Sunday, May 12, 2013

Fun with Fibromyalgia

Evo's Coffee Lounge
12oz Iced Soy Mocha

If I were taking care of my fibromyalgia condition properly, then I would not be drinking a sugary caffeinated beverage right now.  Let this not distract you from all my helpful tips, but let it remind you that it is necessary to tend to your spiritual happiness as you also tend to your physical well-being.


I find myself explaining this stuff a lot, both what fibromyalgia is, and also how I cope with it.  This shall be a lengthy one broken up into Prologue and Practical Fibromyalgia Stuff.  There's some important stuff in each part that relates to each other, good stuff about stress in general, but I put the bolds in if you want to skip a bit.  First, Prologue...

The first thing to know about fibromyalgia is that it is, in fact, real.  Let no one, not even an old and venerable family doctor, tell you that it's all in your head.  I once told my brother when he asked me that question - gently - that I didn't know if it had all started in my head, but it was definitely in my body now, and the trick was figuring out how to get it back up there.  I didn't know that it was fibromyalgia then.  I knew that I had a mysterious and severe allergy that had just preceded this intense and debilitating pain in my back.  My doctor had asked at the onset about other fibromyalgia symptoms but I had dismissed them.  Well, of course, I had pain elsewhere, but I was out of shape and I had always had aches and pains somewhere or other.  And nothing was so bad as that one spot.  So we tested for other conditions, ruled them out, and went with the theory that I was experiencing muscle spasms related to the allergy.  We went through a few kinds of pain killers and I ended up on 400mg of Celebrex every day, as well as 40mg of Zyrtec for the allergy, for the next several years.  Just so I could get through the day.

And you don't need to take my word that fibromyalgia (FS for short) is a legitimate thing just because someone as poor as me isn't going to shell out that amount of money on pills unless I absolutely have to.  There is now demonstrable evidence of FS.  According to the Mayo Clinic (I checked out their FS DVD from the library) MRIs of FS patients show that those patients' brains light up brighter and in different places to the same level of pain stimulus than the control subjects.  I also heard on one of those doctor shows that there are measurable increases in stress hormones in the spinal fluid of FS patients.  The muscles also function differently.  When you curl your arm, for example, as the "inside" muscles contract the "outside" muscles normally relax, and vice versa for the opposite motion.  Not so for FS sufferers.  All the muscles stay tense for both motions.

Practically speaking, though, most doctors are not going to scan your brain to make a diagnosis.  They're going to rely on your reported history, check that you have pain at at least 11 of 18 trigger points throughout your body, and ask about an assortment of side conditions - insomnia (basically standard), depression, IBS, TMJ, hypersensitivity to light or sound, sinus problems, and many more.  About a dozen or so conditions, I think.  And then, they're going to run a bunch of tests for other conditions, like lupus or rheumatoid arthritis, to rule them out.  If those show up negative, your doc may prescribe one of the newer fibromyalgia drugs, and/or any variety of pain killers, and hope you're not an addict.

Here's the next thing to remember about fibromyalgia.  The medical establishment is not sure what or why it is.  They're not even exactly sure how those FS drugs are supposed to work on the condition.  They have some ideas, they've made a lot of progress, found a lot of correlations, but they're still not sure.  The prevailing theory is that the nerves of FS sufferers are overactive (over-reactive, might be a better way to phrase it), for some reason.  There is another theory, though, that the problem is at the receiving end of the signal - in your head.

I read a book in the local author section by a Dr. Dryland (for your reference).  The way he described it, FS is caused by chronic stress - either physical or mental, your brain doesn't differentiate.  What happens is that your brain, responding to a fight or flight situation, will (among other things) pump out a lot of dopamine, which will restrict the amount of signals from your nerve endings that reach your brain.  This way you can ignore your sprained ankle while you run away from the lion that's chasing you.  The problem is that, in our modern society, the lion can be an evil boss or a crazy girlfriend or your checkbook, and you don't have the chance to get away, hide out in a cave, and recover.  You are constantly, for a variety of reasons, in a state of fight-or-flight.  Our bodies were not designed for this.

