I’m working feverishly on several projects, including three for this site alone, and those WILL be coming (by God) but in the interim, I wanted to share a few thoughts that were sparked by a conversation I had today with a writer who was interviewing me about chronic pain and two topics near and dear to my heart (and … well, other body parts): parenting and sex.

Warning: This is going to be frank. If you’re easily offended by such stuff, please exercise your mouse on over to the “back” button or the little “X” up there in the corner of your browser and clickity-click. ‘Kay? Moving on.

The interview was shortish – about half an hour or so – but we briefly touched on both topics: how chronic pain affects (A) our parenting relationships with our kids and (B) our sex lives. The chronically pained (like that? I just made it up because this whole language problem with writing about chronic pain just sucks) think and write and talk a lot about how pain affects us — but  it also affects others too, and the interviewer’s questions got me thinking: both of these seemingly disparate topics are really about one thing: how chronic pain screws with our relationships with other people, and ourselves.

Chronic Pain Affects How We Interact With Others

The first thing that occurred to me was a relatively simplistic notion: chronic pain has a significant impact on how we relate to other people in our lives. It has to, because it changes our world. Anything that has that much power over our routines, our relationships to our bodies, our self-images, must also necessarily impact our relationships with others. As much as we might wish otherwise and say to ourselves, “It won’t — I won’t let it” — well, it’s wishful thinking.

So the first key, I think, is to simply acknowledge that it’s there, that it will change things, and that where our power lies is in how we react to that change. We’re not powerless, after all. As I spoke with the interviewer we began talking about the difference between pain and suffering — pain isn’t optional for us, but suffering to a large extent is optional. It arises when we resist the “what-is” in the moment, if I can get a little New Age on you for a second.

That resistance is what hurts us emotionally and what’s behind the perception of suffering. Yet many of us find that when we can simply be present with the pain — as in present, as in “not the past and not the future, not even two seconds from now” — we reduce our perception of suffering. And, of course, suffering is all about the perception. If you think you are, or you think you’re not, you’re right.

It’s Hard to Feel Sexy When You Hurt Like a Mother#*@&^%

For those of us who have had or are in romantic relationships while coping with chronic pain, our conditions have a whole other realm of impact and that’s on our sex lives.

“Ha! What sex life?” I hear some of you asking yourselves. Exactly my point.

Whether we want to admit it or not, sex is important in a relationship (well, usually). Unless you and your partner both are completely happy with how your pain has limited or changed your sex life together, then, my friend, you’ve got a problem or will soon have a problem.

Here, too, pain changes how we relate. Except that what we’re relating to differently now isn’t just another person — it’s also our own bodies as well as the relationship itself.

In my last relationship (my marriage, which ended a few years back), there were many problems — and only a few of them had anything to do with my pain. But even so, I admit that my condition(s) negatively impacted our relationship, and part of that was due to the fact that I just didn’t want to have sex.

Well, that’s not entirely true. I did. But I also … didn’t. You’ve heard the saying “the spirit is willing but the flesh is weak”? In my case, it was more like “the spirit and some parts of the flesh are on board with this but the rest of the flesh is saying ‘Oh HELL to the NO.”"

It’s important to be precise.

I’ll leave the tips and advice for another post but I’ll simply say this now: sex is a crucible for the entire relationship. It’s your canary in the coal mine. If it’s off kilter, you’ve got problems elsewhere, too. (And probably vice versa.) What’s a symptom of which? Does it matter, really? You’ve got to talk about it – honestly, openly, and without prejudging what kind of response you’re going to get.

This is easier said than done, especially if your spouse has been less than supportive, I know. I have no easy answers for anyone. All I know is that the alternative — swallowing your issues and either simply refusing to play, or worse going along with whatever just to please the other party — will kill you. It will kill you literally or figuratively — in body or in psyche — but either way, it’s not living. Not really.

Parenting and Pain

One of those awesome projects I’m working on for this site is a series of posts about how to talk to your kids about chronic pain, so I don’t want to get too far into this topic right now. But I’m learning a lot from reading what the experts who are participating in this series have to say about the subject, and it’s also triggering some thinking of my own about my experiences as a single mom.

As I said to the interviewer this morning, I think kids need two things: information and reassurance. It might seem like you’re protecting your child by not being up front about your own illness with him or her, but please believe me on this point, if you believe nothing else: the little ones KNOW. They just sense things, much more than we ever suspect.

