I came across some great explanations of fibromyalgia today, and wanted to share them, since in recent weeks I’ve had quite a few ‘helpful’ people tell me that all I need to do is change my diet / sleep more / exercise more. A little collection of articles from the folks at chronicfatigue.about.com is my response:
>> What’s it like to have fibro?
>> Understanding fibro pain
I rather like two things in the second article – first, the term ‘fibromite’, descibing those of us with fibro. Second, the author’s own names for the types of pain she experiences, and particularly ’sparkler burns’, which I have so often I immediately got what she meant. Here are a few of my own names:
MacTruck Pain – that overwhelming fatigue and pain that makes you feel you’ve been run over by a mac truck.
Burn Days – when the muscle burns just make you feel like every inch of skin and bone is on fire
Zonk Days – when the fatigue and pain get so overwhelming that it feels like I’m a zombie.
I wonder if making up names to cope with the pain and fatigue help? I know that the people who know me best understand that if I say I’m having a ‘burn day’ that it means I’m not up for much. But for well-meaning (and not so well-meaning) folk who don’t know me, it’s really hard to explain what constant pain and fatigue feel like. And when the people closest to you you don’t want to understand, then there’s little you can do to help them get over their perceptions of ‘laziness’. I’ve two words for the latter group, but I’ll be polite and not use them.
My apologies for taking so long to get this post up. The past couples weeks have been tough. Kenai started acting oddly not long ago and having tummy troubles. Another bacterial overgrowth in the small intestines lead to the icky stools and vomiting.
He’s still fighting the yeastie beasties in the ears, and his brother is badly bothered by a skin staph. Mostly though, that strangely intense behavior reappeared in Kenai style full force last week; intensely over-excited about critters, intensely rough playing, intensely fearful of people/things he’s used to, intensely stubborn about going here rather than there…
It’s like adolescence, exponentially ramped up on steroids. Just totally out of character and intractable. Even our trainer shakes her head in disbelief! There’s an unnatural intensity, like like his limbic system is on fire, and he just “goes native”, overreacting to everything.
That’s how I know to check his tick titers again. Always the personality going sideways. He’s still got a good weight, 130 pounds, but he’s not himself. This time it is the rocky mountain spotted fever that is the dominant organism. He’s clinical, that’s for sure.
At least I can look back and understand those times when he went all weird on me. Like the puppy class freak outs, and the sudden inability to handle going places he liked to go. It was so absolutely perplexing back then. Small comfort, but at least it makes sense.
There’s the neurological stuff like fear/dizziness on stairwells, refusal to cross shiny floor surfaces, vast increases in whining, bloodshot eyes, secondary infections (skin staph, yeast in the ears etc)…add to that, add to that.
He’s having a hard time to say the least. Oy my boy. Needless to say, I’m exhausted. He lets me get about 2-3 hours of sleep at a time, for the most part. Sometimes 4 hours. Ouch. Sleep Dep is the, THE, worst possible thing to do to a body with CFS/FMS, not to mention the inner ears go bezerk.
But we are trying to make the best of things, with short car rides in the evenings when he usually feels the best, and as much outside time as I can endure. Kenai has his own “salt lick”; a tub of cream cheese to get him to take his medicine and eat his food. He even watched me write his name on it!
Poor BB’s maddening itches have been partially usurped by Kenai’s crisis. But little buddy is getting attention too. He gets his baby baths–soaked with witch hazel and rubbed down with a tea tree oil spiked lotion. He gets to play outside with big bro, which makes him uber happy.
He gets attention, just not as much as he’d like. Par for the BB course, right? He knows something’s wrong, getting upset when Kenai is lethargic or sick to his tum. He really gets bent out of shape when I tell him Kenai has to go to the vet. Oh the hound howling when that happens.
Little bro all worried. He parks his bony baby butt on the bed and looks out the sliding glass door for hours until I bring Kenai home. Beebs is NEVER in one place that long for anything else! They may drive each other bonkers, but they’d be lost without each other. The Brothers Grin.
Just when I start sliding into the poor-me, I discover a dear four footed fellow named Dylan lost his battle. He was recovering from Wobblers surgery, doing well, then was hit with a stroke. Dylan, sweet guy, you were loved, and will be sorely missed.
