A Loved One Makes the Case for Chronic Pain Patients

A Loved One Makes the Case for Chronic Pain Patients

By Ed Coghlan

You’ll remember our story on Michael Young—the retired Michigan fire fighter—who has been pressing local media in Lansing that covers the “opioid crisis” to include the plight of the chronic patient. Turns out that Michael isn’t the only advocate in his family. His wife Susan recently presented the point of view of the patient from the perspective of a loved one to a panel that included Michigan Congressman Tim Walberg and Lt. Governor Brian Calley. The panel was sponsored by WLNS.

Here are some excerpts from her prepared “testimony”.

I’d like to convey my thoughts on a large group of people that we don’t hear from or we don’t hear about them in the media coverage or political positions and how the CDC Guidelines along with the interpretation and enforcement of said guidelines are hurting these people and destroying their lives and the lives of their families.

The group of people I’m referring to are legitimate Chronic Pain Patients.  These people may have been injured on the job (firefighters, police officers, construction workers) or may have been injured in a car accident.  They have taken all the appropriate steps according to their doctors (i.e.:  surgery (s), rehab, physical therapy, etc.) and have reached the point that prescribed Opiate Therapy is the only thing that works.

When I say it “works” … I mean it allows them to:

  • Keep their jobs and continue to work
  • Take care of their homes
  • Take care of their families
  • Be present & active in their children’s lives
  • Maintain a certain level of “QUALITY of LIFE”

These people use their Opiate Medication responsibly:

  • As prescribed
  • Safeguarded from their children
  • Safeguarded from their children’s friends

The CDC Guidelines for the Opiate usage (reduction) which was released in May 2016, has had a dramatic, negative impact of the legitimate Chronic Pain Patient community.  Their daily dose has been reduced anywhere from 25% – 75% and in many cases withheld entirely.  Their Quality of Life is gone resulting in the loss of their jobs, homes, marriages and in some tragic cases their lives (suicide).

The CDC Guidelines are good in theory to assist Primary Care Physicians and to provide recommendations on steps to take for a new acutely injured patient … NOT for the already legitimate Chronic Pain Patient … and NOT for the Doctors that specialize in Rehabilitation and Pain Management.

So, what should be viewed as “Guidelines” which give doctors that specialize in the treatment and management of pain patients the ability to prescribe appropriately for each individual patient has turned into a mandate of 1 treatment plan for all … regardless of a specific patient and their needs … and regardless of their demonstrated history of responsible opiate usage.

The CDC and Insurance companies are putting pressure on doctors and in many cases threatening doctors if they deviate from the Guidelines (prescribe higher doses of Opiates).  These threats include potential loss of their medical license, or insurance companies not covering the doctors or the patients.  In some cases, even if the doctor stands up to the CDC & Insurance companies … Pharmacies are refusing to fill the legitimate prescriptions.

So, what I’m asking for, is the same amount of airtime and coverage for this group of people to help push back against the CDC/Insurance companies by allowing doctors to prescribe as they see fit.  Please don’t penalize the Chronic Pain Patients … Please tell their story (s) and help them get their lives back!!!  Please do this while you continue to pursue all the good works already discussed tonight.

Thank you for your time.

