Tag Archives: medicine

An early warning system for health threats: the invaluable work of ProMED

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ProMED Mail is one of the most important information resources on the net, and most of us have never heard of it. It’s an email list which describes itself as a “global electronic reporting system for outbreaks of infectious diseases and acute exposures to toxins that affect human health, including those in animals and in plants grown for food or animal feed”.

Unlike the official clearinghouses run by WHO and CDC, ProMED is, in its own words, “open to all sources” and its reports are freely available to us all. ProMED was first to raise concern about the aggressive respiratory disease spreading in China in 2003, which became known as SARS. Before the Chinese authorities had permitted their officials to report the disease to WHO, Catherine Strommen, an elementary school teacher in Fremont, California, spotted a post in an international teachers’ chat room from a concerned teacher in China describing “an illness that started like a cold, but killed its victims in days”.

Alarmed, Strommen emailed an old neighbor and friend, Stephen Cunnion, M.D., a retired Navy physician and epidemiologist who now lived in Maryland. A practical, no-nonsense man, Cunnion started searching the web. With no success, he tried a new tack—sending an email to ProMED-mail, a global electronic reporting system for outbreaks of emerging infections and toxins. After quoting Strommen’s missive, he asked: “Does anyone know anything about this problem?”

The tiny ProMED staff conducted its own web search. It, too, came up empty-handed. On February 10, it sent out to tens of thousands of subscribers a posting headed: “PNEUMONIA – CHINA (GUANGDONG): RFI,” or Request for Information.

Thus did the world first learn of SARS, the new and deadly infection that would kill 774 people and infect 8,000 in 27 countries.

From an article by Madeline Drexler in The Journal of Life Sciences.

H1N1 Reports (Swine-avian-human Influenza A)

To keep up on H1N1 flu [I agree with the pig farmers, “swine flu” sounds like your big risk is getting it from pigs and pork, not human sneezes and handshakes] check the ProMED main page. While all the media is now frothing over with “news” about this disease, some of it sounds as reliable as alien abduction accounts. ProMED is timely and scientifically accurate but understandable by non-biologists. It includes valuable, and interesting, commentary on reports and questions: “this has been reported, but here’s what we don’t know, or here are local factors that must be considered in evaluating it”.

What ProMED does

ProMED is a program of the International Society for Infectious Diseases which began in 1994. It does not simply print whatever comes in—this is an extremely well-moderated list. A group of specialists checks and filters the reports, seeks more information from local sources and other experts, and provides judicious commentary. This group also “scans newspapers, the internet, health department and government alerts, and other information sources for inklings that an infectious disease, perhaps not yet reported widely, is threatening animal, plant and/or human health.”

I think I first signed up to receive the digests back when “mad cow disease” was emerging, and have since used ProMED to follow diseases such as anthrax and Ebola.
A topic of interest to me recently concerns outbreaks of measles and mumps in Western nations due to falling rates of vaccination. And as a former zookeeper I keep up on diseases of wildlife and zoo animals, including the fungal disease threatening whole populations of wild bats in the Eastern US. ProMED also covers plant diseases (mostly of crops).

All of this, infectious diseases of humans, wildlife, and crops, is of greatly increased urgency because climate change, global transport, and destruction of wild areas all lead to the spread of familiar diseases to new locales and the emergence of “new” diseases previously only found in remote wild areas. With regard to contaminants and toxins, governments are unable to deal with this effectively due to the political power of corporations and lack f oversight in producing countries. ProMED can’t make your food and furniture non-toxic, but it can sound alarms that might otherwise be silenced.References to a topic’s prior appearances on the list are attached to current reports, and archives are easy to access. Editions in French, Portuguese, Russian and Spanish are now available.

“Each posting is limited to 25 KB bandwidth—to ensure that it slips through an old-fashioned dial-up modem in the most remote areas of the world (where new infectious threats tend to smolder). ‘We use technology that was state-of-the-art in 1994. We use email—plain-text email at that. We don’t use fancy fonts,’ Madoff says. ‘The power of the Internet is its ubiquity and speed; it’s not necessarily in all the neat things you can do.’ [from Drexler’s article cited above]

You can subscribe here.

Toxins and contaminants

ProMED also collects, evaluates, and disseminates reports of health problems related to toxins and contamination of food and medicines. These can be quite unusual. For example, the case of the toxic leather sofas in Britain:

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Photo: Effect on leg of reaction to toxic chemical contained in sofas. From BBC.

A judge [in the UK] is expected to order several retailers to pay millions of
pounds to people who suffered burns and rashes from faulty leather
sofas….

More than 1600 people claim to have been affected by the problem. Tens
of thousands more people could have burns not yet traced to sofas.
The High Street stores, along with 11 others, may have to pay more
than 10 million pounds [USD 14.3 million] in compensation and legal
costs, the shoppers’ lawyers say. They claim that makes it “the
largest group compensation claim ever seen in British Courts.”

The sofas, which were manufactured in China, were packed with sachets
of an anti-mould chemical called dimethyl fumarate to stop them from
going moldy during storage in humid conditions.

Commonly known as DMF, the toxic, fine white powder has been used by
some manufacturers to protect leather goods like furniture and shoes
from mold. Even very small amounts can be harmful.

One sofa customer, who is well aware of the health problems caused by
her purchase, is a customer who bought a leather sofa suite from
Argos in April 2007. Almost a year later, she started to notice a
rash developing on her arms and legs. After a few weeks, her skin
started flaking off. She says the irritation was so bad, she was off
work for 2 months. This customer was seen by more than a dozen
doctors, who couldn’t work out what was causing the rash.