Talking to them in an age-appropriate way is the first and crucial step, I think, to being a more effective parent when you’re coping with chronic pain. And it’s not a conversation you can expect to have once and be done with it, by the way. Be prepared to go over this stuff a few times, at least. But again – more on that in the appropriate post.

For now, I just want to acknowledge for myself, publicly, that chronic pain has changed my approach to parenting. That I can’t be the parent I dreamed of being in exactly that way I envisioned anymore. But I can be even better, in some ways, by being honest with my daughter, by showing her my strength, and by trusting her enough to let her have her honest emotional and psychological response to the truth of my condition.

And maybe when we get right down to it, that’s the problem underlying all of these squirrelly issues: do we really trust the other person enough to let them respond honestly to our pain? Or are we so afraid and gunshy (for good reason, thanks to the responses we often get from those who are supposed to be providing for our medical needs) of confessing the truth about our pain that we can’t even be real with our own loved ones?

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:

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.)

I’ve already posted about my other resolutions over at my other site, but this one’s deeply personal to me, so I wanted to share this list with the group that knows the most about the peculiar challenges I face living with fibromyalgia and degenerative disk disease: TTD readers.

When I started this site it was with the openly-stated intention of building a platform for a nonfiction book I’ve wanted to write for the past ten years, ever since I was diagnosed with these two conditions. That’s still the plan, but over the last few months, TTD has become so much more to me than just a platform.

The people I’ve had the unique pleasure of connecting with here and because of this site have lit up my life in profound and joyous ways. You guys have made me laugh, cry, and rage with anger over your deeply personal stories and the proud, honest, deeply meaningful way you share them.

So, here are my resolutions for the Tramadol Diaries in 2010, and I offer them to you as a gift, of sorts — a way to reconnect with you all and give back just a little of what you’ve given me in 2009.

Here we go!

1. Share more of my personal story about chronic pain.

I don’t know why but I’ve always found it easier to write about other people’s pain experiences than my own. I start to feel a little twitchy when I dive into my own story, and I think that’s a pretty significant sign that it’s something I need to do more of, to explore my own relationship and experience with pain in more depth. I’ve gotten a lot of really lovely compliments on the few posts I have shared in this vein, so I’m going to choose to believe those folks and open up more on this subject in 2010.

2. Write more often here.

I’ve no excuse, really, except that this site doesn’t pay the bills, another one does, and the bills were a BIG problem for me in 2009. I had to focus on what helped, but the honest truth is that I could have done more here, and done it more consistently. I resolve to post at least twice a week here in 2010. (I almost wrote “every day!” but, c’mon, the last thing we need is another reason to punish ourselves.)

3. Do more features like the ones coming up on chronic pain at work and talking to kids about chronic pain.

I have had such an amazing experience working on these two upcoming series and I’m so excited to share them with you in January! Connecting with experts, learning from them, crafting their advice into a solid sequence of posts … it’s all been incredible, and I really, really hope you all get as much from those series as I have gotten from writing them so far. I want to do more topics like that, maybe every other month or so.

4. Add some video and podcasts to the blog.

I’d love to jazz this place up with some video and podcasts, too! I can’t promise this will arrive in any particular timeframe as I have a lot to learn about this technology before I dive into it, but I’m looking forward to it. If you guys have any ideas about what topics might make particularly compelling video/podcasts, please let me know in the comments! I’m all ears.

5. Get over myself and put my picture on the site.

Again, no excuse. Just major issues with my looks. I’m dropping that here in 2009 and refusing to carry it with me into the New Year. So, I will get a nice picture done and post it here and on Twitter to replace that god-awful “Dark Shadows” thing I’ve got going on there currently.

6. Explore adding forums to the site.

I’ve resisted this one for awhile — there really didn’t seem to be a need for this, as there are already a number of good message boards out there for folks with specific conditions. But a number of you have  suggested this and I’m willing to explore it. So I’m not promising they’ll magically appear in 2010, but I will commit to looking into it, seeing what’s required, how hard it would be, how much time it would take, and how much y’all want it.

7. Work a bit harder to spread the TTD “message” — that you can thrive, not just survive, with chronic pain.

There’s so much more to building a platform than just blogging, although I think this is my first and biggest piece of the foundation and I’d like to continue focusing on it. There’s also Twitter, Facebook, and other sites, as well as journalists and freelance writers publishing about chronic pain-related topics,  though, and I’m going to do my best to get more active in this area in 2010.

