Hey Reddit!

I was privileged enough to give a TEDx Talk to share my story.

I am 27-year-old recent graduate alumni who developed severe chronic pain shortly before starting my graduate school journey at the University of Toronto in Toronto, Canada. It wasn’t until nearly three years later that I was diagnosed with a severe form of Ehler’s Danlos Syndrome (EDS), a rare genetic disease that will continue deteriorate my musculoskeletal system as I age. Since then, I have battled debilitating and painful symptoms, which ultimately, I face each single minute of every day. As a result of chronic pain, I closely walked the line of suicide and nearly took my life. Fortunately, I was introduced to opioid therapy as a last resort and it saved my life. Because of prescription opioids, I was able to pull myself from the depths of depression and complete my Master’s degree and win Provincial and National scholarships along the way.

Since then, I have become a strong advocate for the destigmatization of prescription opioids and reframing the common understanding of these medications for patients who rely on them to survive. While the opiod epidemic continues to rage on, millions of responsible users are having their pain medication taken away from them. I am here to show that like countless others, I am not your average drug user.

Having the opportunity to do a TEDx Talk was a massive honour. It so happened to occur during the COVID-19 pandemic.

I am a completely open book. Ask me anything!

Proof: https://imgur.com/rzNJGd4

My TEDx Talk: https://www.youtube.com/watch?v=J9UOvJUk06w

Comments: 235 • Responses: 16  • Date: 

marry_me_tina_b64 karma

Hey David, thank you for sharing your experience and for doing this AMA. I work in healthcare, specifically in the world of substance use. Obviously, the opioid crisis is a major focus of what I do. Do you have any tips so I can be a better advocate? We tend to view a lot of what we do through the lens of problematic substance use and substance use disorders which is one portion of the population and I think we can easily miss the forest for the trees sometimes. For instance - how many people wind up accessing the illicit drug supply because they are not treated properly for things like chronic pain conditions?

Daveiscray83 karma

First and foremost, we need to understand that there are two opioid epidemics going on- there are those who are haunted by the grip of opioids, and others who are suffering from opioid inadequacies (for legitimate reasons). As far as the healthcare industry goes, laws have now been put in place to ensure patients receive the absolute minimal amount of pain medication, regardless of their disease or condition. Imagine two patients walking into the ER, one with a migraine, the other with a bullet wound, both receiving two Tylenol and then being sent home. That is the best analogy I can provide as far as the current state of opioid administration goes for genuine pain patients.

Opioids aren’t prescribed by GPs, they are prescribed by specialists, who nonetheless are now unable to prescribe adequate amounts of pain medications, as they will have their practice audited and ultimately shut down if they do. Think about that- doctors cannot even treat patients as they see fit. They can’t provide medications as they see fit. It’s a trickle-down problem. There are a vast array of diseases and conditions which can cause chronic pain, and yet a blanket approach to pain management is being employed. As you touched on, this only leads desperate pain patients to turn to black markets on the streets, and before you know it they are heroin addicts looking for their next hit simply to manage withdrawals.

The best thing we can do is to start treating the problem, not the symptoms. There are millions of people who are suffering from chronic pain, but silently. Unfortunately, the world doesn’t just stop because you’re in chronic pain. If I could offer one message, it would be this- people do not understand the level of despair that comes along with 24/7, around-the-clock, severe chronic pain unless you are there. Opioids aren’t perfect and they have their risks, but they also save lives. People like myself don’t ask for the hand we are dealt. We are simply trying to live normal lives. Instead of implementing blanket restrictions, we need to treat each case as its own and manage pain accordingly. There are better solutions to prevent abuse than simply denying medication for patients who are suffering through no fault of their own.

Understanding this fundamental mindset is the first step in stimulating change and the best form of advocacy we have right now.

lundy788130 karma

When I was oxycontin to recover from shoulder surgery I had the worst constipation I've ever known. And actual having a bowl movement after a week or so was one of the weirder and scarier things I've been thru. How do u get around this since u take opiods so regularly?

Daveiscray52 karma

Opioids screw up all of your bodily systems, badly. The constipation can actually be brutal for a lot of people. Luckily, my doctor led me on to polyethylene glycol (PEG) aka Miralax. Total game changer. For me, my body is used enough to the medications that I don't have the issue anymore.

Nagragatzi26 karma

How does it feel that you're one of the very few people who can factually say "Thank you for coming to my Ted-Talk"?

expensivepens73 karma

I don’t know if it’s very few, there’s a difference between Ted talks and Tedx talks

Daveiscray55 karma

There is. TEDx talks are independently organized. TED talks are usually reserved for people with crazy accomplishments, like Bill Gates.

Daveiscray21 karma

Literally my best flex.

PennStateShire18 karma

How do you deal with tolerance? Doesn’t the same dosage every day become less effective? Isn’t this why opioids can’t be prescribed over long periods of time?

