Purple Tears: It Could Have Been Me

Purple Tears: It Could Have Been Me

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

In April this year, it snowed.

When I got the news that Prince, my all-time favorite performer,  was gone I was devastated. I picked up the phone and called my mom – and we both sobbed.

For the first decade of my CRPS, Prince helped me survive. I played his music and watched his videos on MTV constantly. His singing and dancing gave me the adrenaline rush I got from the performing I’d lost – and when I felt suicidal I’d think, “This rush, this excitement isn’t going to be wherever I go when I die. It’s here and now. I’m going to stick around.”

Prince’s death took me through most of the stages of grieving. When I first saw the report on the internet, I told John it was a hoax. In fact the whole first day in between news reports I kept going back to work because it couldn’t be true. Denial is a powerful balm for overwhelming emotional pain.

Numb by that night, I saw a replay of Prince accepting a life-time achievement award in 2010. It was clear to me from his tears and words that he was suffering and not long for this world. I just didn’t know why such a vital, young man was speaking about handing over the creative keys to a younger generation. Heading off to bed though, that clip gave me some peace because I believed the reports of his death from natural causes.

When I woke to learn that Prince had had chronic pain and most likely overdosed from opioids, I was angry. Really angry. Questions swirled around my head: Why wasn’t he stronger? Why didn’t he care about his life? Why would he hurt the pain community? Was he really just an addict? Though still confused, most of my feelings about Prince had turned to disappointment and even bitterness.

Two weeks later when I was one of 25,000 who attended his memorial at Los Angeles city hall, I was still wrestling with feelings of love and gratitude for this artistic genius and contempt for his weakness. When the tribute organizers released a stream of white doves, I cried. Mostly I was just mad that he wasn’t there – and he would never be there again.

While waiting for the medical examiner’s report from Minnesota, I caught CNN’s town hall about opioids. One of the doctors frightened me when he described the appearance of people who overdose on these drugs. That was an “a-ha” moment for me.

About 15 years ago my then pain doctor gave me fentanyl patches, instructing me to slap one on my chest next time I was at a level 10 pain. I did that one morning when John was at work and then quickly fell asleep. Next thing I remember was hearing my mom talking to me from the foot of my bed. I woke to an empty room frightened and disoriented. I don’t remember calling John, though he tells me I did mumbling about our children who were in Yellowstone Park and in danger.

As John raced home, he got my doctor to phone me – and I recall him yelling to rip the patch off. By the time John arrived, I was so pale, weak and nauseous he was afraid for my life. I recently shared this event with my psychologist who informed me that I had hallucinated from drug-induced psychosis. She also said I was lucky to be alive.

When Prince’s report stated he’d accidentally overdosed on fentanyl, I was overwhelmed by sadness and stunned it was the same drug that almost killed me. Finally in acceptance, I now see that Prince was a victim of chronic pain and at least one irresponsible doctor.

I have a new question: with chronic pain being an epidemic public health problem, why do opioids after 150+ years remain the gold standard of pain management? No matter what angle you come from, these drugs are flat-out dangerous. While they are tremendous pain relievers, opioids can also generate dependence, addiction and death. We deserve better!

The only reason opioids are still the go-to therapy is that this country has never respected chronic pain as the hellish, life-destroying disease it is. The time is now for a “moon-shot” initiative that pours billions of dollars of resources into developing safe and effective pain relieving medications.

I hope this brilliant artist’s death will push us one step closer to finding that grace. Thank you, sweet Prince, for being mine during many of my darkest hours.

Cynthia Toussaint lives in Los Angeles. She founded For Grace, which is a non-profit that concentrates on the issue of women in pain.

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There are 30 comments for this article
  1. Stephen M at 3:52 am

    Joanne

    Opioids are effective for any SEVERE pain and SHOULD NOT be reserved for end stage cancer. Cancer is not the only deadly disease that causes immense pain. Worse yet, there are many diseases that causes horrific pain and refuse to kill you and end your suffering.

    Please stop spouting PROP nonsense when you clearly have no training in addiction or pain management.

    fentanyl, specifically, is great for chronic and intractable pain patients because it has a low side effect profile and causes minimal histamine response, unlike morphine (which causes anaphylaxis is many of the pain patients I know). My wife an I are both allergic to morphine (the “plant derived” opioid, which is not make synthetically), codeine (morphine pro-drug), hydromorphone, and hydrocodone (hydromorphone pro-drug). We both also have problems metabolising the prodrug oxycodone into the active form (oxymorphone), so oxymorphone and fentanyl are our only options to treat our Intractable Pain (my wife developed Cushing Syndrome without opioids, thankfully I was able to get an intrathecal pump when we lost our prescriber- he moved across country for his wife).

