Tag Archives: pain management

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So, Why the Cane?

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Categories: Fibromyalgia, Tags: , , , ,

Interesting question came in the other day, and its a question that I get a lot so I’ll answer it and give a long-overdue update on the state of my health. First off, the cane comes from a variety of problems: my right ankle has a great big knot on the outside because I’ve blown it out a few times, the first and worst time was running over uneven ground in combat books doing something or another in a military fashion. Secondly, I bent my left knee backwards cooling down after a 5-mile run, and then did it a while later when I followed the doctor’s advice to stay off it for a few days and then start working my running distance back up slowly. Then I have a hip I tweaked somehow, it REALLY bothers me when I ride a bike but walking and standing annoy it too, but I mostly ignore that. Finally, I have arthritis in my spine, I hurt my back several times before I retired and it all sort of added up to make my back a sore and touchy subject. Without the cane, at the end of the day my upper back curves forward and the pain can be intense. Using the cane helps keep my back straight and keep the pain down to really bothersome. So, onto the rest of the stuff, namely the legion of afflictions that accompany fibromyalgia.

  • Abdominal cramps/colic: Colic, in case you didn’t know it, is gas. You figure out what causes it or you spend a lot of time with unseen hands practicing for their merit badge in knots on your inner workings. Not pleasant, the discomfort and the gas. I think I’m done mentioning gas, for the more delicate of my readers.
  • Aching jaws, especially when chewing gum: This was annoying as hell when I was chewing gum to quit smoking.
  • Anal/genital/perineal pain: Well, and we thought gas was unpleasant. Yes, I spend a lot of time feeling like I’d just been kicked in the groin. Sorry to the delicate readers, but that’s it in a nutshell, a throbbing ache punctuated by sharp pain right in the male-specific bits.
  • Appendicitis-like pains: This will freak you out, right up there with the symptoms like a heart attack.
  • Balance problems/staggering gait: Yeah, give up any notions of grace, you’ll trip, flounder, flail and drop stuff.
  • Bloating/nausea/abdominal cramps: Really, after I made the squeamish squirm already we have to go here? Its like colic and it sucks at all ages, especially since it is coupled with irritable bowel syndrome. Whoever Came up with that name has a talent for understatement, the bowel is not irritated, it is throwing a tantrum and has gas and matches.
  • Bruise/scar easily: Goes with clumsy. People with Fibromyalgia don’t heal quickly, or easily. Sometimes little things can take forever to heal up.
  • Bruxism (teeth grinding): I hate this. Badly. Especially since I had a bone graft in my jaw, and I’m about to get a second one.
  • Buckling knee: Yeah, blown knees (one rebuilt) wasn’t enough, now they do this. Usually when standing or bending the whole leg just collapses and there isn’t anything you can do but try and land softly.
  • Carbohydrate/chocolate cravings: Oh hell yes, if you don’t get the carbs your lips tingle and you feel weak.
  • Carpal tunnel-like pain in wrist (watchband area): This drives me insane because it makes working on pictures really painful. A smart person would step away from the computer, but I’m not that smart and I like working with pictures so you just deal with it.
  • Chronic cold symptoms (sore throat, stuffiness, nasal drip, swollen glands): Yeah, why bother getting the flu shot, I can’t tell the difference.
  • Confusional states: Especially in the morning, the fibrofog gets bad and I need time to get my thought processes herded up and going in the same direction. When I overdo things I get bad, I forget names, can’t remember how to navigate, it ain’t pretty.
  • Delayed reactions to “overdoing it”: Yes, the crash. Work hard to day, pay for three days. Work till you can’t any more and you’re in trouble for a week or two. It is exhaustion that reaches deep into you and makes even breathing tiresome.
  • Depression: Believe it or not, I don’t have a lot of problem with depression, I get short tempered.
  • Difficulty speaking known words: Oh yes, I lose words all the time, and then you fight to remember it and people look at you like you’re an idiot and that frustrates you and if you let it it just landslides and gets worse.
  • Difficulty swallowing: This is weird, but it can happen. Small bites or you can hurt yourself, and you notice that you tend to catch yourself trying to swallow saliva down the wrong pipe.
  • Diffuse swelling: For no rhyme nor reason, things will swell. My lower legs are the worst at it but it can be anywhere.
  • Directional disorientation: I mentioned getting lost, yeah, if I was a duck I’d fly north for winter.
  • Dizziness when field of view moves: Ok, you’re sitting at a red light and a car pulls up beside you, you see it in your peripheral vision and get a lurch in your gut because you can feel your vehicle rolling forward and step harder on the brake, by the time you get a green light your calf can cramp.
  • Double/blurry/changing vision: Glasses may or may not work, you may get a new prescription that works for a few days and then you have to go back to your old ones. Keep the new pair around though, things may change again.
  • Drooling in sleep: Oh this is horrible. I mean I get dry mouth when awake to the point I can’t speak or swallow but let me doze off and its drool…well, it ain’t pretty.
  • Dropping things: We mentioned clumsy above, but it really effects things like typing too. You’re just that tiny bit off.
  • Dry cough: Yup, not much to add to that.
  • Earaches/ringing of ears/itching ears: Yeah, loud ringing and the itching is maddening. I’ve used a bobby pin to scratch in there. I don’t recommend it.
  • Eyelid drooping: Eyes yes, heck the whole face can droop, I looked in the mirror once and it looked like I was having a stroke.
  • Family clustering (other members of the family have FMS): No, thank heavens. I appear to be the only one in my immediate family.
  • Fatigue: Tired like you wouldn’t believe.
  • Feeling continued movement in car after stopping: Addressed above, and its spooky.
  • Feeling tilted when cornering in car: Everything in a car can startle you. I drive, but its not always fun.
  • Fibrocystic breasts: Yes, I’m a male, yes I had to have a fibrous mass removed from my chest.
  • First steps in the morning feel as if walking on nails: Creaking, popping stiffness and painful, beats staying in bed though.
  • Free-floating anxiety: I’m not an anxious person really, but deadlines off in the distance bother me more than they should now.
  • Fugue states (staring into space before brain can function): Yes, brain revs but it won’t go in gear.
  • Groin pain: Yes, addressed above and we shared enough.
  • Growing pains in children and youth: No symptoms until my mid to late 30s.
