Category Archives: Medication

The Chronic Pain/Prescription Drug Bad News Tsunami

Picture of Large Ocean Wave Breaking Near Shore

There’s a retrenchment going on in the war on chronic Pain (CP). I’ve noticed it with some dismay over the last several months or so, and this week it finally hit me: folks, we’ve got a full-blown insurgency on our hands. Or counter-insurgency. Whichever? I guess it depends on your perspective, as does so much these days. Are we — the ones calling for more assertive treatment of CP, including better access to pain medications — the insurgents? (Personally, I’ve always been fond of “partisans.” Or “Resistance.” I look good in a beret.)

Well, whichever, indeed, because labels don’t mean a damn thing when we’re getting hit by the mass media tsunami. And how could you have missed it, really? Don’t you know? Prescription pain drugs are evil!

Sigh.

Am I overreacting? Consider the items that popped across my Google alerts just this past week:

  • Pain Medicine News: Study: PCPs Often Underestimate Opioid Abuse Risk — free log-in required, and it’s worth it, honestly. (I’m kind of in awe of this one. Despite numerous studies and statistics to the contrary, we’re going to conclude that MOST — that is, a majority! — of CP patients are at moderate risk of addiction to opioids if prescribed them. Uh-huh.)
  • News & Observer: (NC) Sheriffs want lists of patients using painkillers (Oh, yes. That’s a brilliant idea. Yep, no need to worry about local government overreaching or privacy implications with this plan. At all. And like the study in the item above, it comes from my home state of North Carolina. Whiskey-tango-foxtrot, Tarheels?)
  • London Free Press: Police-doctor crackdown eyed in fight against Oxycontin scourge (Great. Now it’s a “scourge.” Hyperbole much, LFP?)
  • And, drumroll please — my favorite, from something called “the Salem News” (Oregon/Pacific NW): “Pain classified as a disease? Please, give us a break.” A lovely little op-ed full of sunshine and roses for the CP’d population from a self-described “Activist for Victims of OxyContin” named Marianne Skolek (inappropriate capitalization is hers, not mine). She’s also a nurse and a paralegal. (Not sure how that works.)

It’s enough to make a sane CP blogger/activist (note the lack of capitalization, Marianne?) get a little depressed. Excuse me – a little more depressed, since everyone knows we’re already, all of us, bawling buckets of messiness, right?

LORD. I’ve been rolling my eyes all week, so hard that I’ve got a perpetual headache. And – what’s this, Marianne? A CP patient experiencing pain who doesn’t run to the nearest pharmacological stewpot?  Yeah, that’s right. Guess what. I’m not alone. Guess what else? It’s MOST of us who don’t overmedicate.

Except people like Marianne and the sensationalist authors of the above pieces and the scowling big-daddy sheriffs of North Carolina don’t want to see that. They want to see the scourge, the tsunami. Sure, they’ll wrap it all up in soft, caring words but underneath it all is the sense of disdain and superiority over anyone weak enough to want to take a pill to alleviate their CP.

And at the heart of that, ladies and gentlemen, is the blessing of never having had to deal with it yourself. Once you cross over into this great land of All Pain, All the Time? You are changed. Perpetually and inexorably and profoundly changed.

I wouldn’t wish it on anyone. Not even Marianne or the sheriffs. Now, it seems as though Marianne had a daughter who died from an Oxycontin overdose. That’s tragic, and incredibly sad. It should not have happened.

Oxycontin is a drug. It’s a potent one, to be sure, but it’s not the devil. Nor are the people who make it, nor are the people who take it.

You want a devil? Look around at the them vs us world you’ve created, every time you urge the public to believe that prescription pain medication will absolutely, definitively kill them, no doubt.

Look long and hard at the prosecutions of good and caring doctors who – horrors! – use the medications as they’re supposed to be used: to relieve their patients’ pain.

Hell, just look at the criminalization of drug use — not dealing, mind you but merely use! We’re going to put people whose only crime was using a drug in jail. No, that makes no sense to me. You know who belongs in jail? Murderers. Rapists. Thieves. Politicians who steal or take kickbacks. Dealers. You know who doesn’t? Drug users or abusers. That? Is a sickness. Want to know how I know? Because a lot of really smart people got together and SAID SO.

Yeah, that’s what our overcrowded prisons need: throw a bunch of mentally ill people in GenPop because they’re mentally ill.

But. All right. The people have apparently spoken. (Though I’m not giving up on that yet.) Let’s just put that aside for a bit. What’s going on here, in this tidal wave of Crisis! Prescription Medication Abuse (can’t you just see the blazing CNN graphic and hear the specially-composed Intro of Doom now?), is something I’d thought reasonable people had put to bed awhile back:

We are not required to live our lives in pain. We’re just not.

But if this scare-mongering continues, then – well, as much as I hate the role of Cassandra, mark my words, folks: We will none of us have access to the prescriptions that can save our lives.

