The First and the Worst

So the morning of my first day of classes started out positively with me sleeping through a date and all four times the poor guy called me.

When I got up and went to class, my heart was racing even after I got there, and I was all sweaty. I almost never sweat, so that was notably strange. Then I noticed I had a pain in the center of my chest. Not a bad one, just an odd pain I'd never had before. After sitting in class for about 20 minutes, I used the timer on my phone to check my pulse. My heart rate was 140 bpm, twice the normal rate for adults at rest. I mostly shrugged it off - my heart races fairly frequently, anyway - and went on with my day. The pain went away in about 15 or 20 minutes. I had a soda after class and felt better.

I went to my second class and when I left, I had the singular joy of hiking up the hill back to my apartment. I had to stop multiple times on the way up because I felt so awful. Not only did my heart race like crazy, but I was getting short of breath and faint. I started to feel a weird tingling numbness in my right arm and on the right side of my middle back. The pain in my chest came back.

I eventually made it to my apartment and crashed - literally. I collapsed on the floor panting, trying to catch my breath. I felt like I was covered in a weighted blanket, it was so hard to move. Eventually I grabbed a thermometer from my desk and took my temperature because I felt really hot. My temperature was 94.5. Then I checked my pulse and it was 164 bpm. When I felt well enough and the chest pain had faded, I got up and ate dinner then called my mom.

Mom was concerned but more confused. She didn't really have an opinion on whether I should see a doctor. I decided to go to the ER at St. Agnes Hospital, where I went back in February for my alleged kidney stone. They were kind of alarmed. The PA asked me, "What took you so long to get here?"

They drew blood and did an EKG, then a chest x-ray. I was settled into a room in the chest pain ward of the ER to wait for the results. Then they drew more blood and ran more tests.

Everything came back normal and my heart rate had settled down, so they sent me home and told me to see my primary care physician for a follow-up. If it gets worse, I should go back. The doctor said it's weird for someone my age and weight to have such a high resting heart rate (even when I left, it was about 95 after lying down for two hours), but that they didn't detect anything out of the ordinary.

I really REALLY hope that this goes away or gets better or something, because I can't finish every day thinking, "Maybe I should go to the hospital." I'd never have time to get any work done.

To finish on an upbeat note, at least I am now 100% certain that I'm not pregnant. As opposed to the 99.99% certainty I had before.

The Countdown to Classes

Classes at UMBC start on Tuesday. I moved back down this past Wednesday, and two of my three roommates arrived yesterday. The other space is currently empty but will probably be filled in the next couple of days. Lia is great, I can tell that we have similar priorities and will get along just fine. I'm not sure about Tosha, because we haven't interacted much yet.

Lia and I went to a community social last night and I actually talked to people and made a friend, which is something I don't do very often. It was a nice change of pace.

So, time to get to the meat and potatoes of this post: school is about to start! I'm terrified, honestly. My classes are Intro to Statistics, Comic Book Literature, The American Colonies, and WWII. I've only seen the syllabi for the two history classes but WWII in particular is going to be pretty intense.

My concerns are that I'll be a terrible student again, largely due to my health problems. The increased dose of Savella has me dreaming even more intensely than before. It's hard to wake up when the dream feels more real than being awake does. And I dream of the stupidest things, too. They're not even interesting stories, they're just dreams of things that happen in everyday life. It increases the sense of reality, which is not good.

I'm going to have to try and regulate my sleep cycle because even with all my classes in the afternoon and evening, it will be difficult to make it in every day. The WWII class requires attendance, so I definitely have to get to that one. Ideally, I'd get to all of them, but I have to think of my priorities in case that becomes impossible.

I think I'll start doing the reading for WWII now. That's right, the class hasn't been in session yet and we already have an assignment. See what I mean about it being intense?

Oh Oregon

My weekend in Oregon was a lot of fun but exhausting. I'm chalking a lot of my discomfort up to increasing the dose of Savella. Despite the following whining, I want to point out that it was an amazing weekend and I wouldn't have changed anything about it except my craptacular health.

