Cymbalta and fibromyalgia, my experience

Since being diagnosed in 1992 I’ve tried quite a few medications hoping they’d help the symptoms of fibromyalgia. Only two have made the cut; most of the others had no effect, or (like pregabalin and Lyrica) were too sedating to find out if higher doses would work.

Currently I take only two medications for fm: a very low dose of trazodone, an old (generic and cheap!) anti-depressant, to help me sleep, and a new anti-depressant, Cymbalta. The Cymbalta is actually for depression. I began it after the previous anti-depressant, Celexa, stopped working. I didn’t know it had stopped working, I thought I was just feeling how I felt. Dark horizons closed in on me and I saw that life really was merely a period of pointless suffering, so I told the doctor who prescribes for my depression that I thought I might as well quit taking anything and just experience reality. Afterwards I was embarrassed at my lack of insight into my own mental processes, but by its nature depression’s a condition that disables self-analysis and replaces it with the exquisite existential pain of being alive and aware. This is why depression thrives on the isolation it so effectively induces.

To be honest I must say I still feel there’s a strong intellectual case to be made that “life is merely a period of pointless suffering”… except that the medicated me retracts the word “merely”. And knows that the intellectual perspective is not the whole picture. Like an extremely protracted wait in an airport, life can be viewed as just something to endure, or you can notice what’s going on around you, help out some other travellers, go explore a different part of the airport, meet other people, and so on. Then, indeed, you die. But in the meantime, why not make the most of where you are? There are pleasures to be found, skills to master, a marvellous natural world of birds and bugs and clouds, and considerable satisfaction in doing something that lessens the overall quotient of crappiness and suffering. It’s even possible to find other people whose company you enjoy, people you love.

But without a functioning anti-depressant, I did not feel this way. So is it the “real me” speaking now, or just a chemical? Or was it a chemical imbalance that made me feel even worse than this guy (Joe Btfsplk, from Al Capp’s Li’l Abner)? Irrelevant hair-splitting. Unproductive line of investigation. Phooey on it.

Joe Btfsplk, Al Capp's character with a black cloud over his head always raining misfortune on him

Okay, so, Cymbalta works for me (for now) as an anti-depressant, but what about the fibromyalgia connexion? It’s touted as a drug that helps with fm pain, which is why my doc and I agreed on using it despite its expense. At first I noticed no difference. Pressure is still pain, it hurts to hold onto the steering wheel or lean against a wall or sit or stand. Then the doc asked me, after using it for the better part of a year, if it had helped the fm. Didn’t really think so. Later, I looked back over what has changed in that period and there’s one huge thing: I have been able to stick with an exercise plan of walking, to the point where I could walk 2 miles with the first mile being all uphill. And when I challenged myself after a while to walk the uphill mile without stopping I found I could. Always before, no matter how gradually I increased the exercise, within a couple of weeks (or less) my pain and exhaustion would spike so much I’d have to stop for 5 or 6 days. You never get any “training effect” that way. You’re always struggling and always being knocked back to the starting point. This fantastic feature of fibromyalgia (and of chronic fatigue syndrome) is called post-exertional malaise.

Unlike my previous anti-depressant, Cymbalta (Duloxetine) doesn’t just increase the amount of serotonin available in my system, it does the same thing for norepinephrine. What does this mean? Here’s a clue: norepinephrine is also called noradrenaline. It’s secreted by the adrenal glands and, along with adrenaline, it has actions throughout the body and also in the brain, mostly aimed at revving you up—increasing heart rate, blood pressure, and blood sugar; raising the metabolism; in general, preparing the body “to take immediate and vigorous action”.

Since even the researchers aren’t sure exactly how anti-depressants “work”, I’m not going to delve into it any further here. Suffice it to say that some part of norepinephrine’s action enables my body to deal with exercise more normally, and adapt to it. My walking muscles have gotten stronger, my aerobic endurance has increased, and I’ve even gotten to where at the top of the hill when I branch off onto a level road to cool off before the descent, I feel really good! Like I could walk for hours! That’s something I never thought I’d experience again, the enjoyment of physical exercise and of getting a little fitter each time. It’s probably partly the oft-mentioned endorphins that those smug runners get, and partly personal satisfaction at achieving the goal once again.

Each time it gets a tiny bit easier. At first when I started doing the uphill half without stopping I was flogging my body onward, unconscious of anything around me, totally absorbed in persevering. I had to sit down at the top, out of breath and exhausted. Now, I walk on for another 15 or 20 minutes (not uphill—yet!) without difficulty and then head back. Sometimes I have minor muscle soreness that lasts a day or two, and one knee protests that it is too old for this, but I’m not in pain and drained of energy for days as I used to be (prior to Cymbalta) after doing short level walks.

