Disclaimer: If you’re a hypochondriac do not read this article, you have enough problems without adding this to your miseries, hypochondria is problem enough on its own and just dealing with that is enough for anyone.
The hardest thing about fibromyalgia aside from having it in the first place is getting the diagnosis in the first place; there are reasons for this, fairly equal split between the patient and patient. Doctors treat what is in front of them, so don’t fall into the trap. Trap, you ask? Yes, trap. As I said, doctors treat what is in front of them, so if you go in for sleep problems one time, cranky digestive tract another and rashes another, the doctor is going to look at each of these independently. They have a few minutes to see each patient and getting you out the door and another onto the freshly dispensed paper of the exam table is how they pay their bills. Well, that and stealing out of date magazines for their waiting rooms.
So, when you go in, you need to go in armed with a list of everything that is wrong with you, and the list needs to be complete. Facing a doctor on a schedule when I had my first migraine I diagnosed with a stomach virus and sent home for three days bed rest. I told him the basics, I had a screaming headache and was throwing up, and once he made his diagnoses he explained that the dancing lights were a symptom of being dehydrated. I didn’t really notice that half my face was numb, but if I’d have mentioned it he’s have jumped past the other symptoms and checked me for a stroke, then backed off to migraine when I passed a few simple tests. So, an IV for the dehydration loaded with anti-nausea meds and I was so loopy I didn’t care what was actually happening. Half the problem was a doctor with a 15 minute patient window; the rest was me not accurately describing what was happening.
As I’ve mentioned before, I went through around seven years of symptoms that were individually treated before my wife mentioned that all of these things had to add up to something, so I made a list of everything I could remember going on over the past few months, and I got lucky and had a young doctor fresh out of medical school that got to play House and dig though my records and then the testing began. You have to eliminate other things in the process of a FM diagnosis, sleep apnea, Lyme Disease, Lupus, and digestive parasites and viruses to name a few. This calls for testing. Lots of it. Its not fun, its not pretty but be ready to donate samples of all sorts of bodily chemistry.
The first thing you’ll find is that you hurt. The pain can be mild and it can range up to screaming, but something is always achy and its not restricted to just one part of your body. Its an all over hurt. As I’ve mentioned many times, Fibromyalgia is a complex word: Fibro = fibrous tissues meaning tendons and ligaments, my = muscles and algia = pain. The main complaint of FM patients is body pain. You notice it more in places that bend, joints; but, its all of the tendons and ligaments in your body aching. These are the things that bind muscle to bone and hold joints together, so while arthritis affects the inside of a joint, FM goes after the connective tissue that holds you together.
It really doesn’t come and go, FM is a chronic condition so in time you sort of get used to hurting, the human body can get used to low pain in time. Actually, that’s simplistic, your pain threshold might raise a little, but hurting every hour of every day adds up on you in time. It’s a vicious cycle, pain keeps you from deep sleep, which is where the body heals and purges out all of the bad chemicals your body accumulates during the day, like lactic acid in muscles. A good way to look at it is you always feel like the day or two after hard physical work. The second half of the vicious cycle is that even if you can ignore constant pain, your body always knows that its there, and that will start to wear on you emotionally after a while.
So, to your list, if you have constant pain in all parts of your body, problems sleeping and moodiness or depression, write this all down and describe it as fully as you can.
A note for males, yes I know that its not “manly” to whine about pain and emotional stuff. Crawl out from under the rock Mr. Flintstone, this is the 21st century.
So, first the quick and dirty lists of Symptoms, Physical Conditions and Mental and Emotional Problems, if you read my FM stuff, you’ve seen these lists before, but the final list is updated:
Sleep disturbance, stiffness, increased headaches, facial pain (Temporomandibular joint dysfunction), Irritable Bowel Syndrome and abdominal discomfort, paresthesia (numbness and tingling in the arms, hands or feet), Raynaud’s Phenomenon (cold hands, feet, ears or nose), skin problems (rashes, hives, dry or blotchy skin), sensations of swelling, chest pains (costochondralgia or muscle pain which occurs where the ribs meet the chest wall), cognitive disorders (difficulty concentrating, memory lapses), depression and anxiety (as a result of the chronic pain associated with fibromyalgia).
