Posts Tagged ‘ME’

Veta Collins, beloved Mom

I was doing it wrong, and I knew it. It was one year ago today, my mom had just died, but I wasn’t crying.

“Something’s wrong with me,” I confided, oh so quietly, to those closest to me, a week later. They assured me there was no right way, no wrong way, to grieve. That it would come, when it was time, when I was ready.

Apparently, that time arrived at 9 PM last night. I was thinking about what state of mind I was in a year ago, waiting for The Call to tell me she had passed away.

The dam burst, and finally, the river of tears flowed. I wasn’t just missing her any more – I was mourning.

All day today, I’ve gone through it all again, remembering the sad details of the time between her stroke and her death, writing them out. If I don’t remember them, and acknowledge them, how can I let them go?

I was in a very precarious state, physically, by the time my mom died, two months after a hemorrhagic stroke. Those months were a nightmare, watching my strong, capable, and independent mom being broken into a mere shell of herself. I suspect the mourning got put on hold, subconsciously, so I could recover from the toll the physical, emotional, and mental stress had taken on my own fragile body. Those of us with ME, CFS, fibromyalgia, etc, have to carefully and frugally measure out our energy use, our spoons. (See Always Counting Spoons if you aren’t familiar with this concept).

But there was little I wouldn’t do for my mom. She had always been there for me, through my many mistakes in life, always ready to pick me up and help me out. We were best friends who spoke most every day, and had no secrets.

She was also a real rarity, because she believed in me despite my illness, and supported me both emotionally and financially.

You might think any mother would support a sick daughter, but that’s very sadly untrue when the illness is ME (myalgic encephalomylitis), CFS (chronic fatigue syndrome), fibromyalgia, chronic Lyme. They are not understood even by many doctors other than a few specialists, and family, well, most family members don’t take the time to try to understand. I have a lot of friends ill with the same things, and very few have the support of their families, or only part of the family.

I was so very lucky, to have my mom until she was 89. She was still telling me about any article or show she saw where my illnesses were mentioned, still reading articles about it that I posted on Facebook, trying to understand better. She still listened to me moan and groan and complain when I needed to.

I had her, and I have my youngest daughter, who has a milder version of these damn diseases. She’s my caregiver, my best friend, my defender, intelligent and brave, and with a bit of her grandmother’s iron spine. You don’t want to piss her off anymore than you did my mom – her grandmother taught her well. I have my son-in-law here, too, who very bravely accepted the weight of being part of our family. It’s not an easy thing, being a caregiver to someone like me, mostly bedbound. But such is the power of Love.

I couldn’t get through this life without them, and I don’t know how my friends who have no family support do it.

I’ve been blessed, that’s for sure, and I’m so very thankful for my mom’s steadfast love and support. I will always love her, and I know she’s watching over me, loving me still.

Love never dies.

Shores of Avalon

In some ways, I was relieved when my mom finally passed away. Seeing her the way she was, two months after a hemorrhagic stroke, ripped my heart out every day. She’d had the stroke in early September, and the months since had been filled with far too few ups, far too many downs, and devastating punches to the gut.

She was only affected physically a little, and that mostly passed. But her mind… That bore the brunt of the bleeding in her brain. That is what haunts me.

Dementia was just a word, without real meaning, until I watched, from a distance, as she slid further and further away. I wanted to go to her, in Houston, but I’m homebound with my own illnesses, and there was no way I could travel.

There were endless phone calls, trying to talk to her, and talking to her doctors, nurses, and my brother and sister-in-law, who were there. Hours spent researching, trying to understand the possibilities for recovery.

More hours went into hacking into her patient record at the hospital, pouring over the flood of lab and test results, learning a whole new area of medical terminology, translating that for family, and relaying it all to my eldest, who was deployed to the middle east.

I’d already spent 4 years being my mom’s patient advocate from a distance, intervening with doctors, calling, faxing, emailing, tracking her labs, researching her meds and demanding changes from doctors who were too busy to spend the time I was.

She was 89 years old. Every problem was written off as “just getting older.” How angry that still makes me. If they’d paid more attention, they’d worked harder to control her blood pressure, and sent her to the ER when her BP was incredibly high and she had a headache, the outcome could have been different.

After the stroke, my brother would bring the iPad to the hospital, so we could do video chats. They were difficult from the start, seeing my mom’s confusion, anxiety, distress, and fear. She didn’t understand that she’d had a stroke, where she was, or what was happening. Sometimes she knew me, sometimes she didn’t. The nurses said she was often combative, angry and afraid, cussing them out while they tried to help.

As the days turned to weeks, getting her to eat, drink, and take her meds, became nearly impossible. She went from hospital to nursing facility and back numerous times, with new issues cropping up, one after the other. She often would wander around, and had many falls.

