Alright. Now that I’ve gone over everything that Chronic Fatigue Syndrome isn’t and I’ve told you to remember that every body breaks differently, now let’s get into the actual symptoms. Because everyone’s cases are different, in order to diagnose CFS, Mayo Clinic has made a list of 8 official qualifying symptoms. You have to have 4/8 to qualify: (I will highlight in red how I fit my diagnosis)
- Post-exertional fatigue > 24 hours
- Unrefreshing/non-restorative sleep
- Impaired memory concentration
- Muscle pain
- Multijoint pain without redness or swelling
- Headache (increased frequency or pain threshold than normal)
- Tender cervical or axillary lymph nodes
- Sore throat
Additional list of official symptoms:
- Morning stiffness
- Allergies or sensitivities
- Chills and night sweats
- Peripheral numbness and tingling
- Weight changes
- Mood issues
From here I can either go into detail with what various symptoms mean and what my other symptoms were, or I could continue on Mayo’s list of physical changes that happen as a result of CFS. I think I will continue on Mayo’s official information.
Okay, the next thing I want to explain is a little tricky. One of the effects of having Chronic Fatigue Syndrome is a change in the nervous system. This involves
- Central and peripheral nervous systems
- Increased stimulation or activation of stress response (called the “fight or flight” or “panic” response)
- Changes in the balance of neurochemicals (serotonin, substance P)
- Memory pathways
- Misinterpretation of normal stimuli
In layman’s terms, I have 3 times the normal amount of the neurochemical that regulates stress, anxiety, and panic. Basically? I am on a constant panic attack. My nervous system–my brain’s been hijacked, and it’s up to me to try my best to control it. I’m easily overwhelmed. I have a hard time processing what would be the normal amount of stimuli (light, sounds, smells, stress, touch, pain, foods, medications) than I used to be able to.
Let’s enter Super Scientific Mode for a moment:
There are two systems that our bodies have to regulate stress. The “sympathetic” system initiates the stress response, and the “parasympathetic” system initiates a relaxation (reset) response. However, with Chronic Fatigue Syndrome, the parasympathetic system becomes exhausted and can no longer operate on its own or keep up with its sister branch. So, at the Mayo Clinic, they taught us how to try to “reset” our systems manually. Manual override anyone?
Autopilot disengaged, switch to manual override! Hahaha… Okay, enough with the puns.
Due to this overbalance of neurochemicals, there are even more symptoms to talk about. The following list of official symptoms are officially called “Stress Signals”, simply because they are symptoms that happen when your body is stressed. The ones marked by an * asterisk are “normal stress symptoms”. Now imagine to yourself what it would be like to have these symptoms all the time. Not just when things get rough or it’s crunch time. Like the last list, I’m going to highlight in red the ones I highlighted about myself when I was at Mayo Clinic in February 2011, so you can see how I fit the diagnosis I received and how that might compare to someone else with my illness.
- *increased sweating
- *increased heart rate
- *increased blood pressure
- *short, shallow breaths
- *muscle tension
- body aches
- *clench jaw/teeth
- TMJ symptoms
- *change in appetite
- irritable bowel
- irritable bladder
- constantly tired
- weight loss/gain
- decrease sexual desire/function
- skin changes
- *feeling overwhelmed
- crying easily
- mood swings
- poor concentration
- memory lapse
- difficulty with word finding
Behavioral/Unhealthy coping mechanisms
- unhealthy eating patterns
- sleeping habits change
- increased focus on symptoms (I noted to the doctors that it’s hard to tell them what’s wrong if I don’t keep track :p)
- negative attitude
- negative thoughts
- no longer fun to be with
- decreased activity and/or exercise
- scattered activity
- unrealistic expectations
- spend more hours doing less work
- increased chemical use (meds, caffeine, alcohol, nicotine)
- addictive behaviors
- neglecting appearance
I should note that the list of these symptoms that have changed the most since February 2011 are the ones marked in the last category, Behavioral, and half of those in Emotional. It is much easier to change your thoughts, behaviors, and beliefs about yourself and your situation than actively regulate the things your body does on its own.
However, I should also note that some items, such as “decreased activity” can be a body’s limitation rather than a behavioral choice. Sometimes people spend more time doing less because they don’t now how to be focused or create priorities. Sometimes it’s because they’re depressed and can’t find the emotional strength to do something they love. In my case, it’s because my body is dead worn out.
So, giving you the lists might be more confusing than helpful, but I thought I should at least give the official information so you can see that it is in fact a real condition. (Chronic Fatigue Syndrome needs to work on its street cred.)