Allergies, bruising, clumsiness, dizziness, dropping items, dry eyes and mouth, feelings of swelling, hair loss, high or low temperature, irritable bladder, irritable bowel, lack of stamina, migraine headaches, mouth sores, muscle spasms, nocturnal myoclonus (restless legs), numbness and tingling, photophobia (sensitivity to light), skin itch, mottling, rash, sleep apnea, sore throat, morning stiffness, swollen glands, tender lymph nodes, tension headaches, visual changes and eye pain.
Mental and Emotional Problems:
Anxiety, confusion, mood swings, irritability, memory blanks, panic attacks, work mix-ups, trouble concentrating
Now is the expanded list; I caution you, gentle reader, I’m going to try to keep this from getting gross but I can’t help it in all cases. So, grit your teeth and hang on for the ride, this is what I feel every day so reading it should be easier!
An Expanded look at symptoms and effects:
- Allergies and increased sensitivities to drugs: This is likely caused by the heightened sensitivity to the environment that comes with FM. I am a poster child of drug interactions. If it is supposed to make you dizzy I fall over, if it makes you sleepy, I’m out. I make it a habit not to read the warnings that come with meds till I’ve taken them for a few days on the off chance that I might psych myself into coming down with them. Allergies can be a pain, one say I wake up, grab clean clothes out of the drawer and then I break out in hives, so change to another detergent free of everything and wash everything that I own and hope for the best. Allergies also come and go, I developed hay fever and sensitivity to sunlight around the time I turned 40, what a pain in the ass. No, wait, pain in the ass is covered elsewhere.
- Bladder problems – Irritable bladder, increased or decreased urination frequency and something called interstitial cystitis, code words for (urgent and sometimes painful urination, general pelvic/groin pain or and the dreaded painful intercourse). Feeling like you have to pee when you don’t need to, not realizing you need to pee until you NEED TO PEE, and walking around feeling like you landed on the bar on a boy’s bike are annoyingly common these days. Ever tried to get your groove on when you feel like you’re most personal parts feel kicked?
- Brain abnormalities – fancy name is cognitive dysfunction and it means memory loss or intellectual inefficiency, about 70% have this ‘fibrofog’, and why some of us refer to ourselves as fibrofoggies. Part of the benefits to good healthy sleep is that the thinking parts of the brain get a reboot every night and all of the chemical products that cloud thinking and the effects of exhaustion are cleared out of your RAM. If you don’t get the sleep, you get the fog and this causes a lot of irritation when you snap at people who remind you about things that you swear up and down that they never told you in the first place. Invest on post it notes and if you have a smart phone, schedule everything and keep notes there too.
- Butterfly rash – About 15% get a reddish rash that can be confused with Lupus, and why that has to be eliminated as part of the diagnosis. It can come and go but some have it pretty constantly. Just get used to the itch, and be careful about bathing to soak sore muscles, this can make it worse.
- Chest pain and shortness of breath – You’ll find this affects 60-70% of fibromyalgia patients. This can be costochondritis, mitral valve prolapsed or both. Costochondritis is pain where the muscle and chest wall meet at the ribs, and this pain (mainly to the left side) can easily be mistaken for a heart attack, especially if mitral valve prolapse is happening at the same time, as that adds an episode of irregular heart rate and shortness of breath to the mix. I was in the ER twice for this and once in the cardiac intensive care unit getting a probe run up from my groin into my heart before the FM diagnosis finally explained what was happening.
- Cutaneous hyperemia – these are reddened areas on your skin, especially at tender points. It makes you think you have a bruise but it doesn’t bet the darker colors of a bruise. Since the happen at joints they’re easy to mistake for a sore spot from bumping something you don’t remember.
- Depression, anxiety and stress – if you don’t sleep well and always hurt then its bound to affect your mental state. If you’re tired and sore all the time its hard not to have some effects to your personality.
- Dizziness, inner ear disturbance, dizziness, balance problems, sensitivity to noise – Vertigo sucks, random dizziness, sometimes laying down helps, other times you get bed spins. Its not uncommon to get sick from this, stay near something you don’t mind puking into. You can’t walk a straight line, standing straight without weaving isn’t easy either. Noise can get really bothersome, you have trouble picking out one voice in a crowded or noisy place, you can get headaches, and you just want to be somewhere quiet.
