2 Hours With ME, and Dysautonomia: May 12th, International ME/CFS Awareness Day

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…

Frank Talk On Pain Meds: Introduction – Jumping Off Into The Vast Unknown

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 weeks.

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:
Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance
Part 2: Pain Management Myths and Misconceptions
Part 3: My Personal Journey

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!

Frank Talk, Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance

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:

Introduction: Jumping Off Into The Vast Unknown.
Part 2: Pain Management Myths and Misconceptions
Part 3: My Personal Journey

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.

Frank Talk, Part 2: Pain Management Myths and Misconceptions

Frank Talk On Pain and Pain Meds:

Introduction: Jumping Off Into The Vast Unknown.
Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance
Part 3: My Personal Journey

This is Part 2 of a 3 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?

Frank Talk, Part 3: Pain Meds, My Personal Journey

This is part of my series, Frank Talk On Pain and Pain Meds:

Introduction: Jumping Off Into The Vast Unknown.
Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance
Part 2: Pain Management Myths and Misconceptions

Part 3: My Personal Experience

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!

Valcyte for ME/CFS: 2nd Anniversary Recap!

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.

Coping: One Breath, One Moment

A post about getting through those moments you ask yourself: “What fresh hell is this?”, or beg, “Not again, please!” and, “When Food Is The Enemy”

Recently, yesterday I guess it was, but it seems eons ago, I managed to poison myself.

Not in the typical, swallow something toxic way, of course.

No, not me.

My poison?

A bowl of oatmeal. A stupid bowl of gluten-free oatmeal. A big bowl of oatmeal.

I knew almost immediately that I had made a serious error, as it first sat in my stomach like a brick, and then, the bloating and the pain and the overall “oh, crap, what fresh hell is this?” feeling came over me.

Like many with ME/CFS and Fibromyalgia, I have Leaky Gut Syndrome, which in some patients is labeled as only IBS – (Irritable Bowel Syndrome). I’ve got both labels, but today’s topic is Leaky Gut.

What that means, in very general terms, is that my intestines are far more permeable than they should be. Particles from foods I eat can enter my blood stream, and my body becomes hyper-sensitive to them. The more frequently I eat something, the more common reactions become.

For a more expanded discussion of this, see this post:
The Problem, The Plan, via Dr Z

I have quite a large number of items on “The List” of things I simply can’t eat. Oatmeal used to be on The List, but after avoiding it for a number of months, and then trying it again, it seemed to be okay.

Until yesterday. When suddenly it was not okay, and I have been enduring the misery of severe bloating (as in, looking 6 to 8 months pregnant), belly cramping, nausea, migraines, and an overwhelming toxic feeling ever since.

It is hard to define what it is to feel “toxic,” but in general, like you’ve been poisoned. Very weak, difficulty thinking, palpitations, nausea/vomiting, extreme migraines, on & on.

Note: To the family members of ME/CFS patients, I would just like to add: this, this horrifying misery, is why we don’t get excited about going out to dinner (if we’re able), or trying new foods. The tiniest bit of an offending food can lead to misery that lasts days – long after you’ve gone home.

So, what’s to be done when you’ve poisoned yourself with food?

Not much. Take a hefty dose of magnesium, which acts as a laxative, to move it along as fast as possible.

As long as it’s in your body, it’s going to be setting off your symptoms. So you need it out of there – and fast!

But mostly, you have to wait it out.

If your doctor (likely an alternative practitioner or LLMD) has indoctrinated you into the Gerson Therapy (the infamous coffee enemas), they can certainly help both move things along, as well as detox your blood.

Substituting chamomile for coffee, as explained in The Gerson Therapy, helps to calm intestinal spasms. You can also mix coffee and chamomile. Experience tells me that a slightly overly warm brew will produce better, umm, results.

For info on my own experience with the Gerson Therapy, you can see all posts tagged “Gerson,” starting with The Problem, The Plan, via Dr Z.

Breath by Breath. Moment by moment.

I wrote this to my mother earlier tonight, after two days spent complaining of being too nauseated to eat, and how awful I feel:

“Can’t think of much else right now except get through this moment, this minute, this misery. Its a thing my very ill friend, S., and I say. Just focus on this moment. Don’t think about how long the misery will last. Just get thru this one moment at a time.

“It’s how we keep from becoming another ME/CFS suicide statistic. If you think, “it will never be any better than this,” or, “this is gonna last forever,” or “I’ll never be any better than this,” or, “what’s the point, this is just gonna happen again & again,” that is the path to becoming a statistic.

“So when our heads are pounding, are bellies are churning, the pain is just so much we want to crawl right out of our skins, we say to each other, “Just get thru this moment. This one breath. Don’t think about the moments to come. Just this one moment.”

“And that is all I can do right now.”

I am very happy to report:
After my second round of coffee & chamomile today, the offending oatmeal has been well & truly expelled. I feel better already, although it will take a few days to get back to “my normal.”

Always remember: You can get through it. One breath, one moment, at a time. Just take a big deep breath… and let it go. See the pain/misery/illness/despair flow out with it. And then just take one more big breath…