Health & ME/CFS, This Crazy Life

Walking Through The Fire (Quitting Opioids)

Ash
Walking through the Fire.
Walking through the Fire.

Frank Talk On Pain and Pain Meds:

An irrational post about how opioid withdrawal makes you irrational… a rational version I’ve been trying to make coherant for days is coming. Eventually.Right now, I am really angry. Really, really, angry. At myself.

Mostly, I am angry because I am adrenaline dumping, and I know that, but just the fact that I am adrenal dumping makes me angry. At myself.

See, I made the decision to quit opioids in favor of LDN in something of a rush. I had been humiliated by the substitutes for my PCP when she was out on maternity leave. She’s awesome, and has been doing my pain management for years, and neither she nor I were expecting problems.

But there were. And I was treated like a drug-seeking addict. Which I’m not. I’ve been the model, compliant, chronic pain patient.

So I was humiliated, and worried I was going to run short, and hearing all these good things about LDN, so I just said, “fuck it, I’ll quit!”

Just like that. With scarcely any research into opioids, or withdrawal, or what to expect.

I had no clue just what a mental, emotional, and psychological firestorm I was walking into.

Everyone knows opioids causes physical dependance, and everyone who decides to quit them knows there will be some horrendous physical withdrawal symptoms.

I didn’t know, though, that for everyone who goes through withdrawal, however slowly (I’ve done it in steps, and stalled at 17mg), it is a crazy rollercoaster emotional ride.

In acute withdrawl – when taking those steps down – first comes extreme anxiety, nervousness, the restlessness of a caged tiger, irritability and extremely irrational anger.

Most importantly, I didn’t know that the wild anger (and there’s a lot of it) and waves of fear – the “I can’t do this!” panic – is caused by adrenaline dumping – the “fight or flight response.”

That little nugget was hard to come by.

Now I know that the repeated acute withdrawal caused by “stepping down” my dose every week or two left me with some serious adrenal insufficiency issues. Issues I’m still dealing with, and will be for some time.

I didn’t know Opioids are such psychoactive compounds.

They affect far more than just our perception of physical pain. When you decide to quit them, it affects many aspects of brain functioning and neurotransmitter levels.

Many people turn to illegal opiates, whether Oxycontin bought off the street, heroin, or whatever, in an effort to numb themselves from the painful aspects of life. In getting high, they don’t have to feel the pain – not even emotional pain.

But this effect of opioids on our brain, on our emotions, this numbing, this “emotional flattening,” also affects those of us who aren’t using opioids to get high, who are using them only for physical pain. The effect is so slow, as our doses are slowly increased, that we often don’t even realise anything has changed.

To make it crystal clear for anyone who hasn’t been following my saga, I have never sat around feeling “high” from my pain meds, because I have taken just enough to take the edge off my physical pain. There has certainly been nothing like a “pain-free” day, because I didn’t want to take a big dose – I rarely asked for increases in my daily dose, despite the fact that tolerance builds up very fast. But I’ve been on them a long time, so was taking a pretty substantial dose when I started this process. I am physically dependant, not addicted, and there’s a big difference.

I touch the fire and it freezes me
I look into it and it’s black
Why can’t I feel?
My skin should crack and peel
I want the fire back!
– Walk Through The Fire

Over the decade I have been on opioids, I did notice that my emotions were flattening out: I rarely got angry, or truly happy, and somewhere along the way, I pretty much stopped crying.

I did really wonder about that last bit – there has certainly been plenty to cry about. I reasoned that I was just resigned to my situation, that I had accepted the unacceptable.

Being “flat” was an okay place to be, given all the loss of the last 10 years: the loss of functioning, the extremely reduced quality of life one has when housebound, the horrifying changes in my body I see when I look in the mirror and allow myself to really see, and personal losses, too.

There were moments when it would hit me, and I wrote about some of those moments. After a few hours, a day at most, though, I would just go back to being flat.