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Authored by: Ed Coghlan

There are 13 comments for this article
  1. Craig Martin at 10:55 am

    Having come across this article by “googling” Chronic Pain Patients, I’m humbled by Susan Youngs advocacy and by the many achingly sad comments by folks who also live with chronic pain. As both my wife and I are reluctant members of the “pain community”, I have both experienced and witnessed the effects of the “opioid crisis”.
    Shortly after the CDC opioid study was released, my wife’s pain mgmt group began reducing opioid medications across the board, as it were, without regard to patient individuality or complaint. (My wife has battled ankylosing spondylitis almost since birth (she’s now in her late 50’s) and additionally struggles with osteo-arthritis (currently awaiting her 2nd knee replacement). Given that she was not receiving any real care, and having seen 5 “new” PA’s within a 4 month period, she changed to my “pain management” doctor. He was happy to take her on as a patient, and after reviewing her history & condition, wrote scripts for both long-acting and “break-thru” medications. Her “quality of life” improved to an extend not seen in years! However, after being his patient for one month, and immediately after the CDC and DEA “guidelines” were issued, he refused to write any “break-thru” scripts, and informed her that he was going to reduce her long acting meds. We discovered that he had been “visited” by investigators from the local District Attorney’s office, and essentially “threatened” to reduce the med’s he was scripting.
    My own story? Well, 15 years ago I developed excruciating lower back pain. After being “evaluated” by both a surgeon and a pain management doc, I had a laminectomy with fusion (and hardware!) performed. I was a model patient, being discharged after 3 days! 4 and 1/2 months later, the pain returned with a vengeance..For the first 4 years, I visited the ER approx. 14 times (when it became either that or suicide!) Then, finally, I was referred to a pain mgmt doc. Since then, I’ve had 3 “nerve stim” trials (never get the right location, apparently), PT/OT, done meditation, visualization, counseling, had a “pain pump” trial (when I awoke, I was paralyzed on my right side!), and been re-evaluated for surgery several times.
    I’ve been through the “pharmacological merry-go-round” multiple times, and within the past two years wound up with Fentanyl patches (starting at 150mcg/72 hrs) and “break-thru” oxycodone (30mg/8 hrs). I actually had a life, and was happy & able to be a real person! Over the last 6 months, my meds have been reduced by roughly 90%. As of 30 days ago, I have morphine sulfate (30mg/8 hrs) with no break-thru meds. I have already been in the ER once (fortunately, the MD on duty accepted the situation and helped!). Having been lectured to by RN’s, and accused of “drug seeking” over the years, I shutter to imagine what will transpire when (not if) I present at the ER in the future.
    My wife’s pain isn’t in the “catastrophic” nature of mine, but her life is now one of laying on the couch or in bed, and repositioning periodically to lessen the pain. She was a vivacious, active woman (within limits..) but now?
    The pervasiveness of shame that attends chronic pain patients has only been exacerbated by those who feel that “one-size-fits-all” prescribing practices, and the ethical, legal and life-changing sanctions threatening not just pain management practitioners, but all health care professionals.
    I truly wish I could say that there’s “light at the end” of this tunnel, but..
    I truly applaud Susan, and others who are making an attempt to bring some sanity and humaneness to the issue.

  2. Leah at 4:08 am

    Heidi Burke:

    Yes, it’s happening more. People with chronic pain are literally screaming. I saw it coming..more suicides. Don’t you see the big picture? The government wants people to die off sweetie. Because they stole SS money and can’t keep up with disability and SS payments that people paid out of their paychecks all their lives. They supposedly “borrowed” the money. Do you know what the Federal deficit is? Billions of dollars. They can’t keep up.

    They want the old, the sick and the poor to just die off. Think about it. They purposely don’t allow opioids so that people will take the killer dugs on the street. But wait! They put out millions of ads, the pharmaceutical companies, so that you will pay exorbitant prices for drugs that have so many side effects they may kill you. Then, if you cannot get the opioids pharma has allowed your doctors are taking them away. Now, it is certainly an epidemic! They want you to hit the streets. You have read about it or seen it on television. Fentynyl laced and fake pills that kill. They look like the real thing. The pharmaceutical imprints are on the pill. How do you think they did that? Who do you think put that on the streets? Think about the big picture. What are you going to do? Stop taking pharmaceuticals that’s what. The companies are just out to kill you, but they want your money first. Get Botanicals. They work. Meridianbotanicals.com and do some research on Kratom. Specifically google the Kratom bible. Check out http://phytoactive.net/index.php?action=reminder
    There is a plethora of information out there. My blood pressure is down, I have less pain.. almost none, more energy and I’m not depressed! Look us up on Facebook. Join The Kratom Social. What harm could it do? I have read thousands of stories of people throwing out their pharmaceuticals and getting on botanicals and doing much better! I was hit by a retired policeman. Broken. No chronic pain killers. I turned to Kratom. It’s not only relieves pain but depression. It does a lot more than that too. I was taking an antidepressant that raised my blood pressure. I was forced to take blood pressure medication including a diuretic. They did nothing. They made me feel sick. I started taking Kratom and it does everything without pharmaceutical side effects! Kratom has been around for thousands of years. The government doesn’t want you to have it because it would ruin the pharmaceutical companies’ profits, but it’s a leaf related to the coffee bean. So they can’t put it on schedule 1 because it’s not a synthetic drug. It’s not a drug at all. Go read about it. You won’t be sorry.

