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I went to my PCP (that’s Primary Care Provider for those who don’t know) last week for my monthly visit, and a new nurse takes me back to the room. It went something like this…

Her: “You’re here for a follow-up for…?”

Me: Chronic fatigue Syndrome.

Her: Oh, fatigue. So you’re tired a lot.
(As she starts looking for the computer’s questionnaire for “fatigue” patients…)

Me: No. Chronic. Fatigue. Syndrome. It’s an illness, and it’s in there.

She continues sorting through, finally finds it, where I helpfully point out it’s listed as just “Chronic Fatigue,” but reassure her it has the right questions. The screen is huge, and I’ve done this so very many times…

She begins reading through the questionnaire the computer provides:

Her: And when did this start?

Me: 1999
(by now I know she’s NOT in the right place, she’s doing a new patient questionnaire, not a follow-up…)(sigh)

Her: And what brought this on: stress, viral infection, accident, yada yada yada…

Me: (hard stare)
Me: (thinking: do I really want or need to get into this with this ignorant nurse who couldn’t care less? I have a blazing migraine and ear infection and just want to see my most excellent doctor. I am not in the mood to patiently educate yet another nurse today.)
Me: Possibly a lot of things, but even scientists don’t know for sure what causes it.

Her: (she looks up briefly, startled)
Her: Oh… Is it relapsing, constant, or getting worse?

Me: Constantly getting worse.

Her: Are your symptoms worse after physical activity?

Me: Oh, are they ever.

Her: And do you have: unrefreshing sleep… impaired cognitive ability… decrease in activity level that interferes with normal activities… migraines or other headaches… muscle pain… weakness… gastrointestinal pain or bloating… etc etc etc

She glances over and sees me nodding my head, yes, to everything.

Her voice has gotten softer and lower as she’s moved down the list, and she trails off before she gets to the end. She wound up not asking me all the questions, and I should know, having done this once a month for years.

Me: I can make it easy for you. I have every single one of the dozens of symptoms on the list, with exception of diarrhea.

She looks at me with surprise.

Me: Next section: Yes, medications help, to some extent, but not enough.
Me: Yes, they cause lots of side effects, such as nausea, heartburn, headaches, etc. I take meds to deal with the side effects of my meds, but no, it’s not nearly enough. I’ve been housebound since 2007.

Me: Next section: yes, I’ve tried supplements and they do help, as does meditation, massage, and physical therapy. Acupuncture was questionable.

She is busy clicking boxes.

I really couldn’t tell, when she left, if she was upset at the thought of an illness that she’d never heard of causing such issues for such a long time, if she was overwhelmed, or just didn’t care. She didn’t look up when she stammered, “I hope you get to feeling better soon.” But as I reflect back on it, her shoulders were hunched, and she kinda looked like a dog who has been beaten… or maybe like someone about to cry. I honestly don’t know. I wasn’t mean or snippy, I was just matter-of-fact.

This is what it is.

I rested my blazing head down on the edge of the table, closed my eyes against the too-bright lights, and practiced my deep breathing while I waited for my doctor to come in. I couldn’t wait to get back home, away from the lights, the ordinary sounds of life, that brought such searing pain to my oversensitive brain, back into my girl cave and the dark and quiet… one breath, one moment, at a time… but how I longed to set foot in a store, or just ride in the car without sunglasses and a scarf over my eyes…

But, This is what it is.

And what it is, is known as Chronic Fatigue Syndrome in the U.S., although in other countries – and by the WHO – what I have is ME: Myalgic Encephalomylitis.
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It’s funny, what I forget, even now, after so long being sick. Sometimes, in my mind, I am still strong & healthy, as if time simply stopped passing when I became ill. Sometimes, it really feels that way, as if time did stop, and there is only The Before Times and a giant blur that came after.

But it’s been 15 years this month.

I had relapsing and remitting symptoms for a couple of years, and then in Dec, 1998, ME/CFS & FMS (and chronic Lyme) came to stay. I was diagnosed in 1999.

I just now, today, realized it was now actually the month of December, and the year is 2013, and that means it has been 15 years.

