People in Pain Speak Out
HHS Pain Task Force Holds Its Inaugural Meeting
The U.S. Department of Health and Human Services (HHS) Pain Task Force held its inaugural meeting in May 2018 that included a public comment period. Members of the public had also been invited to submit their comments about chronic pain online, and the site received 2,530 posts.
On June 9, the Food and Drug Administration (FDA) held a public hearing on chronic pain. The FDA is inviting chronic pain patients and other members of the public to post their comments online through September 10, 2018.
It seems to be a good sign that government agencies are now open to hearing the stories of chronic pain patients. People like Rebecca Sidden, who was one of a number of distinguished speakers at the HHS meeting, may be their own best advocates. As we work to mitigate the opioid crisis, we must recognize the needs of chronic pain patients and provide them the treatment they need.
Rebecca has agreed to share her comments on this blog for the benefit of those who did attend the meeting. Unfortunately, as you will see, Rebecca’s story is not uncommon.
Rebecca Sidden Shares Her Story at HHS Pain Task Force Meeting
Hi, my name is Rebecca Sidden. My story starts as a 22 year old graduate school student diagnosed with a rare condition known as Interstitial Cystitis, which is an auto-immune response in the Bladder Lining that results in constant pain. Along the way in my pain journey, attempts to treat the IC have resulted in complications leading to Pudendal Neuralgia. As a result, I can no longer sit for any extended time and require a special cushion and ice when I do sit. A good pain day for me is usually achieved by resting in a prone position and a medication protocol that includes the responsible use of Opioids.
Over the last 20 years, I have worked with a variety of specialists and attempted pretty much every treatment protocol; physical therapy, yoga, acupuncture, spinal stimulators, TENS, Botox injections, Radio Frequency Ablation and nearly every possible pharmacological solution and only two protocols have proven consistently successful: Pain management using Opioids, and CT Guided Nerve Blocks utilizing steroids. The latter has been losing efficacy over the last decade and in 2014, what is usually a routine procedure went awry resulting in the needle directly hitting the nerve and reversing a decade of positive progress. It was at that point, I finally had to retire from work and focus on my health. I would like to call out that I have a fantastic support system and a wonderful husband that keep me with a sense of humor during all this.
Although we have tried almost every alternative to the Opioids, from Anticonvulsants to SSRIs, we consistently return to a combination of Opioids and Lyrica to successfully manage the pain. A protocol that I have used, with only minimal change, for over a decade. In fact, almost every major change to my medication has been due to new regulations from competing federal agencies. The FDA drives a change, my pain management team adjusts and then the CDC intervenes resulting in another change in which I must endure repeated experimentation before returning to some degree of balance. To make matters worse, now the Insurance Companies and even the Pharmacies try to exert their less informed opinion on my pain management protocol; and now we have politicians with even less knowledge doing the same. The result is a landmine of sometimes conflicting regulations that combined with almost constant harassment by the DEA and State Medical Boards, almost make it impossible to find a pain management provider and when you manage to find someone, you have to submit to contracts and drug testing.
I am not saying that Opioids are the solution because they most definitely are not, but when the alternative is pain similar to that experienced by a second degree burn patient, I will live with the side effects until something comes along that gives me a viable alternative.
As a Social Worker, who served for 15 years as the Executive Director of small Non-profit serving families in crisis, I have seen firsthand the terrible toll that addiction can have on families, but in our rush to address this very real issue, we risk causing more harm than good to people in the Chronic Pain community.
The Hippocratic Oath states that above all else, do no harm…something I think that is missing in our current environment. Thank you for your time and the opportunity to talk to you.
People in Pain Can Make a Difference
It takes courage for people in pain to speak up. However, the rest of the world needs to hear what people in pain are experiencing. Change will not occur without efforts like Rebecca’s. I hope her message will inspire more people to tell their story at similar meetings, write op-eds in local newspapers, create blog posts, and write their Congressmen and Senators. I encourage everyone, whether or not you are in pain, to submit your comments to the FDA docket before September 10. If people in pain speak out, it may make all the difference.