But when you start to taper your opioids, suddenly everything rushes in – everything you didn’t feel while you were taking them.

And then there’s PAWS

Over 90% of people who quit opioids develop PAWS: Post Acute Withdrawal Syndrome, aka Prolonged Acute Withdrawal Syndrome.

PAWS is what happens when your brain is playing catch-up. You may have gotten entirely off opioids, or, like me, gone down too fast, and be “stuck” at a low dose, experiencing “milder” – but still very significant – withdrawal symptoms.

PAWS can last months, or even years, and usually comes in waves – you may be fine in the morning but by afternoon, you have been dumped back into withdrawal again, or fine for a few days until another wave catches you off-guard.

And PAWS is that emotional firestorm, along with waves of physical withdrawal symptoms, too.

Imagine if your brain is a mass of electrical wiring, and opioids have been providing “insulation” for years, and then suddenly the insulation is stripped away – the sparks will fly!

I thought I was going to avoid PAWS. After all, detox centers do it in a week. I was planning on 2 to 3 months. Surely that would be slow enough, right?

Wrong. Once again, I should have done more research. It wasn’t. Not by a long shot.

It will take months for my brain to re-balance itself, especially since I’ve been on opioids for a decade.

Nifty knowledge nugget: people in PAWS often meet the criteria for being Bi-Polar. I can vouch for that.

Oh, and PAWS also causes significant cognitive impairment – something we ME/CFS patients already have in spades. Disjointed thoughts, memory loss, inability to concentrate, insomnia – you name it – all on top of the existing cognitive impairment!

So, yeah, I’m angry at me, because I’ve spent the last 6 weeks in heavy duty PAWS, coupled with adrenal crisis.

So this is what it is for me: it’s everything I didn’t feel for 10 years. All at once.

A jumbled up mess of anger, sorrow, anxiety, grief, fear, rage, depression, mourning, and, very occasionally, a brief glimpse of happiness.

Along with all that, thoughts fragment, and shatter in all directions. At times, I am manic, and at times, I’m just a blank slate, as my overloaded brain shuts down.

Every day is different, and sometimes, every hour is different.

It can hit very fast, and I call it “crazy-brain.” It’s usually accompanied by a big wave of physical withdrawal symptoms, ones that make me want to crawl right out of my skin. I often have a hard time thinking at all, even composing words into a sentence.

There are just feelings. Often, very uncomfortable feelings. Dark feelings. Not associated with any particular event, or memory. Just waves of darkness and black moods.

And I am caught in the fire
At the point of no return
So I will walk through the fire
And let it
Burn
Let it burn!

When I understood what was happening to me, where these feelings were coming from, I decided that trying to block them out, or ignore them, was not the way to go.

This is a fire I have to walk through – because I want the Fire, the passion, back in my life.

These are feelings I should have been having, but didn’t. Repressing them isn’t going to make them go away.
But maybe embracing them will.

So that’s what I’ve been doing.

Sometimes, I listen to music, very loud. I have a playlist I actually call “neural overload.” Something about familiar songs, the sound reverberating in my ears, helps get me through the physical withdrawal – the feeling of ants biting me all over, of rats gnawing on my bones… my mind can’t process the signals of the phantom pain and the music at the same time… and the darkness of the music matches my mood, gives it focus. Like when you have a heartache, and listen to the saddest songs.

All I know is, it helps.

So this is me, walking through the fire.
This is my brain on crazy.
I will get through it. I know that.

My adrenaline has run out. I’m not angry anymore.

I thank those of you who are my much neglected friends and soul-family, who have wondered at my absence from your life, and who have sent words of encouragement. You all mean the world to me, and I’m sorry I’m not able to be there for you right now like I would like to be. Not to worry – I’ll be fully back when I’m done walking through the fire, and if you need something, just shoot me a facebook message.

