In the last two weeks, I’ve had more success in routing out health issues and making some progress. Here’s how I’m summarizing November’s lesson of the month: finding the right doctor makes every bit of difference.

Go figure.

As simplistic as it sounds, it’s true. I’ve always been a chronic insomniac, a detail which no doctor before now ever bothered to address with anything except a prescription. I have little experience with science or medicine. Therefore, when something is wrong with my system, I don’t know what answers to seek or even where to find them. This is why we employ doctors, to help us determine what’s wrong with our bodies. Don’t get me wrong, when a person can’t sleep, medications are a viable answer. But, is it right or even ethical for a doctor to just assume the cause and not look any deeper?

This month, I was sent to a specialist to be tested for sleep apnea. My appointment was at the beginning of last week and they sent me home with a monitor to check my blood-oxygen levels while sleeping. I haven’t heard the outcome, but during the appointment and ensuing exam, I learned that my nasal passages are gradually closing; the turbinates in my nose fill with fluid and swell, especially when I lay down, and cut off the airway.

Oh yes, it has its own fancy technical tag. Unfortunately, I didn’t write down the name and promptly forgot it. Basically, it’s non-allergy related nasal inflammation (I did write that down!) which has constricted the nasal airways by 50%, possibly more when I’m trying to sleep.

Doesn’t sound like it has much to do with Fibromyalgia or Chronic Fatigue, does it? The allergist, Dr. Z, said it doesn’t, but it may have a lot to do with the constant headaches.

I had no idea I couldn’t breathe properly through my nose and had the sniff-test not demonstrated the before and after, I wouldn’t have been any the wiser. The headache I’ve been living with for the last 12 years, the one that often makes me wonder if sky-diving without a parachute would be less painful, has gone from the roar of a lion to the chorus of three alley cats. The severity has certainly waxed and waned over the last ten days, but I can tell the difference, and it’s a vast improvement.

The point is … if you suffer from Fibromyalgia and are exploring either of these as an option try them. And, (my personal opinion) give them a fair two- to three-week trial — allergic reactions or harsh side effects not withstanding. Some of my fibro buds are doing well on one or the other, and some are taking both with useful, positive responses. While researching what you’re putting into your body is certainly a fantastic idea, it’s only one step in the process. Science is not exact. Yes, this subjects you to some level of guess work and turns you into a giant, pants-wearing guinea pig, but you need to find a treatment that suits you. If you don’t explore all of your options, how can you honestly judge what does or doesn’t work for you?

Rapid weight gain is a side effect of Lyrica. Just as nausea (both side effects I suffered, respectively) is for Cymbalta. But these are only possibilities, not absolutes and one cannot tell how one will respond by reading input from others alone. You should let your doctor know if you are sensitive to certain medications and be open to suggestions. However, if that openness seems one-sided, it might be time to seek a new doctor.

From the Lyrica website:

How LYRICA Is Thought to Work

Although the exact mechanism of action is unknown, results from animal studies suggest that LYRICA reduces the number of electrical signals that the brain cells send to each other. This could reduce the amount of pain you feel from fibromyalgia.

Reading this when I was first introduced to Lyrica didn’t instill a lot of confidence: Hmm, you’ve no idea how this works and, well, the only talking animals I know of belong to Disney. Not batting a thousand here.

Well, OK, so I was also skeptical about Topamax when Dr. Bivins suggested it in 2006. Although marketed as an anticonvulsant (like Lyrica) and migraine prevention medication, Topamax is also used off-label to control neuropathic pain (like Lyrica). Unlike the Lyrica, however, Topamax did significantly reduce the peripheral neuropathy I experienced in my hands and feet (currently I take Neurontin with some success).

The bad news is that both Lyrica and Topamax require the birthing and subsequent selling of your offspring in order to afford taking them. It’s the unfortunate side affect of medicine in a free society. If there is a demand and only one supplier, well … let’s just say you won’t even get a kiss. A one-month supply of Topamax in 2006 (200 mg a day) was close to $600. From what I hear, Lyrica isn’t too far behind that number today. Generics aren’t available, although I’ve heard the exclusivity patent for Topamax did expire this past summer. Generics are good for the wallet; always check to see if they’re available.