National Geographic put out a great documentary on stress - I highly recommend you Netflix it.  It describes a multitude of ways in which chronic stress damages our health, mentally and physically.  Dryland asserts that, for FS patients, the ability of the body to make dopamine is essentially worn out so that, as the stress continues, the brain can no longer filter out all the stimulus coming to it.  Think of it as having your amp dialed up to 11 all the time.  So, then, what used to be uncomfortable and could be ignored now hurts, and your body responds to protect you from this obvious injury.  Your body tenses up around the "injury" to protect it as it heals, and because you don't have adequate opportunity to recover, the protective tension becomes a persistent pain of its own.  And your body responds... and you can see how this perpetuates the problem.

This theory of FS as a stress-based condition fits best with my own experiences with fibromyalgia.  I should also be clear, both theories recognize that there is a stress connection with FS.  In all the literature I've read on it, it is noted that there is almost always a stress trigger that kicks off the onset of fibromyalgia.  And that trigger could be a bad break-up (as was in the mix in my case) or a localized physical injury that persists until you no longer just hurt in your right knee, but now ache everywhere. 

There is also likely to be some underlying stress that has been weakening your system until that one big stress comes along and kicks it off.  In fact, they found such a high correlation between fibromyalgia and early childhood trauma that some people assumed that anyone who had FS had been abused as a child.  That's an unfortunate stigma that is still being shaken off.  But any kind of PTSD could do it.  I've speculated that, because of the prevalence of PTSD among our veterans, fibromyalgia could be rampant and going unrecognized or undiagnosed.  It's in the nature of a soldier to ignore pain, after all.

The good news, though, is that whether the cause is in the sender (the nerves) or the receiver (the brain), there is a lot that can be done to reduce the pain FS sufferers experience without the drugs.  So, here's the practical stuff I've picked up over the years...

Practical Stress Reduction Tips for Sufferers...
(add a chocolate muffin to that list of what I'm not supposed to be doing... it's hot, it was looking on the verge of being all melty...)

1.  SLEEP!  You knew it was going to be the top of the list.  It is the hardest and the most important piece of your pain puzzle.  I was told by one of my physical therapists that six hours of good sleep is the absolute minimum your body needs to do its everyday repair work.  Six goooood hours.  If you have the insurance or the credit line to cover it, I highly recommend doing a sleep study.  You may be getting more than six hours now (and your body might naturally want more than that for optimum function) but if you don't feel rested and refreshed and less achy when you get up, then there is probably some kind of undiagnosed sleep problem that is keeping your body from getting that deep sleep it needs to do that vital repair work.

2.  Exercise.  This is also vital and very, very difficult.  From what I've read, there is little to no damage to the actual muscles of an FS sufferer beyond the regular damage of under-use.  (You know, even "FS sufferer" is kind of cumbersome, so I think I'm going to start using "fibromyalgier" if you don't mind...  You don't?  Why, thank you!)  The important thing to remember is to start extremely slow and gentle.  But persistently.  There are days I think I can do a mile or two, no problem, but end up knowing I've gone too far less than halfway out.  And once I've hurt myself by overdoing it, it takes me much, much longer to recover.  A simple knot in my calf can last weeks or longer, while the average person could work it out in a few days.  So, just start with five minutes of walking every day.  Then go up a minute each successive day.  The main issue is consistency. 

It's also worth the money to see a physical therapist, even if you can only do an initial consultation, because you've probably developed problems you are unaware of just by trying to compensate for the pain.  It's also very common to have your pain shift around as you start working out one place or other.  So, if you can't get regular visits, see if you can call in once in a while as things come up, and schedule a follow-up or two after several weeks so that you can adapt your exercises to your evolving needs.

Here's another side-note for those of you fibromyalgiers with hyper-mobile joints (i.e., the double-jointed)...  There is a high correlation between FS and hypermobility, possibly because you may not realize that you are extra-stretchy all throughout your body and it is very easy to over-stretch your muscles simply because your ligaments will allow you to go farther than your muscles ought to.  Think of it like having porcelain muscles and rag-doll joints. This makes a physical therapy plan extra important for you because you need more stability for your skeleton and are more likely to have your body over-correct itself as you begin P.T.  (This problem is compounded when/if you get pregnant because your body releases a hormone to make your ligaments extra stretchier, fyi).