  • Handwriting difficulties: Hand pain, coordination off, hand shakes. It all adds up.
  • Headaches/migraines: Flashing lights, sensitive to smells, light, noise. Face goes numb, believe it or not you get used to it, you just have to face the fact that you won’t be getting anything done until it passes.
  • Heel pain. Heel, then foot, then toes and up the ankles to the calves and to the knees and up the thighs and then it doubles bow in the “man pain” and if you let it get that far before you get off you’re feet, you’re done for a few days.
  • Hypersensitive nipples/breast pain: Lets just say that as long as everybody leaves my nipples alone there’ll be no unpleasantness between us.
  • Impotence: Impotence, not. But to be delicate, being turned on by the feeling like you’ve been kicked in the groin is not a fetish I can claim.
  • Inability to enter deep sleep; unrefreshing sleep: Your body is tired, so you go to bed and sleep, but you hurt so your sleep isn’t deep enough to put your body into the healing cycle, so you wake up sore and tired and this is a cycle you’d better get used to riding.
  • Inability to recognize familiar surroundings: I get the point, yes I get lost easy! Quit picking on me!
  • Irritable bladder syndrome: Pissed off bladder is too redundant, so yes, you feel like you need to pee when you don’t really and suddenly you really do and you feel like you’ll explode and you swear you feel the bladder tearing and it doesn’t but damn!
  • Irritable bowel syndrome: I hate this. There are foods that can really wreck you. To be delicate, your body advances things down the track, but it hits the end of the line and it sort of sits there and does nothing, so your gut ties itself in a knot because the tunnel and the exit are 180 degrees out of synch with each other. Add diarrhea, including the explosive kind, constipation and a churning and sick-feeling guy and you have the beginnings of the fun you’re in for. See, I handled that with some decorum.
  • Lax, pendulous abdomen: Huh, they found a name that sounds better than owning up to having a beer gut, cool!
  • Loss of ability to distinguish some shades of colors: Only when I’m having ocular migraines, this means a migraine without pain but all sorts of sensory confusion, especially vision.
  • Loss of libido (Loss of sex drive): Again, unless groin kicks turn you on, very little will some days.
  • Low back pain: And mid, and upper, and neck. I have problems added to problems here.
  • Menstrual problems and/or pelvic pain: Pelvic pain from irritable bladder, no menstrural pain, but I do feel bloated and cranky now and then.
  • Mitral valve prolapse: Yes, finally heard by a doctor as I take meds that can help mask it. Basically a valve in my heart doesn’t always work right and it can cause problems.
  • Mold/yeast sensitivity: Haven’t noticed anything with this one.
  • Mood swings: Yeah, happy to grumpy can happen quick, depending on circumstances.
  • Morning stiffness: Yes, and get your mind out of the gutter. You wake up stiff and sore all over and it takes a while to make things feel somewhat normal.
  • Mottled skin: And weird rashes. Mottles and rashes can come and go at will.
  • Muscle twitching (even in large muscles or muscle groups): Happens mostly in my neck and legs, but it can happen anywhere actually.
  • Myoclonus (muscle movements and jerks at night): Yeah, this can irritate the one that shares the bed with you.
  • Nail ridges and/or nails that curve under: Comes and goes, and it looks really weird.
  • Night driving difficulty: Sometimes.
  • Numbness and tingling: Here and there and everywhere and not always with any rhyme or reason.
  • Painful intercourse: Groin kick, try one on for size and get back to me on how your performance went.
  • Painful weak grip that may let go: I hate this, I have strong hands, but sometimes they just don’t want to hand and just up and quit without giving notice.
  • Panic attacks: Fortunately, not really.
  • PMS (Pre-menstrual Syndrome): Oh hell no!
  • Pressure of eyeglasses or headbands is painful” And hats.
  • Problems going up or down stairs: Yes, but you gotta keep doing it!
  • Problems holding arms up (as when folding sheets): I don’t like my hands over my head at all.
  • Rapid/fluttery/irregular heartbeat/heart attack-like pain: Yup, had a few fake heart attacks and even had the ride in the ambulance.
  • Restless leg syndrome: They are doing it right now, its like I’m giving horsie rides to invisible kids.
  • Sciatica: Pain or numbness and tingling in the legs and feet. Yup.
  • Sensitivity to cold/heat: Winter sucks about as bad as summer. I can’t get warm in winter and can’t shed heat in the summer.
  • Sensitivity to humidity: Makes me feel really sickly and makes breathing fun.
  • Sensitivity to light: Migraine trigger.
  • Sensitivity to odors: Migraine trigger.
  • Sensitivity to pressure: Migraine trigger.
  • Sensitivity to weather changes: Migraine trigger.
  • Sensitivity to wind: Migraine trigger.
  • Sensory overload: Migraine trigger.
  • Shin splint-type pain: Yup, hate them.
  • Shortness of breath; sucking air during exercise: Yup, leads back to humidity sensitivity and mitral valve prolapse.
  • Short-term memory impairment: I write notes and repeat things over and over to try and get them into long term memory, otherwise I can forget anything.
  • Some stripes and checks cause dizziness: Any pattern can trigger vertigo and make you feel sick and dizzy.
  • Sore spot on top of head:  Weird, but yes.
  • Stiff neck: Stiff to not moving at all.
  • Stress incontinence: Haven’t lost it yet.
  • Sweats: Like a pig.
  • Tearing/reddening of eye: Yup, alleries.
  • Tendency to cry easily: No, just allergy tearing.
  • Thick secretions: Snot, yes. If that’s not what they mean I don’t wanna know.
  • Thumb pain and tingling numbness: They feel broken a lot of the time.
  • Tight Achilles tendons: All the way up to my ears.
  • Tight hamstrings: Ditto on the up to the ears.
  • Tissue overgrowth (fibroids, ingrown hairs, heavy and splitting cuticles, adhesions): Had a fiberous mass cut out, toenails split all the time, ingrown hairs if I shave, so I don’t.
  • Trouble concentrating: Yes, which pisses me off because I used to be good at it.
  • Unaccountable irritability: Well, unaccountable to some, I seem to think there’s a good reason for it at the time.
  • Unexplained toothaches; shooting pains in gums and teeth: Hard to say since I’ve had to have surgery on my jaw and have another one coming up.
  • Upper/lower leg cramps: Leg cramps, check.
  • Urinary frequency: Hard to say, I pee a lot but so do most coffee and tea junkies.
  • Urine retention: Sometimes, like constipation but in the other system.
  • Visual and audio effects/falling sensations before sleep (called “sleep starts”): I definitely feel the drifting off more than I did years ago.
  • Visual perception problems: Depth perception? What is this thing you speak of? Normally its ok, but it can get interesting.
  • Weak ankles: Did I mention the big-asses knot on the right one?
  • Weight gain or loss: Oh yeah, both but mostly gain.