My flight landed late on Thursday and Andrea picked me up at the airport. Andrea is the daughter of a childhood friend of my mom's. I have an older brother and she has a younger one, so we were both lacking sisters and adopted each other. She had to work on Friday so I hung out in the house with Buster, the beagle, who took me for a lovely run around the neighborhood at 9:30am, after which I napped. I took him for a walk around 4:00 and nearly got lost but made it back eventually. The run really wiped me out, even though I had the nap.

On Saturday we went into Portland for the day. My right ankle was killing me so I took a Tramadol-APAP for pain, but it only got worse. My left hip had been bothering me earlier and the pain there spiked in Portland. Eventually everything below my waist had pain shooting through it every time I moved.

I told Andrea I felt awful so we headed to the car but I got worse as we made our way. My head felt all foggy and my body ached and I kind of wanted to vomit. We finally made it to the car and I got to sit down. Andrea ran an errand and then took me back to her house, where we relaxed until dinner.

My body continued to be a little off on Sunday but we were less active so I managed. Here's hoping I'll settle into the new medicine soon.

What is Fibromyalgia?

Let me preface this by saying that I'm going to tell you about fibromyalgia as I have experienced it. It seems to be different for each person that has it, and you shouldn't take anything I say as the absolute truth for another fibromyalgiac. We all have different limits, different methods of coping, and different things work for each of us. 

Fibromyalgia can be called by its full name, or any number of variations. I often call it fibro, or FM, or FMS. The "S" is for "syndrome," though it's rarely called fibromyalgia syndrome anymore. People with fibromyalgia don't have a definitive name. There are fibromyalgiac and fibromite, but both names are pretty bulky.  

Okay, so, what is fibromyalgia?

Honestly, nobody knows. It's been blamed on overactive nerves, dysfunctional muscles, depression, laziness, and who knows what else. Research is being conducted, but the medical community doesn't know what fibromyalgia is or why it starts. Oftentimes it begins after an injury, surgery, or traumatic experience. For instance, my doctors suspect I developed it either because of the stress of being away at college or because of a concussion I sustained in the winter of 2007/2008. I believe I developed symptoms before the concussion, but it's hard to tell. 

There's no blood test for FM, only a pressure point test. Basically, the doctor presses gently on these points and if you are in a disproportionate amount of pain in enough of them, you have fibromyalgia. When I say disproportionate, I mean that you are practically screaming when pressure is applied to these points that you didn't even know you had. Most people will feel them slightly, but fibromyalgiacs feel them acutely. When I first had symptoms, I could tell you where every one of those spots was on my body because they throbbed constantly. 

Back in those days I had flares often. A flare up is just what you would expect - a period of time in which the symptoms are much worse. Some symptoms only appear during flares. For some fibromyalgiacs, flares are related to stress, the weather, or over-exercise, but most of the time they happen for no apparent reason.  

There are three drugs that have been FDA-approved to treat fibro. The first was Cymbalta, which is an anti-depressant. The other two are Lyrica, an anti-seizure drug, and Savella, which is similar to anti-depressants. Cymbalta made me violently ill and Lyrica made me depressed and anxious. Savella is the only one that I have been able to tolerate. 

Drugs can be great treatments but also carry risks. Fibromyalgiacs are often sensitive to medications and have adverse reactions. We tend to keep trying different medications until we find one that we can tolerate. We usually have the weird reactions, too. Savella, for instance, gives me vivid dreams. I’ve never dreamed so actively in my life. 

Aside from those three drugs, there are a lot of others that are prescribed to fibromyalgiacs. Low-dose anti-depressants are a favorite treatment. I tried Lexapro and Wellbutrin and neither worked out for me. I have Restoril to help me sleep because I have problems sleeping, like many other FM patients. I had Provigil for a long time, which I took in the morning to energize me. It made me too jittery, though, so I stopped.  