Oh, and exercise helps reduce your stress, boosts your mood, and helps you sleep.

3.  Shrink your head...  Or get someone to do it for you.  Chances are there's some kind of unresolved something going on that needs to be properly addressed.  Sometimes you just weren't screwed up enough to warrant professional help so you missed out on all these wonderful coping techniques that we "special" people got to be introduced to.  In either case, it probably couldn't hurt to talk to someone (a little, or a lot), either to process some long over-due baggage, or just to get some good stress management tips.

4.  Diet.  A well-balanced diet is duh important for overall body function, helps your mood, and helps you sleep.  But two more important things.  First, chronic stress has damaged your gut.  There was a study with rats that showed that even low levels of constant stress, but especially severe acute stress, will erode the lining of your intestines.  This whacks you out in ways I can't even begin to describe.  The important take-away is that it screws up how you process and produce stress hormones, which you can see is counter-productive for your goal of stress reduction.  It's also probably causing a multitude of those uncomfortable secondary conditions, like IBS and lactose intolerance, and in my case, an allergic reaction to lactose intolerance.  So in addition to not stressing out your system anymore with crap food, you should look into "reseeding" the good flora in your gut.  I started with simple acidophilus pills and I was able to reverse my allergic reaction.  I am no longer head to toe hives all day, every day, though I still take a couple dairy pills if I'm eating ice cream.  If I were in optimum health, perhaps I wouldn't need that.

The second dietary note is that certain foods are going to make your pain worse simply because they have an inherent inflammatory effect.  Sugar (whole natural sugars, like in fruit, are fine), caffeine, excite those nerve endings in anybody, but it's like pouring lemon juice on a paper cut if you have FS.  Also, dairy and gluten (mostly from our modern, hybridized, processed wheat), are stressful to your gut, so you should try to avoid and minimize them, particularly in a single sitting.

Be careful with your milk alternatives, though.  There are a lot of genetically modified (and unlabeled) ingredients and additives and artificial sweeteners (carrageenan was thought to be the new wonder alternative so it's in everything, but it's looking like it's not so great, either... better than flippin' aspertame, though).  Also, there are now warnings against giving a lot of soy milk to young kids, especially boys, because it appears to be interfering with hormone function.  Or something.  Anyway, you generally don't have to avoid anything like the plague, just minimize and diversify.  Look up diets that are specifically anti-inflammatory.  And go as organic as you can afford.  Our doc stresses organic for the animal-based foods, and for those top most contaminated fruits and veggies, like apples, strawberries, and spinach.

I gave up sugar while working in a chocolate shop.  It can be done, and the results were dramatic.  I had been going through a period of severe stress and I had been taking more and more pain killers than was recommended as my pain increased.  I was relying on 9 (or more) naproxen sodium (Aleve) every day.  Yes, it was that bad.  The maximum dose is supposed to be 3.  And it wasn't enough to knock it out.  But at the same time I reached a kind of resolution to my major stressor, I cut out the sugar (quality checking the sample tray), and in less than a month I was down to two or three naproxen a day.  And then I pregnant, but that's a whole other chapter in the fibromyalgia fun-book.

5.  Magnesium and other pills.  It's worth checking your vitamin and mineral levels, if possible, as part of your diagnostic process, to see if there are any deficiencies.  And while I didn't turn up a deficiency in magnesium, I did find it very beneficial to take it as a supplement anyway.  It is very popular among fibromyalgiers because it is a natural relaxant, so it helps with the pain and with your sleep.  However, even with supplements, you should be consulting your doctor, or other knowledgeable practitioner (pharmacist, nutritionist).  Even these natural supplements can interact with other medications and with each other.  For example, calcium and magnesium kind of work against each other (calcium helps your muscles contract, as magnesium helps them relax), and vitamin D helps you process and produce calcium.  All this was tricky for me to figure out, and it took a lot of trial and error and self-awareness to find where I need to be.  I found that I needed to take at least double the magnesium as calcium, and that amount changed when I added the D (which I am deficient in).  Most FS books I've read recommend starting with 300mg of magnesium, and adjusting from there as needed.