Daveiscray44 karma

Totally. Tolerance is really difficult to battle and unfortunately is the root of the opioid epidemic. The worst thing to do is to continually increase doses. With that being said, doctors are learning. Opioid rotation, polypharmacy (aka using other medications that 'boost' opioid effectiveness), and titrating off opioids to take breaks when needed are the best tools we have, and that is what I have used.

xofromdanielle-12 karma

Not OP. I have an entirely different take than OP. Tolerance is a huge reason why opioids aren’t good for long term chronic pain.

A lot of people also will mistake withdrawals from a missed dose of pain medication as pain when in fact it’s just your body wanting the drug because you are dependent on it to feel ‘normal.’ I speak from personal experience and countless hours spent reading literature/studies on this subject and learning about it.

Cognitive behavioral therapy is the best known modality for long term chronic pain. If you look up the Mayo Clinic’s pain program you will find their treatment modality involves no opiates for a reason. Chronic pain is NOT best treated with daily opiates or opiates at all.

For a lot of pain patients that’s a very scary concept! How will I cope then? Well, in all honesty, chronic pain is manageable. Sometimes it’s frustrating and limiting. You have to take days off to care for yourself or you need to do hard emotional work, physical therapy and basically other holistic methods of healing and that’s not easy. Not to mention that can take months upon months to work. Whereas pain pills work in 30minutes but the relief you get from the hard work aspect of it lasts much longer and is more beneficial than any pill will ever be.

Here is a link to a post on how I manage my chronic pain on a daily basis without opiates....

Daveiscray58 karma

Thanks for sharing. I read your post. Unfortunately, many patients live in higher amounts of pain than a 3-5 pain score. I am at a 9 or 10 most of the time, and I'm way lower on the pain score than millions of others. There are brutal diseases out there that cause brutal amounts of chronic pain, far far worse than what I've encountered. From people who's skin falls off to those who's bones break at the slightest touch, screaming into a pillow simply doesn't cut it.

koalafarmer14 karma

With 800k deaths and counting and more opioids consumed in the US than the rest of the world combined.

How do you reconcile the unprecedented damage opioids inflict with your advocation? Not being a dick, just can't see the social benefit here..

Daveiscray32 karma

There are legitimate reasons for taking opioids. While on one hand there are 800k deaths from opioid overdose, there are millions of patients who responsibly take their medication and don't end up on the street. I'm only one of them. You just don't hear about us, because we silently conform to society. We work normal jobs, have families, and do our best to live normally.

The thriving opioid epidemic is partly a result of the mismanagement of opioid prescriptions, as well as other factors resulting from failure on behalf of the government (the war on drugs, throwing addicts into prisons, poor support for lower socioeconomic classes, etc). Particularly in the US, patients are prescribed insane amounts of opioids and then left to deal with the fallout. They are quite literally manufacturing addicts.

However, there are tactics that are used to prescribe responsibly. Opioid rotation, frequent drug testing, psychiatric evaluations prior to prescribing, to name a few. They're just not widely used.

It's easy to not see the benefit when you're not in hell 24/7.

CptCarpelan12 karma

Isn't stigma a good thing to an extent? I mean, if you go on opioids for long enough the problem of hyperalgesia starts coming up, which often leads to increased doses, and so on. I see its usefulness in chronic pain conditions, but in non-chronic situations, wouldn't other routes be preferable?

Daveiscray15 karma

Stigmatizing people who suffer through no fault of their own is only negative, my friend. Education is a better alternative.

Kasmein8 karma

First off, I applaud you for just attacking it. Love the drive. Heres my actual question, Have you looked into medical marijuana? I do medical research and a large medical concern about COVID-19 was something called a Cytokine storm, and marijuana has been known to slow the reaction to cytokine storms because it(THC) simply slow the body's reaction times down.

Inflamation is commonly coming up in most medical diagnoses I was just curious ultimately if you have tried marijuana as a medical alternative to Opiod's or not

Daveiscray29 karma

I get this question all the time.

Opioids should only ever be administered as a last resort, period. As I mention in my talk, I have tried literally everything. Chronic pain patients will relate to this- when you’re desperate you will try anything. When I say I have tried everything, I mean it. I’ve tried every at-home therapy and every professional therapy you can think of. From physiotherapy, chiropractic, yoga, mindfulness, naturopathy, supplements, books, and much more. I can’t even name everything I’ve tried because there’s so much, so just take my word that I have. Medical cannabis is one of those things. I have a drawer full of it right now. I refused medication for years before finally being defeated enough to begin the journey of prescription medications, so I’ve experimented with cannabis thoroughly.

Does weed help? Sort of. I’d say it is a helpful tool for managing the state of mind that comes along with pain (anxiety, mood, etc). I would say it helps with the mental elements that can factor into pain, but doesn’t really touch the pain itself (keep in mind, I have very high levels of pain). Nonetheless, I still use cannabis heavily because as a pain patient you will take anything helpful in any way at all.

barkinginthestreet7 karma

Hi David, thanks for sharing here. EDS research and advocacy seems to be funded largely by the pharma companies that also have a stake in opioid sales. Aren't these companies the reason we don't have better treatments for chronic pain?