8. Connect with more chronic pain “thrivers” on Twitter and Facebook.

Likewise, there are a lot of tweeps and Facebook’ers out there who are sort of drifting with the social mediasphere, and not connecting with any one site. I’m on a mission to bring them here, as at least one of their stops on the information superhighway, and see if TTD is the place for them.  I want to hear more stories, talk to an even more diverse group of chronic pain thrivers, and find out from as many people as possible about their concerns, their dreams, their problems, their unique solutions.

So that’s it! My gift to you in 2010 is a more active and actively-engaged site. I hope you’ll join me. I think it’s gonna kick ass, if you’ll pardon the salt.

The Tramadol Diaries First Virtual Book Tour Proudly Presents Kelly McGonigal and Yoga for Pain Relief

From Sherrie: As I noted here earlier, Kelly McGonigal is a yoga instructor and Stanford University psychology instructor. Most importantly for our purposes, she’s just published a book titled Yoga for Pain Relief, and as a long-time Tramadol Diaries reader, she wanted to share some of the fruits of her labors with other TD readers in a virtual book tour.

Of course, I grabbed that opportunity! I’ve written about my experiences with yoga before, both here and in articles for other sites, but I really can’t say enough good things about yoga.

I joke that tramadol saved my life, and it did — but the truth is, so did yoga. Without my daily practice, I honestly doubt that I’d be here right now, joyfully writing this introduction in support of Kelly’s “labor of love.”  Chronic pain not only means we don’t move our bodies as we want to and should — it also means our psyches are burdened as well. It shouldn’t be a surprise to anyone that chronic pain patients have a high incidence of depression; as many of us say, “Let me stand on your chest for ten years and let’s see how long it takes YOU to get depressed.”

Yoga not only helps relieve the physical pain but it also gives me the tools I need to eliminate the suffering aspect of pain. That, in turn, greatly and positively enhances my quality of life and sense of wellbeing. Yes, I still hurt. The difference is, I’m not letting it define me, nor am I burdened with all those fearful, tense feelings that collectively comprise suffering.

So, without further ado, here’s Kelly with an excerpt from her new book, Yoga for Pain Relief: Simple Practices to Calm Your Mind & Heal Your Chronic Pain (Whole Body Healing) (disclosure: that’s an affiliate link to Amazon – costs you nothing extra, adds a few pennies to my bank account).  This excerpt includes instructions for a special practice sequence that might help anyone coping with chronic pain. Also be sure to check out the special bonus guided meditations at the end of the post!

CAUTION: As always, talk to your doctor before starting any new exercise regimen.

Lisa’s Story: Finding Hope Through Yoga

Lisa’s achey fatigue was both mysterious and maddening. When it first showed up during the winter holidays, she thought it was just the flu combined with exhaustion from overdoing things. But as the holidays passed and her fatigue didn’t, her family became alarmed and encouraged her to see a doctor. Her general physician couldn’t give her a definite diagnosis and referred her to a specialist.

The specialist gave her lots of tests but also couldn’t tell Lisa for sure what was causing her exhaustion. Eventually Lisa was diagnosed with chronic fatigue syndrome. By this time, she had taken an extended sick leave from work and was wondering if she would ever be able to return.

Lisa’s physician gave her two prescriptions: an anti-inflammatory drug and an antidepressant. What she wasn’t given was an explanation for her symptoms, or any answers about when or even whether she would recover.

To Lisa, the lack of medical understanding meant lack of hope. Her growing sense of hopelessness was accompanied by greater fatigue. Some days she was so tired, she crawled back into bed less than an hour after waking. The worst part was that even though she was almost always exhausted, she had trouble sleeping. This left her plenty of time alone with her worries and frustrations. She described it as a “wide-awake nightmare.”

Without a clear path for recovery, Lisa needed some way to feel like she was taking care of herself. She wanted to be able to do something every day that felt like an active step toward improving her energy and mood. Lisa didn’t have the strength for exercise, but she found great solace in restorative yoga. It was something she could do every day, knowing that it made her feel better both physically and emotionally.

Lisa kept her yoga mat and props out so that there would be no barrier to practicing. She took great care in choosing inspirational music to play while she practiced, knowing that her favorite songs would lift her spirits. She took seriously the idea that focusing on gratitude, joy, connection, and courage could change the state of her body. She chose one meditation each day to practice in her final restorative pose, imagining the thoughts and sensations of each meditation restoring her strength and well-being.

Lisa thought of her restorative yoga practice as her third daily prescription. It became the one part of her self-care program that consistently made her feel optimistic about her future.