She said: “It was very, very painful; I couldn’t sleep at night; I
couldn’t walk about; I couldn’t drive; every time I did walk about,
the skin would fall off, and I would leave a trail of it, therefore,
I couldn’t go to work.”

Reliable histories of outbreaks/events

ProMED doesn’t just present breaking news and requests for additional reports; it frequently publishes very useful summaries of what’s been learned, and what action governmental agencies have taken. For example, “Melamine contaminated food products – Worldwide ex China” and “Prion disease Update 2009 (01)” (Mad Cow Disease and its human infectious disease, the fatal “variant Creutzfeldt-Jakob disease”.

Supporting ProMED

Believe it or not, ProMED is supported by individuals, with not a penny of funding from any government. That means they are independent (remember the movie Jaws, where the city council wants to suppress news of the shark attacks?) and fast to react. They sift a lot of news from all sorts of sources, put out calls for more information, and disseminate news in a responsible way.

If the work of this group seems like something you’d like to support, here’s your chance. They’re having a brief Spring fundraising campaign. To quote their email,

Your gift funds quick information every day – The economical, low-tech computer programs we use enable us to speed ProMED to your mailboxes, to post it online where anyone can find it, , and to provide the administrative services (accounting, office space, cell phone connections, etc.) required to support a small, agile worldwide enterprise.

ProMED-mail reaches over 50,000 public health officials, students, journalists, agricultural specialists, infectious disease professionals and others around the globe. Because it is free, subscribers in more than 187 countries have an equal opportunity to know when a disease outbreak occurs — and can spring into action when necessary to prevent or minimize its spread.

If the Spring campaign is past, here’s the main donations page.

Fibromyalgia, a personal overview

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Preface

This is the second long post I have written about fibromyalgia (fm); the first concerned my experience with methadone, chronic pain, and fm. Click on “fibromyalgia” in the subject list at right to find it. There will be more in this series. Inevitably there will be some overlap between them, some repetition.

At the end of this post I will include links to some sites I think are useful. Some provide summaries, for us non-scientists, to current research; others explain the disease, give hints on living with fm, and track new drugs.

I was diagnosed with fibromyalgia in 1992, although the symptoms began about 1984. In 1980 I suffered a disk injury which caused chronic pain and poor sleep from then on. I worked at a full-time job that was physically active and psychologically stressful. By the time the disk problem was resolved (1996), ending the muscle spasms, the chronic pain/sleep problem had developed into fm.

The pieces I am posting here about fm are based solely on my experience, observation, and reading.

Five million patients with no treatment or cure

It’s hard to imagine today, but as recently as the late 1800’s there were still big blank spots on the map of the world, places unexplored save by their inhabitants who kept their knowledge to themselves.

Fibromyalgia is a big blank spot on the map of 21st century medicine. Its inhabitants comprise about 5% of the women over 18 in the United States and 0.5% of the men (data from 1995 study, see note 1). Since there are about 150,000,000 women in the US, and about 86% are 20 or older (this was the closest I could come, quickly, to the number of “women over 18”), then 86% x 150,000,000 = 129,000,000 and 4% x 129,000,000 = 5,160,000 women in the US with fm. For men (who may be under-diagnosed for various gender-based reasons such as stoicism or physician bias toward fm as a women’s disease), one-half of one percent = 645,000. Fibromyalgia is also diagnosed in those under 18, although they are not covered in these statistics. Studies indicate similar prevalence in other countries although there is a wide variance in results (from under 1% to over 10%) due perhaps to varying protocols and definitions, and the small size of some studies.

When I say there are no treatments, perhaps I should explain that. There are treatments that provide some relief of some symptoms for some patients. It is worth seeking out what works for you but don’t go broke doing it. I know of no medical treatment that works significantly for all pwfm. Remember that every drug has side effects; they vary from individual to individual, and what may be intolerable to one person is an acceptable trade-off to another. I tried Lyrica, the first drug approved specifically for fibromyalgia, and had two problems with it: by the time it began to lessen the pain, it was too sedating; and it caused unacceptable weight gain. Also, being a new drug, it was quite expensive. I hope others have better luck with it.

Current research is very promising as far as symptomatic relief and sleep improvement. Check out the sites listed at the end once in a while to keep up on things.

There is no cure. Beware of anyone making such claims. When you read of Jane Doe who has had a complete recovery with Dr. Quack’s treatment, remember: it may be she never had fm, or had only a very mild case, or is suffering from self-delusions (as in faith healing), or maybe (gasp!) she does not even exist.

What are the symptoms?

The official diagnostic symptoms are widespread musculoskeletal pain, severe fatigue, and disturbed sleep, in the absence of another provable explanation (see note 2).

This is a typical description of the condition itself:

Fibromyalgia (FM) is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time. [National Fibromyalgia Association]

Here’s a list of common symptoms that are considered part of fm:

Severe fatigue

Poor sleep

Stiffness

Poor memory

Headaches

Restless legs

Irritable bowel

Overactive bladder

Depression

Exercise intolerance

Low back pain

Numbness and tingling

Painful periods

Muscle spasms

Jaw pain [TMJ]

Excessive tenderness

Sensitivity to bright lights

Sensitivity to loud noise

Sensitivity to perfumes

Sensitivity to weather changes

Excessive anxiety

Poor balance

Cognitive difficulties are very common: poor concentration, lack of memory, inability to locate everyday words when speaking, general confusion.

