I Got 99 problems and a B!@#% Ain't One, Or What is Chronic Fatigue Anyway?
A lot of people ask me that. How lucky they are to not be acquainted with the world of nebulous diseases. Chronic fatigue syndrome is what I choose to call my condition for convenience. I have been diagnosed with it officially, but I have to stretch the symptom checklist a bit to fit me. Like our myriad psychological diseases, chronic fatigue is simply diagnosed by how many symptoms you have on a checklist. If you have one too few, you don't have it.
CFS doesn't have a definitive test or biomarker like diabetes or cancer at this point and therefore isn't a “real” disease in the eyes of many. It falls into a category with fibromyalgia, multiple chemical sensitivity, and chronic Lyme, diseases that are most likely, on a standard doctor's visit, to garner you a blood test for anemia and vitamin D deficiency, and flippant prescription for anti-depressants/anti-anxiety medication without even so much as a recommendation to see a therapist.
Some suggest the name should be officially changed to something more appropriate like chronic fatigue and immune dysfunction syndrome (CFIDS), and that the checklist should be altered to more appropriately reflect the common symptom clusters. That will do some good in getting us sufferers more help and respect and disability funding, but the truth is, if you're relying on medical insurance and what the typical MD is doing to diagnose and treat this stuff, you're in big trouble.
But if you are seeking irrefutable evidence, and can pay out of pocket, it shouldn't be hard to come up with a bevy of tests to prove your suffering. Testing is a rabbit hole all onto itself because test quality varies widely and sometimes you'll need multiple tests on the same issue to get a clear answer. But most people if they doggedly pursue the testing route with skilled naturopathic doctors, holistic M.D.s, functional medicine practitioners, or by ordering themselves off the internet, will find plenty of real biomarkers like thyroid problems, adrenal problems, parasites, viruses, heavy metal toxicity, MTHFR mutations, pyrolurria, gluten intolerance and food allergies, hypoglycemia, mineral, vitamin, and fatty acid deficiencies, neurochemical imbalances, autoimmune diseases, SIBO, or all of the above.
One reason I don't take the testing too seriously is because the testing I've done indicates I have most of those things, so I just sort of assume I have many more I don't know about. Clearly we are dealing with a whole system breakdown, and testing doesn't solve the problem of what is the best plan of attack. Do you ever walk into the supplement aisle at the natural foods store and think, “I could honestly probably benefit from every single one of these?” I do. My liver needs help detoxifying. My stomach needs help digesting. My immune system needs regulating. My adrenals need support. My ladyhormones need balancing. I need anti-oxidants and anti-inflammatories and on and on.
Where can we get the most leverage when there are so many things wrong? I honestly could never figure it out, and just kinda tried a shotgun approach, or one thing after the other, rapid fire, looking for any signs of improvement. But as I mentioned in my recent post, A Metaphysical Approach to Diet and Nutrition, Guru Kevin is convinced the point of leverage, at least for me, is in the gut, so gut healing is where I'm focusing all my physical efforts, and it is a bit different than the other times because with someone to support and guide me I'm willing to go months spending money on the supplements even if I can't tell the difference. The people who really know a thing or two about these long-term illnesses say gut healing can take up to a year.
Below I've listed my symptoms. Probably about 1/3 of these symptoms started in my early life prior to CFS (which I developed at age 18), but I didn't recognize them as indicative of anything serious. Probably another 1/3 are vaguely improved or controlled by the lifestyle changes I've made in the last couple of years including diet and healthy relationship choices. The only things that have really worsened in the last two years are my right hip pain and my ultra sensitivity to stuff like chocolate and toxic chemicals. Otherwise its been a pretty steady ride with only a few ups and downs.
People always get upset with me when I try and list all my symptoms for them. They think I'm being neurotic and making mountains out of molehills, and that everyone has these problems. Well, sure, I had to break some of the problems down into sub-problems to get ninety-nine for comedic effect, but guess what? There are tons of unhealthy people in the world, I don't want to be normal, I want to be healthy. When you put a bunch of small symptoms together, they indicate something pretty big is going on.