Many types of pain and illness are physically and emotionally overwhelming, especially when they pull you out of your normal life and put you into the role of patient. When pain or illness is this overwhelming, even a few minutes of focusing on health can restore hope and inspire courage in the journey of healing. Whenever you find yourself lowest in spirit, you can always turn to yoga to affirm the part of you that is healthy and whole, despite pain or illness.

A Simple Restorative Yoga Practice: Supported Inversion

Benefits: By gently bringing the legs above the heart, this pose improves circulation and has a healing effect on many systems of the body, including the nervous system, the lymphatic system, and cardiovascular system. It can be done no matter how little energy you have, and can help make “rest” more restful and less stressful.

Props needed:

• A wall, chair, or sofa.
• Optional: a small rolled towel or blanket to support your neck and head
• Optional: an eye pillow or cloth to drape over your eyes.

Instructions:  [Sherrie's Note: there are three parts to this practice -- the physical asana, breathing, and the meditation. Read through the entire description at least twice before attempting. You might also want to consider tape-recording these instructions and playing them back as you go, or having a friend or loved one read through them as you move through the asana, at least the first time you try it.]

1. Find yourself seated on the floor near the wall or your chair, with one side of your body facing the wall or chair.
2. If you are using extra support for your head and neck, place it about one arm’s length away from the wall or chair, where your head will rest.
3. Start to lean back on your arms as you raise your legs onto the support of the wall or chair.
4. Let your hips turn as you do so, until you find yourself lying comfortably on your back, with your legs resting on the wall or chair.
5. If you are at the wall, make sure that you do not feel a strain behind the knees, in the back of your legs and hips, or in your lower back. If you do, try the pose with hips further away from the wall, to reduce pressure on the legs and back. If you continue to feel any strain in the wall version, you may find the bent-leg version using a chair or sofa much more comfortable.
6. Let yourself relax into the support of the pose.

Breathing: Once you are settled in the pose, bring your hands to rest on your belly. Feel the belly rise and fall as you breathe.

Meditation: This pose is in invitation to drop your usual worries and burdens. As you inhale, say silently in your mind, “Let,” and as you exhale, “go.” Yoga is about feeling safe and supported, in both your body and in all areas of your life. You can also repeat silently in your mind, “I am safe” or “I am supported.” If there are other words, images, or memories that make you feel safe and supported — such as loved ones, a favorite place, or a prayer — bring them to mind.

Bonus For Tramadol Diaries Readers! Meditations Just For Chronic Pain Thrivers

In addition to the awesome meditation/yoga asana practice Kelly shares above, she’s offering something special just for Tramadol Diaries readers. At Kelly’s website, Yoga For Pain Relief, you can also download or stream a guided meditation that will guide you through practices of breath awareness, body gratitude, and listening to your body. There’s one for befriending your body, and another for listening to your body (both links are to MP3 files).

I’d like to thank Kelly both for writing such an amazing resource for those of us living with chronic pain, and for sharing her words of wisdom with Tramadol Diaries and its readers. I’ve learned a lot, and I hope you have, too. Kelly has an open invitation to stop back by anytime she likes!

Regular Tramadol Diaries reader Kelly McGonigal contacted me this week with some amazing, awesome news: her book, Yoga for Pain Relief: Simple Practices to Calm Your Mind & Heal Your Chronic Pain (New Harbinger, Dec 2009) is now in stock at Amazon! (Yep, that’s an affiliate link. So is the one at the bottom of the post.)

Even better? Kelly’s going to do a virtual book tour to promote Yoga for Pain Relief and one of her stops? Right here!

That’s right– Kelly will be the guest blogger here at The Tramadol Diaries very, very soon — date to be announced just as soon as we pin that down. I’ve already gotten a sneak peek at what she’s got in mind, and it’s good stuff — practical, helpful, and very, very cool.

In the meantime, I encourage everyone to get a copy of Kelly’s book. Just as much as tramadol has, yoga has saved my life in the face of chronic pain. From specific postures that relieve specific pains, to the mental shift that removes the suffering element from the perception of pain, yoga’s been an important part of my treatment plan.

Why should you listen to Kelly? Well, simply put: she knows whereof she writes. Kelly is a former chronic pain sufferer herself (that’s right — I wrote “former”! Aren’t you already intrigued?), and she’s not only a Stanford psychology instructor but also a prominent yoga teacher as well.

Personally, I can’t wait to get my copy of Kelly’s book and put her suggestions into practice.

