Thursday, March 31, 2011

Staying Motivated

In the musical Evita, Evita sings the following line to Juan Peron,  "Sometimes it's very difficult to keep momentum if it's you that you are following." That is exactly how I am feeling now. Although not unexpected, the rejections for both books I am working on are rolling in.

The fatigue that has been building for the last couple weeks is here in force. I am functioning, I am making myself do things, but I am in a state of utter exhaustion. The pain isn't bad -- yet. The trigger for this fatigue is IBS. The discomfort from the flare-up of my IBS is keeping me from sleeping at night. There's no point in using a sleep aid, because I wake up regardless, almost hourly. It's been that way for a few nights now. I want to sleep. I fall asleep fairly easily, but I cannot stay asleep. I can't even nap. There is too much discomfort in my belly.

I try to keep going, but my mind is fogging. I find it difficult to concentrate or make coherent conversation. I left my notebook behind while running errands today. I had trouble navigating a shopping cart through the store. It made me wonder if I should have been driving, but I made it home safely. My memory is shutting down. I walk into a room to do something, and I stand there staring blankly. Writing this is extremely difficult. My fingers stumble over the keys, and I fight to remember what I want to say.

I need a good night's sleep, and until the IBS settles down I won't get it. Everything is starting to feel a bit overwhelming, I hope I can kick this flare soon and regain my earlier energy for this project.

Wednesday, March 30, 2011

To medicate or not to medicate?

How is fibromyalgia treated? Should you medicate yourself? I can point to the treatment methodologies, but I can't answer the second question. Treatment is very personal and varies dramatically from person to person. I personally don't like to take drugs but at times it is inevitable.

According to the Mayo Clinic, "In general, treatments for fibromyalgia include both medication and self-care. The emphasis is on minimizing symptoms and improving general health."

Medication is used to reduce the pain and improve sleep for fibromyalgia sufferers. These treatments range from your common over-the-counter pain killers, to sleeping pills, muscle relaxers, anti-depressants, and anti-seizure drugs.

My personal course of action has been to try and minimize pain and maximize sleep. For me, maximizing sleep is the most difficult part. When I don't get enough sleep, the pain is worse. I can't tell you which came first, the pain or the lack of sleep, but as I get more tired, I become less able to deal with everyday life. It becomes more difficult to concentrate, I become irritable, and everything hurts. If I don't deal with the sleep, symptoms become progressively worse. Simple tasks begin to look insurmountable.

I don't like to take drugs if I can avoid them. I tend to be very sensitive to the side-effects of most medications. Self-help gurus will point you towards diet, exercise, supplements, holistic treatments, and alternative treatments. To some extent I agree with this. But no matter how healthily I try to live, sometimes I need more help to function normally.

For the most part, I'm a pretty healthy eater. My downfall is sweets, and I have been trying reduce the amount of sweets I eat. I know from experience that too many sweets affects my IBS. I also exercise regularly, and I have added yoga to the mix in the last year. I practice all the techniques they advise for adequate sleep. I love massage, but unfortunately, my insurance doesn't cover it, and I cannot fit it into my budget right now. Even with all my attempts at living healthily, my nervous system doesn't function quite right, and sometimes it needs a jump start. This is where medications come in.

I have been lectured by well-meaning friends on the dangers of using sleeping pills. All I can say is that although your advice is well-intentioned, I can't get a good night's sleep on my own. My body doesn't work right. Spend a week in my shoes, and see how well-rested you are at the end of it. Sleeping pills are not a panacea. They stop working if you take them daily. Used for the purpose of allowing myself to make up lost sleep, they are invaluable.

Muscle relaxers have the added advantage of making me sleepy while relaxing my muscles. Add some acetaminophen to the mix at bedtime, and often I have very little pain at night.

With sleeping pills, muscle relaxers, and a pain killer I am treating my symptoms. They are not cures, but I do not have to take any of these drugs daily, and the side effects for me are negligible.

I sometimes consider taking anti-depressants. They are used not for treating depression but for treating the pain and sleeplessness of fibromyalgia. Using these types of medication require much more consideration for me. They are used long-term and can have many adverse side-effects. Sometimes the cure can be worse than the cause. The same can be said for the new drug treatments for fibromyalgia you hear advertised on TV.

Many fibromyalgia victims use narcotics. For me, that is not a viable option. It is very difficult to function on narcotics, they have a lot of side effects, and they can be quite addicting. My pain is not great enough to ever take that course, but for some it is an option.