The last video chat we had haunts me. My brother propped the iPad up on the table, so I felt like I was there, but I don’t think she even looked at me. Her face was gaunt, and her always beautiful skin was marred by large deep purple and green bruises, with more on her arms and legs, from her falls. Her eyes stared blankly, empty except for anger when my brother tried to get her to eat her meds-laced ice cream.

She wasn’t there. The spark of Love and Life that animated my mother, spilled from her over me for my whole life, was gone. I knew she would be appalled at her condition, and would never have wanted to go through all this. I cried that day, to see her so diminished, bruised and battered, who had always been so strong and imposing.

Making the decision to put her in the gentle hands of hospice care that day was easy. The doctors now said she had terminal dementia. Hospice would see that she was comfortable, allowed to slip away naturally.

The day after hospice took over, she went to sleep, and became unresponsive. My brother showed me her nice room on chat, with all her furniture, as she laid still, on the bed. No more IV’s, no more prodding her to eat, no more distress. Resting gently, she slipped deeper and deeper into a coma.

I thought she would pass away quickly after that, but she was stubborn to the end. Every night I went to sleep, so lightly, in case The Call came in. A kind-hearted hospice nurse told me it could “be a while,” and he had one patient who went 33 days in a coma, in what is basically a hibernation state. I had no idea someone could linger that long without water or an IV.

The waiting was hard, and very busy, helping to arrange a funeral in her tiny home town of Loop, TX, and keeping folks aware of developments.

My ill body was not taking all this well, and I was having some major physical issues. Too little sleep, too much laying in bed wondering how she was in the middle of the night, too little eating… I tried desperately to stabilize my own system.

My mom lasted 6 days. The Call I’d been expecting came moments after I woke up on my own, alarmed. We’d both always known when the other was going to call, and this final call was no exception.

Gazing over the mountains my mom had loved so much, I watched the dawn light creep into the day, as I had just enough time to say a final goodbye.

I felt her then, and I’ve felt her presence many times since then. And I always will.
She was truly my guardian angel in life, and nothing’s going to stop her from continuing to look out for me.

This, I know.


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This story starts with a dog, and ends with another. It’s long, and touches on sensitive subjects, with raw, open, honesty. The last 10 months have been quite a journey, full of sorrow, shock, a moment of extreme clarity, a lot of contemplation, reflection, unexpected dreams, and then resolution, when the dream became reality.

It started with watching the slow decline of our elderly dog, Kasha, who had a number of health issues. The most difficult was degenerative disc disease, and as last summer turned to fall, she was having increasing difficulties controlling her rear legs.

Then came a shocking phone call, when I found out my spinal x-rays didn’t show the herniated disc I expected, but instead showed that I, too, have, “severe multilevel degenerative disc disease,” on top of everything else.

I was caught way off guard. I had been working on the premise that I am going to get the ME/CFS under control, using all my supplements, and that one day, once I figure out these migraines or get thru perimenopause, I was going to be back to some semblance of myself – I know there’s damage that will always be there, but I think there’s a lot that can be fixed, too, slowly, over time.

But, it’s basically going to be with me the rest of my life. There are a few things I can do, some supplements and maybe some physical therapy, and I’ve gotten a TENS unit that helps. But my spine is very unstable – I’ve been going through periods for two years, where I “throw my back out,” and I can feel the discs moving out of place, and pain and sciatica flares like a bonfire.

After absorbing this news, I walked out into the living room to find that Kasha had lost control of her bowels, and there was a trail of poop leading through the living room and onto the porch. She was lying there looking so very ashamed.

It triggered a moment of extreme clarity, a frozen moment in time, where I knew two things for certain:

Kasha was at her “red line,” the place where dogs with degenerative disc disease are no longer recoverable – it was not going to go away with rest and time, and was going to be the end of her, and soon.

And just as clearly, I felt that I, too, now have a red line, though I’m not to it yet. My mind played it out for me… me with a walker, or in a wheelchair, although I don’t know how I could even use either because of a torn up shoulder, and the weakness and utter exhaustion of ME, CFS, fibromyalgia, etc.

There was the feeling of a door slamming shut in my mind, those images simply shut out. I won’t, I simply can’t, live in a condition where I’m bed bound and need a wheelchair just to get around. And I won’t be that kind of burden on Rhiannon and Ben, either.

I wasn’t afraid.
I wasn’t sad.
I felt acceptance.
And, much to my dismay, I felt relieved.
Relieved, because the long fight would be over. I didn’t realise how very tired of the constant struggle I was.

I didn’t so much as make a decision as have one thrust on me from deep in my soul. Just as Kasha would find her peaceful end, in a beautiful, sacred, manner, when the pain became too much and when she couldn’t rise, I too, would find that place.

