008, my family doctor gave me a referral to the University of Minnesota Pain Center for an in-depth pain evaluation. That appointment took about three hours and I told the doctors and nurses the story of my intractable pain from nerve damage and how I was having a more and more difficult time at another pain center that treated back injuries and chronic pain from limbs, joints, and the bones in the body. It had not worked for me . [I wrote of a Univ Pain Prog]

Rhonda Posey

I suffer from Adhesive Arachnoiditis, a debilitating incurable disease of the spinal cord. AA is inflammation of 2 of 3 membranes that cover and protect the brain and spinal cord and nerve roots, the dura and arachnoid. The arachnoid contains cerebrospinal fluid which becomes obstructed, unable to filter out any invasion, responds with inflammation and follows with chronic life-lasting phase of scarring. As a result abnormal adhesions of nerve roots occur, significantly altering the function of nerves occurs causing a wide variety of neurological deficits, severe chronic neuropathic pain, bizarre symptoms and intractable pain.
The cruel disease of Arachnoiditis leaves nothing untouched in those who suffer. To say it merely disrupts lives is a gross understatement.
What is just as cruel and inhumane is the 90 mme set forth in the CDC Guidelines. This artbitary number does not take into consideration that one size does not fit all. Patients with genetic abnormalities absorb opioids differently. Just as ludicrous as to assume that every woman is a size four just saying so does not make it reality. As are the CDC Guidelines as they are written.
As Senators are tripping over themselves with legislation to combat the opioid epidemic people are suffering and dying. More and more patients are being tapered against their will from dosages they have been stable on for years or decades. Dosages that alleviate tortuous suffering, promote patient functioning and improve quality of life. Our most basic of human rights is violated as effective pain relief is held from us. Patients are held hostage by interventional procedures before opioids are prescribed when these procedures carry significant risks, adhesive arachnoiditis among them. Physcians are leaving pain management in droves in fear of retribution from the DEA. Sadly, many people see no way out of a life riddled with unrelenting and unforgiving pain, a life sentenced to suffer in a bed bound state, that they choose suicide as their only hope to make the pain end.
This avoidable agony must begin with a top to bottom rewrite of the CDC Guidelines. This time around pain patients should be invited to the table. Afterall, we are vested stakeholders and have the most to lose, or gain.

As a person living with chronic pain due to nerve damage(been through Every type of non-opiad pain management) and a sister to an MS patient with severe exacerbation episodes, I could not have said this better than the previous comment so I will just say: WELL SAID AND AGREED!

Julia Heath

Here was my post: Hello – I’m very grateful for this new task force, however changes needed to have occurred a year ago. I believe a very important point that gets overlooked by committees such as these is this: those of us who take opioid pain medicines to manage our chronic pain do so because other non – opioid therapies have failed. Please believe that most of us have been run through the medical – model ringer first before our Healthcare practitioner decided pain medications were the appropriate choice for controlling our pain. In many instances, those therapies made our pain worse, but in order to exhaust all other treatment possibilities we endure them. Therefore, to get to the point where our pain is FINALLY receiving a modicum of control on opioid pain medications, and then have that one thing that worked be pulled out because illicit drugs (NOT our medication) are causing abuse and overdose deaths is… ILLOGICAL! And who is paying the ultimate price? The drug cartels? Drug dealers? No! The average pain patient whose only crime was they had a painful medical condition which responded well to pain medications – we are the ones paying for it all. And the price is so horrific, I promise the average healthy citizen would be tearing down the White House to make sure the neither they, nor their family or friends, would ever be subjected to pay such a price. The challenge is that we are not the “healthy”… We are the broken and the weak. And for it, we have been exploited, and labeled, and now all but thrown away. WE MATTER! We are your husbands, wives, children, mothers, fathers, grandparents, siblings, uncles, aunts, cousins… We are people who desire to function and work and take care of those who rely on us and, on occasion, enjoy life. We are you, just with broken and painful bodies. Please let this being your driving motivation – do not do less for us than you would for yourself or the one you love most in the world. Put yourselves in our shoes, for one day you may have to wear them…

You don’t have enough room for my comment to the survey, but I did leave all my contact information on the survey and the site.