So, it’s Pain Awareness Month, you may have heard. Isn’t it time we all spoke up? Shouldn’t there be someone saying this stuff in a more public forum? I wrote to a contact at APF to share that Marianne op-ed this week. The response I got indicated that they just don’t even respond to her anymore. I can’t say I blame them. She’s obviously a little self-important and if the best platform she can manage is the “Salem News” website, then – well, whatever.

But shouldn’t the din of voices clamoring about “Pharmageddon” and “sheeple being led astray” (Oh, God, can I just make a new rule right now? No more made up words. And if you do make up a word, it has to at least be clever. “Pharmageddon” and “sheeple”? Do not qualify) — shouldn’t there be at least an equivalent counter-chorus? Somewhere?

It’s enough to give a CP girl a headache.

And note: I’m not even reaching for the Tylenol(tm).

Want to swim in the tsunami? Here you go, courtesy of Zemanta:

Enhanced by Zemanta

A Warning About Your Pain Meds

Danger Sign in Front of Sea

At first glance, you might wonder why I’m linking to a news article from Des Moines, Iowa, about a man accused of rape who decided at the last minute pre-trial to fire himself as his own lawyer. What the heck does the right to represent oneself have to do with chronic pain?

I’ll show you. It has to do with his victim. And if you skimmed the article, as most of us do, you’d easily miss it:

Friday’s events provided another twist in the case, which has been unusual in almost every aspect. Hays is accused of entering the home of his friend [Victim’s Husband] and climbing into bed with [Victim]. Prosecutors alleged Hays raped [Victim] for more than three hours on Sept. 29, 2009. Hays maintains his innocence, but has not said what happened that night.
. . .
Meanwhile, both [Victim and Victim’s Husband] died before the case went to trial. [Victim] suffered from fibromyalgia, a chronic muscle and connective tissue disorder that causes sufferers intense pain, sleep disturbance and other symptoms. She died of an accidental pain medication overdose on Feb. 1. [Victim’s Husband] committed suicide three weeks later.

(I’m leaving out their names because she was a sexual assault victim, even though the linked-to article contains their full names. I’m assuming the names have been public for awhile; I just don’t feel comfortable using them, as a rape survivor myself.)

Accidental pain medication overdoses have been in the news a lot lately. Seems I can’t open a news site lately without seeing at least one headline about the rise in accidental overdose cases in U.S. emergency rooms. Now, I need to be clear: I am NOT convinced that the problem is as widespread and critical as the media has reported it to be. It’s pretty much conclusive that most major outlets confuse addiction with dependence, and it’s the least-well-kept secret in this country that the press sensationalizes statistics in order to sell copy (or adspace).

But clearly something’s going on here, and it needs to be talked about honestly.

I’ve never made a secret of how I feel about prescription pain medication. In case you missed it, though, let me reiterate: I’m all for it, when it’s appropriately prescribed and taken.  It’s saved my life, and that’s not hyperbole.

But it’s a good idea to remind ourselves of the facts. Pain medication can kill, when it’s not taken correctly. It can interact with any number of other substances — including benign crap like vitamins and herbal supplements. It can react with alcohol — even a little bit of alcohol. It can be over-taken, as when you forget that you already had that evening dose because the kids were screaming and your husband was ranting about work or whatever.

We tend to think of overdoses as happening to … you know, not to be impolite, but “those other people.” The ones who look/act/live nothing like us.

But as the news article above reminds us painfully: it does, in fact, happen to “us.” All the time? No. Inevitably? Of course not. Way too often for any compassionate person to accept? Oh, yeah.

Drug Apathy: Why I Have It, Why It’s Dangerous

I’ve been on tramadol for over six years now. I know quite a bit about it — the maximum recommended dosage (I don’t take it, ever); the contraindications; the 411 on withdrawal (bottom line: not nearly as bad as the forums and message boards might lead you to believe).  And lately, I’ve noticed a growing sense of blase “whatever”-ness about it all.

It struck me especially a few moments ago as I wrote a FB status on my wall to the effect of “I have a headache and I took an extra tramadol and some Aleve for it – anybody got any home remedies to try, since that didn’t work?”

I posted it, thinking how funny it was. And then I thought: Wow.

Isn’t that a little — off?

Shouldn’t I have started at the other end of the treatment spectrum and worked my way up, rather than at the top and then down?

Sure, I was being a little funny with the FB post. Sure, it was a little exaggerated for effect — I’m not quite that apathetic about what I put in my body. But I’ve been on it for six years now. The days of me feeling all “oh my GOD!” about it all? Long gone. I no longer worry about seizures or respiratory distress.

Maybe I should.

I also have a confession to make. For all my “take the damn pills, if you need ’em” preaching — and I still absolutely believe that pills are NOT the devils they’ve been made out to be by some — I did decide recently to cut back on my medication. Why? I can’t really tell you. I had absolutely no ill effects, no changes, nothing that would have caused a rational person to worry. (But then we’re seldom rational about medication for chronic pain, in case you haven’t noticed.)

