browser life

Keep in mind while reading this that it is eventually going to appear as a separate web page on my fibromyalgia site, so some of the incomplete sentences will actually be titles and subheads and such. I'm just happy to have it done before leaving town....


Symptoms

A detailed description of what it feels like to have fibromyalgia

I do have other concurrent ailments such as Sjogren's syndrome, diabetes, hypothyroidism, gastroparesis, celiac disease, chronic myofascial pain and periodic limb movement disorder. While some of the following symptoms are attributable to the above disorders, they are also experienced by fibromyalgia patients who do not have concurrent ailments and are therefore valid on a fibromyalgia page. Even though fibromyalgia is a systemic disorder, I have endeavored to focus more heavily on the neurocognitive aspects as they in my opinion appear to be the most underestimated and misunderstood. Please keep in mind that as a fibromyalgia patient myself, some descriptions may be inadequate due to my own cognitive limitations.

An important note to readers with fibromyalgia: there is a great deal of variation from patient to patient as to number of and intensity of symptoms. You may never experience certain symptoms described below, and I am blessedly free from certain problems that plague other people with fibromyalgia. I am NOT any sort of doctor, and I encourage anyone who develops new or sudden worsening of a particular symptom to have it properly assessed by a medical professional.

The motivation for this page came from an excellent website on myalgic encephalomyelitis by Jodi Bassett. While it is not my intent to simply copy the author's work, we do share many of the same symptoms, and some of my descriptions as a result have a lot in common with hers. I highly recommend viewing both the master symptom list and the personalized description page:

A Hummingbirds Guide: The M.E. Symptom List

A Hummingbirds Guide: What M.E. Feels Like

To more fully round out a fibromyalgia specific list, I also found an article on Fibrohugs to be useful:

Fibrohugs Symptom List

Please keep in mind that this is not intended to cover every single possible fibromyalgia symptom, just the ones I personally experience. Some of more universal symptoms that define fibromyalgia, such as widespread pain, are not covered here in as much depth as the lesser known symptoms in an effort to keep the content from becoming too redundant. Chronic pain is pretty much a given, but I feel it is important to not gloss over fibromyalgia's effects on the brain, the gastrointestinal system, the central nervous system, the endocrine system and various other vital bodily systems.

Here is what I have experienced as of June 2007, in a somewhat but not necessarily chronological daily order:

1. I require a substantial uninterrupted amount of rest on a daily basis, up to 12 hours at a time. Without this, I function at a level that is even more impaired than usual for me. I need not be actually asleep during the entire time I am resting, just not actively interacting with anything. I usually fall into a state each morning that is somewhere between fully awake and fully asleep containing elements of both. I'll be able to hear what's going on around me but cannot rouse myself enough to respond to it, or I'll be dreaming that I have gotten up without realizing that I am actually still in bed. This transitional state can last anywhere from 20 minutes to 6 hours, although during the longer periods I may lapse back into a slightly deeper sleep phase. On the average, I'm in "limbo land" for about 2 hours each day. It can actually be dangerous for me for me to force myself to go about my daily activities before I am fully awake. I'll have heightened episodes of vertigo in which I run into walls, doors, corners, etc. I may experience light-headedness, probably due to neurally mediated hypotension, during which I faint or nearly faint. And I may have a serious lack of bodily coordination, during which I should avoid any complex activity that could cause me to injure myself such as dressing, going up or down stairs, taking a shower, etc. The best way for me to be sure I am ready to arise for the day is to try to mentally count to 45; I usually visualize counting on my fingers until I reach that number. If I doze back off, lose track while counting or am so out of it that I can't even tell where my fingers are, I am not alert enough to function safely out of bed. I will then start counting over again, as many times as necessary, until I can easily reach 45 and feel reasonably conscious.