Time passes very differently for those of us with ME/CFS. I often am surprised at what month it is, or how long it’s been since something has happened. Sometimes I’m off by years when asked, “How long since…?”

One of the curses and also dubious blessings of this illness is memory loss. I remember things that happened before I became ill far, far, clearer than things that came after. Those 15 years are a fog, a ghostly mist through which I catch glimpses of events.

Sometimes, something or someone will trigger a memory, and something totally forgotten comes back. Sometimes, no matter how hard someone tries to get me to remember something, even some meaningful and important event, no matter how desperately I grasp for it, there is just nothing there. A ghostly mist where the memory should be. A blank slate.

But the not-remembering, the fog, and the complete lack of a sense of the passage of time, those things can be a blessing, too. If I had to really remember all the pain, misery, and suffering, of those 15 years, the frustrations, the losses… I’m not sure I could handle that. It is better that it is a blur.

Sometimes, because it seems like the last 15 years really didn’t happen, and I’m still that strong & healthy woman I was at 35, I forget, and do stupid things. Things my now-fragile body can’t handle.

Today, we are in something of a crisis as we are preparing for a severe ice storm, and I am totally stressed out. This stress is a huge problem.

My body’s been dumping adrenaline, making me think I am stronger and can do more than I am or should. It’s had this adrenaline dumping issue for months now and we haven’t been able to track down the cause.

Suffice it to say, whenever the slightest bit of stress happens, my body dumps adrenaline and prepares for “fight or flight.” This has led to a lot of pacing around the house like a caged tiger, sleepless nights, angry and irrational outbursts, a “manic & frantic” mental state, and is, in general, driving me and my very patient caregivers absolutely crazy.

Ice

The last 10 days have been incredibly stressful, with a severe ice storm last Tuesday & Wednesday leaving damage behind that I had to deal with, and now a second, probably even more severe, ice storm looming on Sunday.

I have pushed way far through the “energy envelope” we with ME/CFS are supposed to stay within, for day after day, goaded on by a flood of adrenaline.

And I’ve done a lot of really stupid things: walking around in the icy woods assessing damage, flagging down electric company workers…

I’ve been home alone for a week, as Rhiannon’s couple days’ visiting with Ben’s family turned into a week when she caught a terrible cold that I really don’t need to catch. So, I’ve been dealing with a lot of crap on my own that I normally wouldn’t – not just daily living, but getting power lines fixed, both at my house and a neighbor’s retreat cabin, being without cable for days and getting that fixed, etc.

Today’s really stupid thing?
When the electricians who are installing inside wiring for our emergency generator arrived, Kodi, our 125# Tibetan Mastiff/Rottweiler, went ballistic. He is head of security here, after all, and there were 3 people on the porch. His job is to protect me, and he takes that very seriously.

Kodi

2012 – He’s filled in considerably since…

The flood of adrenaline hit. I had to get him in the bathroom so I could insure their safety. I didn’t even think about it. I reached for his collar and he yanked himself away, rearing up like a wild horse. I lassoed him with a leash, and oh, he fought, just like the horses I used to have, before finally giving in.

Kodi understands something I still don’t, after 15 years sick, and 3 or so at this precariously low weight: He’s an incredibly powerfully built, 125 pounds of solid muscle, linebacker of a canine killing machine, and I am 107 pounds of skin, sinew and bone. I am not that physically strong woman anymore, who could wrangle a horse.

He is a dominant-aggressive dog by nature, and it took a long time and a lot of hard work to get him to submit to me as his pack leader. He still sometimes puts up a fight about that, especially when I’m in the frantic-manic mind-state that adrenaline puts me in, rather than the calm-assertive state I should be in.

It wasn’t until my adrenaline level dropped that I even realized my hand was hurting and damp. Leash burn, so bad it had blistered open and was oozing pus. And then pain in my fingers, my wrist, my back…

“What the hell was I thinking?” I asked myself, as I inspected my hand, noting yet again the hollows where muscles used to be. I wasn’t, I concluded.