So, I cut back within a few weeks — after six freaking years, let me remind you — and despite all the horrible nightmarish stories I read on the web in various chronic pain forums about tramadol withdrawal, I had absolutely none of any of the following:

  • massive night sweats
  • severe insomnia
  • skin-crawling feeling
  • breakthrough pain
  • chills

Did it feel uncomfortable? Hell, yeah! But it wasn’t all that bad.

I don’t ever want to take those little white pills for granted, you know? Their efficacy, or their power to harm if misused.

No more tramadol for headaches for me. (Besides which – hello! – they didn’t work.)

Do the Experts Agree on Anything About Chronic Pain?

I found a new-t0-me resource that I believe I’m gonna have to devote a few days to exploring: this blog, “Overcoming Pain,” from Psychology Today. I know, I know – the fact that a chronic pain resource is located within a site devoted to psychology caused me a few moments of hair-pulling and a low-simmering rage but — check it out.

It’s not the same-old “pain is all in your head — by which I mean you’re freakin’ nuts, people” crap.

There’s some good info in there, like this piece on a recently released update to guidelines from (deep breath, ’cause this is a mouthful) the American Society of Anesthesiologists Task Force on Chronic Pain Management and the American Society of Regional Anesthesia and Pain Medicine. (Phew.)

Although I should point out that the author of the blog, Dr. Mark Borigini (a board-certified rheumatologist, not a psych-dude), says:

By some measures (such as the proliferation in the marketplaces-both legal and illegal-of prescription pain medications), one could make an argument that chronic pain in these United States is becoming more prevalent, and perhaps even more intransigent; perhaps a manifestation of the chronic dissatisfaction and depression that seems to have become a part of living for so many.

Yeah, I don’t know about that. Personally, I think for most of us the depression comes after the freakin’ pain.

Anyway, the piece itself is worth reading. The guidelines go down the list of usual suspects — NSAIDs, opioids, tricyclic antidepressants, etc. — and at least they’re saying pain should be treated pharmacologically — or at least that meds should be considered for chronic pain.

A medical professional group acknowledging that chronic pain is a medical problem and that medication should be considered part of the treatment approach: progress!

Dependence Is Not Addiction

It’s no secret I’m a fan of tramadol. Hell, it’s the name of my site. Those little white pills saved my life. So it should be no surprise that I’m all for prescription pain medication when it’s used appropriately.

And it should be no surprise that one of my pet peeves is the fear-mongering that runs rampant and unchecked in the medical community that stops professionals from  prescribing pain meds to treat chronic pain assertively.

What’s behind this insane aversion to the pills? I think there are a couple of things at work here. One is that somehow, we’ve abdicated responsibility for medical decisions to law enforcement officials. That’s messed up.

Another is this ineffective, wasteful “war on drugs” with its screwball insistence on locking up as criminals those who merely use, alongside the devils that push the crappy stuff on them. It’s swept up legitimate uses of pain medication along with the highly-publicized legitimate cases of prescription pain med addiction and the street-drug abusers.

And finally, I think there’s a fundamental misunderstanding that fuels this mess: too many folks are confusing dependence and addiction.  Need proof? Here’s a page on drug dependence from the University of Maryland Medical Center — and look at the very first sentence:

Definition of Drug dependence:

Drug addiction, or dependence, is the compulsive use of a substance, despite its negative or dangerous effects.

Right there, in the very first sentence. A medical university gets it wrong. Now, true, in the next few paragraphs, it hedges the bet a bit:

However, a physical dependence on a substance (needing the drug to function) is not always part of the definition of addiction. Some drugs (for example, certain blood pressure medications) do not cause addiction but they can cause physical dependence. Other drugs cause addiction without leading to physical dependence. Cocaine is an example.

But it’s too late. The damage has been done. The first sentence makes it clear — “drug dependence = drug addiction.” The subsequent qualifications are too little, too late.

What’s the Difference Between Dependence and Addiction?

So what exactly is the difference between being dependent on a drug and being addicted to it?

  • Dependence is a normal physical condition, while addiction is an abnormal psychological condition.
  • Dependence simply means your body has grown “used” to the drug; addiction means you psychologically crave it, usually in higher and higher doses.
  • Dependence does not in and of itself interfere with your daily functions and life; addiction devastates.

We, as the fibromyalgia and chronic pain community, simply must do a better job of educating the world about this distinction. We need to speak out when our friends get it wrong. We need to write to editors of newspapers whose journalists get it wrong. We need to — yes! — correct our own doctors if need be.

The reluctance to speak up is completely understandable. None of us wants to be labelled an addict or drug-seeking (the medical profession’s cute little label for anyone whose pain they don’t quite understand — basically, a less emotionally charged way of calling someone an addict).

There’s so much stigma in this society against pain medication that when we speak up for any aspect of it as a treatment option, we’re automatically aware that somewhere, in some file, there’s a giant red asterisk being placed beside our names.