Cymbalta is an SNRI (Serotonin-norepinephrine reuptake inhibitor). It acts on two neurotransmitters: serotonin and norepinephrine. In the late 90s and early 2Ks I was told repeatedly that my only problem — despite having been diagnosed with CFS and then FMS — was that I was depressed. So to prove or disprove this theory I agreed to taking Prozac (a selective serotonin reuptake inhibitor), the fad drug of the day. That trial lasted less than two weeks; I couldn’t function. I was then prescribed Celexa (also an SSRI) and agreed to take it for three months.

My symptoms persisted and within three days, I felt no emotion, none, but the doctor told me this was unlikely. As a result of the Celexa, though, I lost all motivation and became rather versed in the art of vacant wall-staring. It was impossible to express myself in terms of pain (emotional or physical), exhaustion, or other problems I was having (insomnia, vertigo, IBS, etc.). Internally, I felt worse than ever. My ability to resist pain evaporated. I was an insect trapped inside a glass — the world beyond grew muted and fuzzy and no one heard me screaming inside to get out. I survived each day on mechanics alone, my body following the pre-programmed script it knew: put food in mouth, chew, swallow, get into shower, drive to work, answer the phone, etc.

It interrupted my conscience, too. So much so, that had I hit someone while driving, I believe I wouldn’t have been able to feel any guilt or remorse. In fact, it’s possible I would’ve just sat there and stared. When I explained all of this to the doctor, he responded that these observations were also highly unlikely. There were dosage increases and decreases, but with time, it became evident that SSRIs were not the answer for me. I tapered off and sought other options … including a new doctor.

My recent three week trial with Cymbalta netted very much the same results. I opposed it from the onset, but as a sign of good faith with the new nurse practitioner, I gave it a try. Within a week, I felt no drive, no creativity. I worked a little on pre-planned projects-in-progress, but I spent most of the time struggling just to stay off the couch or out of bed. There came that same sensation of being trapped behind glass, knowing what I’m supposed to feel and yet not feeling it. Regular symptoms grew more intense because, again, that self-taught resistance we develop to avert as much discomfort as possible had been disrupted. From this experience I concluded that, despite the claims, Cymbalta does not physically reduce pain. It reduces the ability to RESPOND to pain.

I can’t claim to know this from a scientific or medical understanding. I can, however, claim to know it from the viewpoint of a giant, pants-wearing guinea pig. I understand well enough to know that when I took Wellbutrin (for depression) in 2000 – 2001, for well over six months, I did so without issue. Like Cymbalta, Wellbutrin acts on norepinephrine, inhibiting its reuptake (reabsorption by the nerves releasing it so that it’s available to other nerves receiving it). Norepinephrine also acts as a stress hormone and is secreted during stressful events. Its effects are similar to adrenalin (increased heart rate, blood flow, etc.) but unlike adrenalin, it’s also psychoactive (affects mood and mental processes).

Along with norepinephrine, Wellbutrin acts on dopamine, raising the levels of both neurotransmitters in the brain. I can recall that as an antidepressant, Wellbutrin elevated my mood successfully without wiping out my entire spectrum of emotions. It made it easier to deal with the array of negative emotions that accompany a diagnosis such as Chronic Fatigue or Fibromyalgia. In this way, I considered it unintrusive, but having to evaluate dopamine combined with the norepinephrine, I can’t say that either had much impact on the amount or duration of pain I experienced. The same applies to Cymbalta.

I have friends who tolerate SSRIs just fine, who claim the worst of its side effects makes them feel mildly dopey, spacey, or a bit numb-n-dumb. Which leaves me believing that it all really depends on how your system responds. It’s been a difficult lesson for me, but I think the key lies in self-awareness and acting as your own advocate. Everyone and their brothers, uncles, aunts, nannies, nurses, dogs, cats, and stoats has an opinion about what you’re feeling, what’s wrong with you, and what you should do about it. They get caught up in these notions and fail to stop and listen. Sometimes, they can forget you know how to think for yourself. Sometimes YOU (yeah, you know who I’m talking about) forget you can think for yourself.