I have many friends, fellow patients, who have to use wheelchairs or walkers or scooters, and I have the utmost respect for them.

But that’s simply not something I can accept.
I have been sick for more than 17 years, and almost entirely housebound for 10 years.
I cannot accept any further limitations on my ability to move around.

I am meant to roam mountains and walk through my beloved woods.
I am meant to be a wild thing, and I can barely take the captivity I have already been in for much longer.
I am the wolf, tightly caged, pacing back and forth, going slowly crazy from my longing to be free.

But here was this realization that I wasn’t ever going to go running barefoot again, through the golden autumn woods calling to my Heart that day, because my spine is simply too unstable. That’s a huge and terrible loss, and the shattering of all the dreams and plans I’ve been holding on to… I wanted to get well enough to be able to help some of my dearest friends, my soul sisters with ME, CFS, fibromyalgia, etc, maybe share a house with them, all of us working to heal each other.

I watched each day as Kasha had a few ups and lots of downs, and it was like watching a train wreck in slow motion, knowing it was heading my way…

In the months since that moment of clarity, and through Kasha’s gentle passing, the sacredness of her death, a gentle release with mercy, I’ve spent many sleepless nights, thinking about just what I wanted to do, and how much fight was left in me for this new, seemingly insurmountable, challenge to my health and my life. There are things I want to do, and things I need to do.

And then along came some dreams, and some info about dogs, that had me reevaluating how long I am willing to fight to go on.

Twenty years ago, living in fear from a relationship gone terribly bad, I lay awake in bed at night, too stressed and worried to sleep. I found solace in meditation and visualization (shamanic journeying). Usually, I would “go” to a beautiful forest at night, and run as a wolf until I finally curled up, safe, in my den. I’d fade off to sleep that way.

But one night, instead of being in my forest, I found myself high on a rocky outcropping, in a sea of rippling sand. I could see in every direction around me, see that I was safe. I laid down in the sand, pulled my cloak around me, and felt desert winds deposit a soft blanket of sand on me. For years, every night, I went to the desert to sleep.

I studied the desert as it is today, and as it was. I drove my family crazy with my sudden obsession with the desert. I didn’t explain that the desert had come to me, unexpectedly, but it was saving my sanity.

The decades passed, and I eventually went back to my forest – until my moment of clarity. Ever since then, every night, I retreat to incredible vistas of desert dunes, open caves and hidden chambers. This time, though, there is something else there with me: a lean desert dog, colored the same as the sand, and with electric eyes that look right through me. I know the feel of her soft ears, and my fingers remember the shape of her head under my hand.

Salukis, a beautiful desert Sighthound, have fascinated me since the desert came to me. They are perhaps the oldest of all dog breeds, and the only type of dog who was not seen as “unclean.” Desert nomads have cherished the Saluki for thousands of years. I’ve wanted to have a Saluki or Saluki mix for 20 years.

But now, through chance, I learned that most people in the middle east treat dogs in horrible, horrifying, ways. They do not value them as we do. Many Salukis and other dogs are simply dumped in the desert when the owner tires of them, or if a racing Saluki doesn’t run fast enough. Some racing Salukis have their ears cropped off “to make them run faster.”  The Salukis have bred with the many other dumped dogs, and now “desert dogs” are pretty much a breed of their own – small Sighthounds, usually with short fur and tails that spiral into a curl.

The pictures are terrible to see. Dogs so emaciated you can’t believe they are alive, or who’ve been viciously beaten, or thrown out of a moving car, leaving them with broken legs. Dogs who have been shot by the police, in front of children, when an area has too many strays. Dogs beaten with stones by children, who know no better. Need I go on?

It broke my heart.

The question changed from “when” to give up the fight, to a very simple, “do I want to die without first rescuing a desert dog? Or do I want to hold on long enough to rescue my dream dog, a true desert dog, and experience her life with me?”

Adopting a dog from the middle east can be somewhat complicated, but there are many groups and individuals there, mostly westerners, who are involved in rescuing the ones they can, fostering them a time, then finding them new homes in the U.S. and Europe. Some send the dogs to the U.S. first, and then put them up for adoption, and others work directly with those wishing to adopt.

I began watching the various groups on Facebook in late winter, and the number of dogs needing new homes is overwhelming. But if I was to rescue one, it had to be the one from my dreams…

And then, there she was. A desert dog with electric, topaz blue eyes, just as I’d been dreaming of. I really didn’t think she could exist. But she does.


Ellie is about one year old, and was found dumped to starve or fend for herself. Despite that, I hear she’s an incredibly loving and gentle dog. She’s not too big, and not too small, either, weighing in at 40 pounds.

After weeks of working on arrangements, my Ellie will be flying from Dubai, in the UAE, home to me on Monday, June 27. What a birthday present!