I was also among the public speakers granted three minutes to address the Task Force. My message was unequivocal: the data published by the CDC itself reveal that our public health crisis was not caused and is not being sustained by physicians over-prescribing opioid pain relievers to their patients. When CDC data for opioid overdose death rates per hundred thousand are plotted against data for medical opioid prescriptions per hundred population on a State by State basis, what we get is a splatter pattern with neither trend lines nor any strong correlation. The contribution of medically managed opioids to opioid mortality is so small that it gets lost in the noise. (Data supporting this observation are published in The Crime Report for June 21, 2018.)
I also made the point that under no circumstances can the Task Force accept or legitimate the CDC guidelines on opioid prescription. These guidelines are now widely understood to be founded on anti-opioid biased opinion, weak science and conflated evidence They need to be withdrawn and rewritten from the ground up.
Well the majotity of opioid users are responsible people that have been cursed with extreme pain. Its sad that therebare addicts in the world, but thier has been for iver 1000 years. We must not punish those in pain just because addicts are out thier.
The dea has made it impossible to get treatment and many have turned to self medicating. This is not the solution.
The illogical mistreatment of people in pain prompted by the CDC Guidelines has got to stop. Hundreds of thousands of people who use their medication/opiates responsibly profess with honesty that since the CDC posted their guidelines their lives have been changed for the worse. So many are now relegated to a life of painful misery and mental anguish caused by untreated and under-treated pain, yet the illegal heroin and fentanyl deaths continue to rise. Too many have even killed themselves because of their unbearable pain. What a travesty. The CDC guidelines must be rescinded and re-written just as Dr. Lawhern said.
Tell the TRUTH about the ILLEGAL DRUGS entering our country, cities and neighborhoods causing ever-increasing deaths from illegal drug overdoses. This is an ILLEGAL DRUG EPIDEMIC people!
To the CDC, do justice and save a nation in pain. While you’re at it, press the DEA to do their job and put a stop to the flow of illegal drugs into our country. Additionally, there are thousands of people, young and old, addicted to those illegal drugs who now need support & treatment. Another travesty.
This is all starting to sound a bit like genocide.
Our poor country really needs help!!
I am having more problems with my Federal BCBS ( Blue Cross Blue Shied). The last three months they have denied my meds as I pick them up at the pharmacy. It is administered through CVS. They seem to want a pror authorization but between the pharmacy communicating with me and me doing the same with the doctors office, I have had no less than 4 different reasons why they are denying the opiates. I just finished a drawn out process over my Kadian , getting it finally approved for a year and the next month it was completely denied cutting my dosages in half over night. I called the pharmacy the next day and imy originally submitted prescription went through with no problem. It’s very scary and frustrating.
Like others that have posted comments here, I have chronic pain. I have degenerative disk disease. It started when I was in college and has continued for 40 years. I have tried (or have been subjected to) every modality of treatment available. I have had three major back surgeries with the last one fusing my spine from t-12 to S-1. Now there are 4 additional disk ruptures and there is no surgical solution that would leave me with any flexibility in my back. I have intractable pain and require significant levels of opiates to even be able to function. I have been working with a pain management specialist for over 20 years and through many trials, we had found the best combination of medications that allow me to be active and function like a human being. I still have pain, but it is significantly reduced.
Now with the new guidelines and additional pressures on prescribing doctors, I’m having to move away from a combination that works for me and to eliminate the heart of the treatment (fentanyl) and substitute a much lower level but the more frequent use of short-acting drugs such as hydrocodone.
The doctor reduces the risk of scrutiny of prescribing patterns, but as a chronic pain sufferer, I don’t get relief. I know that pain relief is possible, but in the current environment, I cannot have it.
i’m 63 years old and have a headache all day and night since my early to mid twenties. i have been involved in a few violent car crashes. the first one happened at the age of twenty two. i started self-medicating then w/ analgesics and finally saw a neurologist in the early eighties. i’ve been taking gabapentin since then. i also started on amytryptiline then and then switched to citalopram and cymbalta. i too have never found relief and never will. i can’t take anything otc anymore because i wouldn’t be able to stop. life seems very dark most of the time. i’m going to call another neurologist tomorrow and wait for an appointment. my only saving grace is that i’m retired now and no longer have to pretend to be well
I have several co-existing issues, one of which is CRPS. This country has devolved into a police state. If you read Agenda 21 you will realize what is happening.
