Some days...

Everyone with FMS has good days and bad days. Rarely can we predict when which will occur.

Sometimes, however, bad days happen and we have NO IDEA whether to blame it on fibro or something else entirely.

An update: I've been seeing a chiropractor who specializes in NSA (Network Spinal Analysis) and SRI (Somato Respiratory Integration) for the last month and a half. These practices, in combination, have proved incredibly healing for many people with Fibro, Chronic Fatigue, and a number of other issues.

Our bodies--no surprise--are a lot better at communicating their displeasure and unhappiness to our minds than our minds are at interpreting what our bodies say.

Just sayin'.

Peace,
B

Suntans & Steak

Love yourself, for who and what you are; protect your dream and develop your talent to the fullest extent.

Joan Benoit Samuelson

Sometimes I think that those of us who struggle with FMS forget to do what Samuelson's quote urges everyone to do. When your fingers are suddenly made of clay, you forget your phone for the tenth time in a day, or you suddenly want to cry because of the shooting pain coming from nowhere in your arm is too much--it's difficult to remember who you are, let alone love it.

I'm lucky enough to be surrounded and supported by loved ones who do their best not only to understand Fibro, but also to help me remember who I am.

Sometimes it still sucks. Just the other night we went to dinner and were seated at a high-top table (big pet peeve of mine, by the way). Within 10 minutes, my shoulders were tensed and my back was spasming. Yaaay sciatica. The steak was yummy, don't get me wrong, but I wasn't exactly focused on it, thanks to the pain.

Overall, however, I've been doing better back down in the sun.

Peace...

Beer Friday

The title really has nothing to do with the post, but it got your attention, didn't it?

So I've been off Savella cold-turkey since Saturday, six days. My back has been complaining a little, but I think it has more to do with my new job (sitting most of the day) and new bed than being off Savella. I'm still dealing with insomnia issues, but since I've been taking Soma to handle the back spasms...problem temporarily solved!

I haven't been running since this weekend since I've been getting used to my new schedule (you know, that whole working in an office thing). I'll probably get out Saturday and Sunday, and then hopefully figure out a routine for the work week after that.

So...I guess the boring moral of the story is that I'm feeling pretty decent, enjoying island life (I really am in the midst of Beer Friday, by the way), and not ready to leave the sun any time soon.

Cheers!

Pharmacy, Schmarmacy

I'm officially, permanently moved down to St. Thomas. In the midst of the move, I faxed a Hippa release to my doctor's office so that I would have hard copies of my prescriptions faxed to me. Result: Fail.

Problem? I ran out of Savella, oh, say, Friday night. My doctor's office is closed Saturday, imagine that. I have a cute automatic voicemail from CVS telling me that my "Prescription is ready for pick-up," but that CVS is in Maryland, and I'm pretty sure they don't ship prescriptions. Also, I must point out that I specifically asked my pharmacist to stop any and all automatic refills since I moved out of the country. Result: Epic Fail.

So, I'm about 36 hours into withdrawal from Savella. If you don't know anything about the medication, it's important to know that this isn't the type of medicine you just go off cold turkey. Oooooh, no. You have to wean off of Savella a bit at a time, just like you start the med by slowly increasing the dosage over time. Needless to say, I'm less than thrilled by the prospect of the many possible horrific withdrawal symptoms I may endure by the time I get the Rx refilled (or if?).

I've been feeling a tidbit fatigued and at the end of my run this morning (a measly 1.5 miles, and that's probably generous) my body did that fun thing where everything turns to lead and I feel like I'm going to fall over and pass out from sheer lack of muscle control. It's really quite fun, I must say.

In an effort to at least sleep all the way through the night last night (I've been waking up way too much during the night, due in part, I think, to the obnoxiously loud, yet ineffective, AC unit in the house that the landlord has yet to replace), I took 1mg of melatonin--instead of my usual .5mg--and a muscle relaxer. I took the Soma as much for muscle issues as for sleep, as my neck and back had been warning me all day of an inevitable spasm episode. Sleeping Beauty had nothing on the sleep I had last night, even including the 7:45AM potty break I took, before passing out again until 10AM. Mmmmm...bliss.

And now, I am hungry. Back to play with the doggies (who are still trying to figure out what would possess their normally caring and loving parents to move their very furry Huskey-Chow mix dogs to the Caribbean--the plaintive looks are something to be reckoned with!) and make some lunch with A for the rest of the lazy Sunday rain day. Oh yeah, it's raining today. Oh well, back to sunny paradise tomorrow, I'm sure!

Ciao

Fibro in the Tropics

I must apologize for abandoning my blog for a wee bit- I had many great reasons! The biggest reason is that I recently made a sudden move to the Caribbean (yes, really!). I don't have Internet access other than my iPhone yet, so bear with me for a bit.