Other supplements I take for the pain include vitamin E, fish oil, and turmeric (anti-inflammatory) if I have the money and can get the brand I like.  That last one has been inconsistent for me and I have found the benefit mostly in the higher dose and mostly a particular brand that included ginger, which may have affected its overall effectiveness.  For me, at least.  The bottom line is I can't afford to spend money on anything that isn't doing what it needs to do, and I drop things and reintroduce them periodically to make sure they are worth the cost and effort.

For mood, I take a B-complex, as well as a kind of methylfolate thingy (through my doctor's office, related to another deficiency they tested me for), and taurine (an amino acid), which hugely helped me transition off Zoloft many years ago.

I take a few other things - Vitamin C is a great booster for just about everything - but those are the core supplements that help for me.  Oh, and I take some melatonin and (generic) Tylenol PM to help me sleep.

It's also important to focus on getting as much of these things naturally through your food, and to adjust your supplementing accordingly.  This is what I suck at the most, but try to keep it in mind anyway.

6.  Drugs.  At some point, the pain needs to stop.  You need that interruption for long enough to break the pain cycle and allow the healing process to begin.  I can't tell you if any of the FS drugs are effective because I never took them.  The important thing is that you try to focus on pain killers as a temporary intervention, but take what you need (don't exceed the recommended dosage) when you need to take it.

... So that's what works for me.  When I'm good and do all that...  I'm happy to get even more specific for anyone that would like to know more... like exact doses of pills, different exercises I've done, or how I had my second baby with no drugs... during the labor anyway...  first question afterwards was, "can I have drugs now?"...  For anyone else, though, I'm sure this is more than enough for now. 

Fun times!


  1. This is a very interesting and informative post, Chandra. (Happy Mother's Day, by the way!) I have been working on my own post about depression (so many of them going around lately that I have been inspired) and PTSD. I, too, suffer from a lot of pain throughout my body, but I've been given reasons for them. Carpal Tunnel in my hands/wrists, joint pain in my elbows that hasn't been diagnosed, yet - because I ran out of insurance, I have a bone spur on my spine and disc degenerative disease (missing the disc in my lowest vertebrae). I get really sore hips when I walk a lot or have sex and my feet hurt constantly because they are a size 6.5 and I weight over 200 lbs. I know (At least I hope) a lot of the pain will subside once I get this weight off and build more muscle, but sometimes I'm laying there and I just wish I could take an ice bath because it feels as if my whole body is just... inflamed. Sometimes even my skin hurts - I'll get this sudden burning feeling usually on the skin by my breasts and shoulders. I am feeling better physically since I've been eating better and working out - my IBS is more under control (Unless I eat a lot of dairy or something spicy) but I haven't been able to sleep without an aid in so long I can't remember the last time I was able. I would love to do a sleep study (also because I have to write about one in the book I'm writing), but don't know how much it would cost. I should look into it. If I don't take a Benedryl or an Atavan to sleep I don't know how long I'd be up before I just passed out.

    Anyways, I hate taking pills - already take a ton of vitamins and Simvistatin for high cholesterol and just recently (because my chiropractor scared the hell out of me) I have gone down from taking 1600 mg of Iburprophen a day to 400 and combined with ice packs, the pain is usually bearable unless I've hurt myself working out or walked too far or had too much sex. Also if I lay in bed too long my back is totally screwed for days. Does that happen to you?

    1. Yep. Not exactly all of that, and it's not that severe for me at the moment, but all the stuff you described is totally consistent with fibromyalgia symptoms. I had also forgotten about the itchies. I would get them just under the bra line and a bit on the sternum sometimes. Thy would ring my whole rib cage. It felt like I was going to break out in hives there, but it only gets itchy. It feels like when your have a bad flu and have that weird joint ache feeling. Generally, I don't get that skin sensation anymore unless I'm close to breaking out all over, which only happens when I'm not good about the dairy or I there's some other severe stressor, and often when it's hot and I'm not getting properly hydrated and can't cool down.