Much Love to my friends, family, and tribe.
Ash

13 thoughts on “Walking Through The Fire (Quitting Opioids)”

  1. Oh Ash, I ache for your pain and sorrow. I’m so sorry you are going through this, for all the losses, for all the hardship and heartache you are enduring. Keep doing anything you can. May you have peace, wholeness and better health. Thinking of you often.

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    1. Thank you, sweetheart. I’m doing quite a few things, supplements and the like, meditation (trying to anyway – it’s always been so easy but sure isn’t when having an adrenal dump), deep breathing, etc. I plan on a follow-up post with things I’ve found that have helped.
      *gentle hugs* and deep *gratitude* for your support. ❤

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  2. I love you Ash and if you ever need or want to talk, I am here for you. If you need silence and space I also respect that. Now is the time to think about yourself, there will be time for others when you have healed. If you had known all these things you may have never started the process and I am so proud of you for doing that. Your sisters are here for you, always. You know that I’m sure but Michelle and I are with you every step of the way. If there is anything I can do, please let me know. Love, Laurie

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    1. I know you and Michelle are there, all of us walking through our own fire at the same time, and it means more than words can say. We are connected for a reason, and can be support for each other – that 3-legged stool I mentioned (can’t remember if that was on your blog or her’s).
      I Love you, Laurie, and I can feel you there, shining your Love down to wrap me up so gently, and it feels so good.
      *gratitude*
      Sending peace & Love back to you & to Michelle,
      Ash

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  3. ash, it’s amazing, isn’t it, this stuff of feelings again? it’s very hard to work it all out. i was on oxycontin for 11 yrs (about 30mg x3/day), opana for less than 1 yr and i threw it away along with all the psych drugs, one bag into a dumpster. i had no acute withdrawal. i know that’s amazing but it’s true… a few weeks of crampy legs at night; a few sleepless nights with music in my ears. but then came the feelings and they just keep coming… i couldn’t stand to be dead anymore and now i’m not sure i don’t miss it. flat was stable. i will certainly continue to follow your story. ~lt xoxoxoxoxo

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    1. Wow, Laura, that IS amazing, that you didn’t have severe withdrawal – I’m envious! And yes, the feelings are pretty amazing, too. You’re very right when you say “flat was stable” – and something a lot of people don’t really understand. Flat undoubtedly helped my youngest daughter, Rhiannon, deal with being my primary caregiver all these years, since flat meant less anger, frustration, and grief over my being so ill. I’m a lot whinier, irritable, and anxious now.

      But I think it’s a good thing I’m not flat anymore, because I need that fire, that passion, back in my life, or this damned illness is going to succeed in killing me. It’s become all too clear how desperate a shape my body is in, and I need all the passion for Life I can muster to fight my way out of this… which will be the subject of my next blog, actually.

      Thank you for sharing and your support!
      *hugs*
      Ash

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  4. I am so sorry you are going through this, Ash. I have never been dependent on opioids, but I have been treated like a drug-seeking addict when I was physically dependent on klonopin, a benzodiazepine drug. I was only taking 2mg a night, but I found that dry cutting tablets gave me extreme withdrawals that I was unable to handle, so I did water titration. It took me two years, but the taper was so slow that I did not experience withdrawal symptoms, so it was worth it to me.

    I am now taking LDN and I honestly believe it is helping me. All my lab tests improved. My doctor and I think it is because the LDN is helping inflammation.

    If the withdrawal symptoms continue, you might want to check into water or milk titration. It amounts to crushing tablets, mixing the powder with a liquid and measuring so that you take a tiny bit less of the drug each day. It’s tedious, but it is a lot better than the withdrawal symptoms I suffered with dry cutting.

    Mostly, I just want to say how sorry I am that you are going through this, and I hope it ends soon for you.

    Patricia

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    1. Thank you, Patricia. A number of people have suggested water titration to me and I will likely give it a shot for the last bit – when I’m ready for another step down.