And you can.

Write it down. Track everything. Not just what you’re taking or when. How much. How long. Whether you think it’s having a positive or negative effect on your symptoms or your general health. Why do you think it’s helping (or not)? How do you think it’s helping (or not)?

If your doctor thinks he or she is the Last Bastion of Medical Science whose word should be gospel, find someone new. To date, I think I’ve been through 22 doctors (tally includes nurse practitioners) since 1996 and only four of them have made any effort to work with me. One moved on to cardiac surgery and two ceased practicing. Always disheartening — having to iterate through a dozen new doctors. The jury is still out on Number Four, but the best observation I can make about these particular practitioners is that my experiences with each one has resulted in progress and returned some positive result.

Remember this: the quality of your life counts, too.

I haven’t had any adverse side effects on Provigil, and although I can tell it’s in my system, it’s not uncomfortably intrusive. My appetite has changed, but is neither eradicated nor amplified out of control. Provigil does make me a bit … hmmm … happyhappyHAPPY (!!) when it first kicks in, but this seems more a psychological reaction than it does physical; I don’t feel amped out of my skull on amphetamines and driven by that mustmustMUSTcleaneverynookinthehouse compulsion. I do exercise caution in that first hour. I’m not too keen on post-exertional malaise sneaking up and catching me unaware. Awareness is the Fibromite’s best friend.

As of yet, I haven’t been able to find any research on whether or not Provigil causes serious long-term damage, and I will continue searching, but I’m not giving up this medication without a fight. I still slog — it’s NOT a magic bullet — but I don’t feel as if I’m trudging uphill everysingleday and getting nowhere. On Sunday, I even challenged Jon to a game of Scrabble — got my tush handed to me (on the fancy china, no less!) — and never once felt lost or befuddled.

It’s nice, the possibility of thinking and writing from a clear mind again, or the ability to read more than a book a month (not counting craft and hobby books, which fall under “picture books”). Maybe I won’t have to keep notes about the notes I keep. :)

It’s nice, this not having to pretend I’m hopeful.

A caution if you’re considering taking Provigil: it’s not FDA approved for Chronic Fatigue or Fibromyalgia and your insurance company may refuse to pay for it. It’s expensive ($75 or more a month; I take 100 mg daily), but not ridiculous (like Lyrica), and — my opinion only — is more effective at what it does. FDA approval could be a curse, driving the cost up (as was the case with Lyrica) and rendering it inaccessible to almost everyone who might need it. Next, Provigil doesn’t reduce pain. However, I find not having to constantly resist the accumulation of pain and fatigue makes a difference in how I perceive pain.

On some days, it’s enough.

Today marks my fifth day on Provigil and I’m unsure how to detail the difference this medication is making. I’ve had opportunity now to step back and make observations about my condition which went wholly unrecognized before. Although it hasn’t eradicated any one symptom, so far, it’s one of the most useful medications I’ve tried. It pushes back the fibrofog and helps to clear my head … so much so that I can complete simple tasks in under four steps where, historically, it could take as many as seven trips to remember that I’ve gone upstairs to retrieve a load of dirty laundry.

Provigil has also had an impact on the deep fatigue I’ve been combating since last April. As it is with pain, though, there are also layers to fatigue. While the Provigil seems decent at battling fatigue mentally (i.e. it’s definitely mood enhancing) it’s only moderately effective at the physical level. Still good. Still a turn for the positive, no doubt. But, thankfully I’ve grown more cautious over the last eight or so years, and (mostly) avoid taking advantage of feeling better — I am still quite susceptible to Crash & Burn, and hitting the wall at full speed sucks.