But we have to get over that if things are to change. The actual risk of addiction has been proven to be quite low, and when no conservative measures are working, why on earth should we be required to hurt like hell — often becoming nonfunctioning and disabled in the process, thereby putting an unnecessary drain on government resources — when we don’t have to be?

I do believe that lifestyle changes can hold chronic pain at bay in many instances — but not all. Why should we be forced to hurt like hell while we make those changes? All because some people don’t understand that dependence does not mean addiction.

I realize others may disagree with me strongly. If you’ve ever had a family member addicted to any substance, as I have, you may well be experiencing a strong emotional reaction to what I’m writing here. That’s fine.

Please understand: I’m not saying addiction to legal prescription pain medication does not exist. I’m saying it’s not a foregone conclusion, and it’s not a sufficient reason for chronic pain patients being forced to rely on ineffective conservative treatments, when there are legitimate medications that make them feel better and give them their lives back — which is exactly what tramadol did for me.

“Twebate”*: Alternative Remedies versus Pain Medication for Fibromyalgia

I love Twitter. This post is a good explanation of why.

As many know by now, I spent New Year’s weekend moving from North Myrtle Beach, South Carolina, to Salisbury, North Carolina, with my daughter and her kitten. As I expected, the physical and mental stress of this move triggered a fibromyalgia flare-up, and I thusly tweeted:

My Tweet About Fibro Flare-up

The Tweet That Started the Debate

As they do, my #fibro-tweeps sent me some virtual hugs and support, and this one in particular caught my eye:

@DebDrake's Response

Then @DebDrake kindly shared a link to a list of her recommendations for fibromites from her website.  (Deb’s bio on Twitter reads: “I’m a Naturopath, nutritionist & CNHP. I’ve had fibromyalgia for a decade and I am beating it with nutrition and lifestyle.”)

I don’t know what it was about the situation that prompted me to engage Deb but I did, and below, you’ll find what transpired over the next few days between us. Collectively, these tweets represent an interesting debate about alternative medicine versus pain medication for the treatment of fibromyalgia.

So I asked Deb if she’d mind if I shared the conversation with my readers.  She graciously agreed, although she was concerned that I wouldn’t bash alternative medicine in general or specifically with respect to fibromyalgia. I promised I would (A) give equal time; (B) represent the conversation faithfully; and (C) share my opinion truthfully.

And that’s what I’m about to do.

The Twitter Conversation: @DebDrake and @SherrieSisk on Alternative Treatments vs. Pain Medication for Fibromyalgia

I replied:

@DebDrake Alt therapies didn’t work for me. I’m glad they work for someone but my open-mindedness turned to disbelief after my experience.:)

Deb responded:

@SherrieSisk I’m sorry to hear that. It is true that disease = constitution+environment & the remedy must treat both. No remedy works 4 all

@SherrieSisk Dont give up on nature tho. The body has the ability to heal if you give it the tools. minerals help the most -mostly magnesium

@SherrieSisk Many do just the opposite: give up on meds bc of side effects & not working.That was me-In pain 5yrs going to drs. never helped

I replied:

@debdrake Magnesium did absolutely nothing for me. Tramadol, however, works great. Side FX minimal if taken properly, uptitrated slowly

@debdrake Not anti-anything that works for the individual. Just sick and tired of #fibro patients talked out of trying medication b/c of…

@debdrake … baseless fears or bad doctor advice.

Deb next offered the following thoughts:

@SherrieSisk Magnesium by itself helped but not enough. It does pretty good when mixed w CoQ10 and malic acid.

@SherrieSisk But still, fighting fibromyalgia requires a combination of things to do. It was caused by any one thing. A change in lifestyle.

@SherrieSisk Natural remedies dont work the same way medications do. They help build the body up rather than undo a symptom. Symptoms=alarm.

@SherrieSisk So sometimes meds are good. They turn off the alarm & stop pain. but now something must change or damage is still being done.

@SherrieSisk I guess I just think that everything, even herbs, should only be temporary fixes. Herbs for example help the body rebuild.

@SherrieSisk There are a few things we need ongoing since food is deplete. A good multi, omega3, antioxidants, minerals, probiotics, enzymes

My response:

@debdrake It’d be great if that worked for everyone. You can read more abt my 10yr exprnc w/ #fibro at my site – but briefly …

@debdrake … I’ve tried many nutrtl supps – some made slight difference, most made none (incl CoQ10, malic acid and Mg). I just can’t …

@debdrake … agree that meds are not best treatment option, ever, for anyone. There is no one-size-fits all solution, until there’s a cure

@debdrake Basically: I’m a big believer in better living thru chemistry, until they come up with a cure, and strongly believe#fibro ptnts..

@debdrake … shouldn’t feel guilty for trying/relying on them, if they work. Yet that’s the msg we’re constantly bombarded with.