© 2013, Tim Boothby. All rights reserved.

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An Updated List of Fibromyalgia Symptoms

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Categories: Fibromyalgia, Tags: , , ,

Every now and then a new and more inclusive list of fibromyalgia symptoms comes out, this one has a bit more of the weather influences and actually discusses eyes and ears. This will probably be the basis for the new list I use for updates, which I should do more often.

  • Abdominal cramps/colic
  • Aching jaws, especially when chewing gum
  • Anal/genital/perineal pain
  • Appendicitis-like pains
  • Balance problems/staggering gait
  • Bloating/nausea/abdominal cramps
  • Bruise/scar easily
  • Bruxism (teeth grinding)
  • Buckling knee
  • Carbohydrate/chocolate cravings
  • Carpal tunnel-like pain in wrist (watchband area)
  • Chronic cold symptoms (sore throat, stuffiness, nasal drip, swollen glands)
  • Confusional states
  • Delayed reactions to “overdoing it”
  • Depression
  • Difficulty speaking known words
  • Difficulty swallowing
  • Diffuse swelling
  • Directional disorientation
  • Dizziness when field of view moves
  • Double/blurry/changing vision
  • Drooling in sleep
  • Dropping things
  • Dry cough
  • Earaches/ringing of ears/itching ears
  • Eyelid drooping
  • Family clustering (other members of the family have FMS)
  • Fatigue
  • Feeling continued movement in car after stopping
  • Feeling tilted when cornering in car
  • Fibrocystic breasts
  • First steps in the morning feel as if walking on nails
  • Free-floating anxiety
  • Fugue states (staring into space before brain can function)
  • Groin pain
  • Growing pains in children and youth
  • Handwriting difficulties
  • Headaches/migraines
  • Heel pain
  • Hypersensitive nipples/breast pain
  • Impotence
  • Inability to enter deep sleep; unrefreshing sleep
  • Inability to recognize familiar surroundings
  • Irritable bladder syndrome
  • Irritable bowel syndrome
  • Lax, pendulous abdomen
  • Loss of ability to distinguish some shades of colors
  • Loss of libido (Loss of sex drive)
  • Low back pain
  • Menstrual problems and/or pelvic pain
  • Mitral valve prolapseMold/yeast sensitivity
  • Mood swings
  • Morning stiffness
  • Mottled skin
  • Muscle twitching (even in large muscles or muscle groups)
  • Myoclonus (muscle movements and jerks at night)
  • Nail ridges and/or nails that curve under
  • Night driving difficulty
  • Numbness and tingling
  • Painful intercourse
  • Painful weak grip that may let go
  • Panic attacks
  • PMS (Pre-menstrual Syndrome)
  • Pressure of eyeglasses or headbands is painful
  • Problems going up or down stairs
  • Problems holding arms up (as when folding sheets)
  • Rapid/fluttery/irregular heartbeat/heart attack-like pain
  • Restless leg syndrome
  • Sciatica
  • Sensitivity to cold/heat
  • Sensitivity to humidity
  • Sensitivity to light
  • Sensitivity to odors
  • Sensitivity to pressure
  • Sensitivity to weather changes
  • Sensitivity to wind
  • Sensory overload
  • Shin splint-type pain
  • Shortness of breath; sucking air during exercise
  • Short-term memory impairment
  • Some stripes and checks cause dizziness
  • Sore spot on top of head
  • Stiff neck
  • Stress incontinence
  • Sweats
  • Tearing/reddening of eye
  • Tendency to cry easily
  • Thick secretions
  • Thumb pain and tingling numbness
  • Tight Achilles tendons
  • Tight hamstrings
  • Tissue overgrowth (fibroids, ingrown hairs, heavy and splitting cuticles, adhesions)
  • Trouble concentrating
  • Unaccountable irritability
  • Unexplained toothaches; shooting pains in gums and teeth
  • Upper/lower leg cramps
  • Urinary frequency
  • Urine retention
  • Visual and audio effects/falling sensations before sleep (called “sleep starts”)
  • Visual perception problems
  • Weak ankles
  • Weight gain or loss

© 2013, Tim Boothby. All rights reserved.