The catch about Cymbalta is the expense. I take a high dose, 160 mg/day, and it costs about $10 a day. (Last quarter the manufacturer, Eli J. Lilly, made profits of $1.2 billion on total revenue of $6.25 billion; 20% profit, not bad.) My insurance, the Medicare Drug Plan, covers most of it and so do some regular health insurance plans. It’s prescribed for depression, fibromyalgia, neuropathy, and some forms of chronic pain. There will be no generic version until the patent expires in 2013. Online ads for generic cymbalta should be regarded as scams, as if someone wanted to sell you $20 bills for $5. It can’t be the real thing from the manufacturer, and you have no idea what it might be.

There is an organization, The Partnership for Prescription Assistance, which “helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Many will get their medications free or nearly free.” This organization is sponsored by America’s pharmaceutical research companies. There is no charge for getting help from the PPA. You can find more information about them here. Your doctor may know about other ways to save money on prescriptions; ask! Also, inquire about free samples to get started and see if it helps you.

Daydreaming—my brain didn’t get that module

Until I read an article in Scientific Mind this month about daydreaming (“Living in a Dream World” by Josie Glausiusz; not available for free as far as I can find), I wasn’t aware that I lack this mental activity. Definitions vary; one used in the article is that daydreams are “an inner world where we can rehearse the future and imagine new adventures without risk“. Another is “imagining situations in the future that are largely positive in tone”. I would add something to differentiate daydreaming from planning—perhaps that daydreaming includes emotional reactions.

It’s not clear in the article whether research results apply only to positive fictional imaginings or to routine planning and review, as well. The latter is much more common. Also the author conflates daydreaming and the mind’s use of off-task time to solve problems non-consciously.

People can daydream in extravagant adventures à la Walter Mitty, or more mundane imaginings of how good that hot bath will feel after work, or how happy one’s child will be when she receives her Christmas present. Most people, the author says, “spend about 30 percent of their waking hours spacing out, drifting off, lost in thought, woolgathering, in a brown study, or building castles in the air.” And it’s important to our sense of self, our creativity, “and how we integrate the outside world into our inner lives”.

I remember, as a solitary child, pretending to be Superman or Tarzan, but not often; I read, instead. After the age of 10 or 12, I don’t think I had imaginary adventures at all. Not surprisingly, I’m also unable to visualize scenes: “Imagine yourself on a tropical beach” is impossible for me to do. I can think, okay, I’m on a tropical breach, it is warm and sunny, and so on, but there’s no sensory aspect to it, just words. Similarly, my memories of the past (mostly gone now due to fibromyalgia cognitive damage) are all just words, as if someone had described a scene to me rather than my having experienced it. There’s no “mind’s eye” in my mind. In novels I usually tune out while reading the descriptions of landscapes and people; no corresponding mental pictures rise in my mind.

Daydreaming can be escapism but it can also be a way of trying out different futures, and experiencing the associated emotions. I think this could also help motivate a person toward a chosen or hoped-for future, by allowing advance tastes of its rewards or of the misery of its alternative. I make decisions about future choices and I make plans but I don’t try them out mentally in advance, and I also (in jobs, for example) tend to stay where I am rather than striving for something different. I’ve thought of myself as lacking in ambition, but maybe it’s more that I don’t have a way of modelling the future choices with emotional content. Mostly I’ve stayed in jobs until they became intolerable, then moved on, sometimes with no replacement in mind. I can’t even really visualize ideas for a vacation or a trip, especially to someplace I’ve never been.

So, what do I do with that 30% of my waking hours that other people use for daydreaming? Not enough. Sometimes, for a couple of minutes, it seems nothing is going on in my mind, or merely observation, without commentary, of what’s happening around me; I have no idea how typical that is. But mostly the engine’s running, chewing over what’s in front of it. Why are things this way, how could this activity be done better, how does this work, that sort of thing. I used to do a lot of sequential thinking, as if working through thoughts with pen and paper, exploring ideas and putting things together, taking them apart, finding correlations and causes. I could continue working on different mental projects during intervals across days and days, and sometimes wrote that way—at the end of the mental work I’d have an outline and some exact wording to put down on paper. Then I’d revise and expand, but I could work out a lot of it mentally and recall it. No more, since fibromyalgia. Thinking is often slow and I can’t remember from one day to the next what I came up with. Sometimes thoughts flit through and are gone before I can even try to remember them. This is one of FM’s major losses, for me, both a loss of pleasure and a loss of what I can accomplish.

Maybe reading fills the role of daydreaming for me. I read a lot, about equal amounts fiction and non-, and if circumstances prevent me from reading for a couple of days I feel the deprivation. The article mentions non-daydreamers only in passing: “Cognitive psychologists are now also examining how brain disease may impair our ability to meander mentally”. If my impairment is due to a brain disease, it’s one I’ve had since early on.

Others, it turns out, suffer from the opposite disorder, daydreaming that is a compulsion or simply so enjoyable that real life takes a back seat. Some have a second life in an alternate world where continuing characters age just like people in the world the rest of us live in. They may fit this narrative into available mental down-time in their lives, or spend up to 90% of their time “away”.