We've been out running a few times since we arrived on Wednesday and my body has had mixed reactions. Overall, my body seems much happier to be back in warm, humid weather, but I have not been very good about taking my supplements since arriving. I'm doing ok on the runs, which gave been pretty short so far, but my body feels like lead when I'm moving. There are, admittedly, Tons of hills, which take their toll at times, but the fatigue is very obviously Fibro-related. I also haven't been sleeping very well, and I've been ready for bed around 9pm ( AST), but I think my body will figure things out when we're all moved in and I have a normal schedule.

Until then!

Beating the Clock

For the first time in a few weeks now, I managed not to wake up at 3am. I slept through until about 7, then dozed back off until 9:30 or so, one of the dogs on top of me. =)

I think my body's getting a little peevish at me for not having one much other than sit around in the snowed in house for the last couple days (and before that, fighting off my mean ole cold). I haven't been great about taking my supplements the last couple days, routine having been thrown off by the blizzard and all.

So...not much to say today. Back to J-Lo and "The Wedding Planner." (Believe it or not, I've actually never seen it!)

Cold Weather Blues

Yet again I have fallen victim to the woes of cold weather. I, my friends, was the innocent victim to that evil known as THE COMMON COLD (feel free to insert dramatic DUN DUN DUN sounds here). I made it to the gym on Monday, as promised, but was still feeling pretty weak and a little shaky/dizzy, so I kept my work-out to a minimum. I ran a mile on the treadmill at 10:20 pace (nice and slow), then did a hodge podge of lunges, squats, medicine ball ab-work, yoga, pilates, and upper body weights that amounted to all of 25-30 minutes of strength training. I then spent 15 uncomfortable minutes on the Steam Room, thanks to the hairy Italian man in a Speedo just feet away from me, sweating and oggling. ::shudders::

Regardless, Tuesday I took the day off, somewhat unintentionally, as someone reminded me last-minute that I was supposed to make an appearance at a Team in Training celebration happy hour event. Wednesday morning I woke up at 5:00AM and couldn't go back to sleep, finally resigning myself to tossing and turning for another few hours. By this point, my head felt like it was stuffed full of cotton, my nose was suspiciously pre-Cold stuffy, and my whole body was tender to the touch. The minimal work-out from Monday was not helping, as Fibro helped what should have been barely noticeable soreness into full-fledged agony.

Rather than give in to the desire for self-pity and something to knock me out for the rest of the cold's duration, I went with my boyfriend to help at the homeless shelter where he volunteers twice a week. Trying not to breathe on anyone and washing my hands almost obsessively, I was glad for the couple of hours of distraction that making and passing out lunches brought. I may have felt like death warmed over, but many people still have it worse.

I'm still feeling pretty beat-up physically and the slightest exertion makes me feel weak, light-headed, and likely to keel over, I'm sniffling, coughing and otherwise the typical portrait of a cold victim. A snowstorm is moving in today, though, and they're calling for 12-26 inches in the next 24 hours. A few of us are holed up together (3 of the 5 of us started our day with Alka Seltzer for our colds) to enjoy the fluffy white, good company, a warm fire, and plenty of libations. If you're up in this neck of the woods, stay warm!

Snowy Weekend

A few medical professionals and a number of people who suffer from Fibromyalgia have posited that the weather has an effect on the symptoms--ie: winters are worse, etc. While I'm not entirely sure that there is a correlation, I was just as happy about the 6 inches of snow we got this weekend as the kids I saw out sledding in it yesterday!

I did not mean to abandon you during the weekend, but things were a little chaotic, as Saturday morning was the MSP Polar Bear Plunge. Because of the snow, arctic temperatures, and number of people collapsing after the 2pm Plunge, the Johns Hopkins Medical Team canceled the 3pm Plunge, much to my dismay. I still danced around in the snow in my bikini, but it's just not quite the same as shivering in excruciating pain after exiting the icy (polluted) waters of the Chesapeake Bay. Regardless, the Plungers raised over $3 million for the Maryland Special Olympics.

A couple of interesting Fibro issues to note:
First, while I have not been particularly exhausted physically the last three days, I am incredibly tender to the touch everywhere. Not unbearable, but certainly one of my least favorite symptoms. Second, I'm falling asleep pretty easily and pretty early, but I'm waking up (routinely) 6 or 7 hours after I go to sleep, and sleeping fitfully after that initial wake-up. For example, last night I went to sleep around 11pm (was watching the Grammy's and reading), and woke up at 6am. I tossed and turned my way until the alarm went off at 8:30, by which time I was MORE than happy to get up out of bed--until I realized how cold it is!