***
Talos is learning (re-learning) a mannerly wait at the gate, after a self initiated gate crashing incident. Teenagers…http://smartdog.typepad.com/smart_dog/ He thought it was fun anyway, though his human was not amused. Nothing like a teenager to frighten the life out of ya.
But his “mom” is a smart lady, and had both the wits to go fetch the hot dogs, and the good fortune to have other dogs to feed them too until Talos brought his juvenile self back inside the yard! Nothing like a touch of competition to make the left out boy give up his chase-me games.
My two knuckleheads won’t be getting out much until next week, thanks be to a honkin winter storm. We got about 10″ of snow, and out here in the boonies, that means it takes awhile to get out again. The drive way is 1/4 mile uphill, with three sharp corners. Miss the corners, it’s a 20 foot drop. We sit it out!
But the boys get ample reindeer games in the snow, having nothing else to do! There’s enough of it this time that you could literally lose a Maltese! Kenai is 35″ tall and the white stuff is over his hocks, to give you some idea. And prissy boy don’t like cold toes for something as blah as just going potty.
I’ll get lots of pics the next few days, but I’d better get this post up while I can. Then it’s nap time, a la pain pill–I’m too old and beat up for all this shoveling!
It was only a matter of time before I found the proper auto-immune disease that fit my symptoms. Trust me, it’s not like I WANT another diagnosis….especially one where there are few treatements, but it is also good to know that I’m not just nuts. I had my first doctors appointment this week to discuss with the doctor Fibromyalgia and an arthritis gene that I likely carry. When I explained everything that has been re-occuring he had to agree that it sounds like fibromyalgia. He apologized and said he was sorry because he knows it’s a diagnosis where there isn’t much that can be done about it…I sort of shrugged and said I’ve been dealing with stuff like this for over ten years with my endo, adeno, and ovaries….I might as well have a name to go with what I feel.
I had some blood work done and we’ll find out the results soon. I had the HLA-B27 antigen tested along with some other innflamation markers. We’ll see what comes of it.
The doctor wants me to try Lyrica for the Fibromyalgia, but we’re not sure we can get insurance to cover it, and I get a bit nervous with new medications and possible side effects. I wish I could just treat it naturally somehow.
In my last post I introduced the concept of my “life change” programme. Given the serious nature of some of Catrina’s symptoms I decided the priority was to begin some work on her physiology so yesterday’s session was run as a typical nutritional therapy session.
First of all I took Catrina’s complete health history from birth right through to now. her main reason for coming is to feel healthy and lose some weight as she recognises that this will help relieve other problems. It soon became clear that all her systems are out of balance but my main concern is her liver – congestion here can lead to major symptoms in all parts of the body and is directly part of her problem with gall stones.
Because of the amount of toxicity that Catrina clearly has I don’t want her to do too much too quickly as this could precipitate a healing crisis. So therefore before addressing diet I want to sort her hydration out and take some pressure off her compromised liver.
I’d asked her to keep a food and mood diary before coming along and noticed that in the 5 days before seeing me she’d consumed:
7 cans of diet cola
1 can lemonade
3 cups of black coffee + 2 cappuccinos + 1 latte
1 snowball
3 glasses of wine
5 x 1/2 litre bottles of water although one day didn’t have any water
1 ginger tea.
I have challenged her to cut down then cut out all the stimulants and increase her water intake. Cutting out caffiene will take pressure off her adrenal glands as well as her liver. Caffiene also disrupts the blood sugar balance significantly which in turn affects appetite and sugar cravings. Aspartame (in the diet cola) has been linked with Fibromyalgia and proven in clinical trials to not only increase appetite but when taken with food increases the amount of calories extracted from that food! To help with the motivation on giving up the artificial sweeteners I’ve lent her my copy of the documentary “Sweet Misery” which gives an excellent account of how aspartame came to be approved as safe in the US by the FDA despite the evidence to the contrary, alongside stories of those most severely affected by this chemical.
Caffiene is a physically additive drug so going “cold turkey” or even dramatically cutting down can result in withdrawal symptoms such as headaches and mood swings. Increasing water intake can negate these but if it doesn’t help then dropping a few drops of coffee or cola under the tongue can relieve the problem without exposing the digestive system to a big dose.