      For now, I decided to go back to all oxycontin, which is extended release, rather than oxycodone, which is short-acting. While I technically raised my dose from 17.5mg to 20mg, switching to oxycontin (lowest tablets are 10’s) actually triggered some more withdrawal. Likely because I am still plagued by diarrhea from my adrenal mess, and have malabsorption on a good day. So, I’ve been adjusting to the oxycontin, which has evened out the waves of PAWS somewhat, although it’s taken me several weeks to get used to it.

      Another option I’m considering is very slowly stretching out the time between oxycontin doses, when I feel my body (and mind) are ready for another step down. Since oxycontin releases slowly (if I can get the diarrhea under control), I could simply stretch it to 12 1/2 hours between doses for a couple weeks, then 13, etc.

      It has certainly been a learning process…
      Thank you for the support, and big hugs!
      Ash

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  5. Dear Ash,

    I hope as I write, you are okay. I’m sorry it’s so hard to come off the medication. I wish it wasn’t. With all the walking on the Moon business and space machines flying around, you’d think we could have come up with better pain management for human beings. Maybe we will one day.

    (I used to wonder the same thing about mops and space exploration. Like why is the mop still so antiquated, but then, over the past five years, I’ve seen mops turn to true cleaning aids that make sense).

    I’m still very surprised when I read your posts about withdrawal. I tell you, I have so many of these symptoms, and I’m not bipolar either (I saw where you mentioned that). …I can’t even compose the rest of this paragraph and I hope my little analogy, although quite valid, may make you laugh a little.

    That’s life lately. My brain just stops. I keep thinking if only… if only I could get a break; a vacation; “a time away from life,” as Neil put it the other day as he watched me trying to survive myself and all the things happening in my body.

    I read the comments from Laurie too. I’m glad we three have a connection. One day I hope we get together. I always think of the movie, “In the Company of Strangers,” when I imagine us three together. Remember I told you about it. I watch it from time to time, or I used to. It isn’t always available in the US and the title is a little different, but I watched it on Won Cinema (a very unique place, managed and owned by CZBZ, a friend to me and who keeps her sites up top notch, in case you want to visit and watch free movies. And Laurie too!).

    Well, my brain power just left my friend. I must stop here.

    I love you, and am thinking of you. I think of Rhia too. I wish you both the best of days, and that with each day, comes hope. Hope sure does take you a long way.

    I wish you healing mostly. I believe in you. I believe you have the potential to get better. I was unsure of that before, but you have the strongest will power! I have once imagined you better, and offering classes of wisdom to those of us who are walking in shoes you were once in. It was a nice vision.

    Peace.

    Love,
    Your Spirit Sister,
    Michelle.

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    1. What a lovely letter to our Ash, Michelle. When I think of the three of us, I am the opposite. I don’t think of the “Company of Strangers” I think of Home. Our own spiritual space together from all over the universe. Brought together by the universe for a special purpose.All my life I have hated triangles, which is why this led me here. To learn to love triangle sisterhood. You, me and Ash. Pure love and support. I always felt left out when I was a girl but I am not the same girl, I have grown up to be a new me. I too, applaud our Earth Mother, Ash, I just wish I could do something to make it better. Love, Laurie

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      1. Thanks Laurie,

        And, Ash, tonight, I’m thinking of you again.

        I haven’t been able to keep up on FB, but have you both in mind.

        Also, the movie I mentioned Laurie, well, the women become very close. It is quite an intimate movie in the sense that their private thoughts are shared and they must survive to make it back to their homes as the bus they were on broke down. It’s just the feeling of the movie that reminds me of Sisterhood 🙂

        I’m not so great tonight, so I have to stop here.

        Wishing you both healing, as I hope for it myself.

        Love,
        Michelle.

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        1. I Love you girls, my sisters. I’m tired from a doctor’s visit yesterday and blogging today, but just wanted you to know I’m thinking of you both, and sending much Love and healing thoughts.
          Blessings, dear ones…
          Ash

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