      That's another interesting side note since the beginning of my allergy/FS symptoms followed a day of prolonged intensely hot exposure to direct sun (it was plus or minus 105 degrees). Could be related in an indirect way... like it's not the exact temperature itself, but a dysfunction of my internal cooling systems, or something. There's something often referred to as the "fibro flush" that's some kind of rosacea or flushing of the face, etc, that fibromyalgiers sometimes suffer from... I think these things might be related, too. I can say definitively that I do better, in general, now that I've left SoCal. The heat really did take a lot more out of me than I appreciated until I left the area. It sounds like you might need to pay special attention to both fully hydrating and fully cooling down. My dad recommended picking up Penta water, which is supposed to penetrate into your tissue better. He said for me to drink two bottles because the first one would be sucked up just to saturate the tissue. I think I do notice the effect he described, but it's a bit pricey for me to do regularly. Other than that, maybe focus on more or longer cool down showers after you work out or just feel extra down-to-the-bone hot. And, if you can stand it, maybe an ice bath would be a good thing for you. Athletes do it. But for me, I'd end up being all clenched up and shivery, both of which would cause me more pain.

      Another side note that I forgot to mention from that Dryland book is that he believes that Restless Leg Syndrome may also be a form of FS, that it's an over-sensitivity to nerve stimulus. Just, fyi, if you find it relevant.

      For sleep, I use a 3mg TIME-RELEASE melatonin with my Tylenol PM. That works pretty well for me if I let it. For example, if I put myself in bed instead of staying on the couch typing at nearly one in the morning. A sleep study institute up here charges something like a grand, I think, though I've heard something about do-it-yourself gadgets you can order online. Worth looking into.

      As for the cholesterol stuff, I have no idea about how it might interact with other stuff. I will say two things, though. First, according to that NatGeo documentary I mentioned, chronic stress can lead directly to plaque build-up in the arteries. Second, you may be due for a pill regimen review. It sounds like you've got a lot of drowsifying stuff going on, and that can easily screw up your sleep and actually cause/worsen depression. I remember one time when I stopped taking everything I felt like I had finally woken up. I felt the mental weight of the pills I had been taking. I still had to reintroduce pills, but not all, and not at such high doses.

    2. ...the rest of my reply...

      As for the weight thing, those who are obese are much more likely to suffer from sleep apnea and joint pain and all kinds of other things. But try not to put too much on the numbers. The most important thing is the doing. Though you're heavier than I am at the moment, you are far more active than I am, and thus, in many ways, much healthier than I am. Especially, heart-wise. You just have to find the right exercises and fill in all the other blanks around what's working and what's not and how to do it all without hurting yourself. (I also get that same hip thing and I've thrown my back out by waking up. I have to do a variety of leg/pelvis/back stretches if I want to keep that from happening, and that includes even lower legs and parts to don't seem related. If you don't have a physical therapist, try looking up stretches online that cover legs generally, and that try to correct "sway back"... that should put you in the right area).

      And finally! Get Evan to give you a head to toe "once over" every day. Just a light rubbing to get your circulation going and remind your muscles to relax. Drink plenty of water afterwards, though, to help flush out any toxins that are pushed into the flow.

      That's it! I'm out! Good luck!

  2. Wow. That was all very informative. And the itches?! Ugh. I itch all the time and just assume it's nerves or allergies - I usually take an Atavan or a Benedryl depending on what I feel it's coming from but yeah I'm sick of all the pills. I take allergy pills and vitamins and cholesterol medication and stuff for anxiety and stuff to prevent these chronic yeast infection symptoms I keep getting even though I have absolutely no infection (been to the gyno four times the past year and they're like "I dunno").
    I also get flushed in the face all the time for no reason.

    I do regular stretches and ice pack every day and that really makes a difference with the back pain, but sometimes if I sleep in just an hour too much or I lift my leg too high or whatever - I'm done for. Evan is really good about giving me massages when I need them - he has severe neck pain so I do him, too. Mostly I have him rub my feet because they get swollen and feel like the circulation isn't too great. It usually puts me to sleep. I love it. :-)