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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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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!

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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:

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.

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    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?

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    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!

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    Note: Ash’s Advice is written by, me, Ash, a long-time patient with ME/CFS, FMS, Chronic Lyme, etc. I am not a doctor, and nothing written here should be construed as medical advice. These are simply my musings; a series of letters to my younger self, and to anyone suffering through the “living death” that is Neuro-Immune Disease: ME/CFS, FMS, Chronic Lyme, etc.

    Part 3: On Doctors

    One of the most frustrating, exasperating, and occasionally, yank-your-hair-out-and-scream, aspects of having ME/CFS, FMS, and other similar neuro-immune illnesses, is finding really good doctors or medical clinics.

    Ideally, you’re going to have a Primary Care Physician (PCP) who knows enough about your condition, whichever it might be, to be there for you when you have the flu or other unrelated issues, but who also understands your symptoms, your meds, and what’s going on in your body.

    Most importantly, you’re also going to need a specialist in your condition, which may be a Rheumatologist, Neurologist, etc. Rarely, the specialist can also act as the PCP, but most are far too busy.

    You may “acquire” other doctors along the way – unfortunately.

    About Doctors…

    You will inevitably run into Type A:

    They are Arrogant. And, callous, and actually fairly ignorant of your condition (although they don’t think so), and not interested in expanding their understanding.

    They spend precious few minutes with you, don’t have time for your questions, and they sure don’t want your suggestions. They could care less about your feelings, and allow you very little say in your own treatment.

    Like a dictator, they expect you to follow their every order to the T. They throw the standard prescriptions at you, and tell you to come back in six months.

    What you’re looking for is type C:

    They are Caring and Compassionate. Knowledgeable, and constantly striving to understand more about these complicated illnesses. They offer you all the various treatment options, both the standard prescriptions, “off-label” prescriptions, as well as complementary treatments such as nutritional supplements and herbs.

    They look at their work with you as a true Collaboration between the two of you and other members of your healthcare team (specialists, PCP, and family members). They value your opinion, always seeking the highest quality of life for you, and are respectful of your wishes and decisions.

    Or, of course, anywhere in between these two spectrums.
    Even an inexperienced PCP can be okay to work with if they truly want to learn more, and are willing to learn from you & your specialist.

    So, how do you find the good kind?

    That’s the tough part.

    It’s made even tougher because many specialists in ME/CFS & FMS don’t accept insurance at all, because they spend such long periods of time with their patients, rather than the standard 10 minutes insurance will reimburse them for.

    So not only do you have to find someone near you, but they also have to accept your insurance, assuming you have any.

    Get started…

    To start with, you can check with the doctor finder over at my friend, and fellow blogger, Patrick’s blog, Quixotic: My M.E. Blog. It’s on the right hand side.

    I can’t vouch for that list, or any of the lists out there. But the second place to look is to Google the words:

  • CFS/FMS good doctor list
  • ME/CFS good doctor list
  • Or if Fibromyalgia is your only issue,

  • Fibromyalgia good doctor list
  • This should return a number of lists from different organizations.

    If you still haven’t found anyone near you, the next place to look is on the forums. If you’ve found my blog, odds are good you’ve found forums, so ask around.

    Still nothing? Then to Google you go.

    I found my PCP by putting in Fibromyalgia and Virginia (my state), and sifting through the results until I found a practice that both accepted my insurance as well as said it had a special interest in FMS.

    ME/CFS is my biggest problem, but there are a lot more people being diagnosed with Fibromyalgia than ME/CFS, and therefor a lot more doctors with experience with Fibromyalgia, and you are far more likely to find one.

    And yes, as you might suspect, it took a very long time, cross-checking doctors with my insurance company to be sure they matched up.

    Interviewing Your Doctor

    When you go to your potential new doctor, keep in mind that you are hiring this person for the most important job there is: keeping you as healthy and active as possible!

    There are 2 kinds of first visits: you’ve been diagnosed & are being treated but want/need a new doctor, or, you think you have ME/CFS or FMS, and want to be evaluated.

    Unless the doctor you are seeing is one of the really big names in the ME/CFS or FMS world, and you are desperate to be seen by them, then keep in mind that you are interviewing them for a job, not just a patient seeing them for an evaluation.

    If your personalities clash, or you don’t like their style, and there are other doctor-candidates in your area, then go ahead and schedule the follow-up (unless they’re truly awful) but before then, try to get in to your next option.