To medicate or not to medicate is very personal. Before you chastise someone for the drugs they take, consider that person's daily quality of life. Living in constant exhaustion and fatigue is disabling and mind-numbingly depressing. There is no joy when you hurt all the time. Each person must make his or her own decision about treatment under a doctor's care. The most anyone else can do is support that person and not belittle his or her choices. 

Sunday, March 27, 2011

An exerpt from Misha

Being used to running around and doing a million things, Misha has always felt that she had to be good at everything. The guilt can be overwhelming when she feels she’s not doing her best because of a flare. “Be a good wife. Be a good mom. So when I can’t, when I have a flare-up, it gets me really depressed because I feel like I should be able to do more. If I’m feeling really bad and my daughter has a day off from school, and she wants to actually spend time with me, and I can’t, then I feel really guilty. Those moments are few and far between because she’s a teenager.”

Because Misha’s mother, sister, and neighbor also have fibromyalgia, she has always had their support. They often share treatments they have found successful with one another. Her in-laws have also been very understanding, and when they were able, often helped with the children when Misha was unable to get out of bed or leave the house. Unfortunately her mother-in-law now suffers from Parkinson’s disease, and Misha prefers not to burden her with any additional stress. “I used to rely on my mother-in-law. She was a really good sounding board. She was always good to talk to, patient with me. She always had good ideas and was never judgmental.”

Her immediate family has been a little slower to come around. Two of the girls are less than understanding, but the other two seem to realize something is wrong. Her husband has also been slow to come around. “My husband used to joke and call me fibro mom. Sometimes I didn’t like to tell him because he’d say, ‘Really something else is wrong? You’re falling apart.’ We’d be joking around, but it hurts. I can’t help it. If I could I would.”

Unfortunately, his eyes opened to her suffering after he started experiencing issues with depression from an old back injury. Initially, they each dealt with their physical pains separately. “He got to the point where he couldn’t get out of bed, lacked motivation, and was very tired. Before that, he never understood depression or the fibromyalgia. He’s starting to get a bit more understanding. The difference, now, is that we have learned to help each other through our physical pain.  We’ve learned to recognize when one of us is hurting really badly. We pick up the slack for each other.”

Misha’s husband is her best friend. “We’ve been married almost 11 years and been together for over 15. He’s pretty good to talk to. He is the one that reminds me to slow down sometimes, to take care of myself.” 

Friday, March 25, 2011

This and That

The Meeting

Last night I attended a FARNY meeting. If you've been reading my blog, you might think I am very active in this support group. To be quite honest, I really haven't had much interest in support groups before I started this book. I decided to be informed, I should get a little involved. I have been pleasantly surprised so far. Rather than a bunch of people griping about their pain, FARNY has topical speakers who present valuable information on managing fibromyalgia. The speaker last night was Dr. Antignano a local gastroenterologist. His topic was IBS (irritable bowel syndrome).

Why would someone with fibro be interested in IBS? In my case, I have it, and find it quite frustrating. I also knew that it was common in fibromites. As a matter of fact, it is so common in fibromites, that according to Dr Antignano, one in five fibro sufferers also has IBS.

Does fibro cause IBS or vice versa. That is unclear, but what I found fascinating was the fact that both syndromes appear to be disorders of the sensory nervous system. I had known that to be true of fibro, but this was the first I had heard this of IBS. In both cases SSRIs have been successful in treating these conditions. SSRIs are what we know as anti-depressants. Does that imply that IBS and fibromyalgia sufferers are depressed? Maybe, I'll get to that shortly. In these syndromes, the reason that SSRIs are successful is because there is too much information getting to the brain. Seratonin helps regulate this.


Are IBS and fibro victims depressed? Is depression a symptom of these syndromes? If you look at definitions for these diseases, you will see that depression is often associated with both. Do I, personally, think it is a given that if you have these syndromes, you will be depressed or if you're depressed you will have IBS and fibro? I think it is a bit of a no-brainer. In my opinion, if you have either of these syndromes, you're going to occasionally get depressed.

Who wouldn't get tired, irritable, angry, or down in the dumps when gassy, crampy, and bloated all the time. By the same token who wouldn't occasionally get down, when fatigued and achy all the time. I think it is perfectly normal behavior. On the other hand, when the depression gets to the point that it starts affecting your daily life in a dramatic way, then you should probably seek help. I don't think it is out of the ordinary for anyone to feel down for a few days or even a few weeks. Stuff happens, and it is not always good. Rest easy though, if you're depressed, you are not immediately doomed to suffer from IBS or fibro.