    I have stage 2/3 brainstem glioma (diffuse intrinsic pontine astrocytoma) that has been torturing me for over 12 years (8 of which I have been on opioids- from Vicodin to Actiq). I have also had severe scoliosis most of my life (that the morons doing the school scoliosis checks always missed).

    Should me doctors have left me to die instead of prescribing fentanyl for my pain?

    My wife has Ehlers-Danlos, which causes severe IP and scoliosis (which required a T4-L5 spinal fusion). She is is severe pain daily. Since our doctor left and she lost access to her Duragesic, her weight has doubled, her cortisol is through the roof, she developed a heart murmur, and hypertension. The uncontrolled pain also set off her autoimmune disease, which caused severe thrombocytopenia (her platelets were 23 thousand last time she had bloodwork- they should be about 10x that)

    Should her doctors be denying her fentanyl simply because she has “non-cancer” pain?

    If you care to educate yourself, at all, read:
    http://bit.ly/PainGuidePDF

  2. Stephen M at 3:32 am

    That doctor is the danger, not the fentanyl patches. They are for chronic pain ONLY. They take 8-12 hours to work and NEVER should be used for acute pain or breakthrough pain. The only fentanyl for BTP is transmucosal fentanyl (Actiq, OTFC, Lazanda, Fentora, etc). The patches and the transmucosal fentanyl are for OPIOID TOLERANT patients only.

    Yes, you could have died, but you aren’t the same as Prince and either was your situation. Your shouldn’t be writing this article without learning A LOT more about opioids. Before you opioid-bash, learn enough to know that your doctor was the villian, not fentanyl.

    Also, to one of the commenters, with or without a drug holiday, opioids (except Demerol) are NOT hepatotoxic or nephrotoxic, your organs are hurt by things like acetaminophen (paracetamol) and Lyrica far more.

  3. Christine Taylor at 2:07 am

    Doug—I have a similar practice. I suffered for 3 years with inadequate pain control and am very fearful of the medication not working due to tolerance. I also want to protect my kidneys and liver from damage. I take drug holidays and just stay in bed when I don’t need to be up and about. Other times I lay still with ice. Some pain I can control with Lyrica so if I am at home depending on the type of pain I will use that. Lyrica has side effects and I feel fuzzy when I take it so I cannot use it if I am going anywhere. I have been able to reduce my opiate use in half. I think part of that is because I trust my doctor and don’t fear that she will abruptly stop prescribing opiates. (unless of course she has a reasonable alternative)

  4. Anne Fuqua at 1:41 am

    To Emily Raven & all others who have either lost to all opioid medication OR have been tapered to a lower dose with negative effects on your quality of life:

    https://m.facebook.com/Pain-Patients-Losing-Access-to-Medication-1682507365371193/

    I am collecting reports (you may remains anonymously) reports from patients who have been tapered to a less effective dose or had their opioid discontinued entirely.  I’m hoping that stories about the negative effects this had on your quality of life and ability to function will be helpful refuting claims that opioids are ineffective for chronic pain and do not improve quality of life and ability to function. 

    Also I have set up a second page to collecting information from individuals who have lost a friend or family member as a result of suicide due to untreated pain, withdrawal, or cardiac event/stroke that occurred during an episode of severe pain.  That link is:

    https://m.facebook.com/DeathsFromWarOnOpioids/

  5. HJ at 4:48 pm

    This is one story. I’m sorry it happened to you, but many people take the medication safely and shouldn’t lose access because of what happened to YOU. This is an anecdotal story and it does more harm than good.

    This is akin to the problem we have: One person abuses medication, so let’s generalize and say everyone who takes that medication is going to abuse it.

    Just as YOU had a bad reaction, so you generalize to everyone.

    It’s damaging and unfair. It doesn’t de-value what you went through… and I truly am sympathetic, but it doesn’t warrant an article that could be read and be used against pain patients who are benefiting from the medication.

    In the current political/social climate, a simple story turns into ammunition. Great care needs to be taken in what’s put out there.

  6. Emily Raven at 1:08 pm

    The suggestion of Kratom in the comments is a good one, but not a viable option for all. Just like every other medicine a person can be allergic, have bad effects, or it just won’t work well. Plus in many states it is now downright ILLEGAL.