Finally I asked her to start the day by drinking juice 1/2 fresh lemon in hot water very first thing. This is to stimulate her gall bladder and encourage more frequent production of bile as is a very gentle gall bladder flush.
The complexity is only highlighted, as one understands…
Over a decade ago, a team of doctors gave me a diagnosis of Fibromyalgia, Arthritis, and Borderline Lupus. The crippling came on overnight. I could barely function. In a flash, everything changed for me. Exercise became increasingly painful and avoided. Sleep did not refresh me when my pain eased enough to drift. My mind felt as if it was constantly in a fog and I could not recall common vocabulary mid-sentence. Dieting seemed useless, as I tortured myself only to find the scale would not budge.
As I began to eat low-glycemic index foods, keeping my sugars to a minimum, I saw the scale move in my favor. It was extremely slow. If I dropped more carbs and stuck with healthy protein choices, my fat melted away. My fatigue and pain would lessen and I could increase exercise. I began supplementing with magnesium and found my Fibromyalgia pain was controllable.
Sticking to this “healthy” plan came in waves. When my husband worked out-of-town, I always lost a good chunk of fat. When he returned, my weight also returned home. My husband believes I am sneaking abundant food behind his back once he gets home. He does not grasp my struggle. Nor do many of my friends. My well-intentioned friends who insist if I attended Weight Watchers I would lose the weight. They cannot believe I have stuck to the Weight Watchers diet in the past several times and still felt horrible and did not lose weight. I despair that some of those closest to me, who do not live in my shoes, doubt this is true.
Thus, I am on the horns of a dilemma. It may seem impossible to solve. I cannot rid my home of junk food to make eating healthy easier. I envy women who have husbands who allow them to toss the junk food out and cook healthy. I resent their advice to do the same, when it is not an option.
I must cook refined foods for my husband or it puts a horrible strain on my marriage and the family unit. My choice is to keep peace with my husband by preparing killer foods, which leaves me fat and miserable, or to split from my husband in order to feel alive and be healthy. However, as logic would have it, there are usually more than the two obvious options. Brainstorming is opening new doors or modifying the existing ones.
The truth be told, I hate who I have become. This is influencing every area of my life. My health has deteriorated over the last decade since my diagnosis, with major emphasis on the last two years. I am at the crossroads. The paths lead to life or death.
It’s one of those days when I just cannot seem to get the motivation or the strength to get out of bed! Yep, it is a layyyyyzzzzzzzzyyyyyyyy day!!
My honey is amazing!
He knows that I don’t get a whole lot of sleep at night, especially when I am in a bad flare, so he let me sleep in this morning, and got the little man ready and off to school and let me sleep. Am I ever-blessed or what?!? Does it make me feel guilty? In a word, YES! Did I need the rest? Umm…. Yep! So I try not to feel guilty for too long, and rather count my blessings that I have an amazing man in my life that truly “get’s it”, and gives me the time I need to take care of myself…. If I am in a better place, and happier as a result of taking some time for myself, then family as a whole is happier….. It is a hard lesson for me to learn, because I am ALWAYS fighting the feeling of guilt in some capacity, but I am learning to be a little more gentle with myself on days like this, and concentrate on how blessed I am to have someone SO supportive in my life.
I have spent so many days in the past concentrating on all the negative things that being a Chronic Girl has brought into my life. In a heartbeat it can overwhelm and pull me into a black hole…… And that is a horrible place to be. It is so easy to let the pain talk for you, and fill your head with crap (for lack of a better term). God knows I have been there many many MANY times…. but I am trying to combat the crap with a conscious decision to count my blessings every time I feel the dark creeping in….. and it really works for me.
Pain would like me to believe that I am not worthy…… and then I remind myself that my self-worth comes from WHO I am, not HOW I feel.
Pain would like me to believe that I am ugly……. but I know deep inside that my beauty comes from far within, and that the courage I have to fight this pain makes me more beautiful (As it does many for many of you!)
Pain tells me over and over that I cannot live a normal life…. but who the hell wants to live a normal life anyhow? I can have an extraordinary life IN SPITE OF my illness, and it makes me all the wiser when I can consciously outwit my pain.
It is one of those days that I woke up counting my blessings…. and it went something like this….