I, by the way, am watching icicles and snow melt on my porch as I write this. Oooh, coffee is done. Well, that's all for now!

Na'vi

Yes, I saw "Avatar" like the good sci fi/fantasy nerd that I am, the capitalist that Americans are expected to be, and the cinemaphile I pretend to be. I, too, am fascinated by blue people with pointy ears, prominent cheekbones tails, and a physical, tangible connection to their ecology. The idea of a species that co-evolved with nature fascinates me, and not just because of the screamingly obvious metaphor to Earth. And now for the Fibro connection...well, there isn't really one, other than the fact that my poor little nail beds are blue right now.

I unintentionally skipped the gym yesterday--forgot that I had a Girls' Wine Night, which made it impossible to hit the gym for weights and a swim in the evening, like I'd planned--whoops. However, apparently getting up early helped my sleep a tidbit. I was out like the Red Sox in the 2009 World Series (Go Yankees!) by 9:30pm. I remained dead to the world until 3:30am, when I woke up ready to start the day. After a short, less than kind, conversation with my body, we agreed to make an effort to go back to sleep. I'm not gonna lie--I rolled over so many times I'm surprised I didn't get dizzy. I forgot to take my melatonin before bed, though, so all-in-all I count that as a success.

It's getting colder outside, so the game plan is to run on the hamster wheel at the gym again tonight. I'm hoping to make it to the 7:30pm yoga class afterward, too. I miss going to the Hot Yoga class I went to for a while--it did wonders for my joints and flexibility and sweating out every available ounce of liquid in my body was very cleansing and relaxing.

So far this week has gone well, and I feel like I'm mostly battling to overcome the residual weakness and sniffling from my sinus infection, rather than fighting Fibro. Here's hoping it stays this way...well, not the sniffling.

Operation Rise N' Shine

Yesterday I resolved to get up at a reasonable hour, and as I indulgently breathe in the fragrance of my Pumpkin Spice coffee (I refuse to be restrained by seasonal traditions!), I proudly announce that I was out of my oh-so-warm-and-comfy bed by 8:05 this morning. Hooray me! I do have to admit that by 8:15 I was wondering just how long one has to stay out of bed before getting back in can be considered a nap. (Seriously, how long is it?)

I slept wonderfully last night, minus a late night interruption when someone came home from an impromptu guys' night. Although it did take me a little bit to fall asleep--maybe 20 minutes or so--once I did, I was out like a light. I count 20 minutes as a success! It seems that for the moment, the combination of a slightly later bedtime, melatonin and my normal workout routine are conquering the insomnia issue.

Score:
Me-1
Fibro-0

Take that, nasty disorder!

I do have to say that I'm not quite 100% after my bout with a sinus infection a couple weeks ago. I made it out for a trail run on Saturday, but for the first time, was not able to pull out the full ~9.5 mi. of the trail, having to turn around about 3 miles in and settle for a 6 mile run/walk. Yesterday I went to the gym to run on the hamster wheel (I'm not a fan of treadmills, you may have noticed) for a few miles. I managed a total of 4 miles, which isn't shabby, but my body was absolutely exhausted and I took far more walking breaks than I would have liked.

I have tentative plans at the moment to get an early morning run in tomorrow with a running partner, so I'm not sure what the distance will be. Saturday I'll be voluntarily plunging into the Chesapeake Bay for the Maryland State Police's annual Polar Bear Plunge, to benefit the Maryland Special Olympics. Did I mention that the forecast is calling for snow? I'm hoping to get a longer run in Saturday morning, pre-plunge, but at the risk of hypothermia, I may pass on intentionally drastically dropping my body temperature twice in one day. It remains to be seen.

P.S. If you would like to support the Maryland Special Olympics by pledging to support me as I plunge, email me (if you have my contact info) or leave a comment here and I'll let you know how you can make a secure, tax-deductible donation online. Even $5 or $10 makes a difference!

I dreamt a dream...

I stayed up late last night reading and mourning the departure of Conan O'Brien from the Late Show, as NBC re-aired Conan's first show as the Late Show host. I fell asleep pretty easily, probably as a result of the late hour, the third night I've taken Melatonin before bed, and a nice mug of hot cinnamon vanilla milk while I read. I woke up around 7:20, took a peek at the alarm clock (realizing that my cell phone, whose alarm was set for 7:30, was nowhere to be seen), and burrowed back into my fortress of pillows and blankets.

BLEEP bleep BLEEP bleep...BLEEP bleep BLEEP bleep...

Yes, I picked the most obnoxious ring-tone possible as the alarm on my cell, otherwise I'd roll over and sleep through it. Unfortunately, my blackberry and I have not yet developed a Bluetooth connection and I could not remotely tell it to SHUT THE HELL UP. Grumbling to myself, I rolled out of bed and tried to find my phone. Incidentally, it was under the blanket that had fallen off the foot of my bed during the night.