    As for this article itself I truly have a few issues with it. While synthetics such as fentanyl can be dangerous it was never meant for opiate naive people or for breakthrough pain. I take great offense as someone 26 years old with an incurable degenerative condition that does not respond to all these alternatives that two years ago were considered quackery at the blanket opinion that opiates are dangerous no matter what. I’ve had much more dangerous side effects from the likes of lyrica and cymbalta, and almost killed myself in a blackout caused by the latter. I rarely had any side effects from the one opiate I took to function like a human being. Now because of cry pieces like this it got taken away for no other reason than “addiction” in other people and I am now housebound and haven’t been able to eat solid food for a month. Before seeing that ignorant little troll of a doctor I was about to go back to work part time where I would be able to see my best friend every day, was revamping our house so we could sell it and move, and had resumed to an extent my old job of fixing and flipping cars. Now I can’t even load the dishwasher without having to sit down on the floor because I almost faint. I am one of the many who used these medicines safely in order to have the ability to participate in life, not escape from it like the addicts. This is without a doubt one of the most hurtful articles on this site I’ve read (which is saying alot lately with all the sugar coated anti opiate stuff posted) and I pray no outsider reads this and gets yet another wrong idea about the pain community.

  7. Kathleen at 12:27 pm

    I too use Fentanyl patches safely. They took me from being in bed 24/7 to leading a life that I am happy with. Arachnoiditis left me in pain around the clock, I tried many different treatment modalities without much benefit. As pointed out by other writers Fentanyl is ordered for those of us with severe pain requiring around the clock dosing of opioid medication. What a shame that the author was given the patches from a negligent prescriber. It is not to be “slapped on when pain hits a 10!” Is it a dangerous medication? ALL medications are dangerous!! I see my physician monthly and we discuss my pain. He gives me instructions on using this medication safely. I have never had any problems with using Fentanyl, as I use it properly! Articles such as this make it increasingly difficult for chronic pain patients to receive effective treatment. What a shame! I hope this author will do more research into the topics that she feels so strongly about, and rather than hurting a population of folks that suffer she can be more of an advocate.

  8. Anne F. at 9:50 am

    The fentanyl patch is definitely the most effective medication that currently available for me personally.  It’s not a first line treatment for chronic pain, but it is definitely appropriate and effective for certain patients.  I’d have to take issue with anyone who believes that transdermal fentanyl should be reserved for end-stage cancer.  The fact that the medication is released over 48-72 hours is a huge benefit because it gets patients off of the “pain rollercoaster”.  It is a huge asset to patients with metabolic defects and those with severe absorption issues with conditions like Chrohn’s disease or ulcerative colitis. 
    Because medication is absorbed through the skin as opposed to the digestive tract (where cytochrome p450 enzymes act), transdermal fentanyl patches allow some patients with multiple cyp450 defects to avoid requiring very high dose oral medication, intrathecal, or subcutaneous injection (which almost all physicians would be highly fearful of prescribing in the current regulatory climate).
    Intrathecal administration is a godsend for some patients, but ineffective for others.  The non-destructive nature of the surgical procedure is often emphasized, but unfortunately it isn’t always the “non-destructive” procedure that patient education materials discuss.  (which isn’t as effective for pain in the upper body, carries definite surgical risks,
    transdermal and sublingual routes are the only alternative to intravenous, subcutaneous, or intrathecal routes of administration.  Though there are now transdermal and sublingual buprenorphine products available, the fact that it is a partial agonist means it has a low ceiling level of effect, so patients with a higher tolerance or those
    in severe pain may not get sufficient relief (Belbuca’s manufacturer claims otherwise so it remains to be seen if it is indeed superior as they claim).

      There are risks associated with transdermal fentanyl just as their are risks associated with other medications like biological response modifiers for autoimmune conditions or anti-coagulants that treat or prevent blood clots.

    Transdermal fentanyl patches are not a PRN “to slap on your chest the next time your pain hits a level 10”.  First it takes several days to reach a steady state.  Any initial pain relief usual comes after a few hours, so you’d be going through some serious pain for hours before it took effect.  I’m wondering what dose your doctor prescribed and how tolerant you were at the time.  I realize you may not have gone into the full directions you were a given in this article.  However, if this was the extent of your physician’s instructions, you were not properly educated regarding the use of this medication.   In that case, it is the physician at fault, not the medication.