Adrenaline fueled, my mind told me to take care of the problem.

Forgetting I wasn’t still that tough & strong woman who not only wrangled horses but also lived with wolves, I did.

Now I will pay the price. Hopefully, this time the lesson Kodi has taught me will stick, and I will approach him differently.

15 years I’ve been sick, and yet, still, there are times I don’t remember that.

And I don’t really know if that’s a good thing, or a bad thing.

But if ever I forget, and truly only see myself as this frail shell of the woman I once was, I think I would be done for. THAT woman has to live on in my mind, the ultimate goal, in order to keep going, keep looking for ways to get better. I will never be quite HER again… I will be older, wiser, and emotionally and mentally a hell of a lot tougher than I ever was. But SHE has to remain the goal, unforgotten.

I think that’s worth a little leash burn and sore muscles.

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In my last post, I said I wanted the fire, the passion, back in my life. Over the last few weeks, I’ve done a lot of deep thinking and reflecting, while struggling every day just to keep my ship from sinking.

Well, I’ve come to some harsh realizations and conclusions, and I’m feeling pretty damn passionate.

It has become quite clear to me that the time has come for a full scale war.

A take-no-prisoners, risk-it-all, war.

It is that desperate.

My body is that desperate.

Ravaged by years of chronic illness, my muscles have withered away to nothing.

Pillaged by viral invaders, my immune system doesn’t know which end is up.

Overwhelmed by colonizing microbes and leaky gut syndrome, my gut doesn’t know food from foe.

Every resource in my body has been drained, thrown into the war effort against ME/CFS for long year after long year after long year… I was diagnosed in 1999, but sick well before that.

Hasn’t there been full-scale war before now, you ask?

Yes. At times.

But also times of resignation; of trying just to hang on, hopeless of ever improving, just patiently awaiting the seemingly inevitable. The slow, slow, spiraling downward, so slow as to not provoke a passionate response. Too tired to hope, sick of changing my meds, or trialing this alternative therapy or that.

You could call it “patient burnout,” and I suspect many of my fellow patients know just what I’m talking about. The year after year of trying to hit on a combination that would stop the downward slide without success, until you just stop really giving it your all.

But the last few months, the slide hasn’t been slow. It’s been alarmingly fast.

Now I have this looming sense of being back-against-the-wall, it’s-now-or-never. Live – really live – or die.

Because I know my body simply can’t go on like this.

It can’t sustain the fight much longer the way it has been this Summer: the periodic adrenal crises and crashes; the repeated episodes of diarrhea; the weakness and shakiness; and continued loss of muscle mass. I have only to look in the mirror, or to look at the deepening indentations in my hands, feet, or wrists, to look at the starkly showing breastbone, collarbone, and ribs, the sagging skin, to know that this is simply unsustainable.

I’m not being overly dramatic.

I’m being realistic.

And it’s not sustainable – or fair – for my youngest daughter, Rhiannon, either.

My elder daughter, Terra, is 29. She has worked hard and built a life for herself, with a career she loves in the military, and graduated magna cum laude from college while working full-time. I’m couldn’t be more proud of Terra and her many accomplishments. I’m also relieved that she has established such a rewarding and fulfilling life for herself, and that she is an extremely strong and independent woman.

Whatever happens to me, Terra will be okay.

But Rhiannon has been carrying the weight of being my primary caregiver for 7 years. She is only 18 1/2 years old. Rhiannon has mild ME/CFS herself, but more urgently, her life is on hold right now. Because of me. Because I am so incompacitated, and as I have gotten even more so over the last few months, her burden has gotten even heavier.

And that is simply unacceptable.

It breaks my heart, every damn day.

Rhiannon deserves a life, too, one where she can go and do things without worrying I am going to literally die while she is gone. Without worrying that I am going to die before she has gone to college, gotten married, and established a life for herself. Without worrying that she is about to become an orphan – her father died just over a year ago. And without the stress of my illness making her even more ill.

And you know, I would really like to have some years of life back that aren’t being lived out of bed.

I want to garden again. Walk in the woods. See my grandchildren be born – and they are not planned for a number of years yet.

