This was posted on the PatientsLikeMe forums, and I'd love to share it with you guys here. The poster wanted to add a note that her fibromyalgia is considered mild compared to many others.

I could have written this; it sounds so much like my own experiences and symptoms. I work from home, and though I don't commute, I do have many of the same issues when it comes to travel in general and daily business dealings.

I thought I would go through my day and try to help a healthy person understand what it would be like to live with fibromyalgia.

At 5am, the alarm goes off. I wake up feeling like I did heavy yardwork yesterday… and the day before that, too. My brain is slow to come out of sleep, and rebels against waking. I slept 8 hours last night, but I'm as tired as if I slept 5 hours. Without sleep medicines, I feel like I've slept 2 or 3 hours, if at all, really, because I kinda had this half-consciousness all night long. Thank goodness for my muscle relaxant because otherwise, the leg cramps would keep me awake for certain.

I roll out of bed. My body is so stiff. I'm 30 years old, but I shuffle. The shower… the shower is the best part of my entire day. The hot water eases that "hit by a truck" feeling, helps me move better. I use lots of water, because it's my only relief without my pain meds. I get out of the shower and take my pain meds. It will take them about 45minutes to an hour before I'm really feeling them. I'll take an hour and a half to get ready to get out the door, because my body is fighting me most of the way.

The commute: Thankfully, I'm still working. It's a miracle. You'll see why. So, I sit on the trolley and listen to music and try to relax my body. The metal seats and vibration make my back tense up, which means pain on top of pain. Sometimes I just try to meditate a bit. If I overwork myself like that fellow over there on his laptop or that guy thumbing through his briefcase, then I won't have any energy left for work. Conserve energy and make it through the day.

I get into the office. Somebody is in a hurry, they want an answer now! My brain tries to produce something useful. Something comes out of my mouth. Gosh, I hope that was right. No… not really. I back-track. Oh crap, they're looking at me like I'm an idiot. Again. Yet, they have no idea how much energy they just took out of my reserves. Wait, I was doing something I had to get done… Shoot, I lost my train of thought and I'm feeling kinda drained. And trying not to be emotional over looking like an idiot… It happens so many times, that look on people's faces… It's hard not to start believing it.

I'm doing my best.

My back aches, my wrist is trying to spasm. The mail comes in… time to sort the mail. No, time to drop the mail. Pick it up… sort this here… there… that's a real job for my hands. They don't want to work right. To other people, I might look slow. They don't know my forearms are spasming and I'm fighting against my own body. The task of sorting checks, copying them and turning them over and stamping them — it's like a marathon for my spasmed arms and hands.

By lunch, I'm relieved. It has gotten to feel like I've been walking around with a dufflebag slung around my neck… my neck is so stiff from the "imaginary weight" and my lower back is screaming. I wish the office had a quiet place I could go lay down, but the office is actually still very "public" for me. Only in my own home can I truly relax. Time for a pain pill to get me through the rest of the day. By about 2pm, I'm switching back and forth mindlessly. My attention span is so short. Probably because the demands of the day are catching up to me, despite my meds.

Most of my day is spent sitting at my desk. Getting up to get ready to prepare the conference room for a meeting is something I have to work up to. The thought of carrying reams of paper down the hall to the workroom makes me want to cry. If I have to do it, I pick a time when I expect I'll be able to let my body recover… the pain keeps my mind from focusing, and I feel the fatigue sweeping over me from that extra exertion. It doesn't feel like a victory because my body deals out punishment. It's keeping score.

By quitting time, I want to cry with the relief of having another day under my belt. My back was just screaming, my head had a familiar daily headache — a dull ache that threatens to turn into a roar. I massage my neck a bit to get the tension out on the way home. Vibrating metal seats on the trolley again. Well, at least it's not the bus where you feel every THUMP as if someone just booted you in the back. I'm too tired to think.

I come home. I pull something out of the freezer and put it in the microwave. I want to cook, really, and I want to do a little housework and maybe exercise… my apartment is shameful. But I have to rest. The computer or TV… something pretty passive. I'd really like to be able to go pick up some groceries. Not tonight. Well, tomorrow I may have cereal for dinner but at least I won't starve. I'm too tired to even think about the dull aches, the spasms… they're drowned into the background. My time is now my own and I'm exhausted. At 7:30, I take my sleep medications. I have to be home, because then I'll need to wind down so that they take effect. Walking around too much or getting into an exciting TV program means they're not going to work as well. At 8pm, I generally crawl into bed, and I try to convince myself to do something low-key. By 9pm, I should be asleep. If I fall asleep at 10pm, that means my next day is going to be 100 times worse. Every single hour of sleep makes that much of a difference.