    Do not be afraid to be bold and speak your mind, even at the first visit, especially if you’ve been sick a while and so have a “history.” How they respond will tell you how involved in treatment decisions you will be allowed to be as a patient.

    When I interviewed my PCP, I took her a printed overview of my illness – what I was diagnosed with and when – as well as a list of my meds, and some of my records. I explained the severity of my symptoms, and that I am a “very, very complicated patient.”

    As we talked through it, I really liked her style, how closely she listened, and she clearly understood that I was auditioning her for a job. She was young, but very interested in FMS, and very interested in expanding her knowledge of ME/CFS.

    Then I dropped the bombshell: my health insurance was changing, so I no longer had coverage for my Rheumatologist or Pain Management Specialist. I needed someone to prescribe all my meds, including my pain meds (many doctors simply won’t write those at all). I would continue to see my LLMD, but not nearly as often.

    I looked her in the eye and just asked her flat out, requesting she please be truthful with me, “Do you have the time and interest in taking on such a complicated patient?”

    She looked straight back at me and responded, “Absolutely!”

    I got very, very, lucky – she is definitely Type C. I see her monthly, and things have gotten even more complicated, but she has continued to do a fantastic job with a very “high maintenance” patient. She only has one other patient with ME/CFS, but is one of her practice’s specialists in Fibromyalgia.

    The First Visit – the Evaluation

    Your first visit to a new ME/CFS, or FMS, specialist for an evaluation should be long – a half hour at a bare minimum.

    Many of the best spend an hour or even two or three on the first visit, and at least 20 minutes on follow-ups, with 30 minutes to an hour being common. There are often reams of paperwork to fill out in the beginning about the onset of your illness, and usually, at least a checklist before each follow-up.

    Many specialists will order lots of lab tests, and sometimes x-rays, MRI’s, CT’s, etc, so don’t be surprised. The labs can be extensive. You don’t want to know what my record is for the number of tubes of blood drawn at one time. Just relax and think of something else.

    In Conclusion

    I know a number of patients who drive (or have someone drive them) hours to appointments with the best ME/CFS doctors out there, and they are often offered treatments that other patients aren’t.

    On the other hand, I know patients who got diagnosed by a Type A doctor, and who are still seeing them, still taking pretty much the same meds, years later, when there are new meds out. Sometimes they don’t have other options, but sometimes they don’t realize how different doctors can be, having never experienced a doctor anywhere approaching Type C.

    It’s my suggestion that unless you have a very good partnership with your doctor, and you feel you are receiving truly excellent care and being treated with respect, that you do the work of looking for someone else, and just get a second opinion on your case.

    It couldn’t hurt at all, and there might be things a different doctor would notice that the first one missed – and different treatment options.

    And that might make all the difference in the world.

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    For some time now, since the “protein wasting,” also called muscle wasting, and unintentional, major weight loss started, two years ago or so, we’ve been refering to my overall health status as “precariously balanced.”

    When I say “we,” I don’t just mean Rhiannon & I, but also, my doctors. We are a team, working collaboratively to keep me alive & as functional as possible.

    But my body is precariously balanced, like a scale or these stones, and every decision, whether to add meds, subtract meds, change my diet or supplements, had to be figured into how it would impact the overall balance of my body.

    So precarious is the balance, there is no room for error anymore.

    The two most important factors became:

  • Stop the weight loss and the muscle wasting. This is likely, at least in part, because of the adrenal exhaustion. The body tries to save energy by shutting down digestion, and scavaging from muscle, which releases all sorts of toxins, as well as being generally disconcerting.
  • Don’t stress out, not over anything, since my adrenals are already exhausted, and we didn’t want them to get worse.
  • Over the last two months, however, all hell broke out in our life, and the balance is really teetering.

    The re-cap, for those who missed it:

    First, adrenal issues became worse, my mom moved and my shoulder disintegrated (SLAP tear – a Very Bad Thing). Then, Rhiannon’s father became critically ill, and after a week of complications, he passed away. I made a decision to take Rhiannon to Ohio (could hardly have been more stressful – thank goodness for the loving support of our friend, Kathy, with whom we stayed) knowing full well the ramifications for my body would not be good, and it could “push me over the edge.”

    Since we returned, I’ve been resting, resting, resting. Eating, a lot. But also having disturbing, and sometimes, frightening, new symptoms, that have led to multiple doctor visits & consultations.