Deb’s response:

@SherrieSisk I hope I dont come across as anti meds. I dont talk about meds. Im not an MD. I’m an ND so only talk about natural alternatives

@SherrieSisk Im def not trying 2 make any1 feel guilty about anything. U have to feel good about what u are doing 4 it to help & not harm u.

@SherrieSisk Fibromyalgia is very much tied in to our emotions and feelings. Choosing a treatment should not be based on fear.

@SherrieSisk I know that many don’t want to use chemicals and so are looking for how to reduce symptoms without meds. I am here for them.

@SherrieSisk Ur right about just trying to use one answer for fibro. It wont work. Like I mentioned bf, must be an individualized program.

@SherrieSisk If a person comes to me and says they live a hi stress life, eat fast food everyday, wont sleep at night, etc, & then say that…

@SherrieSisk They want rid of symptoms but don’t want to make any changes. just a supplement 2 fix it. It’s not possible. I can’t help them.

@SherrieSisk If you are happy with your treatment plan and have no side effects or fear of long term issues, then don’t change it.

Then she said something nice about my writing. 😉  I thanked her, and said:

@debdrake I understand completely. I’m not “PRO”-meds – except when they work and are taken properly. I’m PRO-anything that helps.

@debdrake It’s just that for me, I don’t see the proof that alt remedies really work as well as meds, & there’s a TON of bias against meds

@debdrake … that ticks me off, frankly. No #fibro ptnt should B scared away from ANYTHING that works. Alt remedies, meds, yoga, ANYTHING.

My Position on Alternative Remedies and Prescription Pain Medication for Fibromyalgia

Let’s clarify what we’re talking about when we talk about “alternative remedies” for fibromyalgia.

As I use the phrase, I’m referring to nutritional supplements, acupuncture, acupressure, Chinese medicine, massage therapy, Ayurveda … pretty much the world of treatment outside prescription pain medication, surgery, and exercise/physical therapy-based treatments.

I realize some might disagree with me that yoga isn’t really an alternative therapy, but I consider any movement-based program to be in the same ballpark as any kind of exercise, including walking.

I wrote about nutritional supplements, and described my experience with them, on this blog previously. I realize now that I sort of shied away from my true feelings about natural or alternative remedies in that post, and I apologize for that. But there was a reason for my reserved approach, and it’s echoed in my statements to Deb above: I don’t want anyone with fibromyalgia to be persuaded not to try something that might help them.

See, I agree with Deb in a few respects here. Until we have a cure, there will never be one single treatment that works for everyone and every symptom.

One place where I part company with her is in the why: Deb thinks no one thing causes fibromyalgia and that’s why no one treatment will work. I think it’s entirely possible that one thing does cause fibro, although it possibly depends on a more complex mechanism or series of events to really get going.

The point: We don’t know what causes fibro. We don’t know what the cure is yet.

And with respect to alternative remedies, by and large, we don’t know whether they “work” to either cure, lessen, remedy, heal, or alleviate fibro. We have some evidence, mostly anecdotal, that certain treatments have a beneficial effect more often than others. We have very little empirical evidence, though, especially with respect to nutritional supplements.

Here’s my beef with the whole alternative field: I’ve read a lot of those books detailing the supplementation regimens recommended for fibro, and the regiments simply aren’t practical. I’ve tried a lot of those regimens — the expense coupled with the not-insignificant hassle of taking handfuls of pills every day at different times means, for me, that in order to be worth that hassle, that regimen better produce some impressive results pretty darn quickly.

They never have. For me. Others say that their mileage varied — they believe the regimens worked and they feel a lot better. And that’s great for them.

Let me make this clear, once more: I support wholeheartedly any fibromite’s treatment regimen if it works for you and is safe. Heck: even if it isn’t safe, if you’re fully informed and make a deliberate decision to try it anyway, knowing the risks, then I support that, too, as long as it poses no risk to anyone else.

Where I get irritated is when folks make claims that fibro can be cured by natural means — or frankly, by any means. It can’t. Not yet. I also get irritated when medication is presented as something unnatural — in the sense that it’s bad, or wrong. It sends the message that anyone who chooses medication is somehow weak, or doing the wrong thing, or harming herself.

It’s just not true. I resent it, it gets my hackles up, and it’s dangerous, to boot.

Medication wasn’t something I chose lightly. I looked for more conservative measures for four entire years before I finally agreed to give prescription pain medication a try.

But when I did — when I found what worked for me (tramadol plus acetaminophen) — the change in my quality of life was striking, immediate, and long-lasting. I’ve been on this cocktail for six years now, and have increased my dose only once (three years ago).

Far from being addicted to it, I’m indebted to it, but I take it in order to live my life, not to get high or to avoid withdrawal. I take it, in short, in order to function. It works for me, plus any side effects are minimal and can be managed completely by simply following the instructions for taking it.

