The Chronic Pain Community Talking with the Surgeon General

The Chronic Pain Community Talking with the Surgeon General

When we saw a Twitter conversation about chronic pain being led by U.S. Surgeon General VADM Jerome M. Adams earlier this month, we thought it was worth bringing to a wider audience.

So we published a story and promised our readers if they wanted to communicate directly with the Surgeon General they could send an email and we would forward it to Dr. Adams.

We receive 19 very thoughtful responses—many supportive of the moderate approach the Surgeon General was promoting and others who were critical of the federal government generally.

We consolidated them into a document that we sent to Dr. Adams via his media office on Monday afternoon.

(To read the entire responses submitted by patients, click here)

This is the cover note we sent the Surgeon General:

Dr. Adams—I read with interest your Twitter conversation regarding chronic pain last week. I published a story that captured your tweets and then asked our readers—who are chronic pain patients and providers—for any comments they might have. I invite you to read 50+ comments readers posted at the end of the story.

http://nationalpainreport.com/lets-reset-the-discussion-on-pain-management-and-opioid-misuse-8840531.html

We also told our readers if they wanted to contact you directly, we would be happy to forward those notes. I received 19 heartfelt emails to send to you over the weekend and have pasted them to this note with email addresses that the folks left. I did not edit any of these, what you see is what they wrote as they wrote it over the past three days.

I’ll leave it to you to take it from here.

I don’t position myself by any means as a spokesman for the community but I do believe that having this conversation with a group that feels like it has been collateral damage in the opioid war is important—and urge you to figure out how to keep that conversation productive for those who suffer from chronic pain—many of whom use opioid therapy to simply live their lives.

Let me know if you wish to discuss further.

Best Wishes,

Ed Coghlan

National Pain Report

We will let you know if we hear back from him.

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Authored by: Ed Coghlan

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LisaMp

Today I decided it was time for me to stop the abuse I felt from my PCP. This is the letter I wrote to him, with much more respect than he or any other doctor has shown me in the last 2 and 1/2 years.

Dear Dr…(name left out),
It is with deep regret that I write to inform you that, due to the fact that I believe, after 1 year, I do not feel we have made much progress. 1 year should be plenty of time for a doctor and patient to develop a bond, trust, and at least a good working relationship. I should be able to talk to you about anything and I should not be afraid to tell you something is causing me pain. I find myself overwhelmed with a feeling of fear when I have an upcoming appointment with you. I have never felt this way with any other doctor I have ever had.
For these reasons, I feel it would be best for our association to be terminated and for me to move on. I wish you nothing but the best and pray for a better future for both of us.
Sincerely and Regrettably,
My name
I am hoping this way of firing my doctor will prevent him from black balling me as I live in a small rural town. I am a CPP with scoliosis, stenosis, DDD, herniated and ruptured discs. I have been told by an orthopod there is nothing that can be done. I am right here with all of you and pray that someday soon, our cries will be heard and acted on in a positive way.
Prayers for Us All and for Those Making These Decisions

Gail Honadle

As a multiple Autoimmune patient I reject a lot of medications, react to chemicals, food dyes, certain foods, and smells. They make me very sick. I need a Hypoallergenic Denture with NO Red Food Dye. Ever heard on one? There are 12+ Million FMS patients and 100 Autoimmunes known. There has to be a need for them. I can’t be the only one reacting to a new lower denture.

Chris Ward

We did someone that’s not hurting as bad as me because I can’t do it or I would to be a advocate for pain patients .SET up donation campaign to run against these dumb people who don’t understand what where going threw! I pray someone that is commented to the task a carry it out.I will help much as I can reach me at wardchris724@gmail.com.