2. I can, upon occasion if absolutely necessary, conjure up enough adrenaline to force myself into early wakefulness in order to answer the phone, respond to my husband waking me for some reason, or to go to an early appointment or get up due to an emergency. It takes a tremendous effort to fight the vertigo, light-headedness and incoordination, and it is actually painful to be awake in this condition. In addition, I will experience nausea, sometimes to the point of vomiting, I might find it difficult to express myself verbally, and I will likely feel "off" for the rest of the day. Once I have completed whatever task I got up early for, I will be prone to dozing off at random times the rest of the day or possibly on subsequent days as well. I can "get away" with activity on less than ten hours of rest only occasionally, no more than once a week or so, without experiencing an exacerbation of illness that persists into subsequent days. If I must get up too early on two or more consecutive days, I risk "crashing"; i.e., an exacerbation of the above-described symptoms so severe that I may be bed-bound for the majority of time for anywhere from one to three subsequent days. If I push myself even further to maintain a shortened sleep schedule like I did when I was working, I risk a permanent deterioration of my overall condition.

3. Conversely, I try my best to avoid resting in bed for more than 12 consecutive hours, although during an exacerbation, this may be impossible. Past the 12 hour mark, I will experience hypoglycemia from lack of food, exacerbated muscle spasms and cramping in all muscles below the knees, and severe headache not responsive to any treatment lasting the rest of the day. I will feel mentally and physically slow and weak like I have the flu. It may take as long as four hours and two meals before the low blood sugar symptoms subside if I've been in bed too long. The muscle cramps may require soaking in the hottest water I can stand with a generous amount of epsom salt in the water. After the cramping has stopped, the muscles may continue to twitch uncontrollably, sometimes as long as the rest of the day. In any event, the muscles in my feet and lower legs will be extremely sore to the touch and will be quite difficult to stretch or massage.

4. Once I do awaken after the proper amount of rest, I am still not symptom free, only symptom reduced. I am never ever fully comfortable as I have a constant level of "background" body wide pain going on. I am always nauseous in the morning. I'll have rather pronounced joint and muscle stiffness, to the point that I must do slow and careful stretches before I even attempt to get out of bed. When I first start to move around while still in bed, my joints make popping sounds like gunshots which cause varying degrees of pain. I may have severe lower back pain and/or spasms even though I am careful to sleep with my knees drawn up and a pillow between them. There will be varying amounts of foot pain when I first walk on them, ranging from a bruised feeling to uncomfortable cracking in the bones and tendons to burning from peripheral neuropathy. I am sensitive to both indoor and outdoor light and must acclimate by using the restroom lit only with a night light and then switching on an overhead light a few minutes later after my eyes have adjusted. I can tolerate light coming through a window perhaps ten minutes after that, although it is still painful to a certain extent. Fluorescent light causes headaches, particularly early in the day. My movements are slow and clumsy at first as my spatial orientation is off; it's like I have to re-educate my body as to how it's supposed to function. If I am well-rested, this re-orientation may only take 10 or 15 minutes. My power of communication requires a similar acclimation; I can perhaps answer a simple yes or no question, but more complicated speech is difficult to form mentally, and the end result is usually too garbled to be understood. It's like a taped recording being played back on a machine with worn out batteries, very slow and exhausted. Once up for the day after proper rest, my mental batteries should be recharged enough for me to communicate after about 20 minutes.

5. My daily transition to the "land of the living" is usually aided by a set routine that requires no complicated procedures or decisions. I take my medication, perhaps rest on the couch for a few minutes, then go about giving the dog his medication, food and water. Then I pick up that day's newspaper and look at the front page. I may not yet be able to comprehend the headlines, and I may mis-read them. It can be like looking at something printed in a foreign language. Sometimes the phrasing is familiar, and I can get the gist of the messages, and other times it all seems to be gibberish. I usually flip through the sections and may or may not remember anything I'm reading. There are times I'm really interested in an article, but my reading comprehension is way off. Sometimes if I go back over a story after a few minutes have passed, it may start to make sense. I rely a lot on photos, captions and sidebars if the main story is too complicated for me to absorb at that time. For some reason, fiction is easier to comprehend than non-fiction. Often, after reading for awhile, when I look across the room at something, like the clock, I cannot focus on it and must wait for my eyes to adjust. I cannot eat any breakfast because of the nausea, but an hour after I've taken my thyroid medication, I drink a High Protein Boost to settle my stomach and to raise my glucose levels. On a good day, I can safely consider myself to be in the "land of the living" approximately one to two hours after I've gotten out of bed. This is when my energy levels are the highest, so if I need to leave the house that day (usually to attend my aquacise for arthritis class), that's generally when I'll do it.