    We do not know if Prince’s physician was at fault or not.  It isn’t even clear if the fentanyl in his system was from a pharmaceutical source or was manufactured in a clandestine lab.  Even if it was commercially available pharmaceutical fentanyl, we don’t know if Prince acquired through a prescription or not.  Pain makes a person desperate for relief and desperate people do desperate things – it’s not a moral failing, just evidence of how poorly pain is managed in America.

    We just don’t know enough to make conclusive statements right now.  Pain patients making these statements without sufficient evidence is no less irresponsible than physicians making arbitrary statements before getting to know us and our medical conditions.

  9. Therese at 6:09 am

    This piece of work offends me on many levels and therefore I feel, quite frankly, doesn’t warrant much time. It does, however, put us steps backwards – thanks, we needed that. I think your “moon-shot” is pie-in-the-sky at best, decades down the road and more untested troubles at least. Opioids are gold standard for good reason; they can be and are used quite safely. Have not yet required fentanyl, but would certainly like it available if that day arrives. Karen J., agree and deep sympathy/blessings to you. Bruce, so glad you had the chance to speak up! I am very surprised so many were saying such things about their medication; I would have certainly thought that was not at all the norm. Author: If U loved Prince as much as U say, and clearly saw he was suffering, how could U have such “contempt for his weakness?” Definitely would have made a better journal entry. Maybe titled “Purple Tears 4 ‘Elevator’ Opiates.”

  10. Tim Mason at 5:51 am

    The way I understood this is that Prince was also buying medicine off the street. It is theorized that he bought counterfeit tables that contained fentanyl. Tablets have been seized that look like Oxycodone and Percocet but analysis confirmed the clandestine lab manufactured tablets contained fentanyl.
    Heroin is has also been found to be “cut” with fentanyl and many have been found dead from using it.
    The “take away message” from the Prince fiasco is “do not “buy or ingest anything that you did not obtain from a pharmacy through a legitimate prescription written for YOU.

  11. A at 11:10 pm

    Fentanyl patches, when used correctly, are not slapped on for emergency pain. Your doctor, and I speak now to the author of this essay, prescribed this powerful and oftentimes effective if used correctly narcotic completely inappropriately and that is what endangered your life. I use these patches, so I know that it says right on the box: “ONLY for pain requiring medicine around the clock” and DO NOT USE FENTANYL TRANSDERMAL SYSTEM for short term pain, breakthrough pain, or unless you are OPOID TOLERANT. In other words, these patches are to be kept on at all times, and only when you are so tolerant of opioids that this kind of powerful drug is required because less powerful opioids no longer work.

    I am sorry that your doctor was uneducated enough to give you the extremely dangerous instructions that he gave you, but it is a lack of knowledge and following the correct instructions that is to blame here, not a medication that has warnings all over the box and that, when used correctly, can give those of us in terrible pain our lives back.

  12. John S at 10:13 pm

    Prince was at a weight of 112 pounds when he died – where were the doctors and the close friends – they had to see the signs. Just days prior to his death Prince announced at a party that ” I might not be alive in 3 or 4 days. Just a few days later he was dead.

    This happens when its a Movie Star, Rock Star or just a Star. They live a different life meaning they get what they want and if its drugs they get them. Why didn’t he stop performing all the dancing and jumping around ? I’m sure doctors told him it will make your pain worse yet he kept it up.

    I must disagree with you on the point you made about opiates being the GO TO or the Gold Standard for treating chronic pain. Now its all about the Multi Disciplinary Approach which may or may not include opiates – just ask a Veteran and they will tell you that most all doctors use opiates as a last resort only and only after every other form of treatment has been tried.

    As for Fentanyl – the difference between a dose for treating severe pain vs a dose that can kill you, is miniscule. I was on it years ago and got off of it for that reason.

    Opiates is not all we care about, we want any good treatment that will work and keeps opiates out of our body.

    The media, government, healthcare and insurance companies want to ban opiates for chronic pain so we respond in kind by telling them no please don’t do that, they do work for us. So I ask, is there something wrong with that ? If they wanted to ban Chiropractic care I will fight just as hard to preserve that type of care to.

    Thank you,

    John S

  13. Sandra at 4:59 pm

    This a nice article but do you have any personal experience with pain ?
    May this was a drug rehab problem maybe not pain issues.