I find it strange that it took me so long to discover that other people spend a third of their waking hours on a mental activity which I lack entirely. It goes to show how little exchange there is among us humans regarding how we think, how our individual minds work. Humans yo-yo between xenophobia—members of other groups are different, dangerous— and “we’re all really just alike”, but a study of psychological research found “significant psychological and behavioral differences between what the researchers call Western, Educated, Industrialized, Rich and Democratic (WEIRD) societies and their non-WEIRD counterparts across a spectrum of key areas, including visual perception, fairness, spatial and moral reasoning, memory and conformity.“ Maybe in daydreaming as well. But nearly all psychological research is done on WEIRD subjects, for both practical and ethnocentric reasons, so who knows? Same for neuroscience; who’s going to airlift fMRI equipment to the lands of the Yanomamo and then persuade them to lie down with their heads inside?

ScytheSharpeningLeighton

Still, the article raised in my mind some questions we could look at right here in the post-industrial West. If people were prevented from daydreaming, by some technological device probably not yet invented, how would they feel? (Recalling the familiar ‘fact’ about deprivation of night-time dreaming making people hallucinate, I looked to see if it was true, and apparently not.) What proportion of people don’t have imaginative daydreams, and is this always a sign of brain disease or dysfunction or just a normal mental variation? We characterize one sort of excessive negative daydreaming as “catastrophizing”; what about individuals making deliberate use of negative or positive futures, to influence their behavior? And how can “daydreaming” be more precisely separated out from other mental processes such as planning, brooding, brainstorming, and worrying?

Muse on it all, and see what your daydreaming mind comes up with.

King vulture

King vulture photo by Tambako the Jaguar, flickr.

Chronic pain—resources for patients

I haven’t written about chronic pain or fibromyalgia for many months, though I think about those subjects every day. A comment on one of my posts (Methadone and chronic pain: a personal account), raised the question of how a patient can help his family understand what he’s experiencing. Chronic pain can change a person in so many ways from facial expression to level of activity, interest in sex, mental acuity. For family, friends, and people at work, the changes can be frustrating, mysterious, threatening. What does this new behavior mean, who is this person, how long will it be like this? Why can’t s/he just live with that pain, why does it have to affect everything? Is s/he behaving like that because s/he doesn’t love me and the kids any more? Is it ever going to change back?

The person in pain is feeling a complex mix of emotions too, wanting to communicate and be close but embarrassed to admit how huge the effects of the pain really are, or to confess helplessness in the face of the pain. Will my spouse leave me, will my boss fire me, will I be thought crazy or weak, manipulative or a malingerer?

Patient
Can’t know how others feel about his or her pain and changes
Does know it has a negative effect, and may feel guilty about it
May feel helpless, resentful, guilty, frustrated, angry
Afraid to ask

Family and friends
Can’t know how patient feels physically or mentally
May feel helpless, resentful, guilty, frustrated, angry, abandoned
Afraid to ask

It’s the classic set-up for terrible misunderstandings and friction: intense emotions on each side, big stakes at risk (marriage, jobs, survival of relationships you’ve spent years building), and neither side knows what to say.

Then there’s dealing with the medical establishment, not easy for the person with chronic pain. Treating chronic pain is frustrating and unrewarding for physicians. The pain is invisible and resistant to treatment, progress is measured subjectively by the patient, misuse of pain medications is a serious risk, and perceived pain is affected by emotional and social factors outside a doctor’s comfort zone.

I’m choosing three parts of this huge subject to address now. First, ways to track your pain level and medications’ effects so that you can discuss them more clearly with others, including family and physician. Second, articles on families and chronic pain. Third, an annotated list of links to the major organizations concerned with pain, where more resources can be found.
My hope is that individuals can find tools here to help them get started with communicating better, understanding better. The tools are not the conversation, but they may be the foundation for it. To build on that foundation requires each of us to expose vulnerability, to admit how much other people mean to us, and to practice patience and compassion every day. And keep your sense of humor in good working order!

To that end, here’s an interruption, with a cartoon that nosleepingdogs has been saving for just the right occasion, and she hopes this is it. (Cartoon by Bizarro, reproduced without permission but with great appreciation.)

Bizarro,onNosleepingdogs.jpg

Making the invisible, visible

How can we pain patients help others understand what we’re feeling? Pain is invisible, it varies in type and intensity, and everyone has had some pain so they all think they know what chronic pain is like. Keeping a daily record, with numeric measurements, will give something concrete to point to, showing that you’ve had no pain-free days for the past month, or that your pain consistently increases under certain conditions. Such records are called pain diaries, journals, or logs, and they are a very useful aid in talking to doctors as well as to family members. They also give patients a way to know, and remember later, how this week’s pain compares to that of last week, or how this pain med compares to the one we used previously.