6. Some of my daily activities must be done in a fairly ritualized fashion to minimize my tendency to forget necessities such as taking pills, eating, showering, etc. Any small distraction such as a phone call, tripping over the dog, or getting absorbed in a newspaper article can cause me to leave out an important activity or lose track of time so that I am late on the days I need to leave the house. It is not uncommon for me to forget what day of the week it is and miss an appointment, even if I have written it on the calendar and have reminded myself of it the previous day. I even book two appointments for the same date and time while looking at the first appointment on my calendar! Distractions become even more of a problem when I am interacting with someone else. Sometimes if my husband is talking to me while I am cooking, I completely forget I am preparing a meal until the smoke alarm goes off!

7. I still drive myself, but only on short trips of less than 45 minutes continuously. Much longer than that, and I cannot stay alert behind the wheel. As even brief errands are fatiguing, I try not to leave the house more than once per day, I try to limit myself to one destination whenever possible, and I generally stay home each day that I don't have anything specific scheduled. I take the simplest route to my destination. Despite this, I make wrong turns even when driving someplace I've been to regularly for months or years. I have even gotten lost going to someplace I know. On the weekends, I let my husband drive if I leave the house at all. I don't drive much at night because the light from oncoming headlights is extremely painful, like my eyes are being stabbed. I have completely given up grocery shopping as it is just too exhausting even with the use of an electric cart. I also avoid stores with running ceiling fans or escalators because looking at these exacerbates my vertigo. I would like to join a church, but can attend only rarely. I socialize outside the home only when specifically invited for a special occasion. I keep those visits short as even positive social interaction is exhausting.

8. Exercise is a very tricky proposition as any form of it exhausts me. I force myself to go to the aquacise classes anytime I'm physically able to get out of bed because I want to retain as much of my range of motion as possible. The class is 40 minutes, 3 non-consecutive days per week and consists primarily of stretching in chest-high water. Even though the average age of my classmates is 70, I find it difficult to keep up with them. Walking in the water exacerbates my vertigo; I run into steps or walls like a human pinball. I stretch slowly and carefully as my trigger points protest painfully. We do mostly the same stretching sequences in each class, but I will get confused and have to stop everything and visualize what my body needs to do before I can proceed with the stretch because I have forgotten how to do it. Movement shouldn't take so much conscious thought to accomplish, but there are times that part of my brain just seems to short right out. Certain activities, like moving my arms in front of me in a swimming motion, end up being done in an awkward, choppy fashion because there seems to be some brain/body connection lost altogether. I find the progressive relaxation portion of the class to be only mildly achievable. Whenever I try to make a conscious effort to meditate, I become distracted within seconds because my brain can't shut out intrusive thoughts. I find this ironic as while my mental processing is too slow in its external responses such as movement and speech, the thoughts in my head still "chatter" too quickly for me to relax. Right now, this class is the maximum amount of exercise I can endure. If I endeavor to do more, I will suffer an exacerbation to the extent that I will be unable to attend my next class. I have also noticed that when I over-exert myself, both my face and my legs from the knees down will turn bright red. I do not get any sort of endorphine benefit from exercise that I can perceive. In fact, at about the 30 minute mark of stretching, my fatigue level becomes greatly heightened, and I cannot stop yawning, as though someone removed all the oxygen from the air around me. And there is only a negligible reduction in my pain level, primarily from my muscles being loosened a bit. Only rarely am I able to do anything after the class other than to drive straight home; I cannot even take a shower because it would wipe me out so much that I would be incapable of driving. I must reserve enough energy for the walk from the locker room to my car. The exacerbation in my fatigue level usually persists throughout the rest of the day. At times, it continues into the next day along with muscle soreness and twitching.

