12 Nov 2008
by Diannin Chronic Fatigue, Fibromyalgia Tags: Chronic Fatigue Syndrome, cognition, fatigue, Fibromyalgia, Provigil
Today I transition from trying Provigil for two weeks to taking it every morning indefinitely. It passed the test. Not with flying colors, but certainly well enough to facilitate a seven-hour trip to Roanoke on Monday, leave me with energy when I got home, and not feeling completely annihilated the following day. Today’s the ultimate pass-fail for Monday, though; the crushing exhaustion usually catches up with me the second day following an excursion.
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.
01 Nov 2008
by Diannin Chronic Fatigue, Fibromyalgia Tags: CFS, Chronic Fatigue, diet, eating, energy, fatigue, Fibromyalgia, FMS
This morning I logged in at 195 lbs. Last week wasn’t so hot; the Cymbalta mucked with my system in several unpleasant ways: the zombie-headedness I mentioned previously, but also water retention, irregularity, and an increase in appetite. I jumped back to 200 lbs. inside of a week, but thankfully, it took less than three days to return to my current weight.
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.
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