Yesterday, I was out and about for 4+ hours and whenever I parked, I did so in the farthest corner of the parking lot and then walked briskly on my way into the store. I did this a total of four times and felt it when I got home (both, an increase in pain and a decrease in energy). Today, also, I feel worn out despite taking the Provigil. I’m grateful I didn’t jump head-long back into jogging or kick-boxing just yet regardless of the giddy notion that maybe … possibly I can.

As a teenager, after damaging my knee, I discovered if I (specifically) didn’t exercise regularly, I couldn’t maintain my weight. To lose extra pounds, I had to burn as many calories in a day as I consumed. Which, under ideal circumstances, wasn’t difficult; with only one’s feet or a horse to travel upon, the desert is a mighty big place to traverse. As my knee problems worsened progressively, weight management became increasingly harder. Then came knee surgery and that blessed period between December of 1993 and December 1995 — two wonderful, pain free (the occasional headache not withstanding) years. I ran (not jogged) 2.5 miles or walked 5 (at 4 mph) six days a week, did 300 sit-ups and 100 push-ups a day, lifted weights for a half hour to an hour and ate anything under the sun. My favorite treat (once or twice a month) was a PJ’s patty melt on sourdough with a side of French fries and honey mustard, which ONLY Dave G. could make with any type of precision.

It ended so abruptly, that short span of time.

Although I’ve managed to sheer off 35 lbs. since September of 2003, it has been a never ending struggle. Aside from the limitations on my ability to exercise with any regularity, I haven’t been able to figure out why it’s so difficult to manage my weight. Truthfully, I don’t always make the healthiest choices when I eat; we did frequent ColdStone Creamery regularly (at least once a week!) the summer of 2006. But, I don’t binge and I’m only prone to comfort eating when hit with a particularly difficult bout of PMS. Most days I do eat well-rounded meals, although I’m sure I must consume more calories than I can burn in a day. Which in turn means if I eat more than 1,600 calories, I gain.

I started gaining weight again in June, going from 189 back up to bounce between 196 and 197. Why?

Granted, with both Jon’s and my birthday in May, it can be a hard month to moderate eating. Especially if you load into the equation the understanding that I married a man who can bake like the world could end tomorrow and knows my weakness for chocolate. Even so, I’d managed the prior two years with minimal or no weight gain, thus this year shouldn’t be any different. It is, though, and significantly so.

Wikipedia’s article on Provigil (Modafinil) cites five studies showing that it decreases the appetite. While not a scientist or a doctor, I have discovered its secret. Want to know it, too? Come closer then. A little closer. There. It works because FATIGUE INCREASES THE APPETITE.

Brilliant, no? Really, I feel so clever right now — oh, I think I must have turned rocket scientist overnight!

Okay, so sarcasm aside, it’s a legitimate observation and one leading to a better understanding of what’s happening inside my skin. Two years ago, when I took Topamax, it all but eradicated my appetite and I lost 10 lbs. because of it. Sadly, I switched to Lyrica and within 2 weeks had gained it all back, plus another 5 — sigh. Lyrica drove me to eat — an uncontrollable compulsion that had NOTHING to do with appetite. Ever seen how and what goats will eat? Yeah, that was me. Nothing was sacred.

Provigil isn’t at all the same experience as Topamax. Like I said, the latter really did kill my appetite. Provigil hasn’t; I still get hungry. The difference I’ve noticed now since Thursday is that I’m not desperately trying to eat to compensate for the constant lack of energy. It’s such an elementary concept … why the heck didn’t I see it before? I mean, after all, where does the body get its energy? From food. DUH!

In two days, the ravenous cravings I had for carbohydrates dropped significantly. I’ve blamed these hyper cravings on Jon’s lifestyle because his diet is so centered on carbohydrates, and prior to moving to Virginia, mine focused more on protein. Since I’ve been here, I’ve adopted more of his eating lifestyle, giving the excuse that trying to cook to satisfy both of our needs is just too much effort. Well, I’m thinking of ways I can incorporate more protein into my diet without having to change his at all. The only meal we really share during the day is dinner, and there are simple ways to augment what I eat by reducing carb-heavier foods (rice, bread, and pasta) and adding cottage cheese, nuts, cheese, or even eggs. I will be working protein into my diet three times a day now and reducing carbohydrates to see if it will make a difference, both in my weight and my energy. We’ll see.