Rhiannon promised me a trip to Chincoteague & Assateague Islands, to see the wild ponies, something of very special signifigance to me. We were supposed to go this Summer, to celebrate my 50th birthday.

But I haven’t left the house for the last 3 months except to go to the doctor.

Issues like these, they help bring the Fire back into your heart.

So what’s there to do that hasn’t been done in the past?

Plenty!

REFUSING to surrender to the Living Death is a start. Attitude is important!

Get this, ME/CFS! I’m not done living my life yet! I’ve got things to do, people who need me, and I’m not just going to go quietly into the dark!

Every War Needs a Good Stretegy

Strategy is vitally important, and at this late stage in The War, that means pulling out all the stops, and a lot of thinking outside the box.

It means research, reviewing all my labs, running my clinical history over again, and connecting all the dots.

If the majority of rx meds have failed to do much to make a difference, this is where I look elsewhere for answers – and for weapons to add to my arsenal.

In May, I found one big clue, one big fat juicy hint at the Enemy’s original weapon, the one that caterpaulted me into this mess, a toxin we’ve all been exposed to. Knowing that, I know how to undermine it, and begin to repair the damage.

If the invading hordes of viruses and microbes are resistant to the meds I’ve taken for years, then I hit them with something new and unexpected – this is guerrilla warfare, and the weapons I need come from the land, from the Earth, the trees and plants: Herbal Anti-Virals & Anti-Fungals.

Heal the gut and my body can absorb nutrients again. Just as importantly, my immune function can be restored to proper functioning. Since my own army of beneficial bacteria has been annihilated, I’ve recruited new ones – with something far beyond yogurt or standard probiotics, and have already had a “healing crisis,” showing that my immune system will respond.

When reviewing my labs, I was reminded I have both MTHFR mutations – and the full ramifications of those are something I’m just beginning to understand, but they sure are one big piece of the puzzle (and one many of us have in common).

There is a LOT that needs healing, a lot of systems in disarray, and if I’m neither eating correctly because of PAWS or digesting correctly because of malabsorption and leaky gut, then there are a lot of things that need to be supplemented. I’ve been researching into those, with my doctors’ help.

I’ve already found one supplement that has helped tremendously with cognitive issues, much to my shock and surprise – I wouldn’t have been able to write this post without it, and highly recommend it (I need to take it early in the day or it keeps me awake): SERIPHOS.

This is sink-or-swim.

I either figure out exactly what my body needs, thru careful research and with my doctors’ guidance, and get it and take it, or The Enemy is going to chalk up another victory.

And that’s just not acceptable.

I will not go quietly.

I want my Life back!

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Walking through the Fire.

Walking through the Fire.


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

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It's been stormy sailing... Image: Pirate In The Storm by Peter Concept


It’s been stormy sailing…
Image Credit: Pirate In The Storm by Peter Concept


As most of you know, I decided to quit opioids for pain in favor of LDN in March, and after 10 years on opioids, I began the process of tapering my dose on March 24.

Some of you have asked for an update, so, in the very simplest of terms, on the one hand, I have made tremendous progress – from 80mg of Oxycontin to 17mg. But, on the other hand, the last 3 weeks, things have been very rough – stubborn me went down too fast, and withdrawal sent my body into a tailspin, with severe diarrhea leading to dehydration, electrolyte issues, more weight loss, and kicked off adrenal insufficiency.

I also have opioid withdrawal syndrome – repeated waves of withdrawal even when I’m not taking a step down, with gnawing pain, insomnia, tremors… and the psychological impact of withdrawal on the brain – feeling periodically like I’m having a nervous breakdown and being very seriously cognitively impaired.

Right now, I’m holding at 17mg on doctors’ orders while we try to get this ship to stop rocking and taking on water.

I had wanted to wait to write an update on the process until I was done, so as not to discourage anyone from making the same decision, to triumphantly say, “Look, I did it, and so can you!”

But it’s not that simple.

Life with ME/CFS is never simple, and I guess I should have known that this process was really going to throw some curve balls at my delicately balanced system, but I wasn’t thinking that far ahead.