Finally blessed with silence again, I reset the alarm for 8, decided against it, and took up camp back in my blankets. The point of this post is this: Oftentimes I wake up in the morning, am fairly clear-headed and ready to get up and start my day. Against my better judgment, I reset my alarm clock, hit snooze or turn my alarm off altogether, inevitably resulting in sleeping far longer than I intended and waking up groggy and out of sorts.

The fact that I am drinking my first cup of coffee as I write this serves to underline this point. My plan for the day, however, is to be off to the gym to run 4 miles on the hamster wheel--I have nothing against Maryland winters, I'm just still hacking up a lung from the sinus infection winter so generously shared with me two weeks ago--and then to run a few errands before resuming my typical posture in front of my Mac to write again.

Resolution: Tomorrow I will be out of bed and functioning by 8:15AM...really...

Treatment Overview

While I have ups and downs with Fibro, sometimes the downs last too long and are too painful to endure. In October 2009, I was at my breaking point. I could not sleep, was always exhausted, had horrible sciatica, and in general was just a hot mess. I finally had a break-down and decided that despite years of protests against the medicines the FDA approved for Fibromyalgia treatment (largely antidepressants, which, in a nutshell, only block the pain sensors in your body and do nothing to treat the actual problem), I had to try something. I made an appointment with a doctor's office a friend had recommended, intending to ask about Lyrica (pregablin) En route, my car engine died, which has nothing to with Fibromyalgia, but serves to set the scene for the day.

My doctor was an excellent listener (which is often a problem Fibro patients run up against in healthcare professionals), taking into account the long list of my symptoms and suggested that I try Savella. Desperate enough to try anything, but very concerned about some of the negative side effects Fibro patients experience with Lyrica (worsened fatigue, drowsiness, etc.), I agreed to try Savella. My doctor gave me several triation sample packs of Savella and I slowly worked my way to 100mg/day (50 in the morning, 50 at night). Initially my only side effect was lack of appetite, but now that I've been on Savella for almost four months, I'm having more issues with insomnia.

I've listed my most prominent symptoms and a full list of my personal treatment regime below:

Symptoms/Issues:
Fibro Fog
Insomnia
Constant feeling of exhaustion
Physical fatigue after basic tasks (like climbing stairs)
All-over tenderness
Sciatica (most likely unrelated)
Muscle Twitches
IBS
RLS (Restless Leg Syndrome)
Inexplicable pain in deep tissue, joints and pretty much everywhere
Headaches

Treatment Regime*:
Rx Savella: 100 mg/day (50 in AM and 50 in PM)
Rx Nabumetone: 1500 mg/day (750 in AM and 750 in PM)- to reduce inflammation caused by sciatica and muscle spasms in my back
Rx Soma: 350mg at bedtime as needed- muscle relaxer to help with sciatica

Women's Daily Multivitamin
Fish Oil with omega-3 fatty acids: 1000 mg (in the AM)
Acidophilus Probiotic: 1 capsule (in the AM)
Vitamin C: 1000 mg (AM)
Calcium Citrate: 1 tablet (AM)
Magnesium: 250 mg (AM)
High-Potency Vitamin D (D3): 2000 IU (AM)
D-Ribose: 850 mg (1-3x/day for three weeks and then 1-2x/day I just started this)
Melatonin: 1 mg (before bedtime, to counteract insomnia)

*I've noted the prescription medications I take so as to avoid confusion between the supplements I take and the restricted, prescription-only medicines.

Introduction

My name is Brianna, and other than Fibromyalgia, I am a healthy 22-year-old woman. I am currently working as a freelance Communication consultant, writer and editor, following a brief stint as a college English Professor. I ran my first marathon with Team in Training to support the Leukemia and Lymphoma Society in June 2009. Completing 26.2 miles in the inaugural Seattle Rock N' Roll marathon was a victory in and of itself, as I'd had physical challenges throughout my marathon training. Despite tendinitis in my Achilles for the month and a half preceding the marathon, I still completed the race in 5:29--almost an hour slower than my original goal time of 4:30.

I am currently training for my first Ultra, the 50K HAT run in Havre de Grace, MD in March 2010. This time around, training has been more of a challenge, despite having more free time to devote to running and cross-training. My body is, as anyone with Fibromyalgia has experienced, rebelling against me, making training both frustrating and painful. Despite the challenges, I still intend to do my absolute utmost to run the 50K that is barely 2 months away.

Posts to follow will include my personal Fibro treatment regime (successful or otherwise), as well as (hopefully) daily updates on both training and life with Fibro.

Live, Laugh, and LOVE to Run,
Brianna