I follow this same pattern every weekday. On weekends, I don't have all that time to myself. I have to rest up, because 40hours is a long, demanding week. I can plan one major trip to get groceries, but that's at the exclusion of just about everything else I would *LIKE* to do. Most of the time, anyhow. There are rare times when I feel a bit better. There are times I just push my limits and pay dearly later. On Sunday morning, I dearly want to go to church but my body rebels and I roll over in bed. I get up, try to get dressed… and end up in bed again. Sigh, why fight? Monday starts the same drudgery all over again and I need to rest.

If you think this is depressing to listen to… just remember that your body isn't feeling like you're being stabbed, your back isn't giving you unrelenting pain, your 8 hours of rest doesn't feel like half that, you're not trying to convince everyone that you're still an intelligent and worthwhile person and that you can "keep up" — you probably ride a bus without giving it much thought… certainly not wincing every time it hits a bump. A headache probably doesn't visit you like a dear friend, every single day… sometimes all day long. Your hands listen to what you tell them to do most of the time, and your body doesn't act like your own worst enemy. That's fibromyalgia. Every day that I am able to get out of bed, it is an accomplishment. Every day I make it to my job and home again is a miracle, and I don't know how long it will last because two years ago, I never IMAGINED I'd be hearing myself say that. It's gotten worse… and I'm only 30.

I know a lot of folks have been following @pasmith's updates on me during the last week. I know I'm always curious about what's going on with my online friends, so I'm going to share the whole story with you guys, since I know some of you want to know, but would never ask.

Sometime around New Year's Day, my right calf became painful and swollen. I've been diagnosed with fibromyalgia, so I just figured it was one more thing swelling and hurting…no big deal. The issue resolved on its own after a few days, and I went about life as normal.

Tuesday night, as I was heading to bed, I suddenly experienced incredible pain in my chest and shortness of breath. It came on so suddenly and was so intense that I was genuinely scared for my life. I sat on the edge of the bed for a minute, panting and clutching my chest, waiting for it to pass. I was eventually able to get enough breath to finish getting ready for bed, but the chest pain persisted.

I have to say, I played it off as "nothing." I have enough wrong with me, dammit! I didn't need one more thing added to the list. Besides, Peter was still laid up with gout and I wasn't about to drive myself anywhere, lightheaded as I was. I was in full ostrich mode.

I dealt with the chest pain over the next day and a half, and it began to taper off. The shortness of breath persisted, and it remained at a pretty constant level after the initial attack. Walking across the room meant I'd be gasping for air by the time I got there. Peter wanted me to make an appointment with my PCP, and I hedged. I didn't call her until the next day, the 7th, and her office immediately told me to go to the ER.

I was so sure it was nothing that I took the grocery list and a shopping bag with me, intending to pick up a few things on my way home.

The first thing they did once I got back into the wards was to give me a CT scan. After the doctor reviewed it, she came to me with an expression on her face that said she was about to tell me someone died. I'm pretty sure she thought it was me.

She proceeded to tell me that I had blood clots in my lungs (pulmonary embolism), and that she was amazed that I looked as good as I did for what she saw on that scan. She said that I would need to be admitted to the hospital for a few days for treatment and observation. Talk about unexpected! They started me on an IV anticoagulant. They wanted to transfer me to the University hospital in Worcester, though, since they didn't have anyone on staff who could perform an emergency procedure if I were to throw another clot.

I stayed in the ER at the University hospital for about 24 hours. They did an ultrasound of my legs, during which they found the origin of the clot (deep-vein thrombosis, or DVT…you've heard it talked about on TV, I'm sure). An echo of my heart showed that it hadn't been affected, which was great news. They finally had a room open up upstairs on my second night there, and I was whisked away from the chaos and clutter of the ER.

Long story just a little shorter, I spent another 48 hours in the hospital room, and they came to draw blood and take my vitals every few hours. During that time, my shortness of breath and chest pain eased and my blood oxygen level returned to its normal range. I was taught how to give myself anticoagulant injections in my belly (which totally sucks ass) and I'm on a varying dose of another anticoag, this time a pill, until the nurses at the Anticoagulation Clinic are satisfied with my bloodwork, and then I can stop the injections. They say I may need to be on the pill for as long as a year, and during that time I'm going to have to be extra careful around things that could bruise or cut me.

In the meantime, I have to undergo some medication changes to get off some drugs that might cause clotting. I foresee some suckage because of that in the future, but I'll take it. By all accounts, I'm lucky to be here. The type of PE that I had — a large "saddle" embolus, which is a clot that settles in the area where the pulmonary artery splits off to go to the left and right lungs — is usually fatal, often within minutes of the onset of symptoms.

The moral of the story, kids, is that you should practice what you preach: You would want your loved one to go to the ER if they experienced chest pain and shortness of breath, right? No matter how much you think or hope that "it's nothing," it might not be. Get medical help right away and be sure to describe any unusual symptoms you may have had in the previous days or weeks.