What’s even better? Last night, for the first time in I-can’t-remember-how-long, I didn’t go to bed in abject misery or wake up feeling like the victim of a felony hit-and-run. The visit with my mother-in-law on Friday and Saturday should have left me crippled and planted on the couch for the rest of the week. Sunday, it did; I spent most of the day in bed either snuggled up with my husband or fast asleep. I had all the typical layers of difficulty: post-exertional malaise (which seems more a symptom of CFS than it does FMS), stiff muscles, fever-like aches and pains, dry eyes, headache, etc. On days like Sunday, there is no lying to myself, no pretending there is nothing wrong, and no way to simply stubborn myself through another day. I did, however, have something to look forward to: my three-week trial with Cymbalta was coming to a close.

I awoke Monday cranky and sore, grousing at my husband, and really didn’t want to get out of bed. I had a follow up appointment, though, with the new nurse practitioner Dr. McV (my psychologist) hooked me up with in early October. Our initial visit was on the 6th and my reaction was typical: she’s not going to listen, she won’t help, I don’t like her. Etc. Of course, anyone wanting to put me on medication (Cymbalta, an SNRI as opposed to an SSRI, but still just as bad) which turns me into a zombie is automatically classified as ENEMY. Even though I already had experience with SSRIs, I took the low dose (30 mg a day) of Cymbalta for three weeks (despite bouts of nausea), a fair amount of time to determine if it would really help, and tried not to be negative about this new experiment. I hated it every bit as much as I hated my week on Prozac, or the three months I spent on Celexa, and was more than ready for this particular trial to be DONE.

I dragged Jon (he’ll say it’s not true, that he walked) into yesterday’s appointment. He’s been so wonderful over these last 5 months that I’ve been seeking a new GP. He’s supportive in ways no one else in my life has ever been (Laurel and Yana excepted). He doesn’t tuck tail and run at the first sign of difficulty and he’s an honest advocate (he was warned, however, that being overly optimistic in the presence of a doctor could doom me to Hell). He’s my security blanket, my protector and in many ways, my shield, but he’s also becoming the most adept, the one with the finesse it takes to tell me to shut my cake-hole when I escalate to fight-or-flight and need to return to Earth, stop, and quietly listen.

You can understand why he’s easy to love, yes? Well, day-by-day, it grows easier to be loved by him, too.

The nurse practitioner surprised me yesterday morning. She didn’t try forcing me to continue taking Cymbalta. We abandoned it — just like that — and in such a way that if she ever says, “I think you’re depressed and need to try taking X for a while,” I will consider it with an open mind (especially if X = something I’ve already used successfully). She went on to discuss further options, not only medications to try or change, but also tests to rule out other problems or overcome symptoms. She ordered blood tests to check my vitamin B and D levels. She also said maybe it was time for a sleep study, an observation made in Dr. Clary’s office, but one they failed to pursue because they got so hung up on my problems being tied to my thyroid. Dr. Z’s office called me this morning; I have an appointment for the 19th. Maybe now, someone will tell me why it is I often have trouble sleeping.

Then NP. W surprised me even further when she said she’d write me a prescription for a small amount of Percocet. At our initial meeting, the first assertion she made was that she wouldn’t hand out schedule II prescriptions. I understand this, but mine is also a difficult case. I don’t tolerate many pain medications. Anything codeine-based (including cough medicine) makes me vomit. Vicoden/hydrocodone makes me horribly moody (like stab the nearest person with an icepick while sobbing uncontrollably moody), and Lord have mercy on your soul if you’re in the same county with me when I wake up from anesthesia, twilight sleep or otherwise.