    Here’s where I stand (err, lay):

  • Most disconcerting, I have lost 5 very precious pounds since my visit with my PCP 4 weeks ago, despite taking our blender & “medical shake” mix & assorted edibles to Ohio, and eating a fair amount at Kathy’s home.
  • New symptoms include episodes of extreme weakness & shakiness, often with trembling.
  • My brain tends to go into shut-down mode when this happens, and I get what Rhiannon calls the “lost puppy look.” If we are out (have had to go out for multiple doctor visits plus groceries, etc) she will take me by the arm & guide me out of the store. I have limited comprehension when this happens, way beyond brain fog. This is not entirely new. What is new is the quickness with which it happens, after just moments on my feet.
  • Something has definitely tilted in my adrenal system. I seem to respond to even tiny annoyances with a dump of adrenaline that induces the fight/flight reaction – usually, fight. In other words, I find myself getting really angry a lot over stupid shit that wouldn’t have bothered me before.
  • There is also The Hunger. The ravenous, give me food NOW or I WILL KILL YOU Hunger. This is certainly very, very new, since a month ago I was still forcing myself to eat. The Hunger comes on very fast, demanding to be satisfied immediately. It’s a very bizarre feeling. I’m craving sugar, salt, carbs, meat… and if The Hunger is demanding to be satisfied, there’s not much I can do to stop myself from stuffing my mouth with whatever’s easiest. Rhiannon has hidden the chocolate & sugary foods, since they aren’t good for me, and just feed the yeast (candida).
  • What my medical team thinks:

  • Knowing that I was in adrenal exhaustion before all this happened, and being very tuned into my body, I became very concerned that I was teetering on the edge of adrenal insufficiancy. Many of the symptoms I’ve been having are very typical of that. My medical team agreed.
  • The biggest concern with adrenal issues is adrenal crisis, which can be life threatening, and develop quite suddenly. Rhiannon has instructions on when to call 911 or take me to the ER, but hopefully we’ve headed that off.
  • Hypoglycemia (low blood sugar) is also a concern, and I had this as a teenager. It could account for some of the shakiness & trembling.
  • What we’re doing:

  • Many labs were drawn yesterday. I’m having a lot of bruising, so am concerned the leukopenia is back. Who knows what else will show up.
  • My PCP prescribed a glucometer (those things diabetics use to test their blood sugar) and wants me to check mine several times a day to watch for hypoglycemia.
  • My cortef (hydrocortisone), which I started on only a month ago to treat the adrenal exhaustion, originally at 5mg in the morning & 2.5mg in the afternoon, has been doubled. This is not a large dose. My adrenals should be making cortisol (the body’s equivilant) but they are not. This dose is just to replace what is missing, as cortisol is essential for the functioning of the human body. I definitely feel better on a higher dose.
  • I had been taking florinef (fludrocortisone) only as needed, a half tab every 10 days or so, but until my body stabilizes, I need more. This is to treat Neurally Mediated Hypotension (NMH), aka POTS. It is commonly seen in both ME/CFS patients as well as patients with adrenal issues, and is associated with very low blood volume.
  • I’ve started monitoring my protein & calorie intake again with an app on my phone. It has a goal weight for me as well as my current weight, and tells me how many calories I need to eat to gain weight. It’s pretty cool – even has a barcode scanner.
  • I started on Topamax a month ago at 25mg for a week, then 50mg for 3 weeks, always at night. This is the one & only thing we hadn’t tried for migraines, and we hadn’t tried it because it can cause weight loss in some patients. But it does seem to be helping with the number of migraines & their intensity, so we’re sticking with it, and bumping me up to 75 mg, the level most patients need to see real improvement in migraines. Some need much more. It makes me very sleepy & incredibly loopy, much to Rhiannon & Ben’s amusement.
  • Mostly, I’m just resting, staying cool, well hydrated, eating a lot, meditating & deep breathing to reduce stress, and trying to relax & let my body regain its delicate balance. It’s going to take a while, perhaps a long while.

    My shoulder still has to be dealt with, but not now, I can’t take the stress, whether of surgery or going out to see the orthopedist or having the MRI. So I’m dealing with the pain, which is pretty bad, hoping that the “sub-chondral loosency” that showed on the xray, and can mean the bone is getting necrotic, is not getting worse. I’ve already had one necrotic bone, so it does need attention as soon as I can safely go out.

    Deep breathing. Not thinking about it.
    Remembering how many friends & family members are out there showering me with Love and good energy…

    …thank you!

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