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Major Events and the Fibrofoggy

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Categories: Fibromyalgia, Tags: , , , ,

The top shots are a sample of the many great people that stopped by to have their picture taken during Fandemonium, the middle shot is the damage to the car. The car was totaled, but it did its job and my wife only had a bruise and a few aches. Last but not least is my beautiful granddaughter Kayley.

Among the advice that FM patients get is to pace yourself and avoid stress. Lets see, how did I do with that? I’d have to say that August was a failing grade for me, but I came through it all right I suppose.  So, to lay out the groundwork, what was my August like?

First of all I covered Fandemonium 2012, a local convention. I ran the photo room for the convention and that meant I was taking about 100 pictures per hour for a solid 8 hours a day, yes, about 2,500 pix taken. How busy was I, you ask? Well, at one point I was asked while occupied at the urinal how long before I’d be taking pictures again.  So yeah, that busy. Then for a few days after that I was frantically resizing pictures.

A few days later I woke up early to go to another photo shoot, my wife had to run out of town the day before for her aunt’s funeral, when I got a text that my daughter was in labor. So, I tossed my gear into the pickup and ambled the 60 miles or so to the hospital and was half a block away when the kid called to tell me she wasn’t dilated enough yet so they were sending her home. Fair enough, they dosed her up on Ambien so she would rest so I’d be no help anyway, so I went ahead to the shoot. A few hundred more pix later and I was getting back into the truck and I get a text when I get another text from the son-in-law that the kid was feeling like death and they were back at the hospital.

So, paying some heed to traffic suggestions…I mean laws…and I was hotfooting it up to the maternity floor. So, the waiting begins. The nurses were kind enough to show me where the coffee was and I was in business. Then I got to enjoy the spectacle of my daughter’s “Christmas legs” after her epidural. Yes, the Ambien was doing interesting things to her. That’s when I got the call that a lady had turned right in front of my wife and they’d hit at 55mph. So, I’m off and running, 60 mile round trip to get her and get back to see my brand new grandbaby.

Got home very late that night and could have cared less that the car was totaled.

So, we were knee deep in sorting out the car situation when my formerly trusty (very) old laptop finally detonated. So, one more thing to add to the mix, because that’s the computer I need for photos and websites.

Now I can sit back with some sense of peace and make the following observations. First that I didn’t do worth a flip at following the recommendations and conventional wisdom. Secondly that you CAN survive  lot of pushing, and a lot of stress; but, there are things you and I can do to mitigate these things.

  • Pace yourself and rest every chance you get, even if that isn’t often. I had an amazingly good photo assistant that kept an eye on me and reminded me to do things like sit down or eat.
  • Have your meds handy. I only have one a day type meds, but for a three day con I have 3 days worth in my bag in case I forget to take them at home.
  • Eat only safe food, especially if you’re prone to IBS. Self-explanatory.
  • Sleep as much as you can get away with. On a normal night I average 5 hours and a nap during the day. I got no naps, and managed to get about 6 hours a night.
  • Don’t wake up at the last minute and expect to run out the door. I have a real problem with fibro fog, so I need time to get my brain in gear. When possible I have somebody else and catch a nap if the drive will be long to get there. Early also means that I can sit and get my head together before the crowd shows up. People aren’t sympathetic when they show up to a photoroom and find the photographer dragging butt.
  • Fluids! I drink a lot of water and sugar free sports drinks during events, usually I’m working under studio lights or hot sunlight, and that means I sweat out a lot of stuff my body needs to function. Replenish! Also, many FM patients have a problem shedding heat, like me, so drinking cold stuff helps keep me from roasting.
  • In addition to FM pain I have arthritis, especially in my spine, so Tylenol Arthritis is my friend (in moderation.)
  • Be realistic! I know I can only go so long at this pace before I’m done for about a week. During that week I’m going to do things like live on the 2 hour cycle. Sleep for a couple of hours, be up for a couple and so on, until at last I’m on something like a normal schedule. If I am not careful I’ll hit that cycle too early and feel like death while I try and complete my obligations. I’m good for about three 8 hour days in a row, if I pace myself.

So, at the end of all of that I have a wonderful little granddaughter, the car and computer are both replaced, I’m obviously broke and life is getting back to normal. There’s nothing but common sense in my approach, basically the motto for pushing yourself hard when you have FM is that : If you’re going to do something stupid, do it intelligently.

© 2012, Tim Boothby. All rights reserved.

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Fibromyalgia: Learn What YOU Have.

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Categories: Fibromyalgia, Tags: , , , ,

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.

Anyway.

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:

Symptoms:
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).

Physical Conditions:
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.

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Major Events and the Fibro-Foggy

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Categories: Fibromyalgia, Philosophy, Tags: , , , , , ,

Ok, two cameras, digital video camera, notecards and pens, monopod, and enough batteries in my pockets to keep Adam & Eve in business for a month? Check!