The group of pwfm is extremely varied. Some individuals have severe fm, others have milder cases. Some can work, others can’t. And any one person feels better and worse, sometimes in response to exertion or stress or the weather, sometimes due to no discernible cause. In addition, there are other very serious conditions sometimes found along with fm, such as lupus–but there’s no evidence that fm causes these other conditions.

Fibromyalgia and sleep

Sleep, for those with fibromyalgia, is officially described as “non-restorative”. This word feels inhuman and bloodless but it is accurate. People with fibromyalgia (hereafter pwfm) commonly describe their state upon awakening in the morning, as something like “feeling as if I’ve been hit by a Mack truck.” Before I heard this, before I was diagnosed, I used to say I felt as if I had been forced to run up a mountain all night and then kicked and rolled all the way back down.

The lack of restorative sleep, stage 4 sleep, may in itself be sufficient to cause the other primary symptoms which patients report: never-ending fatigue, of course, as well as overall muscular pain in which a pat can feel like a slap, inability to concentrate or remember, confusion.

Early on, a researcher (H. Moldovsky, 1995) reproduced the major symptoms of fibromyalgia in healthy young volunteers–males, as I recall–simply by depriving them of sleep. Parents of colicky infants could have probably saved him the trouble of performing the study. Having the sleep/fm connexion established, however, has not led to any substantial advances in treatment, let alone cure or prevention. No one can figure out exactly why we begin to sink into stage 4 sleep, and then are pushed back up into other less deep levels of sleep.

Without exception (as far as I know) pharmaceutical sleep aids do not promote a normal level of the stage 4 sleep (deep, slow-wave, non-REM sleep) which pwfm lack. It is certainly preferable to be unconscious in bed at night, instead of up reading in the living room for 4 or 5 hours. But sleep aided by pills doesn’t provide the rested feeling of a normal night’s sleep.

It is important not to oversimplify the association of disturbed sleep with fm. By which I mean, thinking that if only we could fix the sleep somehow, everything else would fall into place. Here are my reasons:

a) sleep may be the proximate cause of most or all of the symptoms, but it in turn may be at the end of a long chain of other things that have gone wrong, a cascade of causes.

b) Sleep, as a process, is very complicated and powerful: not only are there various stages or depths of sleep, but it interacts profoundly with the endocrine system. I won’t even add any other points of interaction with sleep, because once the endocrine system enters into the discussion as far as I can tell it is like 6 degrees of separation: now everything is connected with everything else, AND (unlike 6 degrees of separation) interacting and modifying everything else. Like a room full of kindergartners racing around all hyped up on sugary cupcakes, each one affects all the others as well as the total state of chaos. If we tie all the kindergartners to their chairs, have we ‘fixed’ this situation? If we achieve or impose ‘normal’ structures of sleep, have we ‘fixed’ fibromyalgia? There may be abnormalities in the sleep processes of pwfm that we can’t even detect, at a biochemical level. That said, obviously pwfm would be lining up in the snow to get the first tickets for that experimental ‘normal’ sleep!

PWFM: Our bodies are working differently

Many detailed studies have found specific physiological/biochemical ways in which pwfm vary from the norm: a substance that helps carry pain messages is found in abnormally high levels in their cerebro-spinal fluid; their threshold for pain is lower than that of other people; they suffer from a sleep disorder in which stage 4 sleep (most restorative stage of sleep) is continually disrupted; high levels of a nitric oxide-producing enzyme were documented by one research team to help explain why patients have exercise intolerance; excessive levels of oxidative chemicals that irritate the tissues (perhaps causing some of the constant overall pain) were found in the connective tissues in the tiny space between the muscle fibers; neurotransmitter disorders exist (serotonin and/or dopamine); atypical brain activity occurs in response to pain and other stimuli; and on and on. (For a partial list of such findings see this page on the excellent Fibromyalgia Network site.)

But, surprisingly, with all this detailed knowledge we seem no closer to real treatment or (in my dreams!) a cure. Is any of these abnormalities the “cause” of fm? For most, it doesn’t seem likely; filtering out the excess pain transmitter (Substance P ) from my cerebrospinal fluid, in some science fiction method not yet discovered, probably would not work. Whatever is causing my body to make or accumulate extra Substance P would just restore what it sees as my “norm”. Looking at this large and varied collection of anomalies, one may be the prime mover, and the rest secondary. Or, it is quite possible that we’ve not even glimpsed the “first domino” yet.

As far as I know, none of these differences from the norm are likely to become part of the process of diagnosing fm. Most are invasive and expensive, and not all of these variances would be found in all fm patients. Their value lies in directing further research, and in reassuring us that there is a physical basis for what we experience.

There does appear to be some genetic predisposition to fibromyalgia: diagnosis in mother/daughter, sister/sister, etc., is more common than is statistically likely. Now that genetic analysis has been made so much faster, research is going on to find out genes that may be associated with fm. A great development, but don’t hold your breath waiting for it to help you. Individual cases of fm vary greatly in severity and symptom profile, so this seems like it will be a complicated puzzle to solve even when/if gene differences are found.

Psychological aspects of fm

Pwfm, like many other chronic disease sufferers, are sometimes treated dismissively by doctors and friends/acquaintances. The disease is unfamiliar, non-fatal, rarely puts anyone in the hospital, and invisible as far as gross physical signs. “But you don’t look sick!” we hear, and I suppose it is meant to be encouraging but it comes across as suspicion of malingering, or at least denial of how crappy we really do feel.

