(8/24 update: couldn't make it into work today. Only marginally better. Slept until around 1:30, drank, checked mail and now back to bed. At least the dogs are keen to just sleep as well. Waiting on doctor to let me know if I should alter any med doses to turn the pain volume in my brain down.)
Long-time Blenders know that I (and other Baristas) sometimes use these weekender slots to talk about more personal stuff since the news cycles are less vigorous with breaking matters, so feel free to skip this post if you're looking for “news.”
For the last couple of days I was in “an undisclosed location” (if you follow me on Facebook or Twitter you already know this). Anyway, this is the third week in a row that I traveled. First it was for a wedding in Birmingham, then it was Netroots Nation, and now this latest trip.
I've just hit the health wall — again — and it sucks. More below the fold.
From November 2008:
I was recently diagnosed with fibromyalgia after dealing with daily chronic, sometimes debilitating pain for months. The frustrating misery would come and go. It's one of those things you cannot cure; you maintain it and deal with the flare ups as they occur. My fellow Blender baristas who accompanied me in Denver (and held the fort at home) to cover the convention were well aware that I was struggling with pain during that trip, but it was something knew I had to do, regardless of the physical toll it took. Afterwards I was wiped in ways that are hard to even explain.
People frequently come up to me and say “I don't know how you do it.” Well, this is the answer- you pay for it one way or the other … It couldn't go on forever — the job, the blogging, the conferences, media requests, panels, etc. I burned up — by choice of course — all of my paid time off to blog and work for equality-related endeavors; I don't even have sick time left.
That's all still true, though subsequently I went through several rounds of trying one medicine or another looking for relief — saw my GP, a rheumatologist, neurologist, endocrinologist; loads of bloodwork, etc. Most of the time the side effects were bad, or it simply didn't relieve the pain at all. A lot of readers were interested in learning more about fibromyalgia, so I blogged about it in greater detail (Fibromyalgia: when your brain is not your friend).
The bottom line is that this is a chronic pain syndrome that cannot be cured, and treating it using with common over-the-counter pain meds — Tylenol, Advil, Aleve etc. is pretty useless, since there is no muscle inflammation or trauma going on — the pain is real, but the brain has improperly set the volume on pain too high (in phaser terms, “stun”). Opiods often used for pain like oxycontin, are again useless.
I haven't tried the one drug approved by the FDA for fibromyalgia — Lyrica, which is actually an anti-epileptic med, some find it effective. One of its side effects is weight gain, so I'm definitely not interested, since I seem to be bad side effect queen — side effects are what got me here in the first place. Generally, the drugs often prescribed are only treating the symptoms, and since each case is different, it may time to find some relief, if any. Usually a combination or cocktail of meds is involved – sleeping meds (since disturbed or not-deep-enough sleep exacerbates fibromylagia flares), antidepressants such as Zoloft or bupropion, and dual reuptake inhibitors like Cymbalta or tramadol are usually tried out on patients.
Anyway, I never tried Lyrica for the above-mentioned reasons, but Cymbalta (Duloxetine) a serotonin-norepinephrine reuptake inhibitor, was also approved by the FDA for treatment of fibro. I decided to try it, after all these other cocktails failed to give me any relief, and the chronic pain was not only sapping my energy but on other days placed me in a state of despair that I would have to live like this for the rest of my life.
Getting acclimated to Cymbalta was rough. A lot of patients can't take the side effects (I experienced dizziness, fatigue, dry mouth, headache, increased sweating, blurred vision, tremor, hot flashes, cold feet). The dizziness and lack of equilibrium were particularly bad, as in I couldn't drive and was walking into walls. But about two weeks in, almost all of my chronic, very specific pain triggers were gone. It succeeded in ways none of the other drug combos did.
So then I faced a dilemma — do I keep taking it, even though I was now debilitated in a different way and hopefully the side effects will subside, or consider this another failed experiment? After two or three weeks, the dizziness was intermittent, the blurred vision still occurred daily for periods of time, and the rest of the symptoms remained as well, just less prominent or frequent. The sleepiness was irritating at times.
But the pain was still gone. I could carry things that would normally place me in excruciating pain again, walk the dogs the same distance I could prior to falling ill. My energy returned. All seemed to be well.
Then I deluded myself into thinking I was “cured,” not taking seriously that my endo alerted me earlier this month to take it easy, knowing how I throw myself full-bore into my day job, the blog, and offline activism when I'm ok. And so I tested myself, going back to traveling back to back for three weeks and then I hit the wall.
While in the undisclosed location on Friday, after lugging a 40 lb suitcase all around the location the prior day (and up and down stairs), I crashed and burned. I could barely get out of bed, the whole-body tremors, cramps and fever/sweats/chills came back. And I had to lug that suitcase and my body to the airport the next day. I decided to stay in my hotel room, rather than venturing out, and sleep as long as I could, waking up only to drink and go online a few minutes and get back into the bed. I felt broken and in the same trigger point pain as I was prior to Cymbalta.
I guess this proves there are limits to miracle drugs, lol. I pushed it too far. My brain was freaking out sending out false pain messages to just about every part of my body, which made it hard to sleep comfortably. Anyway, it was smart to do nothing except rest, so I could suck it up to make the trip home. Kate had to take the suitcase out of the car for me. I didn't go online at all once I came home up until this point.
Needless to say yesterday (Sat.) I was still in excruciating pain, with unbearable cramping of my toes and fingers (WTF!?), and sapped energy, as if it was back to square one. I figure this level of discomfort will subside over time if I can keep my *ss home for a while, stopping the airport shuffle. The problem is that on my calendar, it appears I do have a blog-related trip in September, one or two in October (and three, maybe four trips in Nov!), so I really better work through this bad episode by getting enough sleep and knowing my — and my medication's — limits in managing my fibro.
And I was thinking that all the political stuff would die down after the election so I could blog and travel less and take care of my health. Good luck with that. Honestly, it's hard to say no when there is so much to be done for equality (and still keep a roof over your head during the week with the day job). Sigh, burnout for me is hitting the damn wall and not seeing it coming. Cymbalta made it easy for me to believe, even with the side effects, that I was well again, dammit.
Again, back to the regular programming – I'm heading back to bed.