9. I find it difficult to follow conversations when more than one person within earshot is speaking. It's like I've suddenly been transported to the tower of Babel and only one word in ten is English. It doesn't help that I have severe tinnitus and measurable hearing loss, but a lot of the difficulty is mental as well. I usually try to focus on the words of the person nearest me, but even when I can hear them and am trying my best to be a good listener, concentration is a challenge. There are times when I hear the words properly, but I understand them incorrectly, or can make no sense of them at all. I am often frustrated with my short attention span as I did not have this problem when I was healthy and in fact worked in radio for six years, so conversation and quick witticisms were my livelihood. Now if I am trying to converse with someone, whatever reply I might have for them is so fleeting in my mind that it will disappear by the time they have finished speaking, so I find myself blurting my thoughts as they come, which is rude as it interrupts the person talking even though I don't usually do it intentionally. I'm also inadvertently rude in that I am so distracted with trying to form sentences and comprehend the other speaker that I cannot focus properly on their non-verbal expression, whether they have moved on to another subject, or even whether I may have said something inappropriate. When I become conscious of the distraction and try to go back to being a good listener, I will forget whatever it is I might have wanted to ask them, and if they ask me a question, I will have difficulty forming a proper response. I may stutter, substitute a word that begins with the same letter for the word I mean, transpose words, or forget my train of thought halfway through a sentence. There are times my mind goes completely blank as suddenly as if someone slapped me. Conversations on the phone are even more difficult as I generally can't tell at all if I am interrupting someone. It's as if my brain is a malfunctioning tape recorder: it alternates between moving painfully slow, speeding up to an incomprehensible blur, or freezing altogether. And while I still really enjoy conversation and socializing with others, I find it just as exhausting as physical exercise.

10. Another embarrassing problem is not recognizing faces of people I've seen before. This happens more frequently when the person is out of their usual setting, like if someone from my aquacise class ran into me at the health food store, but it also happens at places I go to regularly, like when I failed to recognize a doctor in her own office on my sixth visit to her. And I frequently can't tell people with similar features apart, like the various thin young blonde celebrities in the news, movie characters that are all military and have the same haircuts, or even the elderly ladies in my aquacise class even though they introduced themselves on the very first day. Assigning names to them does not help because I can't remember the names either. If I am at a restaurant, the only thing I will remember about my server after they tell me their name and leave the table is whether they are male or female. I had a photographic memory before I got sick, so this feels a like a whole chunk of my brain is suddenly AWOL.

11. I am physically incapable of wandering around for long periods of time. I can walk the equivalent of only one or two city blocks without rest. When I need to go further than that, like when visiting someone in the hospital, I require a wheelchair, which must be pushed by someone as propelling it myself is far too painful. I can get around in a small store, but the pain and fatigue increase with every step. My gait is slow and uncoordinated; I had to undergo months of physical therapy to re-learn how to walk without limping as I was causing injury to my feet, knees, hips and low back. It takes a conscious effort to use proper range of motion because it no longer comes naturally to me. The pain is bad enough, but it is the physical exhaustion that stops me cold. If I persist when the fatigue gets really bad, I start to feel weak like I'm going to faint, I might become short of breath, and my chest feels like an elephant is sitting on it. If I have over-exerted myself more than a couple of minutes, I will suffer an exacerbation of symptoms that can last multiple days on end. My overall pain level will spike, my incoordination in general will increase, my cognitive function declines noticeably, and the fatigue will increase to the point that I am mostly bed and/or couch bound. If I must stand in line for more than a few minutes, the pain in my feet increases and my feet may swell.