Speak of a heart attack, rheumatoid arthtritis, diabetes, blindness, and you’ll rarely be greeted with “Oh, yes, I had that last week, I know just how you feel, but you’ll be fine with a good night’s sleep!” But fatigue, poor memory, achy body–everyone’s experienced this, and so they think they really do understand what we, and others with invisible chronic conditions, are enduring. And their understanding is generally based on experience which was mild, like the slight dulling of memory we all experience with age; or on something which improved quickly, like pain from over-exertion. I think it is better to say little about it, in most cases. Let your family know why your abilities are not the same as they were, and ask for their help, but otherwise keep your mentions minimal.

If you must raise the subject at your job, to ask for change to part-time work, or some other adjustment at work (provide seating for you, use plastic wheelbarrows instead of steel-binned ones, provide more varied work) choose your time and place, and be prepared with a letter from your doctor about your limits as to lifting, standing, etc. Present the supervisor with solutions enabling you to continue, don’t present yourself as a problem for the supervisor to solve. He/she has one easy way to do that! [Being quite unable to work is a different situation, one which I will talk about in a future post.]

Depression is not uncommon among pwfm and this has been used against us, as proof that it is all in our heads, perhaps even some sort of not-quite-conscious choice to be sick in order to get disability or attention. Anyone who could step into the world we experience, for a week or so, would see how untenable this idea is.

Before I was diagnosed, when I thought it was just stress, or even lack of exercise, I was forced to go through a process that I likened to throwing everything possible overboard off a sinking ship. In terms of one’s life, this means everything except job and necessary life-maintenance. Nothing fun–you’re way too tired to take in a movie, do some baking, play with kids or dogs, have fun with your dearest one. Concentration and memory decline sharply, further limiting one’s activities.

I already worked a fairly physical job but thinking I needed more exercise I got a puppy so I would have to walk and be active more. How did this work? Well, I was able to train her to take off my socks at night when I got home after work and took off my boots. She’d pull them off and then hand them to me, saving me two painful bending actions. [I could have asked my dear husband to do this, and he would have done so willingly, but I resisted things that would have made me feel more damaged than I already felt.] But the more exercise part was not helpful. Still, she was a lovely dog and worth all the extra exercise.

Anyway, depression seems like a very normal reaction for someone who has thrown overboard nearly all the enjoyable parts of life, is exhausted and in pain all the time, and has no hope for improvement (as you do after a terrible bout of the flu, which brings a similar exhaustion though not the overall pain).

If I’ve just lost my entire beloved family in a car crash, nobody except a reporter is going to ask me how I feel; anybody with a heart knows how I must feel and accepts it as entirely normal. This is depressive feeling arising from circumstances. Fortunately, our minds have ways to lessen, over time, the depression that results from the losses common to human life. Deep sadness and regret remain, but feeling a paralyzing loss of life’s significance, of its savor, gradually lessens with the passing of months or years for most people.

However, humans haven’t evolved ways to mute the depression from ongoing life-robbing conditions. Being a quadraplegic, being in a concentration camp, having severe diseases such as lupus, PTSD, or rheumatoid arthritis, these are a daily assault on the core of one’s being and one’s desire to live. Naturally, people get depressed, whether they try to hide it or not. [Please note that I am not setting up any comparisons of suffering here! I’m not saying x is like y or a is worse than b.)

There is considerable research to support the assertion that depression does not precede, and therefore perhaps cause, fibromyalgia: for instance, pwfm are no more likely than others to have been depressed prior to having the symptoms of fm; the degree of depression has no quantitative relation to the degree of pain; and chronic pain sufferers as a group, regardless of cause of pain, have a high rate of depression. I cite only one study (see note 3) but there are others.

A few practical recommendations

Another reason that depression and fibromyalgia have gotten connected in the minds of doctors is that, early on, it was found that certain anti-depressants seemed to relieve some of the pain of fm. Sometimes they do help, sometimes not. Maybe it’s placebo effect, maybe not. If you are offered anti-depressants for the relief of symptoms other than depression, be sure to discuss with the doctor what happens if this doesn’t provide relief, or if the side-effects (often weight gain is a potential side effect, and that makes you more tired) are intolerable. Make another appointment for evaluation of the treatment.

You must find a doctor who will work with you long-term, not one who writes a prescription and then feels his/her duty is done. Accept that fm, more than most conditions, demands that the patient take a very active role. A well-read fm patient is often more familiar with the disease and available treatments than her doctor is. That has been my experience and I have heard/read it from many others.

Find a doctor who can accept new information from a patient; bring in articles from medical or fm journals (not just news reports); and be diplomatic but firm if you really want to try something (or really don’t want to try something the doctor is pressing upon you). Learn from your doctor, ask questions. Educate yourself, learn coping mechanisms, stay away from anything that claims to “cure” this condition. When a cure arrives, believe me, we’ll all hear about it from many authoritative sources, not just from a TV report or the individual champions of a new herb or drug!

And as with any chronic condition, it is extremely useful to keep some sort of a daily journal: doctors and insurance companies really like record-keeping, and it will help you understand, for example, whether a given treatment is not helping or if the problem is that you had house-guests one week and worked overtime the next. No long entries needed, better two lines every day than two pages once a week. Rate your pain, your feeling of ‘functionality’, and your fatigue, from 1-10 (average for the day); note unusual events that could affect how you feel; note any variations in sleep such as getting to bed late, extra trouble sleeping, too painful to sleep. Okay, maybe that makes 3 lines, but if you can make yourself do it you will find it invaluable in dealing with your doctor, with any possible disability situation, and even with your fibromyalgia: it will give you a small feeling of control in that you can look for connexions, for cause and effect, for trends.

True clichés

Don’t give up. Your ailment is not your life. Don’t let it consume you.