Also, the only reason I do it is because this is an invisible illness. I look pretty good. I act pretty normal. No one will understand what I'm dealing with unless I tell them. Some people confuse expressing the facts of the matter with dwelling on the problem or being negative and therefore manifesting the problem itself, as if the only reason I still have this is because I keep focusing on it. Sorry, but what those people are advocating I do instead is called denial.
My Ninety-Nine Problems
- Chronic fatigue. Level varies but I am never not at least a little bit tired, from the moment I wake up 'til the moment I go to bed.
- Chronic roaming pain in neck/back every minute of everyday for last 15 years (I call it my hungry ghost. It feels like it's gnawing on my flesh. If you work on one place it simply runs away to another place).
- Muscle knots in back and shoulders that do not respond to massage, trigger point, or relaxation techniques, worsen with working on the computer, any kind of upper body exercise like push-ups, lifting heavy objects, or wearing a backpack.
- Dysthymic depression, rarely suicidal, just steady low-grade depression (sadness, guilt, low self-esteem, trouble making decisions...).
- Ahedonia, never ever feel truly happy, sort of mildly pleased at best.
- Stress intolerant, no resilience, stress cup already overflowing all the time. Even positive events like falling in love have a negative effect on aspects of health.
- Social anxiety (stronger in youth, lesser now).
- Generalized anxiety (less in youth, stronger now).
- Infrequent existential anxiety, explosions of heat and nausea in chest due to incomprehensibility of existence (starting in youth, dormant now).
- Derealization/depersonalization disorder, familiar things begin to feel/look disturbing and surreal, reality feeling matrix-y, uncertain of continuity of identity (triggered by drug use, more or less dormant now).
- Inability to ever feel truly safe and relaxed, used to be able to breathe out tension prior to CFS, can't now, just stuck in constant fight or flight mode (complex PTSD).
- Panic attacks only in the very specific situation where I am biking with someone and start to fall behind (easily prevented by not biking with anyone).
- Mild chemical sensitivity, can't handle artificial fragrances, new car scent, stanky plastics, cigarette smoke, occasionally get triggered for weeks by something like working on my car and can smell everything everywhere and it all burns my nostrils.
- Pinchy nerve pain in right hip area, always hard to stand in place and do household chores, sometimes hard to walk/hike (that hip has been problematic since I was a teen but I only developed this seriously and unremittingly in the last year or so along with right shoulder pain.
- Entire right side is weaker and droopier and more problematic than left side of body from head to toe, feels as if lacking in vital energy flow, while left side typically feels much clearer.
- Occasional joint pain/stiffness (worsened by chelation therapies presumably due to them stripping minerals from the body).
- Lifelong orthostatic intolerance (when you stand up fast and you get faint and dizzy).
- Chronic cracking and popping of vertebrae (every few minutes) and grainy, gravely/sandy sounds in neck and back.
- Right jaw gets dislocated (esp. when I ehomp down on a cherry tomato or make funny faces during sex! Can't open mouth. It is annoying!)
- Get so sleepy after showers (or baths) I can't take them except before bed, definitely NOT a morning wake-up routine.
- When I get a cold or flu it tends to last a week, not a few days.
- Exhausted, shaky, and very cold after experiencing intense emotion, like a fight.
- Drained and exhausted after most healing procedures and anything that makes me cry, hard to go to appointments alone or far away from house (therapy, energy work, massage).
- Usually quite tired between 1-4 (12-5) pm, will definitely fall asleep if reading.
- Can't really meditate or do any kind of guided imagery without falling asleep and/or getting stuck in an unpleasantly unalert state after it has ended.
- Can't shake off the grogginess upon waking if I nap during the middle of the day. I feel drugged and a bit dizzy on half-processed sleep chemicals, or stuck in the wrong brainwave state.
- Disturbing calcified lump on right knuckle (but doesn't hurt).
- Occasional rashes of various sorts, scaling around mouth.
- Painful cracks in corners of lips at times.
- Mild tinnitus in right ear (lifelong).
- Can hear electricity and other annoying high frequency noises (lifelong).
- (Over)sensitive to music, noise, fluorescent lighting, bad lighting, crowds, traffic, cities.
- Feet hurt and get tired of standing easily, hardly ever have both feet flat on the ground, it creeps me out.