  3. Heidi Burke at 8:06 am

    I am a disabled/retired Police officer. I was injured in an on the job car accident in 1998 and was diagnosed in 1999 with CRPS/RSDS. My pain management dr. and I have tried almost everything before I was put on opioids. My job and the people I worked with and for all kicked me to the curb. Not once did anybody call to see how I was doing or if I needed anything. Two months after my accident my now ex-husband beat me and one of the things that stand out is he told me to stop lying and wanting sympathy about my pain. That night I realized that I had lost everything that I identified myself with, my job, friends, loved ones and most importantly my identity. Skip to two years out on workmans comp and I received a letter in the mail from my job stating that I was fired because of a statute in the workmans comp law saying that after a year out of work and not being able to work 100% my job could fire me. There is no such thing as light duty where I worked even though someone else was put on it before. Oh yes did I tell you that I was the only female full time officer. I to am in the same situation as everyone else with having my opioids reduced again even though my dr. is on my side. He has filed paperwork with the comp board as to why my meds should not be decreased any further and they just came back with lower her dose. Mind you I have never had a bad urine test and I have always complied with my dr. as he even wrote. I never took more that I was told to take and sometimes I took less, but that was on rare occasions. My pain was down to a 4-5 with my meds and my spinal cord stimulator. Now my pain has increased to a 6-8. I even asked my dr. to please cut my leg off a couple of times because I am tired of being in pain and tired of being treated as a drug addict. He stated no and went on to explain his discision which I won’t get into. My CRPS/RSDS has now spread to my right leg. I am so tired of fighting a losing battle ( I say losing battle because comp and the CDC and FDA don’t care). They just want what’s best for them. We hear about all these celebrity deaths from opioids and I don’t like to be classified in that group. Celebrities can get their hands on any drug that’s known to man and they don’t care about us real pain patients that need our prescribed pain meds. We are being penalized for their stupidity. I have not heard anything about a chronic pain patient overdosing on their meds. WHY? Because we are responsible with our meds. I just think there are going to be more chronic pain patients suicides and more illegal drugs bought because of this law. Sorry for rambling but I’m tired of all of the BS.

  4. Jean Price at 10:03 am

    Susan…how wonderfully refreshing to see a spouse of someone who fights daily pain speak up for him…and for ALL of us! We do have a few, yet not nearly enough, (my own included in those who don’t!). AND I’m not at all sure I can UNDERSTAND WHY THEY DON’T!! I applaud your efforts and compassion and hope others will follow your lead! We need this!

    For those considered by most to be the flip side of what caused all this opioid phobia…those who have died from or are addicted to illegal drugs, or illegally obtained drugs…we see their families speak out loud and clear…and often! Yet those of us with persistent pain, as a group, seem to have very little family support…and even fewer family members who will speak up at all! Those like yourself who DO are considered saints by most of us! So thank you for being one of the few!! YOUR VOICE is much more likely to be heard…and believed…than ours! We sometimes are just seen as fighting for our drugs! Not for our lives, which is the real truth!!

    My husband and two daughters are very compassionate and supportive of me, yet they don’t seem really angry about this or moved to do something about it…like to even lend their voice in defense of me!! I have definitely let them in on what’s happening to others…and they see my own limits from this too! Yet it’s never discussed unless I bring it up! And even then there’s little more than just accepting my information. My son in law became a nurse after being in the Marines for twenty years…and even he doesn’t seem to see the advantages of opioids as much as he sees the abuse of it by a few!! Yet I think this is a mindset being taught and reinforced in health care these days, so what else would he think!? It’s all so very sad!

    Those of us with pain continue to fight this when we can, wherever we can! Yet until we have a nationally known and respected champion…and MORE people speak up who don’t have daily pain (and therefore don’t need to use opioids themselves)…we are likely doomed to see our treatment get even worse! Maybe when these absurb tactics starts affecting millions of “other” people…like when they have acute pain…and they are also told NO…about receiving any appropriate pain relief…like after surgeries or from injuries or painful dental procedures…there might just be a bigger public outcry! I hope there will be, because I see this coming, too…even now!

    Until then, we will likely continue to lose a few more who can no longer endure this DAILY TORTURE…for that’s exactly what UNTREATED PAIN IS!! And for the very life of me, I can’t understand why ANYONE in this government or in this country would stand by and let this happen to innocent people, like your husband, our veterans, and the millions of us with daily, persistent pain! Money and greed aside, the denial of effective and appropriate medication to treat those with pain is a huge moral failing of our country! And I think it’s also a huge national shame!

  5. Janice Ferris at 5:22 pm

    Wonderful, well written story. My life is a nightmare even with all my medications. Without I would surely be seeking a medical assisted suicide.
    Thank you for your efforts to help people understand.
    Janice Ferris

  6. Maureen at 7:23 pm

    Susan, Bravo to you and Thank you for your fine efforts on behalf of your husband and the CP community. You give me hope in knowing that folks like you are taking our plight seriously and helping us. God bless you!
    @Dr. Michael Cooney, Thank you also! Best of luck! I live in Fla. now but I’m a born Jersey girl.
    @HJ., I so feel for you! I was in tears reading what you wrote, especially because I have been very sensitive on your very subject this week with dealing with ongoing disappointment from family, no support whatsoever etc. it all breaks my heart.
    Keep strong! We have each other. Hugs, Maureen

  7. Christina at 2:07 pm

    If I had the funds and resources I would travel to different states and talk with other patients and physicians so they could share their stories. It’s in humane to torture someone within their own body that went haywire. Keeping these meds away from patients or reducing them is what it is.. There are better solutions then making someone suffer..
    Disability is usual the next step and it needs major improvements also.. The whole Credit System does not work for everyone and it should be added up over your Life Time not the Last 5 years. So if you had a family situation were you had to remain at home to take care of a loved one and didn’t collect a check for it your screwed. There should be seperate money and tax set aside for not being able to work so you don’t starve or become homeless while waiting. If they had more programs and education available and the people were informed about it I believe more people would make an attempt to go back to work..