Basically, what I’m saying is this: don’t be swayed away from any possible treatment — including nutritional supplements, and – yes – including prescription pain medication — by questionable value judgments placed on the treatment by others. Don’t reject prescription pain meds, when nothing else works, just because people tell you that they’re somehow wrong or objectionable, based on some faulty science or a personal agenda. By the same token, don’t go running to your doctor for tramadol just because I’m saying it worked for me.

And with respect to alternative remedies, I’d love to see some harder science on their efficacy. To my knowledge, only acupuncture has any studies supporting its usage in fibro treatment; it would be awesome to have more options for all of us. All I can do is tell you what worked — and what didn’t — for me:

  • Tramadol, gentle yoga, minor diet adjustments: yes.
  • Supplements, acupuncture, chiropractic, herbs, and just about everything else, including massage (damn it, ’cause I do love massages!): not really, or not in the least.

And, as always, your mileage may definitely vary.




* – (Twebate=Twitter debate. And I promise, that’s the last time I’ll ever coin a “tw”-starting word to describe something on Twitter.)

Welcome to Chronic Pain: Ten Tips For the Newly-Diagnosed

For those of us who’ve been living with ME/CFS or fibromyalgia or any other chronic pain condition for a few years, it might be hard to recall those early days after we were first (finally!) diagnosed.

But for those people who have just gone through that experience, you may be feeling a myriad of competing emotions, stirred together and topped off with a healthy measure of “What the heck do I do now?”

Here are ten tips to help you manage the confusion and overwhelm following a diagnosis of a chronic pain condition.

1: Understand Your Chronic Pain

While it’s unquestionably true that the experience of a chronic pain condition can vary drastically from person to person, you should take time now to find out what you’re dealing with, as soon as possible. Find out as much as you can about the “usual” progression of your disease or condition, as well as the range of symptoms and associated conditions you might expect along the way.

Knowing what to expect is important when you’re beginning a long journey with a new condition. You’ll find out soon enough that every new ache and pain and discomfort can soon make you nuts, wondering “Is this something to worry about? Or is this just part of my condition?”

If you can get as much information as possible at the outset, you can save yourself some anxiety, and make better decisions about your medical care.

2: Stay As Active As Possible

Study after study shows the benefits of light exercise for chronic pain patients. (Just this week, we hear news of a study showing adolescents with fibromyalgia experience less pain if they maintain some level of activity — Doctor’s Guide, via Fighting Fatigue.

Good choices for those living with chronic pain conditions include walking, swimming, yoga, and Pilates. Start with a one-on-one class, if you can — and if your area is lucky enough to have such a person, find a teacher with experience dealing with students who have chronic pain conditions. (Tip: Identify all area yoga teachers, for example, then call each studio and ask if any teacher there has dealt with your disease or condition, either personally or through students.)

For more on getting an exercise program in place while you’re coping with chronic pain, see my recent post “Exercise and Fibromyalgia: A Love/Hate Affair.”

3: Make New Friends Who Know What You’re Going Through

Support groups can help — but they can also hurt. Be careful with this one.

Here’s why: How we talk to ourselves about our pain has a definite, measurable effect on our perception of that pain. Given that we all have a right to put a voice to our pain, to tell our stories and have them understood, a support group would be a natural way to explore that process.

However, the catch is that when we all tell our similar-yet-different stories, we’re all susceptible to a perceived or real increase in pain.

So, it’s important to find a group that encourages healthful, positive ways of dealing with the disease.

This is not to say that you should tell your story only to Pollyannas, who will then tell you to smell the roses and just get moving or try this, that, or the other alternative treatment and you’ll be right as rain. That, to my way of thinking at least, would be worse than being hyper-aware of my pain, frankly.

What I am saying is this: look for a group that focuses on solutions — that allows its members to freely discuss their stories and rant and rave if they like, but that, in the final analysis, wants to help each other do better.

That’s real support. Otherwise, it’s just a bitch session over coffee and for that? I have my best friend.

4: Keep A Wellness Log to Track Your Symptoms

Get in the habit of keeping a daily record of your symptoms, together with any factor that can affect your experience of your pain. You can do this in a computer file — a plain text document, for instance, or an Excel spreadsheet if you’re feeling really ambitious.

Or you can get a simple flip-top reporter’s moleskine, which is what I use. Here’s an example of this model, from Amazon (affiliate link).

At a minimum, you should track:

  • Your daily food intake
  • All medications, including time and dosage
  • All supplements you take, including time and dosage
  • Your sleep — duration and quality
  • Your activity level, including household chores and more formal exercise
  • Any significant alterations in mood and stress level
  • And, of course, your symptoms, preferably ranked on some sort of numerical scale

A note about pain perception scales: whether you use the traditional “1 to 10” or some other model, ranking your pain is not about minimizing it or defining it. Rather, it’s merely a useful tracking tool for you and your physicians to be able to see changes over a period of time.

For instance: if you experience a flare-up within 24 hours after you attend a particularly strenuous yoga class, and this continues to occur as a pattern, you can make an informed choice about whether a more slow-paced or restorative class focus might be more beneficial to you.