OH — and if you’re reading this blog because someone you know has chronic pain? This would make a great Christmas present. I’m just sayin’ …

Congratulations to Kelly McGonigal, The Tramadol Diaries’ first published reader/author! May you enjoy every success.

I don’t know about you, but I don’t generally pay others to abuse me.

Now, I have the greatest respect for the medical profession. My own mom (rest her soul) was a lifelong nurse and nursing teacher, and I’ve been blessed with several good doctors. I’ve got nothing to complain of, currently.

But not all fibromyalgia and chronic pain patients are so lucky. And I think it’s high time we blew the lid off the big not-so-secret secret behind dealing with chronic pain: sometimes, our biggest detractors wear white coats.

Call it the God complex. Call it institutional arrogance. Call it personal fear or ignorance or – heck, call it Bertha, if you like. But whatever the cause, we deal with bad doctors and nurses all the time.

Whether it’s the general practitioner who thinks you’re making your pain up, or the nurse who’s consistently rude to you in the exam room when you ask for a medication refill, those stories need to be told, and I’d like to tell ‘em here.

So send me your bad doctor/bad nurse stories — you can find me on Twitter, or use the contact form here on this site. Be sure to tell me how you dealt with the problem, if you did deal with it, or whether you changed doctors as a result of this encounter.

One request: please leave out any identifying personal information for the person in question. When I share the stories, I’ll redact all of your personal info as well, of course. If you want to be really anonymous, just leave me a comment to this post.

Let’s get this epidemic problem out of the dark corners and bring it into the light, where it belongs.

Crocs are, without doubt, my favorite shoes when my feet ache. OK, pretty much anytime, really, but especially when my feet ache.

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Personally, I’m jonesing for a hot pink pair with a fur lining. You know, in case someone wants to buy me a Christmanukwanzyule gift a wee bit early.

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Many fibromyalgia experts  and texts recommend nutritional supplements as a way to offset or eliminate fibro symptoms. But do those supplements really work?

Following is a rundown of a few of the most-often recommended supplements, as well as my own personal experience with some of them.

CAUTION: Remember that, as with every potential treatment, you should always consult with your physician before trying any of these supplements out. Even so-called natural remedies can interact dangerously with other remedies and medications, so talk to your doctor first.

Malic Acid and Magnesium

Particularly when taken together, experts suggest, malic acid and magnesium can alleviate the more painful fibro symptoms. Malic acid is derived from tart apples, while magnesium is, of course, an essential mineral necessary for more than 300 bodily biochemcial functions.

Among the most important of these functions are muscular function and the creation/processing of ATP in the body. (ATP, briefly, is adenosine triphosphate, and results from the enzyme-catalyzed processing of sugar and fat.) Magnesium activates the process, and malic acid helps the body make ATP more efficiently.

Past research also suggests that magnesium may work to dampen the processing of some types of pain signals in fibromyalgia sufferers.

You can view more information on magnesium at the NIH fact sheet here, and an abstract of one study’s results looking at the combination of malic acid and magnesium can be found here (results: “significant reduction” in pain symptoms in increased dosages in open trial). However, it should be noted that an earlier double-blind phase of that same study showed no appreciable effect on FM patients who took magnesium/malic acid supplements.

Possible side effects:

• Diarrhea
• Nausea or diminished appetite
• Respiratory difficulties
• Hypotension
• Adverse interactions with some medications (including osteoporosis drugs, certain hypertension medications, antibiotics, and muscle relaxers)

S-adenosylmethionine (SAMe)

A naturally-occuring chemical compound found in the human body, SAMe plays an important role in several critical functions, including the immune system response and the creation and processing of chemical neurotransmitters such as serotonin and dopamine.

Some research indicates that SAMe might be beneficial for FM patients.  In one double-blind study looking at SAMe’s effects on 17 fibromites (more than half of whom also had been diagnosed with depression), both the number of painful tender points and assessed depression decreased appreciably with SAMe as compared to the placebo group. While intriguing, the relatively small number of subjects in this study warrants caution in evaluating its results.

Other study results conflict with each other. In one slightly larger study (44 subjects), there was appreciable decrease in some symptoms (pain, tiredness) but not others (tender points, mood). Another study delivered SAMe via IV, but found no measurable decrease in tender points.

Possible side effects:

• Indigestion and other digestive disorders
• Insomnia
• More rarely: diarrhea, acid reflux
• Caution: FM patients who are diagnosed with bipolar disorder should not take SAMe; it may increase the occurrence and severity of manic episodes. SAMe may be contraindicated for those taking antidepressants; consult your doctor first (as you should before taking any new supplement or medication).