Okay, now I’m going to switch tacks. I’m going to step out of official lists and information and step into a much more personal role. Hopefully, if you weren’t able to understand the above, you will understand this. I’m going to talk as frankly as I can about many of the symptoms I’ve had to face. I’m going to start as close to the beginning as I can and talk about what life was like, living in my body.
During the time period of having my mono virus, I had a fever, sore throat, and lovely (actually, gross) growths in my mouth and throat. Along with having that fever, I naturally lived my life in a fever-fog. I could barely think, or remember what I was thinking two seconds ago. I slept, but never felt better or more refreshed after sleeping.
I don’t know exactly how long I had my virus. All I know is that things got worse after that, not better. My throat’s growths went away, that was good. My actual fever-temperature went away. But the fog remained. But I started throwing up again, which rarely happened to me prior to that, even despite being in a different country.
Matters that I would deal with easily before were suddenly overwhelming. I remember one phone call in particular. My teaching companion was very sick, throwing up, and experiencing abdominal migraines which she’s been diagnosed with since she was a kid. These can send her to the hospital, so the situation was quite serious. I was on the phone with the American doctor assigned to us, but when he didn’t believe me and told me what she officially had didn’t exist, I panicked. I felt all my control and calm, even-headedness completely fall from my grasp and I became next to useless. My teaching companion ended up asking to take the phone, and between her retching, she told him with complete firmness and equilibrium all he needed to know about the condition he didn’t believe existed. I was stunned, both with her bravery and with my utter failure to handle what I would have been able to handle just weeks earlier. I’d handled worse–or equal many times before.
I started falling apart more and more often. Each time it completely baffled me. It was like I no longer had control over my own reactions, my own body. I was standing separate, looking down on myself, stunned to watch myself lose it.
Before, I used to be able to maneuver the sea of confusing human relationships and misunderstandings, and recognize how I should react. Or at least something approximating a response I could live with or that felt right at the time. Now, I suddenly couldn’t grasp what was wrong or what was right. What to believe, what to say, what to do. What to think. How to feel.
In fact, I stopped being able to feel at all. Subtle feelings like peace, calm, languidness, nostalgia, amusement completely vanished. My head and my heart were too clouded and too exhausted to feel anything that didn’t rock my ship completely, such as wrenching sorrow, sharp fear, pitted anger, and the infrequent flashes of fierce relief or joy.
I began waking each morning with a sore throat, half of my face numb, one of my …I forget the word…feeling swollen and tender in my neck, and a heart beating with a heavy thud-thud, thud-thud, thud-thud reverberating through my chest as if my heart had to pull all the energy out of my arms and legs just to have enough strength to keep beating. (The doctors call this “palpitations”.) Waking up was exhausting, and my whole body felt heavy.
In fact, my energy was so limited that walking up the plateau became daunting, where just weeks before it would barely leave me out of breath. Managing conversations enough to teach others became an exercise in futility, but I tried anyway. I had to limit the number of lessons to teach, how often and how far to go out each day. “Priorities” became my watchword.
I lost most of my ability to comprehend Armenian, or to even think in the language. Strangely, I found myself thinking more easily in French than even in English (which helped me not at all), but though I’d been in the country a year, I lost most of the abilities I’d gained in the previous six months. I stopped being able to improve at all. I became lost in a midst of muddled sounds I could no longer parse well at all.
Not to mention–thinking. Two seconds later and my thought stream is gone. (I don’t know how many times I’ve started my paragraphs on this post alone, to end up several words later and not know what I was going to say next.) This happens to everyone on occasion–but with every thought? Every single one? No.
Problem-solving? Difficult, but I’m still resourceful and determined enough to find a way, even if it takes me a year to find it.
Multi-tasking? Completely gone, though I used to be adept at it.
Holding two thoughts in my head at the same time? (Necessary for translation–my previous career and bread-winner.) At first? Completely, heart-wrenchingly gone. Now, I have to catch myself on “good days”. Or rather, at my prime time on a “good day”, and even then…. I’m not giving up. That’s all I can really say for it right now.
Other memory losses? The more the sickness continued, the more I knew I was forgetting. That’s the worst–knowing, but not being able to do much about it as everything slips through your fingers like water. Several months after I was diagnosed, I went to a get-together with all of my fellow colleagues from Armenia after they’d returned home. Almost all of the things they referred to? Yeah, empty holes in my brain. Completely gone. It was heartbreaking.
At least once a day someone refers to something I know I should remember, and I simply don’t.
I returned home and for the first year of my illness, I rewatched old Disney movies, realizing that I could no longer quote them or even remember what happened next. I reread all of my old favorite novels, same thing. It was like I was reading everything for the first time. I wasn’t sure how I should feel about it. It was definitely mixed. On one hand, I got to reexperience everything as if it were the first time, on the other hand….