The heart of the pain log is a measurement scale for pain, like this one from the National Institutes of Health.

Numeric Rating Scale and use.jpg

At one end is “no pain”, at the other end “severe” pain, with the 10 at the end often described as the worst pain you can imagine. Record numeric pain ratings on your log form as often during the day as you think will be helpful. I’ve gathered several forms from various sites, which you can download or print directly. Because links change, I’m giving not only the original link to the site presenting the form, but also a link to a copy of the form hosted on my blog. The forms are free for personal use, I think none of these organizations will object, but not for any commercial purpose. Or, you can design your own form, and I include a sample that I made in a few minutes in a word processor.

Choose a form that lets you record the additional information that you think is important. Some include what meds you took and when, so you can compare that to changing pain level. Others have places to record levels of stress, quality of sleep, amount of exercise, and mood. I recommend photocopying or printing at least a month’s worth, and stapling them or putting them in a notebook. Be conscientious about this. It doesn’t take long to fill in the day’s information, and the value lies in writing it down at the time, and every day. Once a week won’t be much good, nor will it work to try and remember how you felt last week. Just do it, maybe when you brush your teeth at night, or after taking each medication, or after each meal.

Pain log templates

The thumbnails are just pictures, not links. View or download the forms with the links at the end of the description. All forms are in pdf format.

Here is the Daily Pain Diary Form from Partners Against Pain. It consists of 2 pages; one in graph format to record pain level and meds taken, the other with questions about breakthrough pain, sleep, side effects, other things you did to help relieve your pain, etc. Download or view this form from the original site, or from my blog files.

Daily_Pain_Diary.jpg

Next is the Pain Management Log, a simpler one-page form from Partners Against Pain. It records date, time, severity of pain, medicine or non-drug control method used, how severe the pain is one hour later, and activity at the time of pain. It can be used for a single day, or you can make entries for successive days on the same page. Download or view this form from the original site or from my blog files.

Pain Management Log from www.partnersagainstpain.com

The 8.5×11 Pain Log is a 2 page form, from the American Chronic Pain Society, unusual in that it uses cartoon-like symbols for levels of pain, exercise, stress, etc. Download or view this form from the original site or from my blog files.

8 5x11 Pain Log from the American Chronic Pain Society

The form pictured below is the one I made up quickly myself in a word processor, just as an example for those who want to design their own. One page. Download or view this form from my blog files.

Original pain form made on a word processor.

Next are two forms that are not for daily use but would be good to fill out before a visit to your doctor, as a sort of summary or review of a period of time. First, a 6-page questionnaire called Keeping Track of Your Care, from Partners Against Pain. (It seems to have been designed for cancer patients, but will serve other pain patients just as well.) In addition to summing up pain, meds taken, and that sort of thing, it also has a list of questions about the effect of the pain upon your life over the time period, and the usual drawing of a body front and back on which to indicate location of pain. The list of questions would be good to review before going to see your pain doctor each time, to be sure you bring up all your concerns.

This questionnaire also asks “What is your goal for relief?”, a great question to consider, and let your physician know what your goal is. It’s a good question for two reasons: one, you need to realize that zero pain may not be an achievable goal, and if it is not, what is your secondary goal? To continue working, to enjoy better relationships with your loved ones, to be able to be active for 6 hours a day before you have to stop, to get your pain from an 8 to a 3? Important issues to think about. And, second, it gives both you and your physician something defined to strive toward. Download or view this form from the original site or from my blog files.

Keeping Track of Your Care from http://www.partnersagainstpain.com/printouts/A7012PD2.pdf

Second, the 2-page Patient Comfort Assessment Guide, another from the Partners Against Pain organization.
Like the preceding template, this is not a daily record but the sort of thing that your pain doctor might have you fill out regarding your pain, meds taken and how much relief each gives on a numeric scale, side effects, and how pain has interfered with different aspects of your life in the past week, including mood, sleep, ability to concentrate, normal work, etc. Download or view this form from the original site or from my blog files.

Patient Comfort-Assessment Guide, another from the Partners Against Pain organization

How pain records help you talk to your doctor

Pain doctors have to have a way to decide upon, and justify, the medications they give you (or prescriptions for physical therapy, TENS units, referrals to nerve specialists, etc.). They can feel much more confident if you bring in a photocopy of your pain journal for them to keep in the file, with times, dates, and numeric ratings, than if you just come in and say “Doc, I need something stronger, this prescription just isn’t helping me.” If you feel your journal shows something in particular, go over the entries with your physician. Maybe your journal will show that what you need is medication for “breakthrough pain”, to be used occasionally as needed to keep the pain from getting the upper hand. Or maybe there will be a pattern telling the doctor something you’re not even aware of.