5-HTP (5-hydroxytryptophan)

There is some promising research on 5-HTP and fibromyalgia, showing that it can reduce tender points and increase serotonin, the “feel good” neurotransmitter.

There is no fact sheet for 5-HTP at NIH, but you can find good information on it at this site. While it’s found in low levels in some foods (turkey, for one), most will want to choose a supplement form.

Possible Side Effects:

• Loss of appetite, nausea, and vomiting
• Diarrhea
• Pupil dilation
• Muscular coordination problems
• Blurred vision
• Irregular cardiac rhythms
• Caution: Do not take 5-HTP if you’re currently taking any antidepressant.

Vitamin B12

A few studies with relatively small subject numbers indicate that FM patients may have lower levels of vitamin B12. As B12 is an essential vitamin, it’s certainly worth looking into your intake.

Good dietary sources of B12 are animal products — meats, fish, eggs — and fortified cereals. It’s not usually found in fruits and vegetables. The current RDA for mature men and women ranges from 2.4 to 2.8 micrograms.

You can also take a multivitamin that has B12 in it, or an individual supplement pill for B12 or B Complex (includes B12 as well as B1, B2, B3, and B6).

You can read more information on Vitamin B12 at the NIH website’s fact sheet.

Possible side effects:

• B12 has a very low risk of toxicity but it can be contraindicated with certain medications. As always, talk to your doctor.

Vitamin D

Some researchers have found a connection between vitamin D deficiency and general musculoskeletal pain. Certainly, vitamin D is generally recommended for overall nutritional health and wellbeing.

The current recommended intake level for vitamin D in the US is 200 I.U. for men and women up to age 50, rising up to 600 I.U. for older patients.  Toxicity has been established at 50,000 I.U.

It’s difficult to get all the Vitamin D you need from foods, but it is present in fortified milk products and certain fatty fish (particularly the skins). You can also increase your body’s own production of the vitamin with sunlight exposure without sunscreen (just a few minutes a day are all that’s required).

Get more info from the NIH Fact Sheet on Vitamin D.

Possible Side Effects:

With too-high intakes of Vitamin D, certain side effects are known:

• Nausea
• Vomiting
• Decreased appetite
• Constipation
• High blood levels of calcium may also lead to confusion and irregular heart rhythms

Personal Experience With Supplements for Fibromyalgia

Of these commonly-recommended supplements, I’ve given two-month trials to malic acid and magnesium (taken together); vitamin B12; SAMe; and 5-HTP. I’m currently experimenting with vitamin D.

I experienced no measurable relief with malic acid and magnesium. While on increased levels of B12 (a multivitamin plus an additional supplement, providing a total of 580 mcg, I did notice a slight increase in my energy level, but no decrease in pain symptoms.

SAMe and 5-HTP both produced some interesting results. I believe my pain symptoms leveled off — I had fewer flare-ups, and when I did experience increased pain days, it seemed that my “lows” weren’t quite as low as previously. Also with 5-HTP (but not SAMe), I felt my neck/shoulder tender points were a little diminished in terms of sensitivity.

Of course, in each of these try-outs, I knew what I was taking. My results could be attributable to a placebo effect (although that doesn’t explain why I didn’t experience any benefit with malic acid and magnesium; 10 years ago, when I was first diagnosed, it was the first- and most-often-recommended supplement).

You should never take any one person’s recommendation for a treatment option. Do your own research, talk to your doctor, and if you do want to try one of these supplements, try going in without any expectations.

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It was the sickest I’ve ever been.

The first Monday in December of 2003 started off fairly ordinary, but quickly devolved into a medical nightmare. I remember getting up at 4:30, as is my custom, and sitting in meditation for half an hour, after my morning dose of tramadol. The theory is that while I meditate, the tramadol and the acetaminophen I take with it begin to reach higher levels of effectiveness and by the time I’m done meditating, I can engage in my daily yoga practice.

But that day, when the half hour meditation was up, I just felt awful. No improvement — even slightly worse than I usually do right before a regularly scheduled tramadol dose. Almost immediately, my young child awoke crying — unusual for her. I quickly determined that she was running a low fever, and had a few scattered red spots across her arms.