I had set a goal:

To go from 80mg Oxycontin daily with up to an additional 10mg of oxycodone IR for breakthru pain, to LDN, and to do it as fast as I can physically and mentally handle it – and to share this journey into uncharted waters with you.

– from “Frank Talk on Pain Meds: Jumping Off Into The Vast Unknown”

I set out to achieve it, without really knowing what I was getting myself into. I knew I had to taper the dose in steps down. But let’s face it – it’s not like there are any studies out there on underweight, severely debilitated, ME/CFS patients, who have been on opioids for over 10 years – and how long you’ve been on them matters a lot.

There’s a lot of debate about how fast a healthy person can go down “safely” without long term consequences – because there are long term consequences if you go too fast, a condition called PAWS (Post Acute Withdrawal Syndrome). Essentially, PAWS is a recurrence of withdrawal symptoms that can occur periodically for weeks, months, or even years, after a person gets off – or, as I’ve discovered, reduced their intake of – any drugs that cause physical dependance. PAWS is why many addicts relapse.

But stubborn & determined, and without understanding about PAWS (yet), I set out to taper or step down my dose “as fast as I can physically and mentally handle it.”

Withdrawal is horrible, it is hell, and even though I was doing this in steps, every single step down has meant going through withdrawal for a number of days.

“Slow It Down!”

The chorus from friends and family was pretty nearly immediate, loud and clear: “You need to slow down.” For the most part, that was more because of the emotional repercusions of withdrawal – the sporadic rages, unreasonable irritability, the jitteriness that had me pacing the floor.

In the middle of April, when my LLMD found out how fast I was going down, she was appalled, and she joined the chorus. In 3 weeks time, I had already gone from 80mg to 45mg. She told me I should go down 5mg every 3 weeks – but that sounded to me like it would take forever, and my PCP, who manages my pain & opioids, had approved my proposed tapering schedule.

I slowed down some, and lengthened out the time between steps to 10 days and then 2 weeks, figuring if I’d gone thru the acute withdrawal and my body had settled down, it would be okay to take the next step.

But every step down, the withdrawal got worse, much more intense, and longer lasting.

Hell Week

June 15, I took the step down to 17mg, and all hell broke loose.

For the first time, I had severe GI issues. I had had mild diarrhea with the step before, but this was severe, and went on for 6 days. The big problem with this is I only weighed 112# when I started this process. I can’t afford diarrhea.

The wisdom in the opioid withdrawal forums directed me to copious quantities of Immodium, which supposedly binds with opioid receptors in the gut. It helped, but I was afraid to take as much as some people said they took, so I soldiered on.

I just had to get through it and out the other side, right?

So, I dealt with it as well as I could. I worked hard to keep my body hydrated & electrolytes in balance. That was challenging, as was keeping my bp in range due to my NMH (neurally mediated hypotension) – it is normally not an issue, but suddenly it was, and my BP kept tanking, meaning on-the-fly adjustments to my florinef, and a lot more sea salt and potassium. I was scarily weak at times.

And withdrawal like this is pure hell:
The feeling of deep pain in your bones, especially arms and legs, like they are being gnawed on by rats; a burning sensation on my skin, like I’m being bit by fire ants; crushing headaches & migraines; the shaking and tremors; nausea; insomnia; restlessness that had me pacing the floor even when I was utterly exhausted; chills/sweats; and the emotional rollercoaster – and that’s the short list.

I drank gallons of kratum tea – a legal herb from SE Asia which binds with the opioid receptors and has a calming effect on both mind and body. It contains no opioids, and doesn’t make you high or anything, and is very safe, having been used for thousands of years in its native Thailand.

I also took a lot of theanine and tryptophan, two amino acids that’re helpful, valerian, skullcap, klonopin, and anything else I could think of. Supplements are my very good friend – especially when I’m not absorbing either food or my meds because they’re running thru me so fast.

It was during this week that I really should have picked up that my adrenals were in trouble, because I started having “adrenal dumps” – definite surges of adrenaline into my system, leaving me hyperalert & agitated, fingertips tingling, body ready for “fight or flight,” followed by periods of deep exhaustion.

