I just had a friend try to kill herself. I know her through my glass art. Like me, she is a pain patient and has suffered.
What the medical authorities are doing to true chronic pain patients is terrible. We are treated like criminals. If you go to the emergency room, depending on who you get, you are accused of drug seeking.
I don’t go to the emergency room unless I just can’t tolerate things anymore. You are treated with a lack of respect because of the type of medication that you are on. If we were cardiac or any other type of patient, we would not be dealt with in this way.
I was a pharmaceutical representative so I know all about this and I still struggle. We struggle.
Photo-illustration by GlueKit; Source Photo Courtesy of Erin Smith
We struggle for quality of life because we can’t even get the proper dose of medication to make us reasonably comfortable. You know every day you’re going to wake up with a certain amount of pain.
Maybe it’s going to be a good day. Or maybe you’re going to be in bed all day. Or perhaps for days. This past week I could not get out of bed for three days because I could not move—and that was with pain medication on board.
This is a huge problem for the people that truly need the medication. We don’t want it; we need it.
I was involved in an accident while working in pharmaceuticals. They would send you boxes and boxes of literature and pens. I had a case in my car, lifted it and twisted the wrong way.
That started things. It was my first anterior-posterior laminectomy with fusions and screws and all that garbage. A year after that I had to have the same surgery, so now I have more of my vertebrae screwed and fused, and a metal cage too.
I also have a spinal stimulator and an occipital stimulator because I was lucky enough to have a couple more accidents. It was just one thing after the other.
In 2003, when I had my initial injury, I was first prescribed pain medication. When you have a surgery like that on your spine all the pressure must go somewhere else, so it’s distributed to all the other discs.
A year to the date of the first surgery, I had to have my second because another disc ruptured. I was transferred to one of their physicians that dealt with pain, and then I was started on a long-acting medication with a short-acting.
After trying to go back to work five different times full-time, I had to file for disability. During that time, I moved back to the town in Illinois where I grew up because it was much less expensive to live.
I was first prescribed fentanyl when I lived in Illinois; a 100mcg patch to be changed every other day. At one point I was on 150mcg every other day. Nerve pain is so tricky; nothing is ever going to completely wipe it out.
I was seeing a doctor down in New York City. My suspicion is he was taking kickbacks for prescribing fentanyl spray.
The spray under the tongue is just like taking fentanyl intravenously; it’s absorbed into the bloodstream. Honestly, at that point I felt so overmedicated it really didn’t have an effect. That was scary.
What’s worse is it wears off quicker, so you also experience its withdrawal quicker.
I contacted my old pain management physician. He saw the last case of fentanyl spray sent to me and personally called to say I wasn’t going to wake up one day.
That was all I needed. I realized I had to get off that spray.
After going to four emergency rooms seeking help to get off this stuff, I had to name-drop my doctor and was admitted to the hospital for three days knowing that my insurance may not cover it.
It didn’t matter. I wanted off that awful drug. And all it took was three days of a little Ativan every three hours and I was free. I walked out of there and started waking up from a five-year fog. I never looked back.
When I talk about the fog, fentanyl does a great job of taking care of pain if dosed and taken appropriately. But the other thing it does is take away all your emotion. You don’t feel anything. So I had almost five years of not having any feelings at all.
I just checked out of life completely. I was not present at all. There was no one home and that’s not who I am.
All of a sudden, you’re coming out of this fog and feeling everything again. There are still times when I think I’m overly emotional because I’m feeling things I didn’t for half a decade.
Then, I had to start the process of trying to rebuild all my family relationships, friendships, a trusting relationship with my physician, and trying to figure out who this new person is going to be.
To be fair, I really didn’t share much of what was happening with my family. Not much at all. I have two amazing brothers and I didn’t even give them the chance to try to help.
The shame, guilt, and judgment that I have received from so many professional people really messed up my head and made me think that nobody would want to be around me because of it. I totally isolated myself from everyone.
I’m still on a long-acting medication and a short-acting one for breakthrough pain, but nothing like what that fentanyl was—and nothing like what it did to me.
I think about the people that lost their lives because of pharmaceutical companies and the doctors in their pay prescribing fentanyl. It’s awful.
When I see someone that’s on heroin say they just want to be well, imagine what getting off fentanyl is like. It’s up to a hundred times stronger than morphine It’s a lot quicker withdrawal. It’s a terrible thing to have a doctor prescribe to you.
I’m not embarrassed to talk about this as a lot of us are. I’m not embarrassed to talk about some of the lies I told and things to get more fentanyl because it would run out quickly.
I once purchased some extra patches from someone that had them; he was prescribed them himself. This was around 2008 when someone could get away with that if they didn’t need it.
And there were times I bought some Percocet from someone and that was the same situation. As I think of this, it is so bad, but I also got some quite a few times from another friend that had access to it, and paid money that I couldn’t afford.