For me, Ellie is Hope – hope that I will have improvements in my health, and she is incentive to keep on fighting, keep on going, no matter how hard it sometimes is. By fulfilling my dream of having a desert dog, my motivation and inspiration to keep moving forward to experience her whole life with her is immensely boosted. That’s just how much I love dogs.

I’ve also become close friends with Ellie’s amazing rescuer, Charlotte, and with Marci, who is practically a one woman whirlwind of dog rescuing in Al Ain, UAE. I am completely in awe of what they are doing, and will be forever grateful for all the hours of work, time and money, that went into getting Ellie cleared to fly and come home to me.

I’ve set up a fledgling Facebook page for them, in the hope of helping other dogs find homes. It gives me inspiration, to know that I can still do something with my life, even if all that it takes is monitoring a Facebook page. I’m not completely useless, after all.

I believe everything happens for a reason. It was not coincidence that I learned about the desperate conditions for dogs in the middle east, and it was not coincidence that Ellie showed up in need of a home, the dog from my dreams, one I didn’t think could possibly exist.

Ellie of the Topaz Eyes is the fulfillment of a 20 year long dream. If she can happen, what else might be waiting around the corner? All I know is that I have Hope again.



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Those of you who know me know I am all about being 100% honest and real, all the time. No little white lies. No quiet deception. Well, it’s not going to get any more real than this series, Frank Talk On Pain and Pain Meds, and what’s to follow in the next few months.

The issues of pain, pain meds, and the relatively new medication, LDN (Low Dose Naltrexone), have consumed my world for the last 3 weeks, as I wrestled with, and then came to what, to some, will seem like a rather drastic and risky decision: to get off the opioid (sometimes called opiate, or, erroneously, narcotic) pain meds that I have been on for the past ten or eleven years, in order to give LDN, a trial run.

You can’t have it both ways – it’s one or the other.

This was not an easy decision, nor one to be made lightly.

The pain that ME/CFS and FM (fibromyalgia) patients like myself experience is very real, very intense, and a constant part of our daily life.

Even with opioid pain management, there is no such thing as a day without pain. It’s a matter of degress, of where does it fall on the 0 (no pain) to 10 (excruciating) pain scale. I haven’t had a single moment at less than a 3 in as long as I can remember, with 4, 5, 6, and sometimes, even 9.5, being a regular part of my daily life.

Those of us who are lucky enough to be on opioid pain medications know just how lucky we are, as we all have friends who aren’t so lucky. Chronic pain is both emotionally and physically draining.

As I discussed my idea with a few famly members and friends, and reflected on the past, I realized exactly how much misinformation, misunderstanding, and what a terrible stigma there is around the use of opioids in chronic pain patients.

It turned out I had a lot to say about it, but, as I started weaning myself off the opioids I have been on for more than a decade on March 25th, maintaining a clear and rational thinking pattern has been quite challenging at times (perhaps the understatement of the year). Believe me, I’ve tried to whittle this down, but am tired of editing, so here it is:

Frank Talk On Pain and Pain Meds:

My stated 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.

Because I don’t know of anyone who has gone from 10+ years of opioid use and then onto LDN, I feel a certain responsibility to share this experience with you, my friends and fellow patients, in case you, too, are contemplating the same choice.

Withdrawal is not fun, I can tell you that now, but then, you didn’t think it would be, did you? What I’ve been experiencing will be the subject of future posts.

As of today, April 14th, I’ve cut my dose down to about 40mg a day. Just about half way there, but possibly going a bit too fast – more on the delights of withdrawal in future posts.

My Reasoning

The stigma that surrounds opioid use is one reason behind my decision, as my PCP, who has been handling my pain management, was out on maternity leave for 3 months, and I was faced with uncooperative members of her practice who left me wondering, day to day, whether I was going to run out of my meds or not. During an appointment with another provider, I was treated like a drug seeking addict.

I am not addicted to my pain medications, as I explained to her. I am physically dependant. There’s a huge difference, one she should have known. I explore these differences in Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance.

I left feeling absolutely humiliated, and with only a few days worth of meds. My awesome PCP soon came to my rescue, despite being still out on leave, but the experience left me pondering the precariousness of my situation.

The other reason behind my decision was recent research and articles I have read touting how effective LDN is, not only for relief of pain, but also possibly for assisting the immune system to re-balance – something I am increasingly in dire need of.

I spent several days in deep contemplation and research, before finally deciding to take the plunge.

Much to my relief, my awesome PCP is behind whatever decision I make. As her large practice’s fibromyalgia specialist, she has already put several patients on LDN, with good results.

Read on, please, and feel free to share and comment!