It goes without saying that Fibromyalgia puts some limitations on your life, there, I said it; but, with that said there are things that you can do to reduce your limitations and enjoy things that make you happy. The beginning of August is a busy time for me, the first weekend of the month for me is at Fandemonium. It’s a local convention where the practitioners of geek-fu and nerd-kwan-do strut their stuff in full Technicolor glory. It’s the gathering place for fans of fantasy, science fiction, anime, role playing and tabletop games and video games let it all hang out and ignore the rest of the silly world in its mundane grayscale hues.

All of that in Idaho? You scoff? Yes, silly disbeliever, all of that in Idaho. After all, Idaho is the Firefly ‘Verse here on Earth. Think about that for a minute…

Every year I gather my merry band and we spend three days in the glory that is Fandom, covering events for two of my sites Red Zone Gaming and the Fantasy Artists, Roleplayers & Writers Guild. One covers gaming and the other is for writers, roleplayers and artists, and we photograph and interview everyone we can. But that doesn’t really come easy when you are a fibro-foggy. Three days that officially start at 10 am and end at midnight, plus setup time and travel, so it adds up on you in a hurry.

The first thing to do is eliminate anything stressful that you can. We plan for months ahead of time and when it’s “Go-Time” we just toss some rubbermade tubs in the back of my truck and head off to con. Stress is the physical and emotional tension that builds up in your body as you try and mountain climb over mole hills. Stress takes an ugly toll on your body so my advice to you is to spread the stress over as many weeks as you can before you even go.

Take your meds! This is no time to fall off of the good habits wagon. The meds and vitamins you take (if you take vitamins) help keep you going on an average day, and you don’t have one of those in sight for a while to come. I tend to goose up my B vitamins because they help with stress and energy, I don’t recommend this for everyone because I’m not an expert or a doctor I just know what helps me along. I don’t start the morning with a B overload, I hit one for each meal and then chuckle at the fluorescent color when I pee.

Grandma, what a big beard... cane... Grandma, what the hell?

Grandma, what a big beard... cane... Grandma, what the hell?

Diet is important too, first of all you can snack through the day on things that give you energy, avoiding energy drinks as the crash afterwards is wicked. I cheat on the food, most events won’t allow you to bring in outside stuff, but since I have a table at the Convention and lots of stuff to bring in for that they don’t notice the big cooler that comes in and hides under the table. So while people are trying to live off of the overpriced junkfood I have salad, ham and cheese sandwiches, fresh fruit and veggies, and little cheeses. I’m not a fan of water but I do drink it at cons, usually spiked with about 1/3 the recommended amount of powdered sports drink mixed in.

Part of diet is to know what can cause you problems, one squirt of ketchup can unleash the fury of IBS and I’ll be making frequent dashes to the facilities. Know what foods can trigger the different conditions that come with FM in you, because your triggers can be completely different for everyone. Apple slices for me are good, high citrus is not. As I mentioned avoid energy drinks and relying on caffeine, I still have my coffee early and late in the Convention day, but one is for the morning bump and the latter is to relax. I know better than to rely on it. One trick that a lot of people don’t know, is that if you absolutely need a coffee rush pound a quick coffee and then sneak off somewhere for a 20 minute nap. It takes that long for the java to hit your body and the power nap can refresh you for whatever comes next.

Pacing is something else you have to watch out for. The average Janes and Joes can drop down and sprawl out anywhere during the course of the day, the Fibro Folk know that once on the floor the time you remain there gets longer as the day gets later. Walk when you must, stand when you have to, and sit when you get the chance. Stop what you’re doing and stretch out now and then, all of those tendons and ligaments are building up tension like springs that’ll try and curl you up in a ball if you don’t take what control you can to release the tension. Pacing comes from planning, every convention has a schedule, so I get it as early in the process as I can and plan out what I need to do and where I need to be, sometimes I have to sacrifice something between two events in order to keep from running around with my hair on fire and fizzling out.

Then comes the last and most important thing, leave a few days after for recovery. No matter what you’re going to wear yourself out, Con was Friday till Sunday and I didn’t feel remotely human till the end of the week, it was worth it to me though, and sometimes that’s what you have to do, overindulge in life now and then, but know you’ll need to pay the fiddler when the dance is done.

You, not governments, not doctors, not insurance or HMOs are the caretaker of your own health, and just as importantly happiness. Make the most of all you can!

© 2010, Tim Boothby. All rights reserved.

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Taking FM on the Road

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Categories: Fibromyalgia, Tags: , , ,

It’s no real surprise that if living at home with FM is a pain then traveling with it exponentially increases the PITA factor– that’s Pain In The Ass to the initiated.  It’s harder to live without breaking whatever dietary rules keep you in line, travel is not comfortable for those whose legs don’t ache when you can’t move them,  and its hard to get a little rest in the middle of things when you aren’t in circumstances or surroundings that allow you to stop what you’re doing to get what you need.

Travel.  Pain in my ass.  First of all I don’t care to fly, I had no problem flying before I retired because I was paid to do it and now I’m not and that takes away my incentive.  Next, it causes me a lot of problems.  Flying causes pressure fluctuations inside and those irritate my already irritable IBS.  That means as soon as the plane lands my bowel throws a fit and I need to find a facility in a hurry, and I’d better not have a connecting flight because I’m not going anywhere soon.

I can counter this, but talk about a pain in the ass.  A triple dose of Imodium will keep you out of the bathroom for a while but it’s like filling your lower torso with concrete… yes, wrap your head around that because if you remember all the trouble that the MythBusters went through getting set concrete out of the truck you have to go through that at the end.  What is sitting there has to be convinced to move, but watch how you do that or you’ll spend your time with a case of self-inflicted Montezuma’s Revenge.