Another example? For those of you who are LDS, I could no longer remember what books came in what order of the scriptures. For those who don’t know the full impact of what I’ve just said – I served a mission for over a year, I got a minor’s worth of credits in religious classes at university, I did scripture study classes for 4 years every day before school during High School. And I couldn’t–from one week to the next–and still can’t remember many of the basics.
Nausea. Diarrhea. Stomachaches. Vomiting. Migraines. All of these became regular friends of mine.
Pinpricks when I walk. Numbness in my face.
Bone-weariness. Dizziness, vertigo, nearly fainting.
Constant thirst. I could never stop drinking water, but of course it seems to flush right through.
Conversations suddenly became one of the hardest things you could ask me to do:
Listening for more than two seconds at a time. Parsing sounds into words, words into meaning. Internalizing that meaning. Thinking how I should feel about it. Coming up with a response. Forming that response into something intelligent or at least intelligible. Saying that response in a fast enough amount of time that you don’t think I’m bored or uninterested or stupid… Most of the time, I don’t get there fast enough.
What about two or more people talking at once? Suddenly there’s more to listen to, more to parse, more to understand–and then to fight that panic, my body’s now-automatic response to PANIC PANIC NOW HIDE FLEE SCREAM DO SOMETHING. Keep a calm expression, pretend all is well, say something as if nothing is wrong.
Many times I only do half of the steps. Then, without thinking, I say something. I throw something out there thoughtlessly, because… because I don’t know why. I really don’t know why I do it. Maybe because I just want to feel like I can still participate. And then, then I can’t figure out if it was wrong of me to act so thoughtlessly. My Logic Feature malfunctions. I can’t figure out if I did or said something offensive or hurtful or inappropriate or not. Then that Panic button turns on and IT WAS WRONG WRONG WRONG WRONG OF YOU TO DO THAT.
Have to keep fighting that, have to keep pushing that panic down. Have to keep breathing, trying to master it. It’s okay, it’s not how Mr. Panic tells me it is. It’s just my new perceptions malfunctioning. It’s my hijacked nervous system overwhelming my senses.
One talent that I still retain is the ability to tell when someone has understood what I meant. I’m still able to come from someone else’s direction in a conversation and see if a connection has been made between us. However, I’m no longer able to speak very precisely at all. (Don’t let my writing fool you, I am still able to write, if slowly.) Since I can’t speak precisely and I rarely can say close to what I mean and I know exactly when someone has misunderstood me, then the misunderstandings hurt worse than they used to. It’s not just feeling a pang of disappointment that the connection failed to engage, but it’s also a sharp prick of loss or grief, knowing that at one point in the past, I’d been more capable than I am now, and this wouldn’t have happened–or not nearly so egregiously.
Another symptom is insomnia. When I was healthy, insomnia meant “not getting enough exercise that day” or maybe “thinking about too many things”. Now insomnia means that my body simply has forgotten how to cross the threshold from awake to asleep. It doesn’t matter how many or how few my thoughts are. It doesn’t matter how much or how little I’ve done in a day. Sleep is elusive. It comes on its own terms, when it comes.
What’s worse, though, and I suppose I shall end with this before this post gets any longer, is getting trapped inside my own head. This is something that is particular to my own body’s breaking. I’ve talked to other people with fibromyalgia and chronic fatigue syndrome and they haven’t had this happen to them. And yes, they’d know it if they had. The good thing that’s come of it is that now I know in some small, limited way, how my disabled friends who can’t speak or communicate or move their bodies around perfectly but are still thoroughly cognizant of what goes on around them feel.
It happens when I’ve “used up all my spoons“, when I have nothing left to use or give. It can happen in the middle of a long day, at its end, or in the middle of a wretchedly long night. I fall inside my own head and get trapped. I can’t speak, not rationally, not on purpose. I can’t rationalize at all. I can’t do anything but cry and hope I can get out soon, and send up (wordless) prayers to God and hope that I won’t ever come to this dark place again.
Yeah, I don’t know how to describe it any way but that. It’s awful. It’s real. Thankfully now that I’m better at recognizing my limits and know better how to pace myself, it doesn’t happen nearly so often as it did….
Next up? Limitations are real.
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Note: if you haven’t read “The Spoon Theory” please do so. It’s one of the best articles I’ve seen on understanding the class of invisible illnesses.
Note: I wrote this all in past tense. I could probably write it in present, but it is already a muddle in my head. Hopefully it won’t be a muddle in yours.