12. I usually eat my first solid food of the day about two hours after I have a Boost. Portion size, content and timing of meals are all crucial in order to facilitate digestion, keep glucose levels steady and to avoid gluten. Too large a meal and I won't be able to digest it in a timely fashion; also, my glucose levels will go too high and stay that way since the food isn't leaving my stomach. Certain foods cannot be digested at all and will cause vomiting. Other foods must be eaten only rarely in very small quantities (like, say, five bites of broccoli in a gluten free frozen dinner) early in the day to allow gravity to aid in digestion and to keep reflux to a minimum. For optimal energy levels, I try to start my next meal approximately two hours after I've finished the previous one. Once I am up for the day, if I go five hours without food, I will become too weak to walk, talk or think effectively. Five or six small meals per day are ideal, but because I must spend so much time resting, I am generally only able to accomplish four if you count the Boost. I try to get at least 7 grams of lean protein per meal; otherwise, my cognitive function seems to be even more off than usual. The range of carbs my body seems to like best is 30-45 grams per meal. Should I accidentally ingest wheat, rye or barley-containing food, I will develop severe diarrhea, weakness to the point that I cannot get out of bed, and a flu-like feeling that may persist for multiple days. Even though I have trouble digesting vegetables, I cannot totally banish them from my diet because I will develop severe constipation requiring medication. So I try to eat pureed or canned or very small amounts of fresher veggies every other day. Going without caffeine causes headaches, but I limit myself to one Splenda-sweetened diet Coke, one glass of iced green tea, and one bite of dark chocolate (one-fourth of a serving) per day. I cannot tolerate aspartame or MSG. I drink approximately a quart and a half of water per day to stay hydrated. Sometimes this is pretty easy as I have bouts of extreme thirst. I have a water bottle by my side everywhere I go, but I must be especially careful to have something to drink with every meal in case I have trouble swallowing. Because I drink so much liquid, I need to have handy access to a restroom as often as once an hour. My last meal of the day has to be particularly easy to digest, like eggs with cream of rice or reduced fat cheese with gluten free waffles, and has to be three to four hours before I go to bed. If I eat something hard to digest late in the day or lie down too soon after my last meal, I will start vomiting. Most of my meals are microwavable or can be eaten with no prep as I don't have the energy to spend hours in the kitchen and don't possess the cognitive function to keep track of preparing several foods at once.

13. My tolerance to alcohol is now so impaired that one drink affects me like several; I'll get tipsy and sleepy for a number of hours. More than one drink will give me severe dehydration, headache, and a hung-over feeling that could last multiple days. So I only have one drink on my birthday and one on New Year's Eve and none the rest of the year. I also have reactions and intolerance to several medications. For instance, narcotics of all kinds cause vomiting. Many medications that cross the blood/brain barrier, such as anti-depressants, cause tics, tremors and continuous violent muscle twitching. Some medications have a side effect that is the opposite of what is intended; i.e., Benadryl makes me hyper and Sudafed is sedating. Other medications are effective initially and then suddenly stop working even when the dose is adjusted, like my body suddenly became immune to it. Still others, like anaesthesia, must be used at a much smaller than usual dose in order for me to tolerate it. Adhesives dissolve my skin.

14. My optimum cognitive function occurs after my first solid meal of the day, so that's when I make appointments by phone, handle finances, and use the computer. But just as getting enough sleep only reduces the severity of symptoms, doing mental tasks during my "ideal" window of approximately two hours only decreases the number and frequency of error; it can't eliminate the cognitive dysfunction. For instance, when I balance the checkbook, I have to use software and a calculator, and I still make mistakes! I cannot do multiple-digit math in my head at all if it requires carrying a number. I also transpose numbers, substitute a wrong number for a right one (like writing 0 when I mean to write 8), and mis-read what I have previously written, adding where I should subtract and similar errors. Writing unfortunately is not a great deal easier. As a former editor, proofreader and spelling bee competitor, I used to have an encyclopedic knowledge of grammar, vocabulary and effective writing. But now, I cannot see words in my head like I used to. I have forgotten basic rules of word use and cannot always tell when a word is mispelled, not the proper tense, etc. When composing original text, I leave out letters and words, transpose them and use incorrect words in place of the term I mean. I re-read what I have typed several times over before I publish it, but I still won't always catch the errors because my mind substitutes the right words for the missing or mis-used ones. In other words, they look right to me even when they're wrong. I have a great deal of difficulty at times getting what is in my head out and onto a screen before I either lose the thought or end up expressing it far differently than I mean. Writing by hand is more difficult for me than typing because it is so much slower and thus it is far more likely I will forget what I was trying to express. Also, when writing by hand, one cannot hit a delete button to correct errors as one goes along. Furthermore, my hand writing has become fairly illegible since I got sick, partly from hand pain and cramping, partly from mistakes, and partly because my hand simply refuses to do what my brain tells it to do. I suspect I may have lost at least 20 IQ points since I got sick. I can no longer write poetry. I will think of a metaphor, start to come up with suitable phrases to express it, and before I come up with more than one or two, I have forgotten the central point I was heading to. That "perfect word" that sums up what I mean, which used to come effortlessly, now either comes after I've finished what I wanted to say, or, more often, not at all. That is why it has taken me weeks to compose what you are reading now.