  14. Stacy Cooper at 4:02 pm

    I am on Fentanyl pain patches and have been for about 5 years now and it saved my life. I was opioid dependant and was taking more than prescribed and was going through withdrawals each month because I ran short until my next prescription. I started out on 50mg every other day and do not take any oral opiods and refuse to increase the patch dosage. The instructions on the label specifically say not to put near your heart so why you do so I don’t know. I wear mine on my back. I have never had any problems. But this is exactly why they have to allow doctors who know us to design our pain management individually.

  15. Doug at 2:37 pm

    I do agree with this author about Fentanyl being highly dangerous and life threatening. I also agree that funding for research of effective pain relief should be given to those universities and drug labs who are truly working towards a non addictive and real effective solution to opiods. Fentanyl should only be given to those who are in the highest pain imaginable. I’ve been a chronic pain sufferer for many years now, and I have experienced those days of level 10 pain. Only one time did I ever use Fentanyl and that was after difficulty of surgery. It was the lowest dose and really did nothing for me.
    The point is that while opiates are dangerous, they are currently the only treatment that effectively reduces pain in chronic situations. Treatment for pain is not solely up to our doctors either, it is up to the patients to be responsible too.
    At one point in my treatment, I noticed that my body would eventually become tolerant of my opiates and my physician would compensate by raising my dosage. I told myself that I didn’t want to depend on opiates in higher and higher doses so I personally started to lower my dose. For seven to ten days every 2 months, I actually cut my dose in half for this period of time, even though the pain is almost unbearable. The plan being to reduce my body’s tolerance and to maintain a steady opiate regiment without needing my dosage increased every year or so. My experiment has worked very well for me, I have not only been able to maintain my dosage, but I have actually been able to reduce the amount I take by half now. At one time I was taking 240, 10/325 hydrocodone per month, and now I successfully treat my pain efficiently only taking 120 per month, or 4 per day. Every 2 months I still reduce my dosage for a week to 10 days to 2 per day to avoid tolerance. I’m not saying that this strategy will work for everyone, but it has continued to work for me over the last 3 years.
    My point is that we as patients are just as responsible for our own safty as our physicians are. If we can maintain a steady dosage of opiates without needing or requiring more because of tolerance, then the CDC and the rest of the government would have nothing to complain about.

  16. Sara B at 2:32 pm

    Here here. As much as we defend our right to take medications we need, opioids are a very very very imperfect solution. How many lives would have been saved if big pharma and the NIH had taken pain patients seriously years ago and sunk the money we need into research? How many of us would have better productive happy lives instead of spending our days in bed without work, money, purpose, and the loved ones who left us because they couldn’t cope anymore? This opioid war probably wouldn’t exist in the first place. Instead we now have “stronger” ” better” opioids and a drug for constipation when we take opioids. Our government and medical industry has failed us, and now they spend their time blaming us and taking away meds that gives us a small bit of relief. Shame on them.

  17. Martin at 1:39 pm

    The main point to this post is a very important one. Until chronic pain is truly taken serious as a health problem by US leaders, we will get the leftovers of everything in this society, including therapies. What other disease-community would hold something up as inherently dangerous as opioids as our salvation – unless we were absolutely desperate.

  18. Isabel Etkind at 1:04 pm

    This article angered me because it blames opiate use for the deaths due to abuse. While perhaps Fentanyl should be reserved for use by patients in a hospital there are plenty of people that take their Opioid prescribed medications in the dosages prescribed within the recommended time intervals and experience no problems from the use of these drugs. The real problems come into play when the drugs are used without medical monitoring and when they are obtained illegally on the streets of Main ST. USA. We need to be able to use these medicines safely when they are needed. There are already unbreakable prescription bottles with combination locks and most States have Computer Data-bases that monitor to whom the drug was prescribed, the pharmacy where it came from and the doctor that prescribed the drug. These safeguards should provide enough information about who is using these medications, and perhaps maybe why they are being used. There are many Extremely painful conditions that require the use of these medicines besides cancer. Unfortunately, given the current attitude towards these drugs members of the medical profession are terrified about prescribing them even when they are needed. Instead, we have a large group of people in pain that are suffering and trying to survive as well as they can given the poor treatment of pain and pain patients especially when the condition is Chronic. Instead, people are committing suicide at an alarming rate when the pain reaches level 10(out of a possible 10) and no relief is provided. THIS IS MORALLY, Ethically and ln every other possible way WRONG!!!!! The appropriate treatment of pain will not only save lives but will allow patients to live as normally as possible until the pain becomes such a big issue that the person is as active as a permanently planted tree. PAIN PATIENTS NEED HELP!! WE DO NOT NEED TO BE JUDGED OR TO BE TOLD THAT OUR PAIN WILL GET BETTER OVER TIME! WE KNOW THAT THESE ARE LIES!!! THESE LIES AND THE TRUST WE LOSE IN OUR DOCTORS IS ALSO A LARGE PROBLEM!! ONE THE TRUST IN THE MEDICAL PROFESSION HAS ERODED IT MAKES US QUESTION EVERY OTHER DECISION MADE REGARDING OUR HEALTHCARE!!! I HAVE BEEN A patient at VERY BAD PAIN CARE PRACTICE THAT TOTALLY ERODED MY TRUST IN THE MEDICAL PROFESSION AND IN THE GOVERNMENT OF THE USA!! THIS PAIN CARE CENTER ROUTINELY LIED AND UNDERPRESCRIBED DOSAGES OF PAIN MEDICINE SO THAT PATIENTS RECEIVED ALL THE RISKS AND NONE OF THE RELIEF.