Thinking she might have chicken pox, I called in sick to work and took her to the pediatrician. But by the time the doctor came into the room, it was pretty obvious that the sick person in the room wasn’t my daughter — it was me. I hurt all over, as people with fibromyalgia uusally do, but this was as intense as any bad flareup I’ve ever experienced, maybe more so. And I absolutely knew without doubt that I had a pretty high fever.

By the time we were discharged (without the chicken pox, thank goodness), I was keenly uncomfortable with putting my daughter in the back seat of a car that I was in charge of at that point. I called my husband, who had already left for work — he in turn called my brother who came to pick us up. I went home and crawled into bed as soon as my mother showed up to take care of my daughter.

By that evening, my fever had climbed to 104 degrees Fahrenheit, and I was hallucinating. Alternating doses every two hours of acetaminophen and Motrin were doing little to break that fever, and I was in so much pain and discomfort that sleep was impossible. Instead, I lay in some twilight fugue state between fully conscious and … something else entirely.

In the morning, my mother suggested she take me to the doctor’s office for tamiflu. That’s when the insanity really started, by the way — quickly:

• my mother passed out in the waiting room due to a undiagnosed cardiac problem;
• since I couldn’t go with her to the emergency room due to my flu, my brother accompanied her;
• while waiting with her in the ER, my brother’s arm began to swell up;
• my husband came home to take care of us and the dog threw up on him.

Funny in retrospect, because we all survived — but at the time … wow. No fun.  And my flu symptoms — the worst of them, I mean (the pain and the really high fever) — lasted for five days, despite taking tamiflu religiously.

In short, this was the absolute sickest I’ve ever been.  And just how sick I’d been was driven home dramatically and tragically when I returned to work the following week to find out that a colleague’s secretary had died two days before — from the flu.

As if the pain from fibro and degenerative disk disease weren’t enough!

It’s important for all of us to keep ourselves healthy — the flu is a serious illness. But that’s especially true for those of us who live with chronic pain conditions. And if the yearly flu season weren’t enough, now we have to consider H1N1 as well.

Here are some tips to keep yourself from catching the flu — any variety — this season.

Better Hygiene Practices Can Prevent a Lot of Illnesses

• Wash hands frequently and thoroughly.
• Antibacterial gel — keep it handy at all times.
• Keep cleaning wipes handy for kitchen and bathroom. Wipe down all surfaces you regularly touch.
• Don’t forget to wipe down phones and doorknobs — also computer keyboards, your trackball or mouse, the alarm clock — anything you or your family touch frequently.
• Get a separate toothpaste tube for each person in the house to cut down on germs transferred by touching toothbrush to the tip of the tube.
• Learn to love paper towels. Use them instead of washable towels and sponges.
• Get creative with daily activities. Push elevator buttons with a pen. Turn off the lights with your elbow. Wear gloves when at the ATM or shopping with a credit card or debit card at the grocery store.
• Keep your hands away from your face.

Diet Can Improve Your Immune Function

While there’s no magic food that can prevent the common cold or flu, research does tend to indicate that a healthful diet, combined with some specific foods known to have beneficial health effects can help you increase your immune system’s ability to fight off diseases.

• Yogurt: A recent Swedish study published in Environmental Health showed that probiotic-drink-swilling workers took a third fewer sick days than their colleagues who downed a placebo version. Look for labels that specify Lactobacillus acidophilus, Bifidus and L. rhamnosus.
• Garlic: A key ingredient in garlic — allicin — is a strong antibacterial. Aim for a few cloves added to your food daily.
• Black tea and green tea: If you can handle it, imbibe up to 5 cups each day instead of coffee. A Harvard study showed that doing so increases interferon levels up to 10 times the normal level. Interferon, of course, is a protein that helps protect your body against certain infections, including colds and the flu.
• Mushrooms: These little suckers are powerhouses of immunity-increasing action. Some resources suggest that the shiitake, maitake, and reishi varieties do the most good. The regular white capped button variety will work, too.
• Salmon, mackerel, and other fatty fish contain omega-3 fatty acids, which can help increase your body’s  ability to fight off bacteria and protect against respiratory infections.

Supplement Your Diet Wisely to Fight Off the Flu

Personally, it’s my belief that some folks put way too much faith in supplements. It’s universally considered more beneficial by researchers to get your vitamins and nutrients from food, instead of pills.

Even with Vitamin D, which isn’t easy to get a full dose of with a normal diet, your body can produce what you need with just a few minutes of sunlight daily (without sunscreen, so exercise caution, and if you have or might be susceptible to skin cancers, take a supplement and skip the sun). Each glass of milk contains about 100 IU of D, and the recommended daily allowance (RDA) in the US is 400 IU. Most reliable experts recommend about 1,000; you can take higher levels, but be warned that toxicity kicks in around the 50,000 IU level.