Driving is better in some regards, I have more choice in what I eat and I can pull over and move around now and then, it keeps the legs from tightening up and aching.  Yes aching.  Sort of like a sprained ankle ant runs up and makes your calves swell and throb, then into your thighs that tighten up and burn, and then it hits your butt… well there too but we covered that I’m talking about the buttocks, the cheeks, where the swat landed when you screwed up as a kid.  My driving range is roughly one day, because for the next few days I can’t go through being cooped up again because each successive day is worse than the one before it, and it doesn’t take long and your body makes a few obscene gestures and you just don’t go anymore.

The dietary restrictions don’t get any better when you don’t know who’s cooking with what.  A little tomato and my day can be ruined; ketchup is evil stuff for me (the dietary problems of others vary.)  There are whole lists of foods those with FM have to figure out the effects of them on their bodies, in no particular order some of the prime offenders are:   Aspartame, Bell Peppers, Caffeinated sodas, Chili Peppers, Chocolate, Coffee, Dairy Products, Eggplant, Gluten, High Fructose Corn Syrup, MSG (also in ham and bacon), Potatoes, Simple Carbohydrates, Sugar, Tea, Tomatoes & Yeast.

To make matters interesting these foods affect each person differently, and the same thing that is fine today may turn on you tomorrow.  Tomatoes are something I approach carefully and prefer not to approach at all, and fruit is strongly recommended for FM patients but I’m careful with it too.  Raw fruit is fine, fruit juices and heaven forbid smoothies I avoid as much as possible.  Coffee and tea are fine for me, I don’t drink coffee for the energy so I avoid the binge and c rash that many get, in fact I’ve always been able to sleep just fine even after setting down a cup of java.  That and both help keep things on schedule.  Milk I really only use in coffee and tea, but cheese in moderation is just fine.  I’ve really cut down on sodas, but I haven’t noticed any real change.

You can take a vacation from everything but what’s wrong with you, you can try to take a vacation from that too but I don’t recommend it, there are some thing just begging to be ignore but others that’ll rear up and bite you hard for trying.  Do what’s smart and always know your limits.

© 2010, Tim Boothby. All rights reserved.

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Been a While Since I Updated… Which is Nothing New.

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Categories: Fibromyalgia, Writing, Tags: , , ,

With apologies to Dickens, there are the best of times and the worst of times; but, there are also times like these which go beyond the suck scale.  I really hate it when we go off the scale, I like things easy to categorize and keep track of and when things drop off the end of the suck scale all I know for sure is that I’m screwed.  I like knowing how screwed.  Its sort of comforting.  I just wish that suck didn’t involve a full-body pain that’s reminiscent of the pain level of passing a kidney stone.

Oh well, when life gives you lemons brew hard lemonade.  That reminds me, I need to do that very soon now.  Anyway.

We’re back to the revelation that nothing will happen if I don’t make it happen.  Meaning?  Apparently I’m not going to feel better anytime soon, so I’ll need to do what I’d do when I feel good in a state of uber fuckedupness and say the hell with the extra time it takes.  That means quite a bit of stuff around the house and I need to finish off the Almanac.

Where am I at on that?

340 pages, 295,309 words, 1,423,345 characters.

Sadly, I have a ways to go.  I expect I’ll end at around 500 pages including illustrations.  Its going to be fun though 😉

© 2010, Tim Boothby. All rights reserved.

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Fibromyalgia: When the lows go LOW…

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Categories: Fibromyalgia, Tags: , , ,

It’s been kindly pointed out to me that I’ve been relatively quiet for some time now, so I thought there’s no better way to break the writing fast than to share another insight about life with Fibromyalgia and how it’s pretty intimately tied to my writing capability and capacity.  I’ve written fairly extensively about FM here , so I’ll spare everyone the replay and move on to current events and try not to make it sound too whiney.

Making a definitive list of symptoms for an FM patient is something akin to nailing jello to a tree, you may get the nail hammered in but the jello won’t hang there long enough for you to appreciate the sight.  It’s a cyclical condition with highs and lows, on a really good high point you can almost feel ‘normal,’ while a really low point can leave you with no more energy than it takes to get out bed and not enough to keep you vertical for long.  I’ve had two very low periods separated with a high that didn’t even reach medium, which is why I’ve been fairly quiet lately.

Another change that is really odd is a switch in migraine symptoms from the standard migraine (painful) to a more subdued form that leaves you feeling off and screws with your vision.  It really gets creative when I’m trying to read a computer monitor, you wind up trying to focus between little blobs of light.  Adding to my ocular irregularities is my vision as a whole is changing, I have to take off my glasses to read fine print, so this adds a whole new field of specialist that I get to play lab rat for.  Oh well, it seems like I wind up spending my time with new doctors explaining how FM really works, most have only read about it in texts and not dealt with it themselves.

Never has the phrase ‘know your limitations,’ been more important than to one with FM.  You can push yourself, but a few days of doing that can leave you a wreck for a couple of weeks.  Sometimes you get through the day with a couple of short periods of lying down and resting, other days you get up for short periods of activity between rests.  Listen to your body, because if you don’t after a while it’ll quit listening to you and force you to do what it needs.  There is nothing worse than wondering what people around you think of the time you have to spend horizontal while they run around living more normal lives, but the guilt you might feel is nothing compared the condition you’ll put yourself into if you ignore what you need.  A little guilt is nothing compared to incapacitating yourself.