It is absolutely in your best interest to keep a pain journal, and keep it accurately. Don’t inflate what you are feeling. But—and here is another way pain records can help— do use them to show the doctor exactly how the uncontrolled pain is affecting your life. Restoring you to your previous level of functioning is the pain doctor’s aim, not making you feel good. That, I’m afraid, is up to you, perhaps with some help from anti-depressants or the like. But your doctor knows that people don’t feel good when they can’t do the normal things in their life because of pain, so improving function does, indirectly, also improve mood and enjoyment of life.

When my pain was at its worst, I began to think of my life as a sinking ship, from which everything nonessential was being thrown overboard. Anything I did just for enjoyment, over it went. The “have-to’s” of course were kept: working, commuting, taking a shower, shopping for food, and so on. Your pain journal can be the evidence of how much of your life has been “thrown overboard”, or become very difficult, because of pain (and the fatigue that goes with it). Choose a journal template that will help you record this, as well as levels of pain and how well meds or other methods work.

How pain records can help you

They can help you measure progress, or lack of it, over time. When you feel rotten all the time, the days can all blend together. Then you look back at your records and see that 6 months ago you couldn’t walk a block, or sit in the car for more than 15 minutes. Now both of those things have improved. “Wow! I’m making progress!” Give yourself a pat on the back, figure out what made the difference, and work on it some more. Or, no progress? backward movement? Then you know what you are doing is not working, and you and your doctor need to talk about this. And you’ve got the evidence on paper to show her or him, rather than just walking in and saying that you feel worse than ever.

What’s on paper can also help your family understand your situation, what you are going through. They may not need to look at the pages, but just being able to say that for the last month your pain level hasn’t been below 6 on a scale of 1 to 10, is a concrete representation of something otherwise invisible and hard to think about. “Dad hurts all the time” doesn’t have the same impact.

Articles for chronic pain patients and their families

My search for reading material I can recommend has just begun, it seems, since so far I’ve found only one article, and no books. I’m hard to please, apparently. I have no use for material that doesn’t adequately distinguish between addictive behavior, and the behavior of a pain patient who’s become habituated to opioids (see earlier post, Dr. House’s writers betray pain patients), or for intimations that people with chronic pain just need to think positive thoughts and get some exercise. (Though I won’t deny, both of those are good things! Both can make you feel a little better, too, but they are not cures for pain, and many people are in such pain that the advice is a mockery.)

Surviving a Loved One’s Chronic Pain. This article was written by a pain doctor as a handout to patients.

This handout was inspired by a patient of mine who came into my office and inquired what resources were available for the family members of patients with pain to help them understand what their loved ones were going through. He discussed how his wife was frequently angry at him for not doing more physically at home while she was at work and how she often yelled at him. He felt guilty about it, but felt he did as much as he could tolerate. I was embarrassed to admit that I did not know of any handouts explicitly directed at spouses, family members, and other loved ones. After doing some research on the Internet, I discovered several very helpful publications, specifically Julie Silver’s 2004 book, Chronic Pain and the Family: A New Guide (Harvard University Press) and the American Chronic Pain Association family manual, ACPA Family Manual: A Manual for Families of Persons with Pain, written by Penny Cowen (ACPA, 1998). I also found some helpful articles by Mark Grant, a psychologist in Australia, especially his “Ten Tips for Communicating With a Person Suffering From Chronic Pain,” which is available on his website, http://www.overcomingpain.com. Mark was kind enough to allow us to summarize his suggestions here. As well, one of us (Whitman) has a website to help patients cope with chronic pain, and occasionally discusses family issues on it (www.howtocopewithpain.org). Much of what is in this handout is taken from these sources.

What was striking, however, is how little material there was oriented toward the family compared to the massive amount of self-help material oriented to the patient with pain. In view of the profound effect the patient’s pain has on the family and the equally profound effect the family’s (and friends’) responses have on the patient with pain, I found this troubling. I also felt that while Silver’s book and the ACPA manual were very helpful, few family members would get them and fewer read through them. What was needed, I felt, was something brief and to the point. This is the result of that determination.

Surviving a Loved One’s Chronic Pain, four pages, available as a pdf from the original source, pain-topics-org, or from my blog files.

This article recommends another that I agree on, “Ten Tips for Communicating With a Person Suffering From Chronic Pain” available at overcomingpain.com or from my blog files.

Organizations concerned with pain

American Pain Society
a professional medical organization with some education functions. They do research on sub-topics in pain and also some advocacy.

Publications include:
Guides for Persons with Pain
Patient Guide: Managing Osteoarthritis Pain
Consumer Guide: Managing Rheumatoid Arthritis
Parent Guide: Managing Pain from Juvenile Chronic Arthritis
Guide for Adults with Cancer Pain
Guide for Adults with Fibromyalgia Syndrome Pain
The above are short pamphlets, 12-16 pp and are offered for sale in sets of 25 of one title, for medical. There is no version that can be read online as far as I could find.

