Post Acute Withdrawal Syndrome

I took a pill in a pizza, because my back pain was so bad.
And when I finally got sober, I felt 10 years older, but f*ck it, what choice did I have?

You don’t want to be high like me
Never really know why like me
You don’t ever want to step of that roller-coaster all alone

All I know are sad songs, sad songs, darling, all I know are sad songs, sad songs
— Mike Posner with a little help from me.

I had no idea how bad this chapter of my life would be, the getting off of the pain medicine part and recovering from that. If I had known, could I have gotten through it? I’m not sure. Knowing how bad it would be would not have helped. In fact, the incorrect idea that my suffering was going to be over by Saturday got me through the first half of my titrate. A titrate is the process weaning off. 

Halfway through my titrate, the night terrors started. They went on for years. I had such bad GI distress, I went to the gastroenterologist to see if I was dying. That went on for years.

I could wake up in the morning crying, after being up much of the night with withdrawal insomnia. My feelings were getting hurt over nothing, anything and everything, which made me feel crazy because I knew they were not appropriate emotional reactions. And yet, they were unstoppable and running me over like a train, ripping my limbs apart on the tracks.

I pretty much lost the run of myself. Any illusion that this would be easy was gone. I’d begun to figure out what the doctor meant when he said I might never be able to get off. Funnily, no one mentioned how bad it is once you get off completely. I guess people who know that do not have the heart to tell you. It would be too cruel. I thought I only had to make it to zero. Zero is the beginning. Post Acute Withdrawal Syndrome. Ouch.

How to keep going?

Connect with your inner bad-ass and endure.

In the midst of the agony, you do get the pleasure of getting there, the pleasure of taking your life back and moving on. You are a slave to these pills, and you don’t want to be. That is what they do to you. It’s not a choice. They are extraordinarily powerful on the human body. You have to power through. You have to keep trying. Cut back and keep lowering. Then scream and lower some more. That is the way out. You have to stop taking them and ride out the adjustment. It is going to hurt. 

After I hit zero, the real suffering began. Acute withdrawal was a warm-up. I understand why people cannot stay off. I understand why people leave detox or rehab, overdose and die. It really is impossible. I am speaking very bluntly here because who does it help if no one understands what this will take?

I desperately searched the internet at night when I was in the horrors of drug withdrawal. I found little that was honest or inspiring. Just a lot of commercials for bullshit rehab. So I am laying it out here because I would have appreciated knowing. I hope it will not be this bad for you, and it may very well not be. But do not expect this to be fast or easy. Get out your shovel and figure out how to dig deep. You will get the hang of it.

For me, opiates were not pleasurable. I would take my pain drugs, usually only at night, but sometimes by late afternoon, and I would often think, “This is a really big high. It’s pretty fake and stupid. I wonder if I will miss this.”

Yes, I did miss it. At least my brain did. Like a fiend. For a long time after I was off, I would have a drug craving, and this would kick off another round of what I had gone through in acute withdrawal: insomnia, spasming legs, nuclear stomach aches, sweating and shivers. In between those cycles, which would last for days, I was so exhausted and down with a hollow, endless sort of depression, I couldn’t bear it.

Even though I had drug cravings, I never once had an urge to take one, because I fucking hated them so much, more than ever after finding out what it took to get off of them. It never crossed my mind to go take a Vicodin or bit of morphine to ease the withdrawal suffering. Where was that going to get me? Going in the wrong direction! Ugh, who has the time for that? Not me.

At one point during my titrate, near the end as it kept getting worse, my husband suggested I have a little extra Vicodin. I screamed at him for that. I just screamed and screamed. But I cannot blame him. My suffering was traumatic to watch. Another reason, I have learned, that people do not make it off opiates is because those closest to them cannot endure watching the suffering and will give their loved one money to score heroin or whatever. 

When you are no longer bombarding every opiate receptor in your body with fake happy, comes the biggest fake sad, a darkness that is so empty and low it is indescribable. Your opiate receptors are starving, and the chemicals your body makes that work on those receptors do not register, after the massive external fake happy of opiates. You have to experience it to appreciate it.

The fact is that if you have physical pain, like if you stub your toe, your body immediately produces its own painkillers. You may not believe me, but try stubbing your toe after you have stopped long-term opiates. It is a very different experience. It was months into post acute withdrawal that I began to feel even hint of my own painkillers working again. 

Brace yourself for more good news. Here comes a freak show of the worst emotional horrors buried in your subconscious coming to haunt you, even if they aren’t really that bad. Maybe that is a major reason people have such a hard time staying off? From the way they turn you inside out emotionally? No one talks about that. 

Opiates work by numbing the emotional distress of physical pain. Your emotional distress from emotional pain gets numbed right along with it. Everything just seems okay on opiates. When the opiates are taken away, you feel all your emotional and physical pain more exquisitely than is fair. Like in a funhouse mirror way.