- Easily dislocateable left shoulder. I Injured it skateboarding at age 19, and have dislocated it a dozen or so times since. Seems to only dislocate when in bad situations/relationships. It is very painful and traumatic each time and doesn't just pop back in by itself. I avoid lifting that arm over my head, and all activities where I might fall down. I can feel it almost come out sometimes and it makes me quite nervous.
- Stomach ulcer/gastritis, must never let stomach get too empty or it really hurts (since age 15 or 16. Undiagnosed, but almost certainly that is what it is).
- Wake up every single night to pee, light, poor-quality sleep.
- Confirmed high nighttime cortisol levels on multiple spit tests.
- Classic hypoglycemic/cortisol spike awakening around 3 am. Often can't get back to sleep for at least 2 hours.
- Occasional difficulty falling asleep, both when worried or if I get excited/have more energy than normal, and sometimes just because.
- Tendency to get overstimulated/overexcited/obsessive and disassociate from body when I get into certain activities I like. Difficulty forcing myself to stop and maintain regular healthy eating/sleeping/exercise patterns.
- Night sweats during sleep if I eat the wrong thing.
- Cold spells followed by hot flashes during sleep. Nightly.
- Red blood cell abnormalities consistent with B-vitamin deficiency anemia but not responsive to B-shots and supplementation.
- Low overall white blood cell counts.
- Headaches, usually sinus or neck tension related.
- Sinus congestion/tender sinus points/chronic post-nasal drip (relieved by eating my current very limited diet).
- Chronic swollen glands in throat.
- Chronic swollen tonsils, esp. right side.
- "Crimson crescents" on back of throat (bright red tissues) indicative of CFS.
- Some gaseous indigestion, esp. when eating while tense, like when hanging out with people.
- Frequent UTI's with sex (but less if partner is a mellow person, don't respond to any medications or treatments, just have to drink water and wait it out).
- Cystitis, bladder/urethra starts burning when even mildly dehydrated.
- Have to pee a lot, even when not drinking a lot.
- Chronic low-grade vaginitis, makes sex slightly painful.
- Some numbing of sex organs, not as easily orgasmic as earlier years.
- Occasional full-on itchy yeast infection.
- Nausea and depression/intense sadness after sex, sometimes during (esp. after orgasm, has to do with energetics, not partner. More intense sex=more intense nausea).
- No longer get sex afterglow or post-exercise mood boosts. Endorphins must be too burned out.
- Visual snow (static-y field of vision full of tiny moving white dots like a snowy TV screen). Since youth, don't really notice, except when worse/thicker after drug use or lack of sleep.
- Nausea if I've slept less than 8 hours, or had longer but interrupted sleep, as if nighttime detox cycle doesn't complete (often accompanied by a weird sensation that the body is intensely vibrating upon first awakening).
- Extremely high lead levels in urine chelation test, off the charts.
- Antibodies indicating active infections to at least 5 opportunistic viruses including Epstein Barr, HHV5, Parvovirus...Don't worry they aren't contagious. These germs are everywhere and they only affect people with compromised immune systems.
- Chronically cold feet.
- Hemorrhoids (only swell up and hurt sometimes).
- Tendency to feel colder than the average person, always need blankets, heat up high.
- Weather sensitivity. Feel depressed with sudden drops in air pressure or sickly with sudden drops in temperature. Do very poorly in wet, clammy weather.
- Find air travel especially stressful and nauseating, body doesn't like the extreme changes, the roaring jet engines, the recirculated air, the sardine-like seating, the atmosphere of the airport...and I can't even look out the window because I have to sit in the aisle because I have to pee so often!
- Sometimes, especially when sleeping outdoors, my back muscles seize up during the night and I can't breath very well. I used to really love camping, now I have mixed feelings about it.
- Bouts of low-grade feverishness or low-level inflammation like my blood is burning or my lymph is congested, lasting in the past for months, or weeks, but now usually just hours or days since dietary reform.
- Increasing intolerance to small amounts of caffeine, alcohol (can't even drink kombucha or eat chocolate, or do a weak version of those coffee enemas so many people rave about).
- Get electrical shocks that other people can't feel, from appliances, then they think I'm crazy.
- Large cysts in right breast (see what I mean about this right-sided thing?) and overall fibrocystic breast tissue.