Fentanyl is so strong even those 30mg Percocet did very little to stop a withdrawal. I have never experienced such anxiety as when I was going to run out.
At the time, my mom was ill and I was living on Cape Cod trying to help her. It would be so humid. Sometimes the patches would come off and you can’t get them to stick back on. I would hold them, terrified because I knew it was coming.
And then I had to start thinking in my head before I got too sick and couldn’t leave the house. How was I going to get another patch to get me through till my prescription? How was I going to get to my prescription fill date?
I told some stories to my doctors which embarrass me because I had some amazing friends in the medical profession. I loved my job and I lost respect and trust. That hurts me now. But when you’re going through it, and you know the clock is ticking until you start getting really sick, you’ll come up with some great stories.
Thankfully, I never stole from my family or did anything like that. But I lied and I lied by omission.
And the worst thing is those withdrawals. There was a huge blizzard on Cape Cod in 2007. We had a really long lane and I had run out during the storm. I had to be taken out of there in an ambulance because I had a full-blown panic attack. I was hyperventilating and terrified I was going to have a seizure.
The withdrawals are unimaginable. I had tried to go off this, cold turkey, many times. I had even tried using some of the things they offered to combat the withdrawal symptoms. But it just doesn’t work.
Initially, you must clear your calendar for a few weeks because you need to be attached to the bathroom. If you’re not taking a hot shower, you are vomiting or have diarrhea. You have hot and cold sweats. You can’t stay still.
To me, it feels like every place I’ve ever had surgery on my body just cramps up and goes crazy. Your muscles cramp and you feel like you have to stretch them so you can’t stay still. You’re constantly moving. Your head hurts. Your body hurts.
It’s just awful and can last weeks. You don’t sleep at all. Ever. From what I understand, insomnia can last a long time. This isn’t just a physical thing during this time, your mind is messing with you in all kinds of special ways. We go back to the guilt, humiliation, sense of worthlessness—you name it.
I am lucky enough that I have a fantastic group that takes care of me now. I am currently on a low-dose long-acting non-abusable opiate and I do have some short-acting for breakthrough pain. Way, way less than being on all that fentanyl.
As a chronic pain patient, for your own mental health you have to understand that you will be in a certain amount of pain each day. It just depends on how much. That’s even with medication on board because they’re not going to get anywhere close to overmedicating people again.
And in many cases now, our doctors’ hands are tied. They can only do so much for us. I find it sad that my physician and I can’t handle my medical care. Some guy sitting behind a desk who knows nothing about it is making decisions.
I will never allow someone to force me to taper my medication again.
I’ve been through the whole thing and I’m fighting to come out the other side. I’ve been able to do some really amazing things with my glass art. I want to be that person all the time that I am when I’m creating my art or talking about it.
The medication I get sometimes doesn’t cover a lot of my pain, but as long as I can function and have some kind of quality of life, I’m OK with that.
I lost so much because of all of this. Right before my initial accident, I bought my first home all by myself. It was amazing and had a whole acre of property with beautiful gardens.
I held onto that as long as I could, but it ended up going to the bank in 2008.
I lost the career that I loved and had worked so hard to get into. I lost an amazing husband. At the time this all happened, my children were in middle school and it affected both of them negatively.
One I have spent the last several years rebuilding our relationship, and the other was traumatized by sitting in the emergency room with me for hours and hours and hours.
As I mentioned before, I completely isolated myself and my family, they know very little about this. Right now, one of the biggest relationships I’m trying to continue to rebuild this with my brothers and their families.
Every month I have prescription anxiety. Within the last year, I changed pharmacies and it has become much better after bad experiences with a previous one that made me jump through hoops.
I would run out all the time because the earlier pharmacy caused unnecessary problems, and then start to withdraw. I am on the lower dose long-acting and a lower dose short-acting—and I need the pain relief that it provides.
As patients are tapered off their opioid medication, you’re going to have people committing suicide because they can’t handle the pain anymore. There has been many a night that I lay there awake miserable.
And what can you do? You think those thoughts. I will not lie; I’d never do it, but I have thought those thoughts.
You can’t handle the pain or you’re being treated like garbage by your pharmacy and they’re playing games with you. Your doctor doesn’t listen so you have to be your own advocate.
This is what our lives are really like as chronic pain sufferers. We don’t want medication. We don’t want to be on it.
I would love to go back 15 years. I’d love to have my life back. And have my career back. But I can’t.
And that’s what we have to deal with; all of those things in addition to this war on opiates.
We’re right in the middle of it. More people will die.
Erin Smith is a glass artist and chronic pain patient who lives in Connecticut.
The views expressed are the author’s own.
With thanks to The Doctor Patient Forum.
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