After over 10 years on tramadol, a very weak opioid-based medication, which has allowed me to work and have some quality of life, the head doctor of the clinic my APN of over a decade works for cut the fourth dose of my medication regimen.
He literally shamed me for taking “too much” even though I was well within the FDA-recommended maximum, had never shown any signs of abuse or addiction, clean and healthy labs on a yearly basis, etc. Tramadol was only added to my treatment regimen after over four years and thousands of dollars in ineffective treatments was spent.
To compensate for this change, he then wanted me to go cold-turkey off of Effexor XR 150 mg, an anti-depressant I’ve taken for over 15 years, and switch to a high dosage of Cymbalta. After thinking about it, reading the horrific symptoms of discontinuation syndrome associated with stopping an anti-depressant cold turkey and reading many testimonies others had written after they did this, I decided not to.
Later on, after researching, I find out that my insurance company (Cigna) has implemented an incentive program for doctors who sign their “opioid pledge” and cut the number of opioid-based prescriptions they prescribe. What is happening to so many is despicable.
Furthermore, I watched my dad suffer a great deal of pain after he was stripped of the medication that kept him comfortable for over two decades, only to become confined to a wheelchair 24/7 and lose all mobility. His health deteriorated quickly after that.
In Jan. 2015, he was even unable to receive adequate pain relief while hospitalized with sepsis, end-state COPD and many other painful ailments just one week prior to being placed on hospice, three weeks prior to his death until I stepped in. The nurse even admitted the reason for the doctor withholding pain medication to a dying 68 year old completely disabled, chronically-ill man was due to not wanting to “trigger an addiction.”
Our medical care has become cruel and barbaric. Politicians are practicing medicine without the proper license and need to get their noses out of my health care regimen. The people of this country had better wake the hell up or they’ll be the next ones to suffer excruciating pain and unable to do anything about it.
Dear Fellow Pain Sufferers-I left my chronic pain story on the FDA website and it was very easy to do. We must all voice our dissent to stop this Orwellian insanity! John in Texas
i am a 56 yr old female, i had a very active life till 2007 when i was diagnoed with a rare disease with no cure that causes more pain than amy human should be subjected too. I suffered many years before my diagnosis going to countless dr.s spending all our savings.along w/I,C, I have been diagnosed w/pelvic foor, fibromyalgia,migraines,crohnes,ischemia of intestine and corotadynia (not of sheath but of cellular level)and like others I too have gone the route of physical therapy,acupuncture,stem cells,botox,tens unit,ablation. Ive also discovered getting large amounts of testosterone (more than a 200lb man would help me urinate) so every 3 months i am cut for insertion, .i am disabled, For the past 8 yrs a dr has treated me with my only option of opiods.we must drive to where we used to live and even after the long drive i am surely in a flair. i was hospitalized 4times this yr..i dont sit well for long without severity of pain or stand long without pain,as a matter of fact i dont do anything. and the pain is unbareable. the dr.i went &., sold her practice to another dr. they promised to treat me well and keep my under my same regimen..In 8 yrs ive never asked for more ive actually been cut 3 times,made to feel like a criminal like i have done something wrong,With less than a 2 week notice while i was there for something else i was told i would be given 1 weeks worth & sent on my way.inside my heart i was cryint to GOD please take me i cant fight anymore. i didnt want to react in the office because GOD forbid you show signs of an addict… AN ADDICT TAKES DRUGS TO ESCAPE EVERYDAY LIFE WHILE A CHRONICALLY ILL PATIENT TAKES MEDICATION TO HAVE QUALITY OF LIFE. i know its voting yr and govenor Rick Scott has a theme of opiod abuse.i can only pray that he or his lovely wife never should come down with I.C. It states a new pt should not be given more than 7 days ,a new pt, unless deamed medically necessary,,,ARE THERE NO DR.S THAT CARE ENOUGH TO WRITE MEDICALLY NECESSARY.. there will be more deaths from pts in a chronically ill state who cant suffer any longer. to those who suffer with me and beside me…..i am so sorry for our fate. to my wonderful husband who has taken me all over,spent his last penny,and held me so tight,,, my soul is yours for eternity,you are truly an honored man in every way…..