Sunday, November 2, 2008
Saturday, November 1, 2008
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 that leads me 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.
Tuesday, October 28, 2008
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.