American Pain Association

They say, “Pain has been ignored as a problem by the medical science and society for a long time. The fact that America still doesn’t have a National Institute of Pain indicates this lack of attention towards pain. Surprisingly, America does have a National Institute for Addiction. The primary efforts of the American Pain Association are directed towards education and research. We are also working in the area of developing expert consensus statements regarding pain issues.”

Seems to be mostly a professional organization, offering certification courses in pain, and basic and advanced courses in pain management for all medical personnel including nurses, physicians, pharmacists.

American Pain Association page summarizing new methods of pain relief, will give you some ideas to research or ask about.

American Chronic Pain Association

A previous organization, the National Pain Foundation, is merging with the ACPA.

The ACPA has some very good informational resources, including their Chronicle (archives here). For example, the Summer 2006 issue was devoted to nerve pain.

Partners Against Pain, source of many of the forms I’ve described above. They describe themselves as “a resource that serves patients, caregivers, and healthcare professionals to help alleviate unnecessary suffering by advancing standards of pain care through education and advocacy.” Advocacy is a major element of their work, but other material is available too. They publish a Resource Guide for People in Pain which contains some of the forms above, and others including checklists for doctor visits or the ER, as well as sections on other aspects of health that are good to review, like nutrition, stress, and exercise; it also has lists of organizations concerned with certain diseases or conditions, or professional fields, or patient support. I recommend skimming through it for what you need at the moment. Read or download it here.

American Pain Foundation

APF is an education & advocacy group, which actively works with the news media on conveying pain issues, and publishes a semi-annual Pain Research and Practice Update. The Summer 2010 issue is here.

They have a library of online materials which I haven’t explored yet, but it looks worth checking out. Here’s the directory:

Information Library

• Audio/Video Replays
• Chat Transcripts
• Pain Conditions
• Pain Topics
• Publications
• Q&A About Pain
• Top Ten Tips for Coping
• Webinar/Teleconference Replays

Pain Resource Information
• Financial Information & Assistance
• Finding Care
• Journals
• Pain Law & Ethics
• Pain Links 
• Pain Resource Locator

Programs & Campaigns
• Acute Pain Spotlight
• Back Pain Spotlight
• Breakthrough Cancer Pain Online Guide
• Cancer Pain Spotlight
• CareCentral for Caregivers
• End of Life Care Spotlight
• Exit Wounds – Military/Veterans Pain Initiative
• Fibromyalgia Spotlight
• Health Decision Making Online Guide
• Let’s Talk Pain
• Shingles & Post-Herpetic Neuralgia Spotlight
• Yoga for Chronic Pain & Disability

The vocabulary of pain

Pain and its treatment have a specialized vocabulary. I found some online glossaries that may be of interest in understanding exactly what is being talked about.

Chronic Pain Glossary of Terms
Pain management: Glossary of terms

American Pain Society Glossary of Pain Terminology

Does fibromyalgia “get better” with age? (Alert: Whining ahead)

I’ve encountered this statement a few times since being diagnosed with fibromyalgia in 1992. Finally, at age 63, I think I’m qualified to offer an opinion upon it:

No, unlike a fine wine or a teething puppy, fibromyalgia does not get better with age.

It might seem that way, because some things that do change with age may lessen one’s concern about symptoms, or even ameliorate them.

As we grow older, we expect to have memory lapses, aches and pains, and reduced energy and strength. The person with fibromyalgia has a head start on all of these, believe me! But with advancing years, these symptoms seem a bit less unreasonable—or perhaps I should say unseasonable—even though I am still more tired, forgetful, etc., than an otherwise healthy person of my age ought to be.

Starting several years ago other people about my age began assuring me that my symptoms were “normal” for this stage of life, they had them too. Their intentions were benign, but I don’t like to hear this; not because I am clinging to the distinction of my disease, being “sick” but not “old”, but because I feel that the impairments of fm have been different. [It also echoes the remarks so familiar to people with fm or cfs or other chronic conditions, “Oh, you’re really tired/achy? Yes, I’ve had that too, just get some extra rest, you’ll feel better.”]

I was 35 when an injury caused the continuous pain and disturbed sleep that gradually turned into fibromyalgia by age 40 or so. During that time I went from having an unusually good memory, to the reverse. What did I do yesterday? Did I eat lunch today? What did I do this morning? Often I can’t answer such questions without some sort of reminder. Sometimes even with a reminder I have no recollection whatsoever of very recent events, and everything beyond a few days ago is gone or vague. Some days I grope for words—for a particular word, or to be able to put my thoughts into words at all. For a person who used to remember where on the page a certain passage of a book was to be found, or the details of bibliographic citations years after checking them, this sudden decline was, and remains, a severe assault upon my sense of who I am. And rightly or wrongly I think the daze that so frequently envelops me is not typical for a 63-year-old. Maybe at 85 I’ll feel it is age-appropriate. Until then, dammit, I’ll feel ticked off and robbed. Join the club, eh?

Still, inevitably over time one grows less sensitive to diminished abilities, and the limitations are less at odds with one’s lowered expectations.