Lisa Hess

I did send a direct email to the SG and, of course, have not heard back. Twenty three years in chronic pain that started with my cervical spine that eventually rendered me disabled after my third surgery. I worked through the pain for the first 10 years and two spine surgeries, but after the third, my body rejected the rods that were placed in my neck. My body rejected the cadaver bone that was placed in my neck from surgery #2 which is what caused surgery #3. Fibromyalgia formed immediately after that. In 2011, I woke up to fire in my lumbar spine and couldn’t walk because of the pain. After 25 failed procedures, a failed spinal cord stimulator, and two more spine surgeries for the stimulator placement and removal. Late Stage Lyme Disease has destroyed the rest of my spine, my bones and my joints by giving me OA, RA and five more Auto Immune Diseases that cause chronic pain. My PM doctor is now fearing for his license. The state has sent letters to him. He once told me that he went into Pain Management to help people get out of pain. Now he has so many patients because he won’t close his doors, he’s becoming overwhelmed and his care is beginning to diminish. I think each Government official should place their hands inside a car door and slam that door on them and not let the pressure off of those hands for an hour. The pain becomes unbearable for them so the door is lifted off their hands. The pain does not seize. Their hands are throbbing. Go to the Emergency Room. X-rays show that eight out of ten fingers are broken and they are in excruciating pain. Both hands are placed in casts. They are sent home without anything for the pain and are told to take Tylenol. They scream from the pain, but no one hears their screams. Their pain eventually ends, but for a short time they will feel what we feel when horrific pain does not let up. The only way they will understand is to live the life we live every day.

Patricia Reynolds

Hello, I am a 49 year old woman who has intractable chronic pain from 18 years of domestic violence. I have been seeing the same pain doctor for 11 years.
Two months ago, the state of SC raided his office and arrested him for doing his job. The allegations are ridiculous. Since then my husband and I who were both patients, have been forced off our medicine and suffering. Let me say the withdrawal itself was horrendous. My husband has Parkinson’s disease and has seizures and I am his caretaker. My abuse I endured was from my ex husband. I cannot deal with this pain and eating Ibuprofen Like crazy is Not helping! I started out on that.
I’m absolutely furious that I have no quality of life at all. I can’t play with my grandchildren, I’m always in a horrible mood and now my manic depression Is going rampid.
We’re waiting on some new pain management doctor to look at our records and decide whether to even give us the decency of being a patient. Which can take up to 3 more months before we might get an appointment! What happened to the hypocritical oath? We have to wait around and hope this doctor will finally get around to a decision? This is utter bull. It was enough circus hoops we were jumping through to stay on and keep our medicine, til we finally got with our doctor, now we have to beg for treatment? This needs to end now. Please. Our doctor did nothing wrong, he is a victim also in this modern day witch hunt. I have spoken to Dr. Thomas Kline in Raleigh NC about this. I encourage you to contact him. He is compiling a list with other doctors about this witch hunt the government is on. I feel that this is not the government caring about people at all it’s all a monetary gain for them as doctors assets are being seized and kept for the governments pockets. That all this comes down to IMO as well as Dr. Thomas Kline.

Cynthia Cormany

I have a disease called RSD and it’s one of the most painful diseases you can have. Without being able to have pain medication I would not be able to live. It’s full body and stomach and I get blisters and sores all over. Now that my kids are all grown ups without the ability to have pain medication (opiates) I would commit suicide. So please keep fighting for our rights to be on pain medication. My disease is considered one of the most painful diseases there is!!

Shirley Siegfried

Just tried a new pain management today was offer epidermal injections she says good luck trying to find a doctor to give you pain medication two doctors already told me injections don’t help my case so now I suffer more what a waste of time why am I paying health insurance and can’t get treated it’s sickening no wonder why so many are on the street looking for pain relief I even if I would get a injections it still wouldn’t help ra osteoporosis or achylosing spondylitis it’s all about the money I sure they get big bucks off these different injections can’t believe America is torturing their own people