5: Talk To Your Family & Significant Other About Your New Journey Together

Get those close to you on board with the concept of this new experience as a marathon, not a sprint. It will affect all of you, and you should start now to cultivate a habit of open, honest communication with them about your condition.

Sit down with them for an extended “family meeting” and make sure you cover the following points at a minimum:

  • Your diagnosis
  • Your prognosis
  • Likely symptoms you may experience — even if you’ve had them already, you need to make sure they understand, very simply, how you feel
  • What they can expect from you
  • What you need from them

Cultivate a “team approach” right from the start, and then when things inevitably get more stressful down the line, you’ll all feel more comfortable having an honest talk about it sooner rather than waiting until feelings reach the boiling point.

6: Monitor Your Sleep

Changes in your condition often manifest first in your sleep patterns. Note these changes on a daily basis in your wellness log, but also pay attention to your “sleep hygiene” — the practices and “rituals” you’ve developed, sometimes unconsciously, surrounding your nightly sleep.

In many cases, simple adjustments in your nighttime rituals can enhance the quality of your sleep. But first, you have to know what you’re doing now.

Take note of whether you read or watch television; what you read or watch; what music you listen to; the temperature of the water if you take a bath; how close to bedtime you last ate or drank anything; how often you get up to go to the bathroom at night …

These and other factors can indicate a potential problem with your sleep patterns, and you can then work to change those rituals to increase your body’s chances to heal itself while it rests.

7: Revise Your Expectations of Yourself

While I don’t advocate thinking of yourself as a victim or a patient, you will have to wrap your brain around a changed reality, at least for the time being.

Normally, by the time you reach a diagnosis, you’ve already had some period of time where you’ve experienced the pain symptoms. But it’s all too human to think “This is just temporary. As soon as I find out what it is, I can cure it and I’ll feel all right again.”

Of course, everyone hopes that’s the case. But the sad truth is that with most chronic pain conditions, we have no cures. We have treatments, and many of them may offer substantial relief.

But even the mere act of finding those treatments that are successful for your disease can be quite exhausting. So lower your expectations of yourself for awhile, while you get acquainted with your condition and your changed reality.

8: Clear Your Plate

Healing from a chronic pain condition takes an awful lot of energy. Don’t let self-imposed feelings of obligation diffuse that energy unhelpfully.

Think carefully about obligations you’ve incurred in the past, and ask yourself a hard question: If this obligation presented itself to me today, would I say “yes”, knowing it takes energy and time away from my efforts to heal?

Some obligations you can’t — and don’t want to — give up. Although child care is a taxing prospect even for the perfectly healthy, for instance, I’d never let my child live somewhere else, even though she has many relatives who love her dearly and would care for her if I couldn’t.

The truth, for me, is that caring for my daughter gives me as much joy and pleasure as it takes away in energy or time. So — again, for me — this is not an acceptable obligation to walk away from.

But a great many of your obligations can and should be renegotiated. Your priority must be your own health. Don’t just give lip service to this idea. Do yourself the honor of making this a true commitment, and let go of those things that impede your progress where you can.

9: Practice Radical Self-Care

Taking care of yourself is about to take on a whole new meaning for you.

Radical self-care is all about protecting yourself, knowing that when we put ourselves first, we are then more capable of helping others.

Radical self-care is a concept that deserves a more thorough treatment than a single mention in one post, and it’s a favorite topic of mine that I’ll address in more depth in future posts. For now, just be aware of what it encompasses:

  • Eating the highest-quality whole foods you can afford and drinking the most healthful beverages only
  • Taking total care with and paying perfect attention to your medications and supplements
  • Dedicating sufficient hours to restful sleep in the most serene, comforting environment you can manage to create
  • Daily meditation (and prayer, if it comports with your spiritual beliefs)
  • Daily movement and light exercise — always honoring your limits
  • Integrity in your commitments to yourself
  • Managing your expectations of yourself
  • Maintaining positive self-talk (see the next item in this article)
  • Practicing impeccable hygiene on a daily basis

10: Learn and Change Your Inner Monologue

The words we use in our thoughts and the long-running “tapes” that keep playing in our heads have real, concrete effects on our physical lives.

Pay some cold, hard attention to the inner monologue you’ve got running now. Is it full of hopelessness and despair? Is it based on fear?

If so, welcome to the human race. It’s only natural, once the giddiness of finally obtaining a name for the mysterious beast you’ve been fighting for so long evaporates, to find yourself focusing on the end game and wondering just how long you’re going to have to struggle with this pain.

While it’s perfectly understandable, and you should absolutely acknowledge and deal with all your feelings, including the so-called negative ones, you should take care not to allow those feelings to become the source of your inner self-talk.

Take some time every day to counteract those normal feelings of anxiety and worry with positive imagery and messages.