Ouch…. oh crap… It’s going to be a long day…. wait, I slept last night!!…. Blessing #1
(Turning over…) UUUGGGHHHH…. crap, that hurt….. oh here comes the burn! Am I going to get up and get my meds in time before this pain gets the better of me?…… Awww…. my honey left me a little love note by the coffee maker. He loves me, and I am so blessed….. Blessing #2
Shit, I don’t think I can be on my feet long, the burning is really bad today……. But, my water-glass is right here, I don’t have to fumble with the cabinet door this morning, and my little man is already at school…. So if I need to go lay down on my heating pad until my meds kick in, then I can!…… Blessing #3
I have to head back to bed…. this nerve pain is just killing me this morning!…..
(the phone rings)
Yikes! Guilt sets in! It’s my honey, and he is doing errands without me! I feel so bad….. I hate when my pain takes me away from spending quality time with him, even when it is doing mundane tasks….. I wonder if he will think I am lazy? I wonder if he will be upset that I didn’t hear him leave?……….. Aww…. he is calling me to tell me he loves me. He tells me he knows that I needed the rest, and didn’t want to disturb me…. He assures me the world hasn’t come to an end because I slept in… and by the way he says…. I will pick up groceries…. I want to make us Veal Marsala for dinner. AWESOME! I don’t have anything pressing to do today, AND I don’t have to make dinner either! I get to relax today and just enjoy the company of my favorite boys!…….. Blessing #4, #5, #6, #7!
By the time my medication took effect this morning, I had counted at least 15 blessings!! How can anyone get lost in a big black hole when they have such a great life?
The pain will ALWAYS want to bring me down….. I can’t prevent it from whispering nasty things in my ear from time to time….. but I am finding a way to safeguard my heart from the feelings that come with it. I am counting my blessings…….
21, 22, 23, 24, 25, 26, 27……….
And all of a sudden, One of those days turns into -
ONE OF THESE DAYS
I hope you stop today to do some counting of your own.
Have you ever heard of people describing non-believers, or those who do not believe in Christ as lost? I am not sure what to think of that term, if it is appropriate at all or not. We are each on different paths, so who is to say who is lost?
In a different light, do you know that feeling of purpose, a feeling of being on the right path, that gives you a sense of knowing, of being in just the right place? I am missing that feeling…I miss that sense of comfort. I miss knowing exactly what I believe in and exactly where I should be. I feel lost.
Feeling lost is so uneasy. There is a type of being lost that can feel like an adventure, but at this moment in time, it doesn’t feel exciting or adventurous, it feels yucky. I am wandering around inside myself, feeling a bit hollow, and searching for something familiar. I am incredibly alone here. I would so enjoy the act of an outstretched hand right now. I call out my name, but all I hear are echos in this cavern. I would like to hear a welcome or a greeting of some kind, something like “I am here.” or “Hello my friend.” But the emptiness is too much, too vast.
It frightens me to feel this alone. It frightens me to question things that usually keep me grounded. And even when I am not questioning lately, I am just not “feeling it”. I want to feel it. I want to know with all of me the things that I can count on, the truths that are ever-present and ever-lasting. Have I gone to some place where it just can not reach me?
Thank God for the drive inside to keep pressing forward. Thank God for the gift of knowing that if I go to bed, tomorrow will probably feel better, at least better enough that I can keep moving forward and continue my search. I am grateful for the gift of being responsible for others, for it gives me so much meaning and reason to put one foot in front of the other, to take a deep breath ( or several) , and to find a way to live the next moment as best as I can. Thank God. At least I know who I want to thank, that I can give thanks to Him and feel sure of that. That feels good.
I may be lost right now. I might not know where I am going. But I will keep moving and sometimes I will just breath and that will be enough…
Tuesday, 1/6’s classes began with a group of three for chair yoga at The Heritage of Raleigh. We built our focus from the feet upward. With the combination of grounding the feet down (with four points of contact) and centering breaths, we relaxed the lower spine and hips. One tall student gained three inches of height by aligning his feet, hips, and shoulders to reduce the curve in his spine. We completed class with emphasis on drawing the shoulders down and inward, and the head over the spine and level, by using imagery. The positioning was driven by the shoulder blades grasping a pencil and the head gently pressing a piece of paper back against the wall. This is Yoga Cotillion!