DST and Fatigue

This leads me to how I am feeling. I am down. I am not sleeping well, and my IBS is worse. I have to say that my IBS sometimes disrupts my sleep even more than the fibro. The high I was on a couple of weeks ago is waning. It is hard to know what to blame.

DST often leads me into chronic fatigue. The changing seasons, especially winter into spring is always hard on my fibro. The weather sucks. It is the end of March, the temperature was in the mid-20s today, and the landscape is white. I'm a skier and should be loving this. Instead the cold is making my muscles achy, or maybe it is the fatigue. Either way, I am longing for warm temperatures. I want to see green grass, no mud, and I want to work in my yard. I am tired and cranky!

So now, feeling the way I do, and armed with new information from last night's meeting, I am debating whether I should reconsider my stance against anti-depressants. If an SSRI, could help with both the IBS and fibro symptoms, might it be worthwhile to take something daily for the rest of my life? My annual physical comes up in April -- something to ponder until then.

Thursday, March 24, 2011

The Princess and the Pea - Another Excerpt

Imagine this scenario, one that is familiar to most able-bodied people who live in parts of the country with changing seasons. It is late autumn, and we are blessed with a beautiful Indian summer weekend. It’s time to take advantage of the weather and finish up all the outdoor chores that need to be done before winter descends.

Lisa feels good. The sun is shining and low in the sky. The temperature is warm, but not overly so. The air is crisp and filled with the earthy fragrances of fall. Lisa sets off energetically on her mission. She rakes the leaves to the curb, removes all the screens from the windows, cleans the gutters, stacks the firewood, and brings in the lawn furniture.  She finishes up by taking Abby, her rambunctious Labrador retriever for a long walk in the park.

As Lisa sits down to dinner that evening, she feels pleasantly tired and fatigued. “I’ll sleep well tonight,” she thinks. As the evening progresses, Lisa finds herself getting a little achy. Muscle groups she didn’t know existed are beginning to murmur their distress. Her lower back is aching a little, and her shoulders feel tight. Comfortably ensconced in an easy chair, she is watching a movie, a fast-paced action thriller, and yet she starts to doze off in the middle of it.

Lisa finally gives up on the movie. Rising out of her easy chair, every muscle in her body screams, from her little toe to the top of her scalp. Lisa pops a couple of over-the-counter painkillers and heads to bed. A good night’s sleep, a slightly easier day tomorrow, and she’ll be feeling fine by Monday.

Lisa wakes up Sunday morning. A little fatigued, a little achy, but she’ll survive. She takes a couple more pain-killers and sets off for a brisk morning walk with Abby. When she returns, she’ll relax, read the paper, and maybe even take a nap. Life is good.

Mary’s story parallels that of Lisa’s, with one critical difference − Mary’s life is lived from the perspective of a fibromyalgia sufferer. Mary does not allow herself to be defined by her disease, and most of the time she functions normally. However, because she must be aware of those circumstances that trigger her symptoms, she is often frustrated by needing to limit her activities.

Mary also wants to take advantage of the beautiful weather. She feels good and full of energy. She might be feeling a little stiffness, but that’s normal for her condition. Because it’s such a great day, and she feels energetic, Mary performs all the same activities Lisa did. But in the back of her mind is always the niggling little worry, “Am I pushing myself too hard?”  Nevertheless, she goes ahead and accomplishes what she wants to do. The adrenaline that has kicked in keeps her going as she works steadily and productively.

Just as Lisa did, Mary sits down to dinner that evening feeling pleasantly fatigued. Okay, maybe a little more than fatigued – she’s really beat. But she accomplished so much today, she feels satisfied.

Meanwhile, her muscles have already begun to ache. Her elbows hurt and it is difficult to bend and unbend her arms. The spot between her shoulder blades burns, and pain and numbness radiate down her arms. Just lifting her arms to put the dishes away is an effort. It hurts to lift her arms above her shoulders. Her hips are aching and her legs have a heavy feeling.

Mary sits down to watch the same action thriller that Lisa had turned on. Like Lisa, Mary also has difficulty staying awake. Unlike Lisa though, Mary cannot seem to get comfortable. She tries curling up with a heating pad in a big comfortable easy chair, but she has to constantly shift her position as different parts of her body send out pain signals. First her lower back and then the back of her thighs are aching. She straightens her legs and rests them on an ottoman, but soon she has numbness, and an unpleasant tingling feeling radiates down her left leg. Curling to the right puts pressure on her right arm, causing it to tingle and go numb. Curling to the left provokes the same sensations on the left side of her body.