Every person on this planet lives his/her life within some sort of limitations: intellect, means, education, health, social strictures or upheaval, and so on. If fm is one of your limitations, take it on. (The other choice is…?) Be flexible and smart and keep fine-tuning what makes you feel better (or less bad). Seek out the joys of life. Be as active as you can be physically and mentally, and don’t become self-absorbed. When you have a really bad day remember it won’t last forever (you may want to write this on the wall).

Notes

1.Wolfe, F et al. Prevalence of characteristics of fibromyalgia in the general population. Arthritis and Rheumatism 38:19-28, 1995.

2. The formal diagnostic criteria, established in 1990 by the American College of Rheumatology, are:

1. A history of widespread pain in all four quadrants of the body for a minimum duration of three months.

2. Pain in at least 11 of 18 designated tender points when the doctor applies four kilograms of pressure.

3. Giesecke T, Gracely RH, Williams DA, et al. The relationship between depression, clinical pain, and experimental pain in a chronic pain cohort. Arthritis Rheum 2005; 52:1577-1584

Links

The Fibromyalgia Research Blog

The Fibromalgia Information Foundation Information is provided by clinicians and researchers at Oregon Health & Science University in Portland, Oregon, USA and invited specialists from other locations. OHSU has an excellent clinic and research effort dedicated to fm (based on my personal experience).

The Fibromyalgia Network Also publishes the quarterly Fibromyalgia Network Journal; I recommend it. You can sample articles online to see if it is for you. Try to get your public library to add it.

The American Fibromyalgia Syndrome Association, Inc. (directly funds research)

The National Fibromyalgia Association

RomanMetalwork.jpg

Adornment to a Roman legionary’s horse harness; copper alloy with glass mosaic. First century AD? Source.

Methadone and chronic pain: a personal account

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NOTE: Four years after this post first appeared, it is still drawing comments from people searching for answers about chronic pain relief. I’ve learned a good deal from some of these comments, and in particular I want to remind readers that my experience with methadone is not typical in one respect: by the time I switched from other opioids to methadone, my most severe pain had been dealt with. My pain from fibromyalgia is chronic but not really bad if I manage my activities. A reader posting as Fireside Academy reminded me that we have to evaluate methadone (and other pain meds)  “relative to the pain experience without it”: if my pain had stayed at the severe level it was at when I started with opioids, then methadone might have been a positive thing for me. 

Almost all medication for chronic conditions is two-edged, so that we have to choose—are the benefits worth the negatives. All opioids present problems, yet other alternatives may be nonexistent. Go in with your eyes open, remember you need to retain control over the medication rather than letting it control you, and be sure you can rely on your pain prescriber to help you through the hard parts. I recommend scrolling down to Fireside Academy’s post (Feb. 19, 2012) to hear from someone for whom methadone is being beneficial.

I’m going to write the article I wish I’d been able to find when I was taking methadone for chronic pain. The degree of detail will probably make it of little interest except to those using methadone or considering it. (This is not a discussion of pain that results from a terminal disease, or from a disease that is temporary but severe, like pancreatitis. In such cases, opioids may be the best or only choice, and you are entitled to relief.)

I began taking morphine, and then methadone, for pain in 1997 because of crippling muscle-spasm-like pain, every day, from a long-untreated back injury. The injury had occurred in 1981; the orthopedists couldn’t see anything on x-rays, intimated that I was a malingerer, and wrote me off. Constant pain and disturbed sleep probably triggered the fibromyalgia that began to develop after a few years; by 1996 I was unable to work even part-time because of the deep fatigue of the fibromyalgia, its all-over body pain, and the back pain. At that point something had to change.

After finding no medical help in my area I found a pain doctor in another state and went to see him. He could see disc damage on an x-ray, and showed it to me. This is not particularly definitive: pain often exists without visible disk or vertebral damage, and visible damage often occurs in people who report no pain. But this doctor could see my pain in my face and how I moved, and that seemed to be the clincher for him regardless of how the x-ray turned out.

He put me on morphine and made an appointment for me to come back for a lumbar nerve block. This would only last 3-6 months but during that time the muscles that had been clenched with pain for 16 years could gradually unclench and be exercised. The nerve block worked exactly as planned, and I exercised consistently and was able to be more active. As far as back pain goes, I haven’t had a day since which was as bad as any hour in the previous years.

But the fibromyalgia pain remained. It’s felt all through the body: the pain threshold is reduced so much that light pressure feels like pain, a pat can be like a slap, and it hurts to lie in bed, sit, walk, lean against a wall. Extra pain is felt for days or weeks in muscles that get used even a little. As a result I wanted to stay on the morphine pills, thinking that it probably helped.

I couldn’t afford to keep traveling to see the out-of-state doctor so I looked around for a local pain doc and this time I found one. He switched me to methadone when the morphine became less effective. The methadone’s effect, too, became less over time.

Lesson #1: opioid effectiveness lessens as the body becomes accustomed to it. Opioids are not, therefore, a very good approach to chronic pain.

I think this second doctor was hoping I’d want another lumbar nerve block, a more profitable therapy than simply seeing somebody every couple of months for a prescription renewal. As it became clear that continuing exercise was keeping my back pain under control, he stopped inquiring after it, and began to treat me rather brusquely. I was still under the impression that the methadone might be lessening the fibromyalgia pain so I wanted to continue it, but I was feeling more pain, not less. The doctor raised the dose somewhat; he (rightly) resisted my efforts to raise it more, but never discussed any other pain relief measures with me. Gradually I became aware that while I was physically dependent upon the methadone, enduring the side effects and the 6 doctor visits a year, I was receiving diminished benefits or maybe no benefit at all.