Becky Jo Thompson

Darn it. Wish I would have known about this before. My dad suffered from diabetic neuropathy for years before he passed away in March of this year. The VA treated every condition he had EXCEPT the pain. They treated the diabetes, the COPD, the heart failure, the nebulizer, the pulmonary hypertension, the sleep apnea and the dandruff. But God forbid we give him anything except Gabepentin for pain! The nights he stayed awake on the computer, or watching Netflix while my stepmother slept, while he slept the days away when we would try to visit. He tried to drink cherry juice. He tried compression stockings. He tried EVERYTHING. But he got no relief. Because the VA couldn’t give him pain meds because of the stigma attached to it…
Or my mother. She has cervical spinal stenosis. She’s a caregiver for other senior citizens, believe that one? Which old person wears the life alert in that situation? She can’t stand, walk or drive for long distances. She can’t lift heavy things.
Take me, for instance! I’m the lucky one in the family. I’ve had a pain management doctor for most of my adult life. I’ve had access to narcotics. With pain contracts, never violated, never turned up dirty, always cooperated. But if you leave the state, even for a few months to try a new life say from Wisconsin to Iowa, best of luck! You’re done for 10 years. Easily. New state won’t touch you even with records, and when you move back, good luck trying to find a pain management doctor that doesn’t run you through $10,000-30,000 worth of tests just to tell you “Nope, now we will do physical therapy, injections, nerve blocks and other horrible things for the next two years!”
Why is it there is so much stigma? So much difficulty in trying to get medications when you have years of tests in your hand already? My parents should not have to suffer. I should not have to have gone to 3 doctors, 18 months of tests and treatments with each one, each time, for the same results only to be told at the end, “No.”

Michelle Alvarez

Mr. Coghlan, your cover letter was very well written and concise. Thank you. I greatly appreciate your time and help regarding this issue. Keep up the good work.
From a pain patient.

Thomas Wayne Kidd

Thank you very much Mr. Ed Coghlan. I to would like the write a commentary, if I can get if done, as I suffer from chronic pain and things just don’t work like they used to. Thanks again, you are appreciated much.

Traciee

Hi…I have lived with chronic pain before I ever knew about pain management,…and was hurt at work on several occassions, “fixed” and went back…The grand finale left me with a reconstruction surgery and being in so pain I thought I was losing my mind…CRPS 2 the flight or fight response nerve disorder is unbearable and unexplainable to alot of people…and the meds…at one time it was 13 differant ones…I took them like I was suppose to and became obcessed in counting them as my nearest Dr was over 70 miles away…I cannot explain how my life has changed from planning to what I wanted to do in 5 years…to just getting thru sun up to sun down because of I dont know if I will have my meds…I have done everything asked of my Dr and because of new regulations I cannot have my meds anymore was “cut off” 5-18 with no warning…Just because certain few abuse this does not we all do it…there is no black white color here every one is differant…each case is not the same…Am I going to get better? NO Meds are in my life have been since 04…changed with some…We as a govern society need to do better in order to get better. Bottom line. Live in a house with a chronic pain patient , walk that mile with them you will see…talk with their spouses or exs and their kids. Life dosent just change pharmacys it changes EVERYTHING…Wake up.
Sorry if I offended anyone…

Douglas Hill

I still don’t understand why women, with the approval and encouragement of our federal government, are allowed to force death onto unborn kids and I cannot make any decision to alleviate debilitating pain for my body? What is so sacrosanct about someone over the age of, let’s say 65, not being allowed to make personal decisions about their own healthcare?

Jesse

My story mirrors in lots of ways what everyone here is going through. 25 years of severe back pain. Was on meds and decided 4 years ago to having a spinal fusion, this surgery also led to a carioembolic stroke. I lost everything,my credit score my job and things I owned and the back surgery failed. The lower part of the fusion is pressing on a nerve causing servers sciatica,recent mri showing severe stenosis, they want to do another fusion. I am in constant agony and all I hear from the new pain management doctors is they only give meds to cancer patients and dying people. My pain management doctor I was seeing retired. I am as most of you are not living, I’m existing. I get zero joy out of life.

I think of suicide but think of the pain it would cause my family.

Please tell us when we will get some real help. I too have considered buy pain meds off the streets for some relief