I had night terrors every night for years after ceasing long-term opiate use. More on those later. It was completely exhausting and very difficult to endure. The sleep interruptions were devastating to my health.

But for me, the drugs meant disability from Ehlers-Danlos. To me, there was nothing sexy ever about taking them. In fact, I always hated and resented the drugs. So there was never a question in my mind about enduring the withdrawal, the adjustment after, finding whatever I could to help my body heal from and moving forward with my life. No question at all.

I went back to the addiction psychiatrist. He said mine was just about the worst post acute withdrawal he had ever seen and did I want some anti-depressants. I guess I was so sick because I have Ehlers-Danlos, and I am very severely affected. My brain and nervous system were pretty beat up from EDS, aside from the opiates. I already have autonomic dysfunction, and now the opiate withdrawal had turned my nervous system upside down. (sigh)

I was not an addict.

That was the opinion of every doctor I saw. An addict has a psychological compulsion. I only took my drugs for physical pain, although if ever I was upset not from pain, I knew I’d be in unbearable physical pain soon enough anyway, so my emotional pain could wait for some relief. Bit of a blurry area? Maybe.

Even though I didn’t shove drugs in my mouth for emotional reasons or for fun or to relax, even though I wasn’t an addict, it didn’t matter.

I was destroyed by the withdrawal, a stranger to myself and disoriented in the world, after so many years of numbing with the poppy flower. Oh well.

This was also my first experience at life having my Ehlers-Danlos treated. Without my C shots, I was too sick to care about much except dragging my tired body across a room. What a time to be well enough to function. Oh well. 

Other than the fact that I could stop taking the drugs (this is where addicts have the harder time), I completely related to addicts and spent time talking to them, reading their books, trying to find out how drugs had changed them, as I felt changed forever and needed to understand how. Thank you, addicts. I had no one else to guide me.

Actually, without my calm, zero-tolerance for drama life, without the kindness and understanding of my doctor, my husband and my physical therapist, I do not think I could have gotten through my titrate. Shut down the drama if you are coming off drugs. Seriously. Cut it all off. You can make new friends. You can find a new lover. You can get another job, house, car or anything. It just is not worth it. Cut off anything you have to. This will take everything you have. Stay focused. 

I found psychotherapists to be unhelpful and counterproductive. None I saw understood that this was a medical and physical situation, or that the medical opinion on me was that I was a not an addict, or that I was someone who has a disease that involves pain. They are confused about these areas and treated me with suspicion over my drug taking. The fact that I had actually stopped taking the opiates was meaningless to them. I think the wacky old-time religion that is AA has poisoned the thinking on drugs. It also might be good if psychotherapists had some education on the human brain. Medical doctors all offered me hearty congratulations and admiration. I got terrible advice from psychotherapists. I had to defend myself for taking drugs I was never addicted to that I was no longer even taking, that I had been taking for a legitimate medical problem. It was unbelievably bizarre and not worth my time and energy. As much as I would have liked support from a psychotherapist. I stopped trying to get it. I just needed a little sympathy. Oh well.

This was a profound chapter of my life. It’s hard not to cry as I write this. I have the utmost respect for anyone who quits an addiction to anything. ❤️❤️❤️❤️


We are both worn out from PAWS. See the strain?

We are both worn out from PAWS. See the strain?

I will tell you something else.

I hate bullshit encouragement. I hate the American need to smile real big and pursue happiness and demand a happy ending. I hate positive thinking. I hate acceptance. I hate inspiration. I hate being told to meditate or breathe through it. I hate finding meaning. 

So, what I am about to tell you comes from no need to sugar coat anything or make any promises that any of this is worth it.

Way on down the line from this, I have found that I have a greater appreciation for beauty and pleasure and for the gift of another day of life than most people ever will know. I am very very grateful for that. My life is profound to me, my experience of  is profound to me. What else do we ever really have, after all? The depths of our experiences, and also the experience of love.

Even with all the pain that has soaked my entire life, and this particularly unfair and brutal chapter of pain, I regret nothing.

French singer Edith Piaf had undiagnosed Ehlers-Danlos.

French singer Edith Piaf had undiagnosed Ehlers-Danlos.

Edith Piaf’s mother was a prostitute. Her father was a contortionist who performed on the streets of Paris. She had a very disadvantaged but dramatic life and became a great artist.

Look at that beautiful face. It looks so EDSish. She shot up morphine because knitting hurt so much. People make movies about her and tell her life story accusing her of being a drug addict. After many years of self-medicating her joint pain and insomnia with alcohol and drugs, she died of liver cancer at the age of 47. While not exactly the current diagnostic criteria, that is enough for me to posthumously diagnose her with Ehlers-Danlos Syndrome.

“Non, je ne regrette rien” is a great song.

I regret nothing either, Edith.