In an ideal world, I would have called my doctor when my leg was swollen. They could have discovered the clot then and given me anticoags or "clot-busters" to prevent it from causing any serious damage. In a non-ideal but certainly smarter world, I would have called 911 when I had the chest pain and shortness of breath.

It is much, much better to be safe than sorry.

Yesterday was my first yearly exam after the Cervical Cancer Scare of '07 (geez, has it been that long?). I had a great OBGYN on the Mississippi Coast since I was 15 who helped me understand and deal with my ovarian cyst/endometriosis problem. He had a great bedside manner and was really easy to talk to.

I've been seeing this doctor since October '07 (you know, the CCS) and at first I wasn't really sure about him. He was quiet in a "let's get this done as quickly as possible" kinda way. (Which isn't necessarily a bad thing when it comes to "OMG, do I still have pre-cancerous cells" visits.) Yesterday, though, was my first "actual" exam done by him, and he was just as pleasant as could be.

He asked me what I've been doing as far as work these days. I told him that I design websites from home. He asked if I used programs like Dreamweaver, and I said, "Oh no, I do everything by hand."

His jaw dropped for a second and he said, "So you can just look at the code and see what it's going to make?" I said, "Yeah, I can."

He was amazed…astounded. He said, "It's incredible that you can look at characters on a screen and know exactly where each little dot will fall. So you're like a musician in that way, someone who can read music. They look at the notes and can hear it in their head."

Personally, I've always envied people who can read music. I started to get the hang of it in high school show choir, but that was 12 years ago, and I've never picked up a piece of sheet music since. I was deeply honored to have the work I do — and love doing — put into that sort of perspective. I've never thought about it that way; it's just something I taught myself to do because I really enjoy it.

I think this is going to be my happy thought for a while.

I'm just getting over my latest fibro flare-up. We had a nasty front come through, bringing rain, sleet, and snow, and I felt it coming from miles away. Been popping Toradol as often as I'm allowed. I had to actually stop doing my Sudoku puzzles the other night because my hand hurt so bad just from holding the pen.

I'm feeling noticeably better today, but I've still got plenty of aches — just in time for laundry day. :p I love snow, but I can't wait for warmer weather!

I had my latest appointment with my rheumatologist yesterday, and it was a good one. She reaffirmed that my rheumatological disorder is indeed fibromyalgia, and she wants to see me again in September to follow up. When I saw her last, she prescribed Tramadol for my pain and ordered more blood tests (of which I've had dozens over the past few years) just to make sure they were still "normal," then called me a couple weeks later with a tentative-but-fairly-certain fibro diagnosis.

Since I'm still learning what fibro is myself, I figure it's a good time to share what she and I discussed yesterday as well as share some links to great fibro information.

Fibromyalgia is NOT caused by or related to depression. Fibro is NOT a psychological or psychosomatic condition. Sufferers are NOT hypochondriacs or "whiners." Unlike many other rheumatological conditions, there are no visible signs of the disease. Because of this, many people have a hard time relating to or sympathizing with sufferers, since by all accounts they look healthy, even if they feel as though they've been hit by a bus.

The gist of the disease is that it's an irregularity in the way the body processes pain. Researchers aren't sure yet what causes fibro, or how and why it affects people, or what determines the degree to which someone might experience symptoms. There may be a genetic component, but it's unclear. Certain people might be predisposed to the condition, but the onset tends to be triggered by a physical illness or trauma.

There is no cure, and only recently have there been drugs approved by the FDA to treat fibro. Many treatments are simply a management of the symptoms, such as pain medication and anti-depressants (to elevate serotonin levels in the brain). Many sufferers experience an improvement in their symptoms by adopting a mild to moderate exercise regimen.

There are very specific ways to diagnose the disease, although doctors will try to rule out more serious conditions first, such as lupus and rheumatoid arthritis.

As for my own diagnosis, it's been several years in the making. My fibro seems to have been triggered by a nasty cold I had a few years ago, although I can reach back even farther than that to find fibro-like symptoms — achey joints, odd sleep patterns, overwhelming fatigue, random pains just about everywhere, increased skin/muscle sensitivity in areas (mild pokes, bumps, or pinches feel like they're going to leave huge bruises), among other things. My doctor reassures me that I'm toward the mild end of the scale when it comes to severity of symptoms, but I definitely have good days and bad. Sometimes I'm popping pain pills every six hours for days, and then I'll go two or three weeks feeling just fine without them.

If you'd like to learn more about fibromyalgia, I recommend visiting the National Fibromyalgia Association's website and WebMD's Fibromyalgia Health Center. Both are excellent sources of information about the disease.