Ree luc

I am a chronic pain patient w multiple diseases through no fault of our own we have rare diseases that took our lives now I can’t work I can barely wash myself on bad days with flareups and I was being treated by a rheumatologist who was very compassionate he had me on a fentanyl patch and Percocet and I have to say after suffering two years while being diagnosed and going through testing I can tell you I was able to get out of bed without crying and clean do laundry even cook through a whole meal and this is with herniated disc,s that need surgery, now my rheumatologist said he’s getting out of the practice due to DEA fear and all the paperwork that’s involved now it’s very difficult for them to treat patients even though he’s done so for 50 years and he’s always stuck by the law he said what the Dea is doing and the politicians they can no longer do their job !!! so through no fault of his own he said he has to drop us, so anyway the point being now pain management doctors I’ve been to three and each one is too afraid to prescribe yet they’re pushing injections that don’t work and I know because I’ve tried everything before going to Percocet. I was anti-opioid completely working in the healthcare field even after five surgeries I never got addicted to Percocets it was not until I got my fibromyalgia neuropathy and intractable pain that I had no choice we are being denied treatment humane treatment ,we have the basic human rights to live and die with dignity and yet our politicians are playing bad Dr.
denying our care and you are certainly a healthy man I can tell from your response and I understand what you’re saying but until you have these diseases you just won’t comprehend the severity of the suffering you go through
we need people to stand up and do the right thing ! this is supposed to be a humane society
we fight for everybody’s rights but We are being abandoned !! ?
the sick the elderly , our vets ! people with disease and even postop Patients

ElizabethR

Can someone please let me know what email address was used to contact the Surgeon General? The only one I can find is under “invitations to speak at events”. I simply wish to send an email in support of better pain management for all of us.

Granny

We need change..in the direction of private relationships bbetween patients and their doctors, and prescribed medicones at limits that meet the doctor’s best judgement for each patient. I have had RSD for 10 yeara, and long ago hit the CDC’s magic MME limit. Even though the pain kept rising, no other relief was given. Earlier this year, due to being very wobbly from the RSD (i walk with a cane), ii fell and broke my left ankle. Excruciating extra pain but guess what? 0 extra pain relief. Iit made it reallly clear to me how llittle i matter, how little my pain matters. Totallly inhu.ane, and totally common in this era.

cindy carson

I am a senior woman and have been on disability for 20 years. I have severe degenerative disc disease of the neck and back combined with scoliosis spondylosis, arthritis , and such narrowing of the spinal canal that the pain has become intolerable. I have tried so many alternative treatments to no avail, injections, chiropractic , acupuncture, physical and mental therapy, massage, tens units, various heat and cold therapies and more, I’m sure. I also suffer from severe clinical depression and have tried cognitive behavioral, therapy along with many other new age techniques. I am not considered a candidate for surgery. I was getting by with my primary care doctor of 20 years until January when she decided not to prescribe pain medication any longer. Since then I have been to multiple pain management doctors and clinics and have found no one to compassionately address my issues. I have been cut back on my narcotic medication by 2/3 rd,s and am at the point of immobility. Although there has been retraction by the CDC and the AMA and other doctors and organizations have addressed this inhumane treatment of chronic pain patients, it has had no effect on my prescribing doctors. Furthermore, I am being mentally abused on my visits. (I’m not allowed to speak,any new documentation or literature that I bring in to share is ignored and discarded.) I live alone and have no one to assist me. At this point, I don’t know what to do. I live in intractable pain 24/7. My previous doctor had me on an acceptable dosage, one that I could do basic functioning. Now I’m all but bed ridden. When I get to the couch I spend my time advocating for the chronic pain community. I have e-mailed and called so many in the government and other agencies. It seems that my plight is falling on deaf ears. I know I probably don’t have much time left on this earth but it would be such a comfort to know that I will not have to live with this excruciating pain until my demise. Any help would be appreciated.

Cindy

To edit my last post —

I thought that contacting the Surgeon Gen directly meant that — directly from me to him — and not indirectly via NPR.
and I will do that when I feel up to it.

Laurie

Ed,
I hope you hear back from him. but the pogrom on CCPs is far from over. I think they mean to attack healthcare at it’s roots: pain alleviation.
It seems a more subtle way of undermining the expansion of Medicaid which the right has been pushing since it passed.
I really think that is the backstory of this whole sorry mess. Nothing for the people except torture of one form or another.

Trump would override him anyway.
I guess we have to keep trying however. Now, I’m off to see what they’re going to try with me in pain management.
Wish me luck!

Cindy

Contacting the surgeon general is on my to-do list.
I’ll contact him directly.

Debra Saxon

I live with chronic pain and have for ov we 15 years. In the last year I have had to fight to stay on my medicine. I’m going to be losing the fight soon because of this country and to myself and those like me it’s so wrong. We all don’t miss use them, but we have to pay for the ones that do. Right now I set here not knowing where and what I’m going to do next. I’m disabled because of health. I work until I was ask to step down from my job in 2013. And my government want let me have what I need to live my life in peace until I die. Medicine i take correctly I may add. There taking my rights from me. I do know what drugs can do in the wrong hands, but not every hand is wrong.