Addiction and chronic pain

Here a word about “addiction’’ and “physical dependence”. During the time I took methadone, I have seen a total change in how the medical establishment thinks about addiction and pain patients (though not all members of it have made this change). In a nutshell, addiction is now the term for someone who is both psychologically and physically dependent on a drug. Pain patients rarely fit this definition: they rarely get any “high” from morphine, methadone, codeine, oxycodone, etc. and they don’t start taking it because of a psychological need to feel “different”. However, the physical dependence will cause the same withdrawal symptoms for the pain patient as for the addict, and constitutes a severe barrier to anyone trying (as I did) to get off of methadone without the support of a knowledgeable doctor.

Doctor or pusher, patient or customer?

Why was I trying this without help from my pain doctor? Because he refused to help, denied that there were any pharmaceutical aids for getting through withdrawal, and ignored my reports of having gone through painful withdrawal five times and failed every time.

One of the realities about being dependent upon a pain medication is that you are then dependent upon your doctor. Don’t like him? Not sure you are getting the best treatment? Better not change or you may be viewed as a “doctor shopper” and drug seeker. Of course you’re seeking drugs––that is what the medical establishment has offered you––but the hysteria from the war on drugs, another one of those “long wars,” has infected the practice of medicine with fear and prejudice. Why fear? The DEA, or state licensing boards, occasionally pounce upon pain doctors for prescribing opioids to too many people, or in cases of accidental overdoses. Doctors can lose their licenses, be pilloried in the media, even be charged with responsibility for someone’s death.

So the situation can easily become much like that of a drug dealer and his customers: the doctor/dealer (skeptical of your professed pain) has contempt for you, or is on guard watching for signs of scamming but is obliged to treat you and perhaps wants your money, while you come to loathe him but tailor your every word and expression to avoid getting cut off. I hope that most doctors do not fit this description. But the patients, who are locked into a relationship with wildly disparate power on the doctor’s side, must inevitably come to an uneasy awareness that their wellbeing depends on a “controlled substance” which is entirely controlled by the doctor, and which carries a public stigma of association with being a junkie, a weakling, a fraud, or all three. This is not like knowing you depend on your physician for your insulin prescription or your heart medication. A diabetic or heart patient is never suspected of getting medication for personal pleasure, or in order to sell it to schoolchildren.

When I first visited the callous pain doctor, who “treated” me for ten years, I was required to sign a form. He described it as a contract but all the obligations were on my side. I had to agree that I was aware of undesirable effects from opioids including dependency, and that if I lost a prescription or a month’s worth of pills I would not expect the doctor to write a replacement prescription. The importance of this latter provision is not one that can be understood by the patient until later. Once you’ve become dependent upon opioids, and experienced even mild withdrawal because you’ve forgotten a pill or been a few hours late, you realize in a different way what it would mean to lose a prescription and be without the drug for a month. Each month’s prescription form had to be picked up by me personally rather than faxed to the pharmacy or renewed by telephone (state law I believe, although the out-of-state doctor’s prescriptions had been mailed or faxed to my home-town pharmacy), meaning that I made about 120 trips of an hour or more each way, not counting stopping and waiting at the pharmacy on the way home. That’s 120 opportunities to have my wallet stolen, or lose it, or to get in a wreck in which the all-important piece of paper might be destroyed. In such a case, maybe my oh-so-compassionate doctor would have believed me and replaced the prescription that was in my stolen wallet, but the withdrawal is so severe that you feel such a risk is unacceptable. And you cannot avoid this consciousness of risk, it’s inherent in the dependency, and so there is constant anxiety, insecurity.

All medical conditions with unknown mechanism of action (such as fibromyalgia), or with no objective tests to demonstrate their reality and severity, are considered suspect both by the public and by some of the medical community. Psychiatric conditions such as schizophrenia and Post Traumatic Stress Disorder have for decades been discounted or blamed on some form of willful failure to suck it up and get on with your life. Any pain not associated with a known visible verifiable medical condition is also likely to be dismissed. Those medical practitioners who dismiss your pain also dismiss you. The more you seek help from them for this sort of pain, the less credible you are, the less seriously you are taken, until finally you may be seen as merely a stereotype: hysterical woman, somatizing patient with imaginary self-serving pain, seeker of drugs and disability.

For these reasons and others (such as fearing he’d simply cut me off, or reduce my dose and ignore any increase in pain), I never pressed my pain doctor about helping me to quit methadone until the last year or so. For his part, he demonstrated to me via a custom-mixed liquid containing dissolved methadone, of a strength unknown to me, that…what exactly did he demonstrate? After a month I came back and said my pain was worse; he said, “But the dose in the liquid was higher than you had been taking in pills.” Therefore the methadone doesn’t help your fm pain (and, implied, maybe you’re faking the whole thing). I quibble with this methodology but I was ready to accept his point and it was after that event that I made my longest most serious attempt to get off of methadone.

Over five months I cut the dose gradually (unknown to him: another result of the doctor/pusher fear-relationship is that the patient hoards medication––you’d be a fool not to––so why let him know I’d reduced the dose?) until for two months I took only a crumb twice a day, then once a day. Then I stopped altogether. The first day was okay; I’d been having various withdrawal symptoms for months anyway. But then it got worse, much much worse. For the next seven days I slept not at all. I quit even going to bed, just sat in the living room reading or surfed the web. After the first few nights my fatigue was so bad I couldn’t read, I just sat, or walked around. Nights were endless. My body was often wracked with bone pain, as if every bone were being crushed. My mind was flighty and ungovernable, my guts were gnawing as if I were starving. The methadone was right there in the bathroom but I persisted for seven days. On the eighth day I realized that 1) my symptoms were not lessening in any way, and 2) I couldn’t take another night without sleep. Within three hours of taking one of the hated white pills I was in bed asleep; the next day I felt almost normal.