But I wasn’t thinking clearly enough to pick that up, and just chalked it up to withdrawal. I was having trouble thinking at all.

Redux

Finally, I had gotten through the worst of it, although I was still having some lingering withdrawal symptoms.

But on Monday, July 1, a full 2 weeks after the step down, I woke up thrashing from the now-familiar feeling of rats gnawing on my bones – hard. Soon all the withdrawal symptoms I thought I had left behind washed over me like a wave, drowning me.

My gut was churning & gurgling, and had been since the night before, and really severe diarrhea set in. There were such outrageous sounds coming from my gut that Rhiannon & I took to joking that Nessie (the Loch Ness Monster) had hatched and wanted out. Gallows humor is better than no humor at all.

By the end of the day, I was feeling dangerously near collapse. I struggled to think my way out of how I felt. The withdrawal was one thing, but this level of weakness & shakiness & altered mental status was clearly another. Worryingly, my weight had plunged to 103#.

Something was very wrong – dehydration, electrolytes, or something else?

Rhiannon made up homemade “gookinaid” and I guzzled it down, along with coconut water, and I soaked in epsom salt baths (for magnesium).

The next day, Tuesday, I contacted my doctors, as the situation continued, with only a slight improvement. My LLMD could see me the next day, and both said if I got any worse to go to the ER. Rhiannon and I discussed the situation at length – and the fact an ER doctor was going to be pretty clueless about what to do with a debilitated ME/CFS patient on so many meds in the middle of withdrawal.

Wednesday, my gut had mostly settled down, and the withdrawal was easing a little. I was extremely cognitively impaired, and completely exhausted, almost too tired to hold my head up.

My LLMD patiently listened, pondered, administered IV hydration with extra minerals for my dehydration & methyl B12, took tons of blood for labs, and ordered stool tests.

Her opinion was that it was likely opioid withdrawal syndrome – PAWS – complicated by adrenal insufficiency, but she’s not one to ever overlook anything, so she’s checking many lab values and for gut infections, etc. My cortisone & adrenal supplements were increased, meds adjusted, etc.

Since then, I’ve had a lengthy visit with my excellent PCP, who concurs.

The working theory is that the repeated stress of the steps down overworked my adrenals – I already had serious adrenal issues, and this just made it worse. In retrospect, I may have been having an Addisonion (adrenal) crisis and likely should have gone to the ER – but now I know the signs of one, I will if it recurs.

Both doctors ordered me not to take another step down for a month.

PAWS

I am ever so slowly recovering, but waves of withdrawal keep washing over me – the gnawing pain, the ants crawling on my skin, diarhhea, and the freaking brain.. opioid withdrawal sure does do a number on your brain, on your emotional, mental, and psychological state.

I like dog paws and kitty paws, but I don’t like these PAWS.

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I called Rhiannon, a touch of panic in my tone of voice.

I have screwed up. She made me a power smoothie before she left for shopping, and I drank it too fast.

“I didn’t even drink the whole thing, only half!” I explained.

Now, the icy drink sits in my stomach, and its chill spreads throughout my body. I have gone from warm to cold to shivering to teeth chattering to shaking all over.

It is 70 degrees outside. Two hours ago I was sitting out in the warm sun, lightly dressed. Now, I have my winter coat and fuzzy boots on, and I have hypothermia.

Most people don’t know that many of us with ME/CFS suffer from some form of dysautonomias. These are malfunctions of our autonomic nervous system – things that our bodies should handle automatically. These can affect many parts of our body. For some it affects how our body regulates – or fails to regulate – our body temperature.

Some of us also have muscle wasting or atrophy.

I have lost too much weight; most of my muscle mass, and I am struggling not to lose any more. At a hundred ten pounds, I cannot afford to.

And I cannot afford to be in hypothermia.

The shivering and shaking of my muscles is using up the valuable nutrients and energy of the high protein, RX, smoothie I just took in. I need every calorie I can consume, and every ounce of energy that I can hold on to.