Denabeana

This letter has left me with tears of both sadness for all of those suffering and for hope that someone in power will hear us and help us. Its refreshing to know I am not just a crazy with my single opinion and that I am not making up facts and statistics nor a drug seeking, doctor shopping, addict. I am a person. I am in pain from accident that has left my body broken for which I have been through the gambit of treatment options with only Narcotic Painkillers the only option that has helped me provide for my family, provide my own self care, drive my car, grocery shop, walk my dog. All these things healthy people take for granted are not possible for people suffering like me. I am a special case as my DNA structure blocks certain narcotic medications from working appropriately. Plus I also take antidepressants that also affect my medication metabolism. I’ve brought the doctors my Scientific Proofs and they all dismiss me as a difficult patient who tries to play doctor. They dont want to hear that they are possibly wrong about my best treatment options. They keep pushing the idea that every patient is different and responds differently but when you bring them actual proofs of how different you are they choose to ignore and dismiss you, they Red Flag you and you are left with no treatment.
The government has perpetuated this whole fake opioid crisis, has allowed parents (of active addicts who choose to stick a needle in their arm and choose to die) to lead this war. Now they are perpetuating a whole new problem. Look in the 15 letters alone that people are being FORCED to get the medicines they NEED to get through their day by illegal methods and if bad enough are going to completely illegal substances to get relief. Their concern about a opioid crisis has led to and created a whole new opioid epidemic possibly a pandemic. Then what…???…

Mad

I was injured in a car accident at the age of 25 yrs old my neck was almost broken 4 months later I had 17 pulmanary embolisms almost died from those no pain meds were given to me then I was in a awful car wreck that almost broke my back I went to physical therapy was given Robaxin that did not help so went to a neurosurgeon that fused my back well he did it wrong and I was still hurting he gave me Percocet 1 6 times a day this was 1999 they helped for a while 10 yrs later I’m still in severe pain I go to a pain management Dr and I am highly allergic to Steriods of all kinds I go into cardiac arrest so this pain clinic injected with a numbing med and found a problem a nerve was being cut into 3 pieces so I end up having that fusion removed and replaced still to this day I am in pain I was on 20 mg Percocet 4 times a day and some nerve med then I was hit head on by a drunk driver and had to have a neck fusion which was a success but my lower back still kills me I have degenerated disc disease torn siactic nerve after 5 surgerys on it they could never get it to regenerate I have tried to kill myself over the severe pain a go 528 miles round trip to a pain clinic that was helping me by burning nerves and pain meds now they are lowering my meds to 3 Hydrcodone 10 mg a day when I was on 5 a day then My wonderful Dr who invented nerve burnings around all the hard ware I have in my back was fired for not stopping meds on his patients he was the only Dr that gave me any relief so what do I do now they have me down to 2 10mgs of Hydrocodone now I hurt and cry constantly what should I do now

Ed Coghlan, I love your articles on Chronic Pain on
nationalpainreport.com I just read the messages to the Surgeon General from the people in such pain, and the result of the loss of Opioid treatment. The whole letter was great. So many of us are going through the same thing and we don’t have an opportunity to voice our rants, injustices, injuries, dilemmas, etc., where anyone else cares. But thank you for providing us with the platform to do that. Between you and Mr. Red Lawhon, you two are the best. Keep up the great work and I hope you’re not in pain!
Brenda Price

Glen

The suggestion of a televised report is good, but I don’t think they would do it even if he asked. We also have to remember TV stations do not give away “air time”. I have found Primary Care Providers cut prescriptions without really reviewing records. Lowering prescription “stats” comes first. The Surgeon General can instruct them to do so but has no way of knowing if they do. Our letters to the President never get there and he would have to approve a public statement by any of his cabinet. He might just Fire the Surgeon General.

Tim

Ed-superb effort-have asked the Spouse of a Viet Vet with PTSD to write to you-from her home in GA while I am trying to help her from Michigan!
God Bless You for carrying our torch!!