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If there is one subject that is the least spoken about in the ME/CFS and Fibromyalgia (FM) communities, both between patients and also between patients and our own family members and friends, I think that subject must be the use of opioid (sometimes erroneously referred to as narcotic) pain meds to treat our pain issues.

There are so many misconceptions about the nature of pain in our illnesses, and even more about the use of opioid pain medications, I think it is time for some frank talk about these subjects.

Frank Talk On Pain and Pain Meds:

Pain: The Problem

The pain of ME/CFS and FM is very real, very strong, and usually constant: a deep aching in the muscles and bones; frequent, if not constant, headaches and migraines; tenderpoints and triggerpoints – knots easily felt by anyone in the muscles and the fascia, the covering of the muscles (myofascial pain syndrome).

There is also a generalized tenderness, and in some cases, extreme sensitivity. Sometimes, the weight of the bedsheet is too much, too painful, to bear. Sometimes, the lightest touch, like the gentle brush of a lover’s hand over an arm, burns like a scald from boiling water.

There are complicated medical reasons: too much “Substance P,” the chemical that transmits pain signals; an over-active neurological system; the build-up of excessive amounts of lactic acid (that stuff that makes you healthy people have sore muscles after working out); and even more, convoluted, biological reasons that I can’t pretend to understand.

To top it off, we often have many other co-existing factors: deep muscle spasms; osteochondroitis (inflammation in the tissues between the ribs, making just the act of breathing incredibly painful); inflammatory arthritis; restless-leg syndrome; gout or pseudo-gout; injuries that don’t heal; incredible foot pain (plantar’s fasciitis comes to mind)… the list goes on and on.

Our pain is real.

It is intense.

It never let’s up.

It keeps us awake at night, thrashing in bed, trying to find a comfortable position – an impossibility when you hurt everywhere.

Pain Meds: No Easy Solution

Because our pain is not simple, and has multiple biological and neurological causes, treating it is also not simple.

We almost all take a cocktail of meds designed to have some impact on our pain levels, from Lyrica (an anti-seizure medication) to a variety of different antidepressants. These all work to alter our brain chemistry in ways that are sometimes not even understood, to help reduce our perception of pain.

But the simple reality is, those barely scratch the surface for the majority of us. One in six Lyrica users finds it to be moderately useful, for example. Hardly an astoundly good result.

So, what about Aspirin, Tylenol, Advil, and Aleve?
For the overwhelming majority of us, they have ~zero~ effect on our pain. Our pain is of a different origin than what they are made to treat.

Pain Meds: What Works?

The new med in town is LDN, Low Dose Naltrexone, currently in clinical trials, for fibromyalgia. But for many of us, this comes years too late – many of us have been sick and in pain decades. (Note: You can’t take LDN if you are already on opioids.)

There is only one class of pain medication that reliably works: opioids, or, as they are sometimes called, opiates.

What are we talking about? For the vast majority of us, if we have a compassionate and knowledgeable doctor, we are prescribed two different formulations of the same medication, oxycodone. The first is Oxycontin, which is a time-release form, to cover the bulk of our pain.

The other is an immediate release oxycodone, in a much lower dose, for “break-thru” pain – the pain that roars up like a lion, irregardless of the Oxycontin. One example: periodically, I have to leave the house, for doctor appointments, etc. Being vertical sets off the pain in my back, which locks into rock hard spasm. It feels like I’ve been stabbed with a butcher knife & someone is slowly twisting the blade. Literally.

There are a number of other opioid pain medications, like methadone, hydrocodone, etc. But they aren’t prescribed as often.

According to one study I ran across, Oxycontin is what approximately 40% of Fibromyalgia patients take.

What about the other 60%? Good question.

Doctors are more and more hesitant to prescribe opioid pain meds, as the FDA cracks down on doctors running “pill mills,” and good doctors get investigated in the process. Every patient asking for opioids is treated like a drug-seeking addict, and often turned down flat out.

So, the rest suffer, their pain untreated. Even the ones lucky enough to have a doctor who will prescribe for them may be undertreated, as tolerance develops fast, and doctors resist raising the dose.

The Opioid Stigma: Oxycontin & Oxycodone

Most of the time, the only time the public hears about Oxycontin is when a celebrity goes off to rehab for Oxycontin addiction, or there’s a high-profile overdose of somebody who was not a pain patient, who was buying it off the street. Often, in those cases, Oxycontin is referred to as a “narcotic.”

“Narcotic,” however, is more a legal term than a medical one. Many drugs are legally classified as narcotics, and some have nothing at all to do with pain management.

Medically speaking, the medications we take for pain control are opioids.

But all this sets up a stigma in the public’s mind, which is why we patients, desperately in need of pain management, and offered Oxycontin and oxycodone, don’t speak of it much, to anyone.

The reaction of even close family members can be terrible, with accusations we are addicted to our pain meds, and threats of intervention or rehab.