  19. Jill at 12:36 pm

    As a responsible user of a Fetynal patch that I clap on my arm every three days I have Karen J. For anyone in chronic pain to idolize a man who she acknowledges hurt the part n community is hard to understand. He overdosed on drugs. He was an addict. With all the money in the world he gets a bad doctor?
    As you can tell from the postings it’s hard to understand her life threatening experience. Didn’t her doctor give her a low dose first time.
    I love the patch because it’s time release so I don’t wake up in agony. I also take 1 or2 Norco(or less) for breakout pain. I don’t get high. It barely manages my pain of 30years. I’ve never gotten high, have no cravings.
    It was wrong of the author to make those of us on a patch feel like we’re addicts. Isn’t that what anti-opioid people do. I think this was a toxic article and I don’t need this blog in my struggling life.

  20. Angela Mitchell at 12:18 pm

    I cannot believe this! This is such a slanted, hurtful to the pain community and inaccurate piece. I have been on Fentanyl for almost 9 YEARS. You should not be given fentanyl at all, UNLESS you are accustomed to taking opiates around the clock, for chronic pain, for at least 6 months. If your doctor gave you this and you were not accustomed to opiates, AROUND THE CLOCK, FOR AT LEAST THAT AMOUNT OF TIME, then the blame falls squarely on your doctor. You should address that with them. Or your lawyer.
    I like the patch because it is so simple. It provides less room for human error in that you don’t have to remember when to take your next dose. You put it on every three days, you overlap it with a tegederm (so it doesn’t fall off and land somewhere it shouldn’t be). Right on the directions it tells you not to use heat at the site and not to take a hot shower when you first replace it. Simple. Again, I’ve been on it almost Ten Years and never a problem. Never. And…it works great. I am provided with a breakthrough opiate as it does not stop your pain completely nor does just an opiate in pill form. But together, they do their job well. It’s also important to note that this combo was only arrived at after many, many other drugs and so many modalities were tried…over a five year period…..none relieved my pain consistently. I am extremely mindful that any drug, including OTC can be harmful so I handle it all with the utmost care. I’m not trying to hurt myself. I’ve had enough pain. I’m just trying to experience a life rather than just existing, unable to move, on bed rest 24/7. And my medication combo that I’m on and use EXACTLY as its intended helps me do just that.
    NPR. There should have been an attached disclaimer or at least some factual, in depth information added onto this about this drug. Y’all have done nothing but further the misinformation.

  21. Liz at 12:09 pm

    Cynthia,

    Prince meant a lot to you. I’m sorry for your loss.

    I’m also sorry for Prince, he suffered so much, physically, mentally and emotionally.

    High pain levels can and do drive – some- otherwise strong, reasonable people to do unreasonable things. And it can cost them their lives.

    I understand your thoughts, and some of the thoughts left by other commenters.

    I, too, use the fentynal patch for pain relief. I use it as directed and have had much success with reduced pain. It is not the first medication I’ve tried nor will it be the last but I for right now, It is ONE of the many tools I use to continue to work and care for my family. I am thankful for this medication and, while I have recently, and voluntarily, reduced the dose by 50%, I am grateful this medication is available to me. And I pray it will be an option for me as long as I need it!