- Cramping, headaches, boob soreness, irritability, just feeling under the weather and having a very low vibration during period.
- Can't smell weed being smoked without anxiety and having to run out of the room (oddly, after an overdose eating it).
- Chronically hungry, hard to stay satiated for more than an hour.
- Hunger really ramps up in evening, and stomach turns into a black hole, so that around bedtime I am the hungriest I've been all day, yet have nothing good left to eat.
- Food sensitivities to wide range of foods and common additives like lactic acid and citric acid, cause immediate phlegm reaction.
- Allergic to cashews and mango skin (cashews cause itchy butt, mango skin causes itchy mouth). I don't know about mango but the cashew thing only developed only after eating a lot of them as a raw foodist.
- Bleeding gums, pretty much every time I brush my teeth.
- Weak fingernails, fingernail ridges, white spots (lifelong).
- Dark purplish circles under eyes, (lifelong).
- Weak breakable hair, split ends (lifelong).
- Drained, lifeless look in eyes/sunken eyes (called sanpaku in Japanese, a sign of adrenal burnout).
- Flat affect, a speaking voice with little emotion, tendency to sound sarcastic (like Daria, or Aubrey Plaza). That's what they always write on my chart at the doctor, anyway.
- Largish amounts of hair fall out in shower (compared to very little when I was taking thyroid hormone).
- Scalloped tongue, indicative of qi deficiency in Chinese medicine.
- Mild acne/backne (improves with dietary quality).
- Greasy skin and hair (indicative of hormonal imbalances).
- Very mild irritable bowels, very sensitive to supplements and hot foods, but typically go once a day. Usually on the loose side and raring to come out first thing in morning and hard and sitting low in rectum but not going anywhere by evening.
- Mild but chronic athlete's foot, mostly on left pinky toe.
- Slightly underweight with inability to gain weight when eating massive calories.
- A chronically suspiciously painful and tender spot if you press in to the right of my bellybutton.
- Moderately bloated belly. I didn't notice this until I changed my diet. It stays more flat now.
- Excessive fatigue after eating, worse with carbs.
- Charlie horse leg cramps, on and off.
- Pelvis tilted wrong so one leg is higher than the other, won't stay in place with chiropractic manipulation, muscles just pull it back out of whack.
- Tooth grinding/jaw clenching. Teeth are pretty worn down. Used to be a lot worse, never hurts anymore.
- Can't stay in one position very long, or in bed all day, constantly squirming and moving, tend to need cardio exercise to force bloodflow and keep from feeling stiff and stagnant and yucky even when quite ill.
- Occasionally very sensitive areas of skin, light touch feels like rough sandpaper.
So now you know what all is wrong with me, and what I have to deal with on a daily basis. From my perspective it's clearly your basic adrenal burnout, nothing too mysterious. But what actually caused the burnout, what is a secondary symptom of the burnout, and what will heal it remain to be seen. I know a list like this is going to prompt 99 heartfelt suggestions of remedies to try, and I accept that. I probably won't do any of them because I already have a multi-faceted healing plan in place, but to beat you to the punch I've prepared a second blog post of things I have tried. View it here.
A Few Things Right With Me:
Here are a few random things right with me just to brighten the mood! Of course there are a lot more but that isn't the point of this post.
- Don't have any cavities, fillings, jaw infections, never had braces, and have all my wisdom teeth. Never have required any dental work beyond cleaning.
- Good sex drive, despite all the other problems in that area.
- I see a violet flame when I'm in a more alpha state (eyes closed, or open) don't know what that means, but it's kinda cool, I guess.
- I do not have iron deficiency anemia.
- I'm a really good lucid dreamer.
- Normal body temperatures: 98.6 average.
- Still really mentally sharp, excellent memory, rarely get brain fog.
- Can temporarily exhaust myself but do not get post-exercise malaise to the point of being tired the next day or days or easily become ill from “overdoing it” (a common CFS diagnostic marker).
- Do not sunburn easily.
- Do not attract or react excessively to mosquitoes.
- Blood pressure typically normal: 120/80.
- Strong muscles.
- No seasonal or pet allergies.
As for 99 Problems Ice-T did the song before Jay-Z.
XOXO, -Emily, The Super Sensitive Human