You have no choice but to be sick, but you can do it intelligently and minimize your symptoms, sometimes a little and other times quite a bit.  It takes discipline, and it takes you explaining your situation carefully to those around you.  Learn all that you can about how FM affects you personally, and then take the time to educate your family and friends, and most especially your doctors.  They may have the degree in medicine, but you should be the world’s foremost expert on you.

© 2010, Tim Boothby. All rights reserved.

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(Past) Time to Visit the Doctors

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Categories: Fibromyalgia, Tags: , , ,

Apparently I’m a long time overdue for a routine look over, so I actually remembered to schedule one, even more importantly I remembered to write it down. Unfortunately it’s in the morning, you’d think that they’d know to schedule a person with a sleep disorder for something later, but you take what you can get. It’s been an eventful year, so that hasn’t helped me remember the little things, like medical appointments. In the past year I’ve lost two grandparents, Kim still has ongoing liver problems, Kas got married and we almost lost Pepper, poor little guy.

But, on to the rundown…

Persistent Pain in muscles and ligaments:

  • I’m up to around 8 Tylenol Arthritis a day on bad days, 4 on good ones, I would usually like to take more but you can only take so much of that before it starts to screw you up. The laundry list of where it hurts is long, back, shoulders, neck, hips, legs, knees and feet for starters, and we can’t forget the hands of course.
  • I’m having a harder time with walking than I care to admit, I used to use the cane to help ease the pain in my back from standing or walking too long, but the distance I can go without it has dropped. My feet try and give up first, it goes up into my knees, hips and then into my back. The more tired I get the worse it hurts and if I don’t have the cane I get an ugly stoop.
  • The shiatsu chair helps with the back and soaking in a really hot bath do as well, but I have to watch the soaking, if I feel a little itchy anywhere when I decide to soak I get itchy and rashy.

Unrefreshing Sleep, Poor sleep:

  • Sleep, as always, is a major problem. It’s a bitch getting quality sleep, not long after I get to sleep it seems like it’s time to get up. I don’t normally get a lot of deep sleep, I wake up tired in a shredded bed but I can’t go back to sleep because I stiffen up if I don’t get up and move around. I also have to vary how I sleep a lot, sometimes I need the floor because it helps my back, sometimes I sleep on the couch because the vertigo kicks in and I have bedspins and sleeping almost sitting up helps that. I’ve tried the over the counter sleep aids, but they just make me feel hung-over.

Fatigue (mild or totally drained feeling) :

  • I haven’t had anything like energy in months, I used to be more cyclic, I’d feel good for about a week, then rundown for 2-3 weeks, then thrashed for a few weeks, then a couple weeks of rundown and then better again. The feel good times are not in evidence, my better times now are a bit below the rundown times I used to have and the bad times make me not want to get off of the couch. I refuse to be stuck in bed or on a couch though. Come to think of it, I haven’t had a “not too bad” sort of day since September.

Recurrent Headaches:

  • Migraines are back up, I’m looking at one a week, which adds the pre- and post-migraine funk to everything else. I’m getting more ocular migraines now, lots of flashing light that really screws with my vision, but no pain. But, if I get 4 migraines a month then at least 2 of them will be the painful, hating life variety.

Morning Stiffness:

  • Morning is the worst, I go to bed stiff and sore and wake up the same way, actually a little worse because until I stretch out I’m Quasimodo. I creak, pop, crack and snap until I’m fully stretched out, and morning is prime shiatsu time.

Cognitive/Memory Impairments:

  • My memory is really working on my last nerve, I have enough post it notes on my desk to look like yellow snow, and we all know why that’s bad. Too many things slip through the cracks right now, I used to be able to do everything from memory but now I can’t trust it. The fibrofog is miserable, it can a few hours in the morning before my head is on straight. That’s why I type these things out, so I can look back and remember what to talk to the doctor about.

Irritable Bowel Syndrome:

  • This is just unpleasant. Its either hard as hell to go or my butt thinks it’s a fire hose. Sadly, when I’m plugged up and my gut is cramping a cigarette really seems to help calm down my gut and get things moving. Tomatoes, cabbage and a whole lot of other favorite foods are off the diet. Its an endless cycle of can hardly go, hard to go, and can’t stop going with gut cramping gas thrown in for fun.

Environmental Sensitivity:

  • I can’t stand still air, I always have a fan blowing on me even when I’m cold. Heat makes me feel queasy, too long in the sun and I can get rashy, and cold stiffens me up. Noise and light, as always are irritations.

Irritable Bladder:

  • It sort of feels like somebody punched me in the pubic bone, an inch or so above my junk. It hurts, I feel like I have to pee all the time and I’m pissy about it, pun intended, get over it. One of the symptoms is also painful intercourse, yeah did you see where it said I felt like I was punched above the junk? You try and get a romantic mood going with that happening.

Numbness and Tingling Sensations:

  • I have a hell of a time getting comfortable to sleep because I wake up with my arms asleep from sleeping on them funny. That is annoying as anything, and if I don’t move my legs often they do it too.

Muscle Spasms/Twitching:

  • Legs and neck, annoying and makes me look a little spastic and I hate it.

Dizziness:

  • Vertigo sucks! I’ve had leg cramps from holding down the brakes because it felt like the truck was moving, it can get really bad when the vehicle next to me moves in my peripheral vision, it feel like I just moved and when I consciously notice what is going on I ease up. I have to stand up slow, I’ve forgotten a few times and wound up on the floor.