Despite the discomfort of her fibromyalgia, Mary has the good fortune to remain fairly mobile and agile. She can still climb in and out of a bath tub easily, many fibromites cannot. Finally giving up on the movie, she takes a long soak in a hot bath, which helps to ease the aching somewhat. Unfortunately, she will not sleep nearly as well as Lisa. Characteristic of fibromyalgia is sleep disruptions throughout the night. Mary never sleeps well. She also takes an over-the-counter painkiller and heads to bed.

Mary tosses and turns all night. If she rolls to the right, her right arm goes numb and the right hip pains her, roll to the left, the same. Lie flat on her back and her lower back hurts, and she could never sleep on her stomach. All night, Mary flops around like a fish out of water. She wakes up every time a new pain starts or a part of her body goes numb. She falls into a restless sleep by early morning.

Mary awakes at her usual time. She is exhausted, but she can’t sleep anymore. Her body aches all over and she is uncomfortable. Her brain feels foggy. She gets out of bed, and goes through her morning routine. Bathes and eats breakfast. By the time this is done, she is even more exhausted. She needs to close her eyes, just for a few minutes, she’ll feel better in a few minutes. Mary dozes fitfully for an hour, then gets up for a drink. Maybe some caffeine will help. It doesn’t. Mary aches from head to toe as if she has the flu. Even her skin hurts. Her brain is cloudy and reading the paper is difficult. She just can’t make sense of the words. Henry, her border collie, lies dejectedly by her side. No walk today.

Mary has entered what fibromites call a flare. By over-exerting the day before, she triggered a flare-up of her fibromyalgia symptoms and trouble spots. Mary won’t be right as rain tomorrow. It could take days or even weeks of rest − depending on the extent of her fibromyalgia and other contributing factors − to return to a level of normalcy again.

This is the difference between someone with fibromyalgia and someone without. Those without fibromyalgia do experience pain and fatigue from their over-exertion. Those without fibromyalgia do not have daily chronic pain, fatigue, and many of the other symptoms associated with fibromyalgia. They will be right as rain by Monday, if not Monday, at least by Tuesday. They won’t miss work or be confined to the house or bed. They won’t become socially isolated, because they are just too tired to go out, and tired of trying to explain why.

Monday, March 21, 2011


I am so tired this evening. The fatigue that had been creeping up on me all week stopped me dead in my tracks. I'd wake up sluggishly each morning, repeatedly hitting the snooze, but I had so much to do -- appointments, my books, taxes.

I blamed the muscle relaxer for the morning sluggishness. That can be a side affect, but I didn't really believe it. I've often taken this prescription at bedtime and not been groggy at all the next morning. I never take anything stronger than acetiminophen during the day, and I hadn't taken any in quite a few days.

But after a morning meeting, followed by errands, I returned home. There was a break in the rain, so I headed back out to walk the dogs. It was still dry when I got home, so I refilled my wood rack in the mud room. "Better beat the deluge," I thought.

I fed all the pets, and then I sat down to a nice salad and some homemade bread. That's when I slammed into the wall. I was so exhausted, I wanted to head straight to bed, but I have rules. No napping in the early evening. So I took care of some email, it was only 6:30.

I just wanted to sleep. My back ached between my shoulder blades. The pain radiated down my spine and spread out to my hips. Attached to my aching hips were two extremely heavy legs. The muscles were tight and and achy right down to my toes.

I did not go to bed at 6:30, but I didn't have the energy to do anything else I had planned for the evening, like my taxes. I'd never be able to make sense of the entries. I decided to watch a movie instead.

My hands are stiff and tight as I write this. It hurts to lean on my elbows. Sharp pain, like I'm resting them on small stones.

Maybe it's the weather. A rain system moved into the area with strong winds. Maybe it was the doughnut I couldn't resist at the morning meeting. I did try to make up for it with a really healthy salad this evening. Whatever the cause, I am not setting an alarm tonight. No appointments until later in the day. Hopefully, a good night's sleep will bring me back from the dead.

Saturday, March 19, 2011

DST - End of Week

So at the end of the first week of DST, how have I done? Not too bad overall. I hit a wall Thursday, after an early morning follow-up visit to my mother's surgeon, followed by some morning skiing.