15. I cannot use the computer more than two hours without the development of or exacerbation of several physical symptoms. Sitting in any sort of chair with my feet on the floor will in time cause/aggravate edema below the knees, particularly in the left foot in the toes. If I don't elevate my feet after the swelling begins, they will lose all color and go numb. Shorter sessions at the computer can still aggravate my peripheral neuropathy, the most common scenario being sharp sudden pains, like someone trying to remove the top of my big toe with a can opener. Sitting in a computer chair too long contributes to lower back and hip pain. Excessive mouse use will activate a large trigger point at the right teres major/teres minor area. And I must be particularly careful how much I type. Bouts of continuous rapid typing exceeding two or three minutes cause serious carpal tunnel pain and hand cramping that once activated can persist for days, weeks or even months. If the overhead light is not approximately the same brightness as the monitor in front of me, I will get a migraine. And excessive staring at print on a monitor will cause pain in the eyes like needles being stabbed into them.

16. Lists have become an absolute necessity in life because I can only remember about three things in any one category. Any more than three, and I'm going to either forget some or all of them. It's like my brain is a grocery store checkout aisle with a three-item limit. I generally have to write things down as soon as I think of them if they are part of a list that going to be checked off on a future date because my attention span is quite short. As for remembering activities around the house, I have to put things where I will easily see them so I won't forget to deal with them. For instance, most of my medication is in large pill minders strategically placed, papers that need to go downstairs are put in one large pile on the countertop nearest the staircase, and items that have to leave the house with me are either in or with my purse. My purse itself is organized so that every important item has a designated spot, enabling me to see right away if I am missing anything. Bills must be paid immediately so that they won't become lost or forgotten. "Out of sight, out of mind" isn't just a saying with me, it's reality. If I don't use a label on the dishwasher that says "clean" or "dirty", I'll put the dirty dishes in with the clean and vice versa. Despite my ritualistic organization, I still do odd things, like putting silverware in the trash instead of the dishwasher, pointing my car remote at the unlocked mailbox, and putting the phone book in with the food. Or I'll have a semi-correct train of thought with the wrong outcome, like when I reach for a dead bolt lock on the kitchen door where there is none, forgetting that the living room door is the one with the dead bolt. I often walk into a room and discover I've forgotten why I went there. Or I'll go into a room and realize I intended to go somewhere else. Another result of my short attention span is procedural difficulty. I'll begin doing something that isn't too complicated, like taping a television show, and forget how to do it part way through. I often find myself speaking aloud, blurting out suggestions until I come up with one that sounds right and then talking my way through the rest of the procedure until I have completed it successfully. I am more likely to get something right if I sort it out verbally than if I just try to visualize how it's done. I feel as though I am a train that is traveling on defective or missing tracks, easily and frequently derailed. I am usually an excellent decision maker, but when I get derailed, my brain just seems to freeze up, and solutions to problems evaporate.

17. A lot of day to day activities that most people do automatically are either difficult, impossible, or too fatiguing for me to bother with. A simple shower can throw off my whole day, either exhausting me to the point I have to collapse on the couch or even making me feel faint, the effects of which will likely last until bedtime. If I have to leave the house, I usually skip the shower as a precaution and wait until I have no more commitments for the day. Sometimes if I am particularly unwell I don't take one at all. Getting dressed won't happen on a bad day. I generally don't have the energy anymore for fixing my hair, putting on makeup, shaving my legs, putting on complicated outfits (like dresses with pantyhose) or putting on lotion; these things are done only rarely now.

18. There are very few household maintenance activities that I can do unassisted. I am pretty much limited to daily dishes, sorting the mail/light clutter, and putting away my own clean laundry once it is brought upstairs. I must rest after about 15 or 20 minutes of activity; if I push too hard, I will become too fatigued to accomplish anything else that day and may have an exacerbation affecting subsequent days. I have very little grip strength in my hands and experience inco-ordination when I fling or drop items. I must avoid any sort of scrubbing or excessive reaching as these cause repetitive motion injuries such as carpal tunnel, hand cramps and back spasms. I generally limit how many times I use the stairs as I can get weak, dizzy or even faint. Squatting causes my feet to go numb. I cannot do any yard work. I cannot tolerate the smell of certain household products; prolonged exposure to them will cause migraine, burning sensation going all the way down my throat, cough, sensation of heaviness in chest. The smell of smoke will produce similar reactions.