It’s often extremely difficult – or impossible – to get people to understand that we have a right to live without constant pain, and that pain meds, including opioids like Oxycontin and oxycodone, can be prescribed and used responsibly, without our becoming drug-crazed addicts!

So we stay silent.

Addiction vs. Physical Dependance

This is what we most need you, our family and friends, to understand: the very big difference in addiction and physical dependance.

In 2001, the American Academy of Pain Medicine, the American Pain Society, and the American Society of Addiction Medicine jointly issued “Definitions Related to the Use of Opioids for the Treatment of Pain.”

Please read – and re-read if necessary – until you understand the terms involved with pain management and addiction:

  • Addiction is a primary, chronic, neurobiologic disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.
  • Physical dependence is a state of being that is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.
  • Pseudo-addiction is a term which has been used to describe patient behaviors that may occur when pain is undertreated. Patients with unrelieved pain may become focused on obtaining medications, may “clock watch,” and may otherwise seem inappropriately “drug seeking.” Even such behaviors as illicit drug use and deception can occur in the patient’s efforts to obtain relief. Pseudo-addiction can be distinguished from true addiction in that the behaviors resolve when pain is effectively treated.
  • Tolerance is the body’s physical adaptation to a drug: greater amounts of the drug are required over time to achieve the initial effect as the body “gets used to” and adapts to the intake.
  • Before you accuse or insinuate that someone taking opioid pain meds is “addicted,” learn what that term really means, I beg you. Oxycontin and other pain meds are sanity-savers for those of us with ME/CFS & FM. We become physically dependant, yes, but many meds cause dependancy, including blood pressure meds, antidepressants, seizure meds, and many more.

    It is a small price to pay for relief of the never-ending pain.

    Please leave your thoughts below.

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    Frank Talk On Pain and Pain Meds:

    This is Part 2 of a 5 Part Series on the Use of Opioid (Opiate) Pain Meds for ME/CFS and FMS. This part is primarily written for the benefit of family members and friends of patients on opioids – we patients already know all this, although I welcome hearing from other patients and your thoughts about all this!

    I request you read Part 1: Pain, Opioids, Addiction and Dependance, first.

    Those of us with ME/CFS and FMS try multiple modalities – routes – to pain relief as part of our pain management.

    These can include an array of different prescriptions, from antidepressants to anti-seizure medications (Lyrica, Gabapentin), anti-inflammatories (like Celebrex), etc.

    We also make liberal use of physical therapy and massage when we can afford it, biofeedback, hot and cold packs, as well as modifying our environments. We often need extremely soft beds with thick, fluffy, mattress toppers, curtains and dark sunglasses to block the light the hurts our eyes, and a family that tip-toes habitually due to our sound sensitivity.

    Every little bit helps.

    Dispelling Some Myths

    Oxycontin and other opioids have the potential to be addicting and to be abused, there’s no debate there.

    But that does not mean that someone who is prescribed it for pain management and taking it as prescribed is necessarily going to become addicted (remember the true meaning of that very loaded word – see Part 1), no matter how long they use it.

    They will, however, become physically dependant.

    There is a world of difference between the two, and if you are still unclear, please go back to Part 1 and re-read the definitions.

    You may be surprised to know that opioids like Oxycontin do not make you feel “high” when used daily, long-term, at the prescribed dose, for pain management.

    Yes, you read that right – I’ve been on opioids (Oxycontin & oxycodone, mostly) for over 10 years. If anyone would know, it would be me.

    It just relieves some of the pain, which is the point of pain management.

    Even with opioid pain management, there is no such thing as a day without pain. It’s a matter of degress, of where does it fall on the 0 (no pain) to 10 (excruciating) pain scale. I haven’t had a single moment at less than a 3 in as long as I can remember, with 4, 5, 6, and sometimes, even 9.5, being a regular part of my daily life.

    In my case, opioids actually increase my energy level – chronic pain is both emotionally and physically draining. Muscles tighten into spasm around the painful areas, and that takes away my precious energy.

    Finding a Pain Management Doctor can be very difficult.

    Pain doctors are very strict – because the FDA makes them be. Doctors who write scripts for opioids are (usually) carefully watched and many doctors will simply flat out refuse to write any rx’s for opioids at all.

    I was recently, erroneously, as it turned out, told my PCP would no longer be able to prescribe my pain meds. She was out on maternity leave at the time. This set off a mad scramble of researching doctors online, and phone calls.

    An example: One doctor would only agree to even make an appointment with me after I had had my last years’ worth of medical records sent to him for review. He charges $300 for the initial visit and $200 for each monthly visit. A problem for someone with no insurance. And he’s not prescribing opioids for anyone new, but only taking over patients who are already on opioids.

