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.

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?

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 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.)

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.

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.

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.

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.

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.

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.

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.

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.

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.