Next was a Lunch and Learn at the NC Department of Labor, a follow up to my participation at the NC State Employees Wellness Expo. Seven students and wellness coordinators learned to assess and adjust to a chair’s height and incline. The goal was Sitting Mountain Pose. We reviewed foot awareness as the foundation for properly aligning the hips and the elbows as the foundation for aligning the shoulders. From here we developed centered breathing, isometric arm and leg exercises, and practiced our Golf Swing Stretch to improve our rhythm. Thus, creating new ways to unwind from the stresses of a desk job.
The evening class at The Helen Wright Center (Woman’s Shelter) contained five new sudents. Two students had significant medical issues of scoliosis and fibromyalgia. The smokey air in the building made the idea of expanded breathing capacity a sort of mixed message. We developed our sitting Mountain Pose as slumping while seated was a common problem. The students focused on rolling their shoulders back and down, that Yoga Cotillion again. We practiced drawing the elbows back for better balance and power while walking. The student with soliosis first was sore but eventually had significant spinal self adjustment and improved range of motion. The student with fibromyalgia had minimal discomfort and reduced whole body tension.
A little bit of background on my fibromyalgia. I’ve had a history of arthritis since childhood up until my late teens. When I became an adult it seemed to subside with only minor to moderate flare-ups on occasion. Then when I hit my late 30’s it came back with a vengeance. The pain went being mild/moderate to moderate/severe and it’s been at that level ever since.
In the March of 2008, I noticed I was becoming more fatigued and had a general over-all feeling of illness, almost like I had the flu. It felt like I was falling apart. I was so sick. I knew something else was wrong with me. Instead of the pain being in my joints, it was now in my muscles and the aches felt like I had a bad case of the flu. I made an appointment to see my doctor. He pressed on the spots that were sore and then, after me saying “ouch” a number of times, he said, “You have fibromyalgia.”
I was so shocked! I thought he must be wrong. I had flu-like symptoms and I felt like there was something terribly wrong. And I was right. It was fibromyalgia. I had read about it before and thought there’s no way I could have that, I don’t have all those symptoms. So I went home and looked it up on the internet. Apparently you don’t have to have all of those symptoms to be diagnosed with it.
So I thought back to when some of those symptoms first appeared and wondered if I had it back when the arthritis first came back. I still don’t know for sure, I’m still debating. But one thing I do know for sure, my life has been altered. The lives of my children and husband have been affected too. That part hurts worse, knowing this condition has changed others lives. I wish it didn’t. The children have been good sports about it. They don’t complain and are real troopers when it comes to dealing with it.
I’ve decided after much moaning and complaining that the better way to deal with this is to try to be more positive and let prayer work for me. Complaining about it, although therapeutic, may actually be doing more harm than good. So I’ll try to complain less and think “happy thoughts.” Yeah right.
Hello and welcome! I’m Dr. Matthew Gianforte, a licensed Doctor of Chiropractic at Life Works Chiropractic Health Center, serving the greater Kansas City area.
I’ve created this forum to foster discussion on cutting-edge and proven techniques known to achieve pain relief, overall wellness, and combat disease. I hope you’ll join me here for questions and conversations on your health and wellness.
I’d like to begin by sharing with you a little background on what led me to Chiropractics. As a boy, I was an avid sports enthusiast. In fifth grade, I sprained my ankle right at the height of basketball season. When my doctor wrapped my ankle and recommended I don’t walk on it for two weeks, I was devastated—it meant an early end to my basketball season.
My dad decided to seek a second opinion and took me to see a Chiropractor. The Chiropractor had me walking pain-free and ready to roll in three days, back on the court the following week. It was through these eyes of a young child and discovering the differences in medical philosophies first-hand that I discovered how we can use our own bodies to heal ourselves. It was then I knew I had stumbled onto something that would intrigue me for the rest of my life.
It would take me years to learn the scope of what chiropractic care could accomplish, and the difference between Chiropractors themselves. There are some doctors who simply treat symptoms and others who not only alleviate pain, but also work with our entire bodies to stave off obesity, respiratory problems, disease—and even the “virus of the month” that always seems to be circulating in schools and the workplace. I practice the latter, treating immediate problems and preventing others from ever occurring.