In addition to Vitamin D, you might want to think about upping your intake of the following nutrients and vitamins:

• Omega-3 fatty acids. Purified fish oil capsules with at least 1 g combined of EPA and DHA are best. If you just can’t stand those fatty fish, look for these.
• Cold-fX. Yes, I’m usually skeptical, too, but this one apparently works.
• Zinc, when you have a cold or feel one coming on. Also has some skepticism and mixed results behind it, but worth a try.

Mom Was Right: Get Your Sleep (and Exercise) to Boost Your Immunity

Nobody’s suggesting you take a daily hour-long aerobics class (though, God, I’d really like to be able to do that). But about half an hour of walking a day can have a therapeutic effect on your body’s ability to fight off and decrease stress, which impairs immune function.

Additionally, according to a study published in Medicine & Science in Sports & Exercise, getting moderate, daily exercise can reduce your chances of developing upper-respiratory infections. Just don’t overdo it; extreme exercise apparently weakens your immune response.

Along with that, you might want to consider trying tai chi. According to researchers at Shanghai University of Sport, women between 55 and 65 who engaged in an hour-long tai chi practice session four times a week, their levels of illness-destroying cells increased over 30 percent over a four-month period. Those results were supported by another study at the University of Illinois, which found that people who took up tai chi a week before getting a flu vaccination improved the shot’s efficacy by over 15 percent.

Whatever amount of sleep is right for you (and it varies for all of us), get it every night. Be hard-headed and insist on it. Take this seriously, because healthy, deep, sufficient sleep is critical for chronic pain patients in any event. It will also improve your immune system’s efficacy. A 2009 study published in Archives of Internal Medicine showed up to 300% reduction in risk of contracting rhinovirus for those who slept more than 7 hours regularly.

If You Do Get Sick, Here’s What to Do

If you do get sick, follow Mom’s orders: stay home. Call your doctor, but do not go to work or school. This is how disease spreads! Do your coworkers and yourself a favor — stay home and rest. Drink liquids — water, Gatorade, juices as able (cut them with water if you have a hard time swallowing the full-strength stuff when you’re sick).

And despite the “swine flu” hysteria in the press, don’t freak out. Staying calm can help your body regulate its normal stress levels and improve your ability to stay well over the flu season months. Don’t buy into the hype. Just be smart, and arm yourself with knowledge from trustworthy sources. (Anyone who starts a post or tweet or comment with “my aunt says” or “according to experts” but won’t name those experts? Proceed with caution, people!)

Stay well, and remember to thrive — not just survive!

I love comments. I really do.

But just in the last few days I’ve gotten two really sketchy comments spouting questionable science and unsupported claims, contrary to most accepted and reliable sources.

It didn’t take me long to delete them, but it kind of pisses me off, to be truthful.

The Internet is great for allowing all kinds of viewpoints to be put out there. The problem is that all kinds of viewpoints are out there, and it’s hard for most of us to sort out the quacks from the truth-speakers.  It’s equally hard for a blogger writing about medical issues from the perspective of a patient. I’m keenly aware that what I write might be the basis for someone else’s course of action.

That’s why I will ALWAYS urge readers to talk to their doctors before taking a particular course of action. It’s also why I only use resources I believe to be reputable and reliable in my posts.

And it’s why I’m going to delete comments without any further discussion if those comments make wild, unsupported claims that run completely contrary to what those reliable sources present as a consensus, especially when those comments don’t even provide a single supporting reference.

I’m all for debate and discussion, and if I’ve missed something I truly hope someone will point it out to me. Feel free to submit a comment pointing out a contrary view, or your own experience. But don’t write a comment that flies in the face of the most basic research and expect me to approve it without a single reliable reference or cite.

It’s just not going to happen. This is too important a subject.

My only other “rules” for comments are pretty much based on common sense:

1. No spam.
2. No rudeness, name-calling, defamation, or copyright infringement.
3. Absolutely NO racism, sexism, or any other kind of -ism.
4. And, just because it’s my site and this kind of person really ticks me off, no “naysayers” who think chronic pain is “all in our heads.” Go elsewhere. I’m sure there’s a site out there that will welcome your ignorance. Go find it, with my blessings.

I reserve the right to make more such rules as the need arises, but I hope and believe that won’t be necessary.