19. I try to exercise my brain daily by watching quiz shows and attempting to answer the questions before the contestants do. My response time is much slower than it used to be. Often I will know the correct answer but will not be able to access the information in my head. Or I will say one thing when I mean another. And then there are times that I will just blurt out the correct answer and have no idea where it came from or that I even knew that particular fact. I fare far worse when learning new information, especially if I don't use it immediately and frequently. For instance, I bought a digital camera that had manual settings so I would have more photography options. I read the instructions over carefully and felt fairly confident about using it. However, a few days passed before I was actually able to try it out, and I discovered I had forgotten everything in the instructions, so I had to get them back out and read them again right before using the camera. I never was able to learn how to use the manual settings, and three years later, I still have to teach myself how to use the automatic settings every time I try to take pictures. Some information that I was able to remember easily before I got sick is now impossible for me to recall, like phone numbers of loved ones, their birth/death dates, etc.

20. Even activities that most people would normally find relaxing, like watching a movie, cause me mental and physical fatigue. When I am too mentally slow to even follow a simple plot, I will switch on the tv to something I have either seen before or that requires no real thinking, turn the volume down and only half watch it. Or I will flip through a magazine that is mostly pictures and doesn't require any reading comprehension. But even sitting on my couch has to be limited to no more than a two hour session as stiffness and soreness in my muscles and joints will worsen when confined to the same position. I will periodically get up and get something to eat, put a few dishes away, alternate reclining my feet and regular sitting or stretch while on the couch. But I cannot lie down flat before bedtime as it will impede my digestion and aggravate my reflux and cause nausea perhaps to the point of vomiting. Other causes of mental exhaustion include strong emotions, either positive or negative, or thinking really hard about something. I think I get mental overload, perhaps from adrenaline? I am willing to risk a certain amount of mental fatigue for laughter and excitement as they are essential to quality of life, but I do limit how much emotional investment I give to negative stress. I acknowledge the negative, perhaps express how I feel about it, and then either try to figure out if there is something I can or should do about it or go on to something else. I unfortunately have had to give up a lot of social interaction with friends and relatives because I no longer possess enough mental energy to focus on having good quality relationships with them. This doesn't mean I don't care, it's just that I have to keep my relationships low maintenance along with everything else.

21. There are times when I have no indication that I have over-exerted myself in any way until hours or even a day or two has passed since the over-exertion occurred. It is very difficult to pace my life when I don't know how much is too much. In addition to the exacerbation in exhaustion, I will experience a huge surge in pain and a marked increase in cognitive dysfunction that may persist into subsequent days. And then there is what I call "the sledgehammer of fatigue", in which I go from a fairly steady energy level to zero, with no discernible cause at all, as suddenly as if someone conked me out with a sledgehammer. I'll feel as if I were a working electrical appliance that was suddenly unplugged. When the sledgehammer hits, I have to stop whatever I'm doing immediately, go straight home if I am not already home, and collapse on the couch until my situation either improves or it is time for bed.

22. My body's thermostat appears to be broken. When I feel too warm, my edema will worsen, I seem to have more trouble thinking clearly, and I can easily develop symptoms of heat exhaustion. I develop small fevers for no apparent reason. I have Raynaud's in my hands, feet, nose and ears, so even the slightest sensation of being cold will make these areas become icy to the touch. Prolonged exposure to cold will cause these areas to turn white and burn painfully. My fingers will also turn blue. When I warm up again, these areas will turn bright red. My right hand seems most adversely affected by Raynaud's. My perception of being too hot or cold doesn't always coincide with reality. I can catch a chill when it's 80 degrees or feel feverish when it's 65 degrees. The worst culprits are excessive indoor heating or air conditioning. If I'm outdoors when it's 90 degrees and I go into a room that has been artificially cooled to 70 degrees, my Raynaud's will kick in. If I'm outdoors when it's 40 degrees and I go into a room that has been artificially heated to 75 degrees, I will sweat, become irritable and feel as though I've been poisoned. Excessive heating and air conditioning also cause congestion, burning and itching in the throat which can turn into something resembling a cold/flu and last multiple days. There are times I am both too warm and too cold at the same time, sweating and shivering with no way to get comfortable, a feeling I can only equate to having a fever during the flu. My base body temperature is low, averaging only 97 degrees.