Daveiscray17 karma

I can't speak for big pharma necessarily, but there is no doubt that makers of Oxycotin want the world to continue eating their pills. That is why the power to distribute opioids should ultimately be left in the hand of highly trained doctors.

Here is my take: I don't think this is the reason we don't have better solutions. Unfortunately, pain is really complex and hard to address. As far as management goes, there are no clear-cut or easy solutions. I was fortunate enough to do my graduate research in molecular neuroscience at the University of Toronto, and I came across plenty of researchers who worked on addressing the pain pandemic without being funded by big pharma.

FaustusC6 karma

"I'm not your average drug user."

I think that's your most key point here. you are one of a small minority that can use opioids long term without it consuming you. The fact that we have an opioid epidemic that was essentially caused by having addictive substances prescribed for basically nothing is all that's really needed to refute your claim that we overstigamtize this.

Why do you think, just because you can responsibly handle continuous usage that others can? Just because one man survived niagra falls in a barrel doesn't mean I will.

giraffe_on_ice3 karma

I also struggle with the distinction between responsible drug users and irresponsible ones. It is very much placing oneself on a moral high ground. Substance use does not occur and escalate from the same starting place. Poverty, trauma, and other systemic factors make some more vulnerable than others. Having protective factors in one’s life does not make you more responsible than those who end up on the street.

FaustusC2 karma

Cool. Don't care. Lost a cousin to it. One of my good friend's sister OD and passed

People who need it for medical purposes are one thing. But they're outnumbered 10 to 1 and pretending otherwise is hilariously deceptive.

OP is a responsible user. It literally saved him and that is wonderful. My cousin came from a great home where he was loved. He still died alone puking into his lungs.

Pretending that there isn't a problem with narcotics in this society is going to do far more damage to OPs cause than admitting addiction is an issue ever would.

Daveiscray5 karma

There is a stark difference between advocating for the responsible management of pain with opioids in a clinical setting, solely as a last line of treatment, and suggesting opioids be shelled out like candy with no regard for the danger they carry. The purpose of regulating opioids is to prevent people from dying like they do in the streets, where no regulation exists.

There is a massive problem with narcotics. No one is pretending there isn't.

If I was worried about my reputation, I wouldn't have put it on the line with a TEDx talk on one of the most controversial subjects in modern history.

fuckysprinkles2 karma

What other drugs have you tried? I have a cousin with EDS, I'm not really sure how severe. He copes as best he can with medical marijuana and CBD concentrates, can't get a doctor to prescribe opioids though he would really like them.

Corollary: how do you get a doctor to take you seriously and prescribe opioids for a condition that truly calls for them? My mom's dr took away her opioid script several years ago (chronic pain, fibromyalgia among other conditions) and accused her of malingering. She's since passed away, but was never able to find a dr who took her seriously.

Daveiscray8 karma

I'm sorry to hear about your mom. That is awful. For a long time, I wasn't taken seriously. At all. At one point, I waited a year to get into an EDS clinic and they saw a young, 'healthy' guy with tattoos and a nosering, and told me, and I quote, "focus on my life instead of chasing diagnoses". They also told me that if I had EDS I would've been basically crawling into the front door. I was appalled.

At this point, I've seen over 50+ specialists. Half of them didn't take me seriously. So, here is what I learned. If your doctor doesn't take you seriously, get a new doctor. Be your own advocate and you will find someone who will listen with an open mind and ear. It is a slow and frustrating process, but don't give up on yourself and be your own best friend. I advocated for myself and eventually fell into the hands of one of the top pain specialists in Canada.

DudeWhoSaysWhaaaat1 karma

What separates yor opioid dependance from opioid addiction? Chronic pain patients never benefit from ever increasing opioid doses and importantly neither does society. I feel sorry for you and I hope eventually you find thae help that you need outside of opioids.

Daveiscray7 karma

I'm grossly oversimplifying here, but dependency is physical and addiction is mental. For an addict, their signal to take an opioid is their craving. For me, it's when my pain starts creeping up. Some users are addicts, but all opioid users (including me) are dependent.

reelznfeelz1 karma

What are your thoughts on kratom? I've used it successfully for a few different things and while a bit habit forming, it appears to be super safe and the pharmacology data backs this up. Yet the FDA and DEA have each tried to ban it as some kind of "gateway" opiod, when evidence suggests that if anything, it's getting people off of the hard stuff.

Daveiscray7 karma

I did consider Kratom, but as you mentioned it's habit forming. Ontop of that, it's not regulated, so it's really only as safe as any other street drug. Not knowing the potency is simply too risky. Even with those things aside, Kratom is expected to become a scheduled narcotic in the near future, so there's no longevity to be had. It's a shame that Kratom hasn't been taken seriously as an opioid painkiller.

Daveiscray1 karma

I don't. But don't give me any ideas.

ReeferMaaan0 karma

[removed]

Daveiscray29 karma

Usually, about 40 oxycontins a month, depending on what the higher-ups decide over at the Illuminati.