Besides which, hypothermia is not a good condition for my struggling body, nor very pleasant.

I tell Rhiannon I have to get in the shower. This is beyond what a heating pad will fix.

I don’t like to shower when no one else is home. My blood pressure tanks regularly (and by “tanks” I mean 82/47, for instance). It would not do to pass out in the tub. But it’s the only thing I know to do.

Dysautonomia can also affect our blood pressure and even the amount of blood in our body – our blood volume – making both too low. This results in conditions such as Neurally Mediated Hypotension (NMH), POTS (Postural Orthostatic Tachycardia Syndrome) or OI (Orthostatic Intolerance).

During a NMH episode, the blood pressure can drop very low, often very fast, and fainting can occur. Usually, at the same time, the pulse rate goes up, putting the heart into tachycardia. There are a several different medications for NMH, POTS, and other blood pressure related dysautonomias, but they can come with some very nasty side effects.

Climbing in, I seal the shower curtain, anxious to keep every bit of warmth inside. I sit on my shower stool. I hate it, but it is necessary. I’m too weak and in too much pain to take a shower standing up.

Many of us go days or sometimes even weeks without a shower. Taking a shower or bath uses up an incredible amount of energy. Some of us cannot bathe ourselves at all anymore.

My skin is cold to the touch, cold and clammy like that of a corpse. I huddle over my legs as the hot, hot, water runs over my body.

It seems to take forever before I stop shaking enough that I can slowly wash my hair. It was certainly in need of a wash.

After 37 minutes, the hot water is running out. I’m still not sure I’m warmed up enough. I have no choice but to get out.

The skin on my thighs, on my butt, and arms, is still cool to the touch, but not as cold as it was.

One aspect of having NMH is having very poor circulation to the limbs and skin.

Emerging from the shower, I wrap tightly in a thick towel. I sit on the stool, with my head in my hands for 10 long minutes. The blood pounds in my head, and I am breathing hard.

I am dizzy and exhausted, drained and in pain. but I think I am starting to be warm again.

Too tired to move, I reach for my fone, and dictate this post, still wrapped in my towel, still sitting on the shower stool, head resting wearily on folded arms.

Now the question is, am I too warm? I listen intently to the signals coming from my body.

It has forgotten how to regulate itself. Up and down it goes: fevers, chills, sweats,  night sweats that go on all night long…

Like so many, I can’t go out on summer days when it’s over 80 because I overheat and get a fever far too fast. Getting in a car that has sat in the Sun can cause an instant fever – and an instant crash.

In winter I must bundle up extra warm against the cold.

And it seems that even when it’s 70, I must drink my protein smoothie either slowly, or on the heating pad. I felt hot when I started drinking it today.

Sure didn’t take much to change that.

These are the things that daily life with ME/CFS is made of…

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I recently hit the 2 year anniversary since I started taking Valcyte for my ME/CFS. The post I wrote detailing my decision to start on Valcyte, a pretty risky drug as drugs go, is still one of the most visited posts on my blog. That post was written Feb. 10, 2011: Valcyte: The (Slightly) Scary Adventure Begins

A number of fellow patients have asked me about this, often weighing the difficult decision to give it a try or not, so I’d like to share my experiences in a more cohesive fashion. While I’ve written about it periodically over the last couple years, those are mostly short comments thrown in here and there.

Has Valcyte helped? Yes, absolutely! I found out just how much when I had to go off it for a month.

Is it worth the risk? Only you & your doctor can decide that, but I have no regrets. I did have some complications with low cell counts (see below), but given where I was when I started, physically as well as cognitively, it has been worth the increase in quality of life.

When I think back to where I was pre-Valcyte, I remember the last few minutes of the conversation I had with my PCP about it. I had requested Valcyte based on preliminary studies coming out of Stanford, and she agreed to a trial, but she was worried (and going out on a limb for me – she’s a PCP in a big practice, and while she specializes in fibromyalgia, this was a whole ‘nother thing entirely).