    If you do find a pain management doctor who will treat you with opioids, it is likely there are a lot of rules:

    • By law, you must pick up your written prescription in person, and can never have more than a 30 day supply.
    • Most doctors require you actually see them for an office visit every 30 days before they will give you that rx.
    • Most doctors require you to sign an “opioid contract” spelling out the rules you must follow. Break the rules, and you will be dismissed from the practice.
    • That office visit may include a “pill count” – they keep a tally of how many have been prescribed, and how many you should have taken, and you had better show up with exactly the right amount left on hand.
    • If your prescription or any pills are lost or stolen, and you don’t have a police report, it will not be replaced, and you will be dismissed from the practice.
    • You may be subject to random drug testing. Have too much of your prescribed medication in your drug screen or any illegal drugs and you will be dismissed from the practice.
    • In some states, the state monitors how many opioid prescriptions you have gotten filled, so as to catch people who go to multiple doctors hoping to get multiple prescriptions (usually with the intent to sell them – Oxycontin fetches a high price on the street).

    If you manage to get yourself dismissed from a practice, you will have a very hard time finding another doctor to prescribe for you, as they will want to know why your previous doctor dismissed you.

    A Pain Specialist With A Remarkable Story

    Dr Heit is quite literally world re-knowned in the field of pain management, and was my specialist for several years. His story is quite interesting.

    He was an intern in an entirely different speciality when he was injured in a car accident, and left in a wheelchair. Despite his terrible injuries, he found his pain was profoundly undertreated, and he was often in agony.

    He decided to change his speciality to pain management, and has been a crusader for several decades, fighting for the rights of those with chronic pain to receive adequate pain medication, including the use of opioids.

    He has frequently testified before the FDA and Congress, and is widely recognised as an expert in his field. He has also written numerous articles and chapters in medical textbooks.

    He was a demanding but compassionate practitioner, who ultimately handed me off to my primary care provider, because I was a trustworthy patient with absolutely no sign of addiction or abuse. I took (and take) the proper number of meds, exactly as prescribed.

    Dr Heit has proposed to the FDA a tier fashion of categorizing patients, based on their potential to abuse their medications or showing signs of addiction. I don’t know if this has been adopted yet. His goal was to make it easier for patients with the least risk of abuse to receive treatment for their pain through their primary care providers.

    I hope this has helped dispel some of the misconceptions about pain management that many people have. That’s my goal, anyway. What did I miss?

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    Frank Talk On Pain and Pain Meds:

    My journey through the meds for the pain of ME/CFS and FMS started with Ultram (tramadol), a non-opioid medication. It did help for a while, but tramadol’s downsides are that it doesn’t tend to work terribly long (tolerance develops) and it also affects many areas of the brain, in ways similar to antidepressants, and can cause many side effects. It is also not helpful for more than mild to moderate pain, and as I became more ill, my pain became worse.

    I was started on oxycodone, in 2002, and it was an incredible relief.

    Not only do I have the typical “run over by a bus” pain of ME/CFS & FMS, bone pain from inflammatory arthritis,  myofascial pain syndrome, severe headaches and migraines, increased sensitivity to pressure, etc, but then, there’s my back.

    I have roto-scoliosis, an abnormal curvature & rotation of my spine. I had intense physical therapy for it as a kid, narrowly escaping being locked into a brace. For many years it wasn’t much of an issue, but with the onset of ME/CFS, it became one.

    I’ve had physical therapy and massage, and that helped, to a point. But the fact has remained that the twisting muscle on the right side of my lower back is my greatest enemy, especially now that I have had some severe muscle wasting.

    My lower back is always in spasm, but too much time vertical, and the muscle locks into a spasm hard as granite. It literally feels as if someone has stabbed me with a butcher knife and is slowly twisting the blade.

    On the very rare occassion I venture into a store, I know going in I don’t have long. When the stabbing pain starts, I have roughly 5 minutes to get to the car before it becomes simply unbearable, too painful to even take a breath.

    Muscle spasms like these are part and parcel of ME/CFS and FMS. When a body part hurts, our muscles spasm around the pain. I get them in my neck, shoulders, upper back… and they hurt, squeeze and compress nerves, and send pain shooting throughout my body.

    Life before opioids came into my life was indeliably imprinted by the pain, and the struggle to avoid it.

    I could give you so many examples of what life with the pain of these illnesses is like, but I will settle on two:

    Most people think of time spent in bed as relaxing. But because of the super-sensitivity that is caused by complex biological changes in the body, just the pressure of my body, and especially by hips, against my bed was excruciatingly painful.

    So my bed has become progressively softer, with the purchase first of a Cuddle-Ewe, a very thick wool mattress topper, which is actually a product marketed to fibromyalgia patients, and then a super thick (8″) and super soft futon to go under that. Total amount spent: nearly $900.