I believe whole-heartedly in creating long-lasting relationships with my patients so I can track their health and progress and give them the tools they need to live a pain-free and healthy life. Located in the only licensed neurological relief center in Kansas City, I am 1 of only about 100 doctors in the U.S. who is licensed to effectively treat Fibromyalgia, symptoms of MS, Parkinson’s, chronic migraines, rheumatoid arthritis, and post surgery failures.
Are you in chronic pain? What courses of treatment have you tried? Have you thrown in the towel on medicine or chiropractic care and just decided to live with a certain level of pain? I hope you’ll open the door to a conversation that can change your life.
From approx. June 2008 to March 2009, I lost over 70 pounds using a combination of the South Beach Diet (by Arthur Agatston) and the Immune System Makeover (by Janet Maccaro). I felt good. I was looking good. I was fitting into clothing sizes I hadn’t fit into in years. I started sliding a bit, as will occasionally happen even when you have the best of intentions and are “on top of the mountain”. I was on a bit of a slippery slope, but it was still “do-able”. I hadn’t really regained any weight, but I knew if I wasn’t careful, it could happen. Then my youngest granddaughter passed away. My diet went out the window. It was the least of my concerns.
There’s a reason they call it “comfort food”. For me, it wasn’t so much a matter of “eating to forget” as it was “I didn’t care what I ate”. Caring what food I put in my mouth (or when) was a difficult concept to grasp when, emotionally, I felt like I was at the bottom of a deep well, looking up. My granddaughter’s death, quite simply, gutted me.
In the nine and a half months that have passed since her death, I’ve managed to pack back on about 30 pounds. I’ve been wanting to get back on the South Beach/Immune System Makeover combo, but I wasn’t interested in being bothered with it during the Thanksgiving/Christmas season. There’s nothing like starting out a diet in the middle of family dinners, seasonal cookies and appetizers to really make you bomb. And I knew I’d bomb if I tried. Give me a day or so on the diet (rather…lifestyle change), my willpower will be as strong as steel. But at the beginning? Starting during Thanksgiving and Christmas? Not a chance.
The weight gain would have been bad enough. But there’s a reason I was on Janet’s diet back in 2008. My immune system was in the toilet. By the time last March had rolled around, I was a much healthier person than when I had started. Now? I seem to catch colds, infections and other ills at the drop of a hat. Once again, my immune system is in the toilet.
So here I am…I started it today. It didn’t really have anything to do with a New Year’s resolution. My feeling is that if I can’t do it the other 364 days of the year, why would that day make a difference? That said…there’s a bit of a “new beginning” feel to it. I figured I’d start the year out right.
What I’m doing is mostly fresh veggies, meat/protein, and the “right” (ie, complex) carbs from the South Beach Diet and the “No sugar, no wheat, no dairy, no caffeine” and “If it doesn’t rot or sprout, do without” from the Immune System Makeover. Along with nutritional supplements (vitamins).
I’ve used this combination before and was very pleased with how I looked and felt (how I felt is my bigger concern…losing weight is the fringe benefit). My blood pressure was better than it had been in years. And years. And years. I wasn’t hurting. I was even considering taking up jogging…which was a lightning-bolt moment for me. I’ve always hated jogging. But between the weight-loss and the running around (literally) I had to do at work, I found myself actually starting to like it. It was a concept.
But at this moment? Jogging’s not on the radar. Eventually…maybe. At this point, I’ll be happy to have more energy, be back out of pain, and back into smaller pants. I sat down in my daughter’s car a couple of days ago and one side of my pants split. Nice. Granted, I’ve worn those particular pants to death…but it was an enlightening moment. Perhaps the incentive I needed. Thank God (I mean that quite literally!) that it didn’t happen at work.
So here I am, rambling to myself and anyone else that’s interested. I started this journey, originally, at 279.8 pounds. Here I am now at approximately 234 pounds. I’m drawing the line in the sand.
I have spent so many days in the past concentrating on all the negative things that being a Chronic Girl has brought into my life. In a heartbeat it can overwhelm and pull me into a black hole…… And that is a horrible place to be. It is so easy to let the pain talk for you, and fill your head with crap (for lack of a better term). God knows I have been there many many MANY times…. but I am trying to combat the crap with a conscious decision to count my blessings every time I feel the dark creeping in….. and it really works for me.
turns into -