Wow ... I'm still standing.
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.