As she put it, Valcyte has a “black box warning” on it by the FDA (that’s a bad thing), and is a “medicine of last resort.” To which I said something like, “We’re there. I’m circling the drain, and we have to do something. Now. And I’m not depressed, but to put it simply, I can’t go on living like this. I just can’t. It’s pointless.” She assured me she understood, and sent the script to the pharmacy, making sure I understood we’d be doing labs very often to be sure no complications come up.

Here’s a collection of my observations, as the months passed:

May 19, 2011 (3 months into treatment):

We’re giving the Valcyte a chance to work, and it is definitely working. At least, I’m seeing cognitive improvement, and sometimes I think there’s a wee little bit less overwhelming exhaustion. Sometimes. But the cognitive improvement is what is expected to come first. It takes 3 – 6 months for the majority of the improvement, and I’ve now been on it 3 months. However, there is a problem: my platelet count is dropping and is low, but not low enough that I have to stop the Valcyte. Yet. I’m finding that very depressing.

It’s as if I’ve been in a dark place a long time, and someone has opened the shades… I want to see more, interact more with life, with friends, to write, to be at least a little bit more ME. And I don’t want to give that up. But I will have to, if the platelets continue to drop.

July 1, 2011 (4 1/2 months into treatment):

Valcyte continues to help, increasing my cognitive functioning somewhat, making me more alert & aware. Physically, it’s decreased my recovery time from Post-Exertional Malaise from our weekly grocery shopping trips to 1 or 2 days instead of 3 or 4 days – a big improvement, as these things go. I’m still very sick, still bed-bound most of the time, but I at least want to do more and interact with the world more.

April 12, 2012 (14 months into treatment):
Risky Decisions, or Valcyte: the Very Scary Adventure Ends

The entire post is about Valcyte, detailing the crash of my cell counts, and how common I found out this was – thanks to the patient community. But in everyone I connected with, their counts recovered, usually quickly, and I’m pretty sure they all resumed treatment.

The Valcyte helped me, mostly by reducing my PEM, and improved my cognitive function somewhat. It was the only thing to really help at all in the last 5 or more years.

The (more than slightly) scary Valcyte adventure has ended, for now. Once my blood counts come back up, I hope to re-start it, likely at a lower dose.

We make these risky decisions all the time, we patients. Some have said they’ve “donated their body to science” while they’re still using them. I think that’s a good way to put it.

May 27, 2012 (15 months into treatment):

I’m happy to report that over the course of a month, my cell counts recovered. During that month, though, I went thru a terrible EBV flare, and the HSV which lives in my back erupted for the first time in a decade or so.

My doctor gave the okay to re-start the Valcyte at 1 tablet (450mg) a day instead of 2 a day, and after about 2 weeks back on it my cell counts were fine, and the EBV & HSV flares subsided for the most part.

Then, Now, and EBV

I resumed taking the full dose of Valcyte after a month of okay labs.

However, a couple months ago my LLMD decided I might benefit more from Famvir than from Valcyte, and as she pointed out, my EBV titers never came down.

However, despite having very high titers to EBV & HSV 2, the number of sore throats and swollen glands and viral flares definitely improved greatly from taking Valcyte.

So at this time, I’m taking a half dose of each – one tablet of Valcyte and one tablet of Famvir – as we wean me off Valcyte and onto the Famvir. The goal is to avoid a flare in the many viruses living happily in my body. Since I have a fair amount of Valcyte on hand, and want to use it up, it will take a couple more months before the switch is complete.

I cannot tell you what to do.

I know that faced with all the “black box warnings” that Valcyte carries, it’s scary as hell. But so far as I know, a fair number of ME/CFS patients have been trying it, and mostly reporting good experiences, with the occasional blip in cell counts.

It’s hard to define what the difference is, exactly, in me, pre-Valcyte versus now, but my mother may put it best when she says I “simply seem more alive.” It’s something she noticed after about 3 or 4 months, and even more so as time went on.

I’m much more cognitively aware, much more able to spend time on the web, connecting with the patient community, and keeping up with what’s going on in the world.

And in an illness we call the “living death,” that’s definitely a good thing.

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