The next time I saw the pain doctor I told him I’d done this and failed, and asked him how he might be able to help. Was there no sleeping medication, no tranquilizer or other drug that could be used temporarily to blunt the withdrawal? “No, there’s no magic pill,” said he. I felt like a demanding child who had asked for fairy dust to fix her boo-boo. When I pressed him, reiterating the symptoms, he said they were merely psychological.

Maybe I need a new doctor

Now I felt some solid ground under me. Research on methadone withdrawal had not yielded me much but I had found out what some of the symptoms were, and mine were common. This guy was wrong, and I had hope of finding someone who knew better. I tried my primary care physician; she told me that my symptoms were psychological. Just like him, she said that I could not possibly have had symptoms for seven days, because “even heroin is completely out of your system in 3 or 4 days.” She used the same exact phraseology as the pain doctor, whose office was in the building next door. Right, I thought. I’ve been seeing this woman for eight years and she parrots someone else’s words, not trusting my report of what I experienced. My pharmacist was more well-informed and confirmed what I’d experienced, giving me a few leads on alternatives.

The pusher drops the hammer on me

I dithered around for a few months, hesitant to step off into the unknown of a new doctor. Then came the day when my pain doc informed me blandly that he was “no longer comfortable prescribing methadone” for me since my pain was mostly fibromyalgia. His plan was to phase me off over the next two months. Sixty to zero (milligrams), zoom. I tried to be calm and asked “What about the withdrawal? I told you that it was intolerable, how are we going to get me through that?” “Those symptoms were merely psychological; it’s up to you to deal with them.” He was adamant. I was panicked. Abandoning calm, I asked him what he was going to do when I ended up in the ER. He ignored me. That was the last time I saw him. But I do hope he is comfortable.

It was the psychiatrist that I see (because fm has limited my life so much that eventually I became pretty depressed) who really came through for me. When I told this kind man about the two-month ultimatum, he took me seriously––he actually knew about the symptoms of withdrawal––and went online to research the matter further. In a physicians-only discussion group he contacted a pain doctor experienced in managing methadone withdrawal who confirmed my experience and spoke of alternatives. The phrase “managing methadone withdrawal” was like water in the desert. My psychiatrist recommended a different local pain doctor and I went to see him.

The new pain doc allayed my fears immediately. Yes, the symptoms I’d had were common. Yes, they were awful. Methadone, he said, is a synthetic opioid and it gets into the body more persistently than heroin; it can even be stored in the bone marrow, probably causing that unbearable bone pain I’d had. But there were ways to minimize the symptoms, there were choices, and he was sure we could get me through it.

Lesson #2: There are caring and knowledgeable pain doctors out there but you will have to know what you are looking for, and work to find them. Make a list of questions to ask people who recommend a doctor, and to ask doctors themselves.

From my experience, obvious questions for a prospective doctor would be:

What are the short- and long-term health consequences of the drugs you may prescribe? What different conditions may be contributing to my pain, and for each, how effective are the drugs you are prescribing? If and when I need to go off of opioids, how will you help me? How much experience do you have in this end of the process?

And ask yourself if you are willing to hand over so much control of your life, to this individual and this drug. I don’t travel much, but every time I did I worried about losing my methadone, or having it confiscated by airport security. Once when I travelled out of the US, to Chile, I was so concerned I got the pain doc to write me a letter verifying that I was authorized to have this controlled substance, this narcotic, so that I could feel less likely to end up in a foreign jail or have the medication taken away.

The first day I saw the new doctor, October 5, was the last day I took methadone. Surprisingly, he put me on morphine, a lower dose than the methadone, because it would moderate the withdrawal from the methadone and be easier to quit. (According to him, heroin and methamphetamine are also easier to quit than methadone.) And he prescribed sleep medication. He told me to call if things got too tough and he would adjust the treatment to work better.

The first two weeks were the worst; I was weak as a kitten and slept 18 hours a day without sleeping pills. After that, my strength gradually came back, and I began sleeping just at night (with the sleeping pills). I had some physical symptoms such as endless gnawing in my stomach, and constant sinus headaches and earaches, but after the first two weeks my mind and psyche began to feel completely different, as if I were coming out of a ten-year tunnel. My husband remarked on it: I was more talkative, personable, cheerful, confident. He felt he was seeing a person who had been gone for ten years. So did I.

Lesson #3: methadone does a lot more to you than just causing constipation, sweating, and sedation.

The amount of morphine was cut each month, and withdrawal symptoms lessened. On Feb. 5 the morphine ended––an anticlimax, no real difference!

I still have the sinus headaches, milder now, but if they never go away I am still so much better off that it’s hard to believe.

Life after methadone

I’m glad to see the well-known methadone side-effects go, of course; my attacks of sweating used to be so bad, even when I was sitting still, that my hair would be drenched, and outside activity would cause sweating so heavy that I would feel faint. This is much improved now, though still not normal. Then there’s constipation, which sounds like a minor thing, but when I had a colonoscopy I was told that I was at risk of getting diverticulosis because of the methadone-induced constipation.