I’d assert that most doctors don’t like handing out schedule II prescription pain killers. Considering the amount of people who abuse them, and the fact that doctors, not the actual perpetrators, are held accountable, I can’t blame them for their fear. However, the preponderance of medical personnel who still feel Chronic Fatigue Syndrome and Fibromyalgia are NOT legitimate conditions, leaves a lot of truly miserable people suffering in the lurch. Worse, it gives greedy little drug companies too much leverage. When I took Lyrica, it was $100 for a 30 day supply; now that it’s FDA approved for Fibromyalgia, it’s $500 a pop and most insurance companies won’t cover it.

Historically, I’ve taken Percocet without any side effects or bad reactions. It, Demerol, and morphine (to some extent, anyhow; morphine still makes me vomit sometimes) work well with my system. I’ve no idea why oxycodone is successful whereas hydrocodone isn’t. I’m just not a chemist. Unfortunately, late in 2000, I made the mistake of disagreeing with a doctor about whether or not I’d start weekly methadone treatments for FMS, and to punish me, he refused to refill my prescription for Percocet. Without it, my only bailout from breakthrough pain was a trip to the emergency room for morphine and toradol cocktails — quite effective, but also expensive and rather inconvenient.

I’ve taken Darvocet off and on as needed for roughly 11 years. My body seems to do better with some drugs combined with acetaminophen (i.e. Tylenol and Excedrin), but not acetaminophen alone. I’m cautious about how I consume them, not only because of possible dependency, but also liver toxicity. Unfortunately, as far as opioids go, Darvocet isn’t much more effective than OTC Tylenol. I would posit, though, that a single dose of Darvocet N100 (100 mg propoxyphene napsylate and 650 mg acetaminophen) is as effective as a single dose (1,000 mg acetaminophen) of Tylenol. But, being the hoarder I am, I’ve held onto the Darvocet; after all, a 25% reduction in pain is a heck of a lot better than NONE. Darvocet can also be effective in preemptively controlling pain; taken at the onset of a busy day, I might be lucky enough to avoid breakthrough pain altogether.

I took a Percocet (7.5 mg oxycodone and 500 mg acetomeniphen) yesterday afternoon, around 4:30 p.m. and by the time Jon got home, I was at an 85% reduction in pain. For me, that is such a drastic difference and even more stunning than I remember from so long ago. The one drawback is that it does make me fuzzy around the edges. I think it’s smart to avoid driving, if at all possible, and I certainly wouldn’t operate heavy equipment (hmm, wonder if that can include the washer and dryer).

Although I’ve read reports that the effects of Percocet wear off rapidly, this isn’t my experience. I did notice around 9:30 p.m. that the initial effects were going away, but the severity of how I felt that morning and Sunday was nowhere near the same. Which leads me to wonder, can effectively breaking chronic, cyclical pain, even if only for a short time, reduce the propensity for said pain to return to its viscious cycle? Not a doctor, so I can’t really say. I do know I felt really, really WELL last night, even giddy, when we went to bed. I didn’t want to stop feeling like that today, when the pain started to creep back in around noon, but it hasn’t climbed to horrific heights yet, and when I called to check in with Jon at noon, I still wanted to dance.

I’m trying Provigil for the next two weeks to see how it helps with fatigue. This, having been Day 1, has started out well. I worried about taking anything that sounded like a stimulant, especially with what seems to be a natural inclination towards insomnia. It could be that the Cymbalta is vacating my bloodstream, but today for the first time in a long while, I wanted to do more than sit on the couch letting the television consume the gray matter between my ears. In fact, I have made every effort to contain my enthusiasm today, so as not to crash and burn, which I am prone to doing in instances such as this: OoohooohOOOH, let’s go climb Mt. Everest! Only to discover that it was a Really Bad Idea™. I don’t feel high as a kite, which is encouraging. We’ll see how tomorrow goes.

I want to join Susan this year in her quest for a healthier lifestyle. Without the ability to exercise regularly, losing weight is an agonizing process for me. I don’t know if I can keep up with a second blog; I barely keep up with one. However, it seems a good idea, not only to log successes and failures, but to make them accessible to those sharing the quest for healthier living, and as well, those trying to help me. So, I’ll give it a try. Please be warned, however, I’m not always Rated PG.

Happy day.