    Cynthia, I am very thankful we didn’t lose you that day you tried the fentyal patch! Your story reminds me of the morning I took Lyrica for the first time. I, too, was alone – except for my two and three year old children! I became very weak and unable to move or speak but was able to realize what was happening and crawled to the phone and dial it. I couldn’t speak or move when my husband answered my call but was completely aware of what was going on! Thank God he heard me breathing and sent his sister to check on me.

    I think we need to remember that ALL medications are potentially dangerous to us and each person’s reaction – or benefit- may not be someone else’s.

    I’d like the option to use the fentynal patch if I need it but I would love some real serious alternatives too!!

  22. Maureen at 7:47 am

    Cynthia,
    Thank you for writing this column. I feel your sorrow. I too was devastated when Prince died. I too was very disappointed in the reason for his death. I just couldn’t believe it.
    I too was angry about it, but because I saw it as yet another media platform against opioids.
    While I deeply despise having to use them to get through each day…I have to in order to move, function.
    And I too almost died from using just one (prescribed) Fentanyl Patch a few years ago.
    I put it on before bed, I woke up at 9am and was ‘out of it’.. I began my morning routine…coffee, check emails but had to immediately go back to bed due to extreme lethargy. I thought ‘I will just lie down for a few mins’.
    That day I was scheduled to go volunteer at noon time.
    I slept until 6am the next morning!!! I lived alone.
    When I woke up I was stunned and confused, I cried and praised God over and over that I was alive!! I knew in my heart it was a miracle that I woke up and was still breathing.
    I called my doctor and got the RN,NP who had prescribed it for me and was told to give it more time. What?!!!!! I defied that order and ripped it off!
    At that point in time of my life in chronic pain I was somewhat ignorant about all of the meds. I had been on lesser dose opioids for several years by then.
    I was prescribed that patch at a time when I was suffering severe bilateral sciatic pain after a yoga class.
    I’m still dismayed as to why I was given that med for that and not told to just rest until it got better! At that time, I myself didn’t know better though, although I felt skeptical (for some reason) about using it. I have since learned to pay close attention to my ‘gut feelings’!
    So, it then became the beginning of my getting serious with educating myself and learning more about Pain Management, and I’ve been on that journey ever since.
    I’ve tried everything natural… from different physical therapies, Reiki, EFT, psych therapy, exercise, acupuncture, TENS unit, yoga on/off (am currently in yet another Yoga class/series…this one is yoga therapy for chronic pain), balms, lotions and so on and on and on. I research each day. And I love reading the NPR posts…
    Opioids are what still help me live my life in ‘less pain’ the best.
    But I am a ‘responsible’ patient and know the dangers of them very well, since I too experienced what could’ve happened to me.

  23. Bruce at 7:36 am

    I’m as big a Prince fan as anybody. And while what the author is saying is ultimately true, lets try not to knock opoids off the shelf until theres something better. I sat in on the FDA hearing yesterday, and patient after patient bemoaned the fact that pain medicine made them groggy and non functional. I take oxycodone and none of that happens because I take the correct amount and it simply attacks the pain. Period. I don’t have cravings, and don’t overuse it. Thank God they let me enter the conversation in a two minute phone call, or opoids may have disappeared altogether.

  24. mary mell at 7:32 am

    Prince was an addict and chose to remain one. Unlike most of us chronic pain patients, he had all the money one man could need and access to the best medical care in the world. His name alone would have gotten him that. By overdosing and keep in such large amounts of pain medication on hand, if he really was taking them for pain, he gave everyone of us true pain patients a bad rap, what people love to think about us, we are all addicts. I have been a chronic pain patient for over ten years. I have an intrathecal pump made by Medtronics. It is programmed to dispense just drops a day of morphine right into my spinal fluid, bypassing my liver, kidneys, bloodstream, etc. This is such a safer way to treat pain without the side effects on the body. I have NO control over this pump. It is implanted in my abdomen and programmed at the clinic, refilled every ten weeks. Along with this I take Ultram……Ultram! Am I in pain? Yes I have some pain everyday, I will not lie. But not pain you cannot live with. So my question is….if a nobody got this……Medicare paid for it, why was Prince not pursuing such avenues? I know regular pain patients struggle to get good care. But he was Prince!!! He would have had to go off all oral opiods thats why. All I’m saying is every time someone famous overdoses, it just places that bigger a stigma on us pain patients who play by the rules and makes it that much harder for us to care we need.