Thursday was a gorgeous spring skiing day, and towards the end of the time I had allotted myself, I became very hungry and my legs became very heavy. Now the hunger you would expect. I skied for a couple hours, but I also ate a very early breakfast and then another one just before skiing to compensate. So I don't really know why I was so hungry. The heavy legs were a sign I was pushing a little too hard.

I went home, had some lunch, and then the fatigue overwhelmed me. I had to take a nap. I slept for nearly two hours and woke up groggy. Once I got moving though, I managed to walk the dogs, and start some bread dough.

I had expected some fatigue beyond the norm this week, so I allowed myself some more down time and watched a movie. I  headed off to bed rather early. I took an Ambien that evening to ensure I slept. (One of these days I'll blog on my thoughts about different treatments for fibro.) I allowed myself to sleep in on Friday, and then I jumped right back into activity.

I hit another wall today (Saturday) after skiing. We had two beautiful days of spring weather. Today it dropped into the low 30's and snowed lightly. To make matters worse, it was the spring carnival. So my friends and I picnicked in what now felt like bitter cold weather after the warmth. Sucked the life right out of me! I was so cold that I had to take a hot bath and a nap. I can't say that I am particulary perky now, but I did manage to walk the dogs and bake some more cookies.

I think the biggest problem I am having with DST is that I am finding myself ready to crawl into bed about 7 pm. Even for me, that is a bit early. I don't believe my pain is any better or worse, but I am a little more tired lately. I hope that I will wind back up and shake this off, rather than winding down like I have done in the past, resulting in a flare of chronic fatigue for weeks on end.

I will listen to my body tonight, and allow it some rest. The funny thing about fibro, is you never know whether or not resting really makes a difference. Sometimes you take perfect care of yourself, and you still flare. Sometimes you take terrible care of yourself and you don't flare.

So what's with all the baking? I am experimenting with some new recipes. Here's a little plug for my side business. If you live in the Rochester, NY area, I have a booth at the Mendon Farmer's Market during the summer. I sell baked goods and my artwork. If you're in the area this summer, come visit me!

Friday, March 18, 2011


It feels good to feel good. Working on this book has given me some real motivation. The motivation gives me energy. I have a lot to do, and it is interesting.

Writing this book is really pulling me out of a slump that I have been in for over a year. If nothing else comes of it, my fibro has at least become less pervasive. I firmly believe that enthusiasm about something, as well as, exercise and a healthy diet is vital to improving fibro symptoms.

Does this mean that we are missing the obvious? That if I am active and happy, fibro goes away? No, not really. I still don't sleep well. I still have my muscle aches and trouble spots. I still suffer from irritable bowel syndrome (IBS), but what I do have is anticipation.

I find myself eagerly rising, no matter how bad I feel, to do something worthwhile, exciting, and interesting. The energy these feelings generate, helps me to overlook my discomfort and even to some extent, lessens the symptoms of fibro. I feel generally happy right now.

Wednesday, March 16, 2011

DST Continued

My mother's was scheduled to arrive at 7:30 am for surgery this morning. That meant I had to get up at 5 am. Since DST has only been in affect a few days, my body thinks that it is really 4 am.

I tried to go to sleep early. Technically, I had about seven hours in bed. I slept okay for me. That means I had no major pain and no major sleep disruptions. That doesn't mean I slept soundly through the night. Those precious sleep moments are few and far between, but it wasn't one of my bad nights.

Knowing I had to be somewhere, I got up easily. It's amazing how that works. When you know you have to do something, you just do it. Even now, at the end of the day, I feel tired and a little achy, but not exhausted or flare-like.

The morning was cold and damp. The rain from the night had slowed to a drizzle as I left. The temperatures were in the low 30s. What a change from yesterday, when it was sunny and near 50.

At the hospital, I was feeling my fibro. Sitting in the waiting room, my arms and legs would start to ache, and then go painfully numb. The pain and numbness would radiate down my shoulders to my hands. It would also radiate down my legs to my feet. It was difficult to sit still. I constantly shifted positions. I get pain and numbness like that often when sleeping, but not usually during the day. So either my early arisal or the erractic weather was affecting me.

Despite the early day, and the achiness while sitting still, I was on fire. I shopped, I baked, I walked the dogs, worked on this book, and even did 20 minutes of Pilates. I was bound and determined to stay on my schedule and get things done.

Tomorrow, I have another busy day. Mom and I return to the doctor, at the same unearthly