- Dropping Things – Your coordination isn’t going to be what it used to be, lots of typos so be good friends with your spell checker, you’ll also drop things. Probably a lot; oh, and you’ll trip over everything, even painted lines.
- Dry eyes and dry mouth – aka sicca syndrome, it gets annoying trying to talk when your tongue sticks to the roof of your mouth and doesn’t want to let go. Chew lots of gum, because a dry mouth means a stale mouth and it’ll help produce saliva. Gum and eye drops are your friends.
- Ear complaints – (pain, tinnitus, hearing loss and/or stuffiness) Hearing loss is a hard thing to nail down for me, as is tinnitus, I worked on jet engines for a couple of decades, but I have hearing loss and tinnitus, I get ear aches and have to pop my ears a lot, and that hurts more than it used to.
- Extreme fatigue – This varies a bit from person to person, some are wiped out after doing very little, others are completely bedridden and can do next to nothing (15% of FM patients). Basically, ¾ of FM patients are fatigued by normal daily activity. To make it even more confusing, you can have better days where you can do more and other days when you can do next to nothing.
- Eye complaints – Changing vision, pain in or around the eye are common and there is also a type of migraine called an ocular migraine, which really screws with your vision, lights and weird flickering waves in front of your eyes. At least it doesn’t hurt, but can still make you puke.
- Headache – 60-70% of FM patients have migraine-type headaches. Most are on one-side of the head and have face pain or numbness and sometimes neck pain and even muscle spasms. It can be any type of migraine, and they all suck.
- Hypoglycemia – This is an energy crash, you can feel weak, nervous or jittery, tired, nauseous, and you might feel tingling in your hands and feet. Your body seems to be screaming for sugar or carbs and you’ll want it sooner rather than later.
- Intolerance to alcohol – 50% of FM patients find that their capacity to drink is lower than it used to be, drink with care. Seriously.
- Irritable bowel syndrome – This hits 39% of FM patients, abdominal wall tenderness, diarrhea and/or constipation. This one sucks. You’ll need to figure out what can trigger this in you or you won’t enjoy life at all. Tomatoes are my mortal enemy, I love them but even a squirt of ketchup on a burger can leave me a bloated, gut cramped bathroom dweller.
- Morning stiffness – No, this is not morning wood. ¾ of FM patients wake up stiff and have trouble moving around until they work out the kinks. I crack and pop like a box of tic tacs for a couple of hours.
- Mottle skin – This is blothy skin, discoloration of the skin without rash. It mainly hits the inner thighs and arms, it can mean bad things for veins or heart are happening, so get that checked.
- Muscle involvement – Not only can you feel tired all of the time; FM patients often have low ATP, which allows for the transfer of energy between cells, so about 80% manifest this though muscles degenerating because they can’t repair themselves as efficiently, this also causes muscle soreness and spasms. Spasms are common in the legs, back and butt, larger muscle groups. It sucks. Other theories are that spasms come from reduced blood flow, and as a result of pain itself.
- Nasal and sinus congestion – Sinus problems will be with you a lot, congestion, sinus pain, and even chest infections from drainage. There is a theory that FM can be “cured” with large doses of mucus reducing drugs, but this strikes me as fairly nonsensical.
- Nausea and/or vomiting – Pain can cause it, so can migraines, sinuses, vertigo, ears, and the list goes on.
- Nocturnal Myoclonus: Just when I’m about to fall asleep, my legs jump or jolt and I’m wide awake again. Annoying as anything. Restless leg syndrome can also be a player here.
- Numbness and Tingling: 70% feel numbness/tingling in the arms, legs, hands and feet, its called ‘parestheia’ and basically feels like the your hands or feet or whatever ‘fell asleep.’
- Pain – Widespread ache, it occurs over the whole body and can feel like that all over achy pain when you have the flu. It can fluctuate from dull ache to sharp pain but never goes away.
- Pain in all four quadrants – Widespread pain that hits 100% of FM patients and is mostly felt in shoulders, chest, arms, hands and upper back.