As for symptoms seeming to decrease with age, I think this is a result of getting better at coping and self-pacing. I’ve learned to avoid things that aggravate the fm, such as late nights, loud or crowded places, being on my feet too long, and overexertion (whether it be in duration or in type of activity). I’m less of a perfectionist, I have a combination of medication and mental techniques to help me get to sleep most nights, and I feel okay about saying “I need to go lie down and rest for a while”. It’s following the naval maxim of “maintain a steady strain”.

The danger with all of this—lowered expectations, avoidance of stressors—is that it becomes a downward spiral. And age provides a reassuring excuse. Of course I’m doing less than I did last year, I’m getting older.

I keep pushing myself mentally, with challenging reading and dogged efforts to learn new things. Even though most of what I read today will be gone from my mind tomorrow, I tell myself that the effort may keep the neural connexions from deteriorating as we know they do with lack of use. Blogging has become a good motivator, encouraging me to do some writing, and follow research interests to produce and finish short pieces.

Physical exertion is harder because the pain and fatigue always increase, sometimes severely. When I was working a fairly physical job, I came up with this description for how I felt when I got up in the morning: “as if I’d been forced to run up a mountain, and then kicked and rolled all the way back down”. The chronic fatigue and pain in muscles and joints have been dialed back now that I’m not on my feet all day lifting, bending, carrying, etc., but they’re still there. I’m struggling to stay on a program of walking about 45 minutes every other day, motivated by a recent blood-test result that was in the pre-diabetic range. Some days I don’t want to expend a big part of the day’s energy for walking, or I feel worse than usual. There are no rewards of feeling noticeably better, but if I take the dog and my camera I will enjoy the walk itself.

Being off of methadone has made a big difference mentally and physically. It’s been two years last month, and I think I’m still improving. I couldn’t have walked for 45 minutes before that. Drugs that don’t help just weigh you down, and methadone does a lot more harm than most. (earlier post about getting off methadone)

So, in some ways I really am feeling better. But it’s not due to aging.

Thistles,GrazingAmong.jpg

Note for logophiliacs

After I put the word “whining” in the header, I encountered what would have been a good alternative if it weren’t quite so obscure. It has such appropriate associated meanings. I may whine and twine, but I’m trying not to dwine.

Twining
A minor lexicographical result of the devastating floods in Cumbria last week has been the appearance in at least two UK national newspapers of the dialect word twine, to complain or whine (“Cumbrians are a unique breed. They say what they see. They are hands-on people. They will twine and moan but then they will just get on with it.” — Metro, 23 November). It was at one time widely known throughout Scotland and the north of England. By way of another of its senses, to be fretful, ailing or sickly, it may be connected with dwine, another dialect word, to pine or waste away, which is from an ancient Scandinavian source. from Michael Quinion’s World Wide Words, # 667, 28 November 2009.

Photo by author.

Bad Science: Housework helps combat anxiety and depression

I’m a subscriber to New Scientist, the British weekly magazine of science news for the rest of us. I subscribed to Science for a while too, because it publishes researchers’ actual articles, but decided I’d rather have more numerous reports with less math. New Scientist contains short reports and a few longer articles as well as interviews, and a great feature at the end where people write in requesting explanations for odd observations (very British, I think, in the tradition of the journal Notes and Queries (1849 – present), or letters to the London Times from country parsons reporting the first sighting of a bird).

Anyway, though I still find NS interesting and valuable, I’ve begun to feel they are sometimes sacrificing science for snappy headlines. Here’s an example that is from a while ago, but quite illustrative.

Housework helps combat anxiety and depression

FEELING down? You might be able to dust away your distress. Just 20 minutes a week with the vacuum cleaner or mop is enough to help banish those blues, and sport works even better.
That’s the message from Mark Hamer and his colleagues at University College London, who wanted to find out what benefits arise from different types of physical activity. They examined data from questionnaires filled in by almost 20,000 Scottish people as part of the Scottish Health Surveys, carried out every few years. Some 3200 respondents reported suffering from anxiety or depression, but those who regularly wielded the mop or the tennis racket were least likely to suffer, the researchers report (British Journal of Sports Medicine, DOI: 10.1136/bjsm.2008.046243).

One 20-minute session of housework or walking reduced the risk of depression by up to 20 per cent. A sporting session worked better, reducing risk by a third or more. Failing housework or sport, says Hamer, try to find something physical to do. “Something – even for just 20 minutes a week – is better than nothing.”

––From issue 2652 of New Scientist magazine, 19 April 2008, page 4-5. Abstract of original available free, entire article requires fee to BJSM.

Why we shouldn’t believe this

In New Scientist’s brief bit, there’s absolutely no evidence for a causal relationship between exercising and being less depressed. It’s an example of the frequent, but quite false, assumption that because two things are associated, one causes the other. Other relationships are quite possible. Does physical activity really reduce depression and anxiety, or are the people who actually do housework or sports simply the ones who have less severe symptoms to start with? Or is there some other connexion altogether? Nothing in the New Scientist, or the article abstract, addresses that question. But it makes an eye-catching headline, to say that housework cures depression.