  8. Dr. Michael Cooney at 1:04 pm

    Outstanding effort. We are working here in NJ to try and convince legislators of the same message. We will be heard and will not give up.

  9. William Dorn at 12:15 pm

    We need police officers and firefighters and there families that are in chronic pain from all 50 states to speak out like this brave lady did. The goverment would listen to them.Your brother and sister officers and firefighters should all come out as a orginized group and they would have to listen. Your motto is to PROTECT AND TO SERVE. THE chronic pain community needs you now.HELP.

  10. HJ at 11:26 am

    This is a deeply appreciated advocacy effort. I was so discouraged a few days ago because I’d posted an advocacy link to my friends (excluding people I work with to protect my privacy) a few days ago. It meant a lot to me and I rarely do share my point of view with “normal people.”

    OMG. Crickets. I wanted to cry. It was a great story, very balanced and thoughtful. Only one person even gave it a like on Facebook and that person lives with chronic pain. The rest of my friends with chronic pain probably weren’t going to hear anything they didn’t already know from the article, but I tried to aim it at folks who were not chronic pain patients.

    Because I cared very deeply. Because it affects me. Personally. I didn’t want sympathy – I wanted someone to say, “Wow, I never considered it that way.”

    I still get upset. I feel very demoralized. I opened a post to only my friends with chronic pain because I knew they’d understand. I’m so glad for them. I told them that I feel like I’m under a gag order to not talk about my pain.

    I can confide in my mother, who also has chronic pain. We talk every day, several times a day. It’s not that we’re always talking about pain. Quite the contrary! I love to know how her day went, what’s going on… but if one of us is having a rough pain day, we don’t have to hide it.

    It means a heck of a lot just to be able to say, “I’m hurting today” when things are really, really bad. Acknowledgment, acceptance, validation… that’s what we’re looking for. Too often, people are quick to judge if they don’t have pain. We’re not always whining. It’s an acknowledgement of our reality — it offers a sense of relief.

    People with chronic pain are at higher risk for suicide. The pain sucks. But I’ve listened to suicidal chronic pain patients and what I hear besides “I can’t take the pain anymore” is variations upon the theme of, “I feel alone” and “I feel unsupported” and “people don’t understand” (variations of words along those same themes).

    We have physical pain, yes. A lack of social support causes emotional pain on top of our burden. We fight for support from our doctors (most of us were initially disbelieved or discredited by doctors). Some people give up because they have fought alone in imposed silence for too long.

    I wish folks would just say that they are willing to try to understand. Or… that they care.

  11. Rick at 8:46 am

    It takes thousands of our stories (nightmares), to equal just ONE teary eyed Mother blaming a known, potentially dangerous substance for her child’s death. I’m sorry, as I’m a CRPS refractory full body patient, and I’m being ‘pain shamed’ by every branch of society- including family, BUT unless our society stops blaming everyone else for the problems, it will continue.

  12. Denise Bault at 6:09 am

    What a great article! Hits the nail on the head when it comes to those of us in chronic pain! Thank you…

  13. Brenda Malli at 4:59 am

    Thank you so much for standing up for those of us with chronic pain. I have been living with chronic kidney stones. I’ve had three surgeries in less than a year. On the pain scale, I have been surviving (not living) with pain never under a 5-6. Recently it escalated to 7-8 and then at 1:00 a.m. a couple weeks ago it maxed to off the scale and three emergency room trips in a week. I told the doctor that I want and need the surgery, but I can not go home with a days worth of pain medication…that I would rather just die on the table and that I was tired of being treated like I was lying about my pain and just seeking drugs. I have had access to illegal drugs if I wanted it, but that is not the person I am. Just because some people live with kidney stones and it doesn’t seem to bother them, doesn’t mean everyone can. I have other chronic disease that intensifies pain but was never given any relief. Several days I would wake up and cry because I did. It is not right that people with chronic pain should have to suffer because of those who are or have been irresponsible. Using the logic that so many people die each year of opiate overdose is not good enough. If that is the case then we should all stop going to the doctor because over 250,000 die yearly because a doctor makes a bad call. It’s time that people start thinking logically again instead of basing their actions on fear.

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