Tell yourself the truth — you don’t know how long this will last but you are doing everything humanly possible to manage it and heal from it. You’re taking radical care of yourself, you’ve put yourself and your own wellbeing ahead of everything, you’re in the process of renegotiating obligations that prevent your healing, and progress is being made every single day in the fight against chronic pain.

Let that be your gift to yourself. It really does help keep your energy and your spirits up — and yes, it does make a difference in how you manage and deal with your chronic pain.

To all my fellow old-timers, what did I miss? What advice would you give the newly diagnosed? Leave your suggestions in the comments!

Savella, Third FDA-Approved Fibro Drug, To Be Released Earlier Than Planned

Fibromites will have a third FDA-approved choice next week, earlier than anticipated. Savella(tm), the new drug, is produced and licensed by Forest Laboratories, Inc., and Cypress Bioscience, Inc. Originally scheduled for release in March, following a January 2009 approval decision, the manufacturers went back to the drawing board for what was described as a minor cosmetic change (i.e., they didn’t like the way the pill looked). That change also had to receive FDA approval, and release was anticipated sometime in the middle of the year.

But the approval came more quickly than expected, and shipment of Savella is scheduled to begin this Friday, with availability in pharmacies as early as next Monday, April 28, 2009.

About Savella

Savella is the tradename for milnacipran HCl. It’s classified as a selective serotonin and norepinephrine dual reuptake inhibitor; both neurotransmitters are believed to play some part in the biochemical dance that becomes our fibromyalgia symptoms.

Safety Concerns

As milnacipran is similar to antidepressants and other medications prescribed for psychiatric disorders, there is some concern over an increase in suicidal thoughts, especially in individuals under the age of 24. Contraindications include simultaneous MAOI use (or use within a 14-day period following the last dose of the MAOI) and patients with uncontrolled narrow-angle glaucoma.

Another Times Article?

Is perhaps now a good time for another NY Times article taking back all the crap about this being a “real” disease? How many drugs do you need on the market to establish that this is not some modern-day hysteria (I’m looking at you, Elaine Showalter) or BS need for attention?

Of course, the unbeliever responds: “No number of medications will convince us, because all it means is that there are a lot of you out there deluding yourselves, and the pharmaceutical companies don’t care where their bucks come from.” All right, that’s fair enough, I suppose. But here’s my question: what on earth gives you the right to decide that anyone else’s pain is not “real” in the first place?

Nobody (well, nobody sane) thinks a cancer’s patient isn’t real. Yet, until the X-ray and later the MRI and PET scan technologies were commonplace, no one could “see” the cancerous cause of the pain inside the body — at least, not until the autopsy. And yet, with fibromyalgia and CFS, we have a whole host of otherwise intelligent, educated men and women ready to dismiss the reports of thousands of other intelligent, educated men and women simply because … why, again? You can’t “see” a cause?

You mean you can’t see a cause yet.

And even that’s not the whole truth, for of course there are observable, measurable differences in the fibromyalgia patient’s biochemistry.

But, no. We’re the cranks. We’re the crackpots. We’re the ones who need attention. Frankly, I think it’s quite the other way around. I think the unbelievers are the ones who are a little unbalanced — or at the very least, incapable of rational thought — and greatly in need of some attention. I think that’s why they go against the great majority of doctors and researchers who understand the quite simple truth: that even when we don’t understand a disease’s origins, cause, or mechanisms, the fact of our lack of understanding has nothing to do with whether the disease exists.

In other words: just because you don’t understand fibromyalgia thoroughly, it doesn’t mean fibromyalgia isn’t real.

Other Resources

More information on Savella from the manufacturer

Here’s another article on Suite101 about Savella.

More on Sleep and Chronic Pain

Every morning I go ’round the webs and look for cool stuff, moving stuff, interesting stuff, maddening stuff on fibromyalgia, CFS, and any other chronic pain condition that anyone out there might be working on and writing about. One thing I was struck by this morning was the common theme of sleep disturbance, especially in light of the last post here about sleep and weight loss.

Here’s a post from But You Don’t Look Sick (which, as blog/site titles go, is fairly awesome). Who among us hasn’t experienced that creepy, achingly lonely and frightening feeling of being the only one in the entire world awake at whatever ungodly hour of the morning it might be?

At Strangely Peculiar, my fellow fibromite Excentric writes about the incredible benefits she experienced with a (gasp!) good night’s sleep, credit for which goes to Atavan. Let’s hear it for appropriate medication, folks!

And at How to Cope With Pain, published by a board-certified psychiatrist with extensive experience helping patients with chronic pain, there’s a whole page of links to helpful posts to assist you in getting that much needed and all-too-elusive good night’s sleep.

I have my own little rituals, of course, as we all do after any length of time spent living with these conditions. Mine include winding down, turning things off that have glowy screens (TVs, computers? I’m looking at you), a few minutes of light yoga and a few minutes of meditation. Then, I take 2 acetaminophen plus my hypertension meds, and crawl under the covers, fingers crossed.

What do you do to help yourself sleep at night? Have you tried medication? Let me know in the comments.

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