To investigate the question scientifically, it is necessary to take a large number of depressed people and randomly assign them to one of three groups: an exercise group, a control group given some other task like filling in a weekly questionnaire or reading about depression, and a third group who don’t get any new activity or other attention from the researchers. (Ideally those doing the testing and analysis don’t know which group is which.) Then, at the beginning and end of the study, measure psychological state using some accepted reliable tests and see what changes. Finally, use statistical analysis to see if the changes are significant or might be due to chance. [Even after that, other factors may make the apparent conclusions false: maybe the exercise was not enough to have an effect, or during the study the country went to war and everybody stayed depressed, or the social aspects of being in an exercise group had more effect than the actual jumping and sweating did.]

No doubt such a study has been done, probably more than once; advising depressed people to get more exercise is a standard approach and insurance companies would love to fund the research to support it. Mark Hamer might have cited previous work in the full text of his article in the British Journal of Sports Medicine (which New Scientist should have read before writing their brief and provocative piece) but we readers have no way of knowing this.

In this particular case––the effect of exercise on individuals––researchers would have to be vigilant about the distortion of results due to participants dropping out or failing to comply with the activity levels. Even the method of choosing participants can affect reliability of results: if the depressed people are chosen from those who show up at clinics, their symptoms may be overall less severe than the symptoms of people too depressed even to go to a clinic.

A similar example: exercise and fibromyalgia

I have fibromyalgia, and some researchers have pronounced aerobic exercise to be beneficial for reducing the symptoms of this condition’s chronic pain and fatigue. Exercise is fundamentally a good thing, I agree. It distracts one from symptoms, adds an interest, may confer a feeling of control over one’s illness, strengthens muscles, promotes growth of new neurons in the brain, and can improve flexibility.

But. In moderate to severe cases of fibromyalgia, even mild exertion can cause greatly increased pain and exhaustion. Unlike the familiar “weekend athlete” reaction, the increased pain and fatigue may last a week or several weeks. This means that for some individuals the goal of walking briskly for a few blocks could take years to attain, since we are knocked back to the starting point when we overdo, or when something else in our lives like a cold or interrupted sleep aggravates our symptoms.

Some time ago I read a review article which gathered the results of a number of studies on exercise and fibromyalgia, and I noted that in some the dropout rate was high but wasn’t mentioned in interpreting the data. And then there are people, like myself, who would never enroll in an aerobic exercise program because we’ve “been there, done that” and it was painful and unproductive. If we’re not counted, and a high dropout rate is glossed over, then to whom do the results apply?

What can we say about exercise, then?

I am skeptical of the efficacy of exercise as a general one-size-fits-all prescription for fibromyalgia or depression. I would suggest the fibromyalgia studies really show that exercise appears to be helpful for those people able to endure it, but, while all patients should be encouraged to do appropriate activities as tolerated, there’s a need to be gradual and cautious. Some patients may never be able to attain exercise levels that make appreciable improvements to their symptoms, despite sincere efforts. (This doesn’t mean that exercise is without benefits to them, though. My level of physical activity doesn’t seem to help my pain, fatigue, or quality of sleep, but I’m much happier when I get out for a walk or a bit of gardening.) At an education class on fibromyalgia, I heard someone ask “How can I exercise when even walking around the house is too strenuous?” The reply was, “Can you get up and walk all the way around your kitchen table? Good. Start with that and work up.” Sensible advice, but actual improvement in symptoms may be a very long time in coming for that person.

For depressed people, exercise is unlikely to be harmful and may indeed help––I myself believe that it does––but there’s no evidence of that in the New Scientist account of Mark Hamer’s work.

I felt this was worth writing about for two reasons, one general and one particular. It’s a good example of how the media gives us accounts of scientific research without the details needed to evaluate them. And, invisible conditions like fibromyalgia and depression are different from most other health problems. They are regarded by many as non-ailments or personal weakness/malingering, so it is easy for “exercise may help” to become “quit complaining, pull up your socks and get on with it”. From there it’s a short step to “all these patients could feel better but they just won’t do the work necessary; they cling to their disease.”

And I have to admit that the example used, housework, was particularly galling to me. While there are people who can enjoy housework as a zen activity, or feel great satisfaction at making their floors and sinks shine, most of us (male or female) do not get much pleasure at all from it. Every time you do it, next day there it is again, dirty dishes, laundry piling up, dog hair floating across the floor. Truly, housework is never done. And, given that housework is still seen more as a woman’s responsibility than a man’s, and that women have a higher rate of depression than men, the “FEELING down? You might be able to dust away your distress” line seems offensively sexist and dismissive.

Fibromyalgia, a personal overview

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

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