As for sedation, at one point early on my old pain doctor put me on dextroamphetamine because I was too sleepy to do anything. It was easy to see why the amphetamines are so popular; I felt wonderfully energetic, smart, lost weight…but not a good long range life plan. Without the amphetamine the methadone caused fatigue on top of that caused by fibromyalgia.

And my old pain doctor had told me once, in an offhand manner after I asked about periods of breathlessness, that longterm methadone use could cause heart problems, but not mild ones like breathlessness. “How would I know if this was occurring?” I asked him. “You wouldn’t,” he said, “you’d just have a life-threatening episode of heart failure.”

But it was the completely unexpected and, as far as I can tell, undocumented changes that really have made life different. Chief among these are the psychological changes that I described above. I’m more outgoing, more able to engage in activities with small groups of people (though––typical of fibromyalgia––crowded places/noise/smoke/bright lights make me exhausted very quickly, so I avoid them). My depression used to edge back despite anti-depressants, but that has not happened in the three months since I went opioid-free. I feel more pleasure in life. Both my attitude and my energy are improved.

While taking methadone I must have dreamed at night, but remembered dreams perhaps once or twice a year. That made me feel cut off from a part of myself, and I am pleased that now I’m remembering dreams a few times a month.

Physically also there were unexpected results. I no longer eat between meals, feel no interest in doing so. If my stomach growls I am not seized by uncontrollable impulses to eat something. And what I eat has changed. Always a chocolate lover, I’d worked up to 1 or 2 candy bars every afternoon while taking methadone; the pull was almost irresistible, and the pleasure though short-lived seemed like something I could not give up. Now, the candy bars from last October are in a box in the pantry; in six months I’ve eaten one, and in the middle realized it was really not all that great. We got a box of See’s candy after Christmas and I enjoyed it a lot, but I can take it or leave it. The opioids are notorious for giving junkies a sweet tooth, so maybe I should have anticipated that my chocolate craving would go away. But it’s worth noting that the craving vanished during the first month off methadone, while I was still taking morphine.

Here’s one that seems very much out in left field: for years my vaginal tissues have been extremely tender and painful, even bleeding, and my gynecologist had concluded it was just post-menopausal stuff. I declined full-on hormone replacement therapy and nothing else we tried helped. Two or three months off methadone, and this began to change. No, I cannot see any causal connexion either, but that doesn’t mean that there isn’t one. It’s not psychosomatic, because I never thought about it as something that might be related to methadone. I mention this––even though I am not really comfortable discussing such matters in public––because I’ve never seen this in any list of methadone effects, and no woman would ever think to associate the two.

My reason for this post is to get more open discussion of all these issues related to chronic pain management so that others will have better information, feel less stigma about pain and opioid use, and make better decisions. I was ignorant, felt helpless and trapped, and let the matter go on for far too long; nothing can give me those years back.

Before you try opioids for chronic pain

Consider all these factors carefully before you embark on long-term use of methadone, morphine, codeine, oxycodone, and so on: Efficacy will lessen over time. Side effects, including ones you never expected and may not attribute to the drug, will increase. Dependency comes with the drug, including dependence upon the prescriber.

Educate yourself about your condition and any proposed drug. Choose your provider very carefully. Try other pain-relieving or pain-distracting methods: at any dose you can live with, opioids don’t entirely relieve pain, so you may as well look for another source of partial relief that is adequate without all the baggage of the opioids. Look for a way to feel a sense of some control over your pain: find out what aggravates it and what distracts you from it.

Don’t be too skeptical to try things like warm-water exercise or swimming, resting with your favorite music, or finding a hobby or interest that distracts you and brings you into the “flow” mental experience described by Mihaly Csikszentmihaly (whose books (see footnote 1) are a lot easier to read than his name is to spell!). “Flow” is that mental and emotional state of being so involved in a positive activity that time passes without notice. Its requirements are that the activity be something you want to do, and something that is challenging (with lots of potential for you to improve and grow) while not being so hard it’s frustrating and unpleasant; and having clear goals––my goal is to get better at this, and my next step is to try such and such. People can experience flow in all sorts of work, craft and art, and mental activity: knitting, fishing, fixing a car, playing music, doing puzzles, reading, learning something new, you name it. Think of a kid putting together a model airplane or choosing to practice something over and over. It’s basic to the human brain, but is pushed away by stress, time pressure, worry, and so on. Get back to it at times and for that time it can push away pain and stress, and give you a little feeling of control and of life being worth living in spite of pain. Things that have worked for me include reading, doing online research, bird-watching and other outdoor interests, writing, good conversation, watching movies, and drawing or painting (in which my goal is to get better, and considering where I started that is no problem! but it’s okay, I see little improvements and I enjoy the process itself, which is key).

Some kinds of pain respond to mild exercise, which can produce endorphins, distract the mind, and tone the body so it supports movement with a bit less pain. Go slow and be determined. There’s increasing research to show that chronic pain often causes depression, and depression can be treated. If you are carrying pain around every day, that doesn’t mean you also have to carry around depression. And, it’s possible to use some opioids like codeine off and on, just when the pain is worst.

Keep learning about your condition, keep asking questions, keep trying positive things that might help even a little.

None of this is meant to minimize pain, tell you to wish it away, or imply that you “should” be able to control it better than you are. Pain is real. Until people live with chronic pain they don’t realize how draining it is, mentally and physically.

But. As the saying goes, “Every day above ground is a good day,” and it is possible to make (almost) every day better.

Footnote

(1) For example, Finding Flow: The Psychology of Engagement with Everyday Life. Your library probably has some of his books, or do a websearch and read an article or two. Some lectures of his are online here.

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Image above: Methadone molecule, from 3dchem.com