  25. scott michaels at 7:20 am

    i have tkaken fent paktches for years 100mcg. never a problem. Maybe your dose was high, i dont know.
    Unfortunately what prince did is exactly what is hurting us. Because of his wralth he was able to pay several people ti go to doctors and fake it. Then gave all that medication to prince. Cahnces are he had several patches slapped on him and was probably chewing them also. He was doing this PLUS THE PILLS.
    I loved his music also, but he was an addict that DID NOT TAKE HIS MEDICINE AS DIRECTED and was enabled by his friends and employees. No different then ELVIS. His so called friends should have dragged him to rehab. He can not be co.pared to the millions of us that take our medication properly

  26. Kris at 6:56 am

    OMG! well….as I sit stuck on my couch ..wishing I could leave it and get a life…away from my heating pad , Ice and chronic daily pain….I sit now speechless…..

    Yep still….speechless………………………………because I want pain help..and now I am scared to death of it…..and I am scared to death to live with out it….so I am scared to death of both sides now…………………………………………………….I want to get off my couch and live…with out a life you are a rock and a rock is not alive so I am dead ……I am dead…..do you see either way I am dead?….

    What would you say if you were already dead? Then would you risk it….? I guess is you die because some doctor gives you a patch …you can still get into heaven ..since you did not kill yourself..because you were tired of being a dead rock in constant chronic pain,…….

    Wow…this stinks…Thanks for sharing your story…I glad for you , You did not die…I wonder how you control your pain now?

  27. Karen J at 6:08 am

    Did this author give any consideration to her writing’s effect on those who use the Fentanyl patch for management of severe and intractable pain?

    The author’s adoration for Prince has left her with an less than full and honest appraising of the circumstances which culminated in his death. Prince was not receiving opiates at a monitored and prescribed level from an attending physician. Prince was receiving opiates “off the street” in amounts well above what a physician would prescribe.

    For all the goodwill that the National Pain Report advances in the name of those of use with intractable pain, how could this opinion piece be approved for distribution?

    As someone who relies on the Fentanyl patch for relief of severe, intractable pain, I find this author’s opinions hurtful and the information she portrays as limited and inaccurate.

    I use my prescription for Fentanyl responsibly. Prince did not use opiates responsibly as do the majority of individuals using opiates for intractable, life-altering pain. Prince’s death was a result of his own actions – Prince used opiates purchased off-the-street outside of normal pharmacy setting; Prince used opiates in doses/quantities above what would be considered standard of care.

    I have avascular necrosis of both of my hips and jaw from long-term use of prednisone. My bones are dying from lack of blood supply. Standing and walking is agonizing. The use of a Fentanyl patch affords me some resemblance of the ability to stand and walk. I would like to see the author of this article live in my body space for one day before writing the article and opinion piece that she did.

    It is known that Prince had severe joint damage – joint damage due to years of performances and jumping off of stage settings. I can appreciate that he was likely in significant pain.

    The author’s love of Prince obviously obscured her all of the facts that culminated in Prince’s death.

    I may not come back to reading the National Pain Report after reading this author’s writing.

    This author’s opinion piece would have been better as a writing that she wrote for her own emotional processing of Prince’s death and unpublished for wider distribution. This author’s writing does more harm than good for those of with chronic pain who rely on the Fentanyl patch.

  28. Joanne at 6:02 am

    Opioids are still the gold standard for pain control. Realize, however, that Fentanyl is a SYNTHETIC opioid. The pharmaceutical companies have tried for decades to create a synthetic version of the opium plant derivative with no success. The epidemic of overdoses of “heroin” began when Fentanyl made its way to the streets and was being mixed with heroin to make it more potent. Legally, it is being overly and inappropriately prescribed in some mistaken assumption that a synthetic is preferable (morally?) to a plant derivative. Fentanyl should only be prescribed for end-stage cancer patients for whom all other medications have failed, and it should not be prescribed for the opioid naive patient. We should get the judgement of the opium poppy as evil out of prescribing practices; it is fueling the problem of both addiction and overdoses.

  29. Cynthia Phillips at 5:57 am

    We have better alternatives already but they aren’t main stream medicine so it’s ignored. Please look into kratom. It could have saved Prince’s life and it can change yours.

  30. Tee at 3:08 am

    Ive been on them for over 12 years now and wish I never took them. I broke my tailbone and back when scaffolding collapsed on me 3 stories up. Its more torture worrying about never being able to get off of them more than the torture of the pain itself. I wish they would come out with something more simple, effective, and non addictive. Shame.