23. I have had episodes that resembled a stroke. In these episodes, I got a sudden, dagger-like pain on the right side of my head, starting at the top of my skull and going straight down through my head. I would develop all the usual migraine symptoms including sensitivity to light and sound, vomiting, etc. These were accompanied by slurred speech or inability to speak altogether and great difficulty with cognitive function, as though I were trying to think through mud. I also developed persistent weakness in the legs and/or dramatic increase in peripheral neuropathy with stocking and glove numbness. Sometimes these would only be on one side of the body. These episodes have lasted from a few weeks to months on end with the symptoms fading away gradually. I have noticed that these are more likely to occur during late spring or early summer and that the symptoms increase with exposure to heat, but I cannot honestly say whether hot weather causes them.

24. I have two kinds of insomnia. The first is delayed sleep onset, where it will take me an hour or more to fall asleep after climbing into bed. I am usually too fatigued to do anything even if I am not actually asleep, so I simply relax the best I can and wait for sleep to come as I know it will eventually. I can always tell when I'm about to fall completely asleep as I will develop a body wide chill. Usually the last thing I can remember before dozing off is pulling the covers all the way up to my chin. There are times that right before I go into actual sleep that my entire body will suddenly jerk violently like I've been startled. Sometimes this will be significant enough to put me fully back into wakefulness, and I'll have to wait again to doze off. Other times, either with or without the body jumping, I'l yell out something incomprehensible. The other type of insomnia is when I'll wake up after a few hours, usually because of nocturia and/or night sweats, and then I won't be able to go back to sleep. I find that doing as little as possible to rouse myself for the potty breaks, such as leaving the overhead light off and only using night lights (trying to move in complete darkness unfortunately exacerbates my vertigo), using not even one more step or gesture than necessary and thinking about what I was just dreaming to help somewhat. For the night sweats, I shove the comforter aside but keep it within easy reach for when I become chilled again. I also have periodic limb movement disorder, uncontrollable spasms of the arms and legs during sleep, and this causes me to awaken or become nearly awake frequently. I wear an eye pillow when in bed so that when I do wake up, I can't look at the clock, and because all light is blocked out, it fools my brain into thinking it's the middle of the night (even when it's not), making it easier to go back to sleep. I have frequent, unusually vivid dreams and nightmares with recurrent themes such as trying unsuccessfully to go back to work. If I am in a significant amount of pain while trying to sleep, I will often dream about the pain, like the other night when I had a lot of hand pain and dreamt that my fingers were being sliced with a box cutter. Because I must spend so much time in bed, I must use the most comfortable mattress and pillows possible, the memory foam kind. The skin on my face is so sensitive that pillowcases seem scratchy, so I must put a velour towel over my ergonomic neck pillow. If I have to sleep on anything other than my foam mattress, I will awaken the next day feeling deeply bruised on every body part that touched the mattress. Sometimes this bruised feeling will last most or all of the rest of the day.

25. Other random symptoms:
• low blood pressure readings, as low as 80/60, when my average is usually about 120/80
• slow pulse, as low as 50 beats per minute when my usual resting heart rate is 70
• itching, spasms deep in ear canal
• attacks of body wide skin itching
• frequent sore throats, feeling like I'm coming down with something
• swollen, painful lymph nodes in neck
• hair loss
• sudden attacks of feeling weak and wobbly for no apparent reason
• chronic fungal infections of the sinuses with a yellow furry stripe down the center of my tongue
• if I catch someone's cold or virus, I'll be much more symptomatic for a much longer period of time than the person who had it before me
• severe spasms of the left side of my neck that cause me to be unable to turn my head
• extreme tooth sensitivity; will experience this even a year after a root canal
• chronic mouth lesions
• incontinence from sneezing, coughing
• frequent rashes, especially on arms and face
• splitting and peeling of skin, especially on fingers and lips
• weight loss and/or gain seemingly unrelated to diet/activity level
• adenomyosis
• TMJ type pain
• pain reaction in all 18 fibromyalgia tender points