- Painful swallowing – It feels like everything has square corners and is going down sideways.
- Raynaud’s syndrome – Cold hands/feet, sometimes nose and ears, this is followed by the area feeling hot, then turning red and tingling. 20 to 30% feel this even somewhat. Nothing worse than beet red ears, people wonder why you’re embarrassed. This also leave hands and feet sensitive to things like hot or cold water.
- Sensitivity to hot and/or cold – Hot, and especially hot and humid weather makes you feel sick and cold weather leaves you stiff and sore. It hits about 98% of FM patients
- Sensitivity to the Environment: You can smell a smoker from across a room, noise, bright light, crowds, heat and cold are all very irritating.
- Skin changes – Dry skin, flaking and shedding skin like a snake, hair loss, painful peeling and splitting and cracking nails are all possible. This hits 70-80% and I notice it gets worse on my face and scalp if I let my hair grow out. I also loathe the razor, my face burns for days after I shave; so, I don’t. Lotions can make this worse.
- Skin Irritations – Itching, usually head to toe, this can be linked with skin irritations. Random rashes and hives are common, as is dryness or no signs at all. It can be exacerbated by hot baths, heavy clothing, medications (especially codeine,) even minor stress can bring it out.
- Sleep disturbance – 95% of FM patients have some form of sleep disturbances and reduced REM sleep.
- Sore throat, swollen glands, low-grade fever and night sweats – Random fevers, not fun, and they make all of the achiness that much more unpleasant. Its not uncommon to wake up a sweaty mess, just be careful of that morning shower, you might find it dried out your skin and lotions can make that worse.
- Spasms – This is mentioned separately because they address another underlying problem: muscle microtrauma. This is tearing in small muscle fibers, and is very common among FM patients.
- Swelling and subjective soft tissue swelling – Mainly in the hands and feet, but I’ve had my feet swell all the way up to my knees. This happens if I’m on my feet too long, taking time to rest, especially with your feet elevated can help this. subjective soft tissue swelling happens when part of you feels swollen, but there is no visible swelling. This is very annoying because it feels like something is going to split to relieve the feeling of pressure.
- Temporomandibular Dysfunction (TMJD) – About ¼ have facial pain, and this can be caused by or amplified by TMJD. You might feel pain while on chewing or at the front of the ear, tight facial/jaw muscle, trouble opening your mouth wide, clicking or popping while moving your mouth or chewing. It can even add to neck or shoulder pain. My personal favorite is when it pops and it feels like I was stabbed in the ear drum by a hot ice picks and you even feel what seems to be a hot rush of fluis, but its not really draining.
- Tender points – This is a major diagnosis tool as there are 18 points on the body that are sensitive to touch. Just the thought of getting a massage makes me flinch, there are some massage therapists that know how to treat FM patients, but they can be hard to find, good ones at least.
- Thyroid disease – 20-30% of FM patients have anti-thyroid antibodies, this is something that should be tested during diagnosis.
- Tooth complaints – Mainly sensitivity to hot and cold, but dry mouth can cause gum problems, see your dentist when you’re supposed to and get regular cleanings.
- Vision problems – i.e., photophobia – Gremlins aren’t the only ones that hate bright light. Among changes to vision you’ll find you better keep sunglasses handy.
- Weather – You’ll feel pressure changes that signal weather changes, also known as the human barometer. It can cause headaches, bother your ears and sinuses and even leave you feeling sick and rundown if it’s a major front coming in.
Basically, in order to be properly diagnosed or treated, consider this list and how the items on if affect you personally. Write it all out and take it in to the doctor with you, explain that you have the list because these are the things you actually feel, not a list you found on the internet. Do not take a copy of my list in and ask for treatment, for one thing it doesn’t describe how YOU feel, and once the doctor realizes you are describing how you feel in somebody else’s words, you go straight to the hypochondria pile.
Fibromyalgia is one of those things that really emphasized the phrase “Your Mileage May Vary,” what I feel another won’t. Not everybody has all symptoms, and not all possible symptoms are listed here, FM is different things to different people, some similar, others completely different.
© 2012, Tim Boothby. All rights reserved.