Many fibromyalgiacs are also prescribed narcotic pain relievers, like Vicodin, because over-the-counter stuff like Tylenol doesn’t touch fibromyalgia. I was given Percocet after my gallbladder surgery in January and Tramadol the following month when I had a kidney stone. I am not ashamed to admit that I saved the extras to take when I had a bad day with fibro. Now I have a prescription for Tramadol for breakthrough pain, which is great. I haven’t taken it yet, but it’s only for when I really need help and I don’t expect to take it more than a couple of days a month. 

The hardest part of fibromyalgia is adjusting to being a sick person. We’re not cancer patients, unless by coincidence, but we are still sick. It was really, really hard to give up things that I loved because I couldn’t do them anymore. I had to recognize my limits and come to terms with them. The worst part is not knowing if I will ever be able to fulfill my dream of being an archaeologist. Fibromyalgia ruins careers, educations, and relationships. I am lucky to have gotten it early in life in that respect – I have the opportunity to build my life around it instead of trying to make it fit into the life I already have. A big problem is that fibromyalgiacs don’t look sick. On the outside we appear perfectly healthy, so it is often hard for the people around us to appreciate the difficulties we have. My family took awhile to adjust to the idea that I was not just lazy, and for some people their friends and family never give up on that idea. 

It’s also been hard, especially with school, to adjust to the mental problems. Fibro comes with a symptom commonly called “fibro fog.” We are forgetful and often have a hard time focusing on things and remembering where we put items. I’ve adjusted pretty well to the forgetfulness, but I still have to work around the times that I can’t focus. There’s really nothing I can do about it.

As fibromyalgia becomes more widely recognized, more research is being done and there’s hope that better treatments will be developed, or that we’ll at least learn more about the condition. I hope that one day we’ll get my medications right and I’ll get to live a normal life again, but I know that it might never happen. But still, it’s possible, and I’m determined to be optimistic.

New Blog!

Okay, so I'm new to Blogspot but I figured I'd branch out a little from LiveJournal. I've already got three of them, anyway, so why not?

This blog, "A Something-Awful Day," is where I will post information about my health problems and my adventures with various medications. I think I will prefer to keep this more serious stuff out my usual journal.

I have fibromyalgia. I could try for that whole "you have the disease, the disease does not have you" crap, but it's not true for me. Fibromyalgia has affected every single thing in my life. Nobody wants to be a sick person. I'll try to keep the drama down to a minimum because I recognize that I don't have a progressive or potentially fatal illness, just something that makes life difficult. I'll also try to keep the medical/pharmaceutical terminology to a minimum, but by now I know a lot of the terms so sometimes I forget that not everybody does.

In addition to fibromyalgia, I have a number of mystery ailments. Some of them are probably from being on medication, but some are just there. This past January I had my gallbladder removed after a specialized (and excruciatingly boring) test showed that the thing wasn't working. Usually this happened because the gallbladder is full of gallstones. After mine was removed and examined, I was diagnosed with biliary dyskinesia. That means that they don't know why my gallbladder stopped working. It didn't have any stones in it, it just decided to mutiny against the rest of my body. It won.

Currently I'm on a variety of medications and supplements.

• For fibromyalgia I take Savella (Milnacipran). I'm currently making the transition from 50mg twice daily to 100mg twice daily. Hopefully it will not cause side effects. 
• For morning nausea I take 40mg of Nexium at night.
• For Vitamin D deficiency I take 2000 IU of Vitamin D3 every day. That's five times the recommended daily value they use for those nutritional information panels on food products.
• For the hell of it, I take 1500mg a day of peppermint-flavored fish oil, because sometimes it helps fibromyalgia.

I have a few other things to take for occasional symptoms:

• Restoril (Temazepam), 15mg to help me sleep
• Ultracet (Tramadol-ADA), 37.5-325mg for pain
• Macrobid (Nitrofurantoin), which is an antibiotic, for self-diagnosable infections.

Soon I will get around to post an introduction to what fibromyalgia is...