    Next example:
    I remember my very first cruise, to Alaska, right before I was started on opioids, and walking with great pain through the streets of Skagway. A more picturesque town could not exist, and I was enchanted.

    But as I marveled at the high mountains surounding this sea-side town, I limped from bench to bench on the sidewalk. I had plantar’s facsiitis in both feet (something I know others with ME/CFS & FMS sometimes suffer thru, too), and every step felt like I was walking barefoot on broken glass. Add in the back pain, and I was severely limited, although trying my damnedest not to show it.

    Then came opioids, and relief.

    I was on a combo of Oxycontin with oxycodone for breakthru pain for a number of years, before being switched to methadone. I didn’t like it from the start, and it was to have near disastrous consequences.

    One hazard of opioid use is that they depress the central nervous system. This becomes a problem when you start to develop tolerance to the med, and the dose gets raised in order to have the same level of control over the pain.

    Methadone, in particular, is known to be very bad where CNS depression is concerned, and the cause of many accidental overdoses.

    I only knew I was slowly going from sleeping 12 hours a day to 16, then 20, and yet was never rested.

    A sleep study showed the problem – here’s what I wrote in Feb, 2010:

    Most sleep apnea is Obstructive sleep apnea, where there is something physically blocking the flow of air and causing the body to stop breathing temporarily.

    Central Sleep Apnea is different and present in less than 1 percent of people with sleep apnea. What it is, essentially, is that the brain temporarily stops sending signals to the muscles that control breathing, so you repeatedly stop breathing during sleep. In the 5 1/2 hours I slept, I had 82 “respiratory disturbance event” which on average lasted 19 seconds, with the longest lasting 28 seconds. I never reached REM sleep.

    There was only one option: wean off the methadone.

    There are a number of blog posts about that ridiculously long and difficult process. Methadone is widely known as the hardest opioid to quit, the withdrawal the most difficult. There really was no reason I had to quit entirely, just lower my dose enough to get out of CNS depression, and lose my tolerance.

    After 9 months, I switched from the very low dose of methadone I was on to Oxycontin again, as I couldn’t stand the level of pain I was in.

    For the last two+ years, I’ve been back on Oycontin, with oxycodone for break-thru pain.

    Flash forward to last month, and humiliation.

    My PCP went on maternity leave in December, with the understanding that other doctors in her practice would continue writing the scripts for her pain management patients. It turned out that the other providers weren’t comfortable with this, and without telling her, the CEO of the practice decided that the entire practice would no longer do pain management – and we patients would all have to go elsewhere.

    Finding a new pain doc is a nightmare, and expensive as hell, especially when you are caught without insurance, as I currently am. Coinciding with a wicked case of the flu and a sinus infection, this threw me into a tizzy.

    After several failed attempts at finding a new doc, I went to see a nurse practitioner at my PCP’s practice, explaining my situation. I was sick as hell. They had said they would not cut us off until we found new doctors. I had an appointment with my PCP in 2 weeks.

    The NP treated me like a drug seeking addict. Not with respect. Not like the chronically ill patient who has been seen in the practice for 5 years, during all of which I have been under pain management. My chart stretched out on the computer beside her, she told me I was “addicted,” and was visibly upset when I corrected her and said, “No, I’m physically dependant. There’s a difference.”

    She should have known what the difference is. She left the room abruptly, after a rather long and uncomfortable exchange, and left scripts for 5 days worth at the front desk. God knows what she wrote in my chart.

    It is the unspoken horror we all live with everyday.

    We rely on our pain meds. Our pain is intolerable. But what happens if our doctors decide not to prescribe pain meds anymore? It happens all the time. Or what if they won’t agree to increase our dose when we develop tolerance?

    We all know what happens if we run out suddenly: severe withdrawal. Nothing to be taken lightly at all, and in someone as debilitated as I am, something that could prove deadly.

    Deep thinking leads to a radical decision.

    I was, thankfully, able to contact my awesome PCP, who had given me her email address once, and she was appalled. She had only just found out about the decision, and had received permission to continue to treat her compliant pain patients, including me. She would leave new scripts at the office for me to pick up.

    But the experience had left me deeply shaken, and re-thinking everything. I relied on one doctor to prescribe my opioids, and if something were to happen… sudden withdrawal, especially after so many years, can be fatal in someone as debilitated as I am.

    And then there was this new med I’d been hearing about – but you can’t take it if you are on opioids.

    Hence the decision I came to, as discussed in the Introduction: to wean myself off opioid pain meds, in order to give the new med in town – LDN (Low Dose Naltrexone) a try.

    I welcome your thoughts, your comments, and your tale of your own journey through the world of ME/CFS & FMS pain. Please feel free to leave them below!

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