Impaired Coordination:

  • I’m amazed I haven’t maimed myself, but apparently moving slow has a benefit after all. When I move quick I find that more often than not control becomes optional. Its also bad when I’ve walked a lot and I don’t pick my feet up as much. Lots of dropped things, I’m amazed my phone has lived this long. I really notice it when I type, my fingers tend to hit random keys and I find myself looking at sentences in a strange unknown language.

Chest Pain:

  • The same thing that had me in the ER a few times being checked for heart attacks, the chest tightens up and I breathe funny and a pain in the chest. It normally means I’ve overdone it, but it can come on at random.

Intolerance to Heat or Cold:

  • Heat makes me feel sick, cold makes me freeze, I can dress for the cold at least. Fingers and especially toes get cold.

Frequent Abdominal Pain:

  • Big huge nasty granny knots, and the only way to untie them will clear a room and offend the dog, and even that only works half the time.

Breathlessness:

  • Randomly, I can’t get my breath for no reason, and heaven forbid I exert myself without pacing myself very slowly, it usually comes when my chest tightens.

Frequent Eye Prescription Changes:

  • This in addition to ocular migraines, for months now I’ve had a problem reading small print and have to take off my glasses or do the “long arm” method. I also have occasional problems with night vision.

Dry Eyes and Mouth:

  • Gum helps, but there are times when my tongue sticks to the inside of my mouth, some medications have made this worse.

Skin Rashes:

  • Itching and bitching, thanks for asking, but only a few rash bumps that pop up at random. By “at random,” I mean at random. I’ve woke covered in hives or just a very faint rash and itching head to toe.

Sinus and Allergies:

  • My sinuses are always irritated with me, congestion, runny nose or both, and hayfever season is miserable.

Subjective Swelling:

  • Hands, feet and ankles, no telling when it will happen but I’ve barely managed to get my wedding ring off a time or two so I quit wearing it. Usually at the end of the day my feet and ankles are swollen, sometimes all the way up to my knees.

Mood Swings/Disorders:

  • Definite moodiness, I can go from massively grumpy to depressed and back in the course of a few hours. Then again, at other times I just get this weird mood when I hurt badly and try and make a joke out of everything, it’s really annoying when I catch myself doing that.

© 2009, Tim Boothby. All rights reserved.

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Fibromyalgia: Some Days the Fog Doesn’t Roll Back Out

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Categories: Fibromyalgia, Tags: , , ,

My Newsvine Article, too lazy to rewrite it for the site today.

There’s a certain entertainment value to having a condition lime FM, there are so many symptoms and syndromes involved with it that you never know what’s going to hit from one day to the next. One thing you can count on is the fibrofog. Fibrofog is a hard thing to describe, especially when you have a head full of it when you’re doing the describing, so I’ll let the functioning brains at fibromyalgia-symptoms.org do it for me

What is Fibrofog?

Fibrofog is a term given to the variety of cognitive problems that many fibromyalgia sufferers face during their illness. Fibrofog encompasses memory loss, difficulties using language, and difficulties with learning. These symptoms tend to descend in a haze or “fog,” around the sufferer. Fibrofogs can occur at any time and can vary in intensity when they do occur. Fibrofogs tend to be at their most severe during flare ups in pain.

It too manifests itself in many ways, typical for me is the fun house floor effect, you get out of bed and as soon as your legs take up your bodyweight some wise ass pulls the floor out from under you. The trick is to make sure that you rise slowly and try and keep yourself poised so that if the combination of vertigo and the confusion rampant in your head does pull a surprise attack you land back in bed. I have about a 90% success rate on that score, this morning was a subset of the remaining 10%, where you land on the sleeping dog and make him thing the house just collapsed. But, that’s a problem for later, when you get yourself vertical and moving you can bribe him to forgiveness from the goodie box downstairs.

This will not be a long article, quite frankly it too me two hours to write this much, but I do so with a purpose. As always there is good news to be found on a Wednesday. In this case its Tim’s Tips for Dealing with Fibrofog.

  • IMPORTANT SAFETY TIP: Do not drive!  If you’re in a full-blown fog you couldn’t pass a field sobriety test to save your life so you obviously have no reason to get behind the wheel!  This is a tough one if you work, before I retired I had to get a ride to work, but there’s a reason I’m retired now. 😉
  • Your thinking center is not at 100% so quit trying to do things at normal speed, be the tortoise because you as a hare will spend a lot of time wondering “How the hell did I do that?”
  • Spellcheck!  Its amazing the words that appear when I know for a fact I’m typing something else. I’ve had some of my best writing ideas on days I was socked in by the fog, typed out a whole paragraph and had not one recognizable word when I tried to read back through it.
  • KEEP YOUR SENSE OF HUMOR
  • REMEMBER: This will pass, it might take a few minutes, a few hours or a day or two but all things with FM are cyclic.

The Good News for this Wednesday?

I’m not writing about finding something to call good news on a Wednesday with a major attack of IBS. 😉

And the best news on this good news Wednesday?

If you have this, you’re not alone, there are a lot of people that have the same problems as you do, but at least you know what’s wrong with you, thousands have no idea what’s wrong with them and doctors that are equally clueless.

Those of us that know what’s wrong have the potential do a lot of good by talking about it, which goes against the psychology of FM that makes you feel guilty that you can’t do everything that you feel you should, and the worry that if you talk about what’s wrong with you people will roll their eyes and write you off as a whiner. A friend of mine sent me a good phrase to answer people like that: “My chronic disabling illness is more real than your imaginary medical degree.”

The fog also makes you ramble, so on that note, Happy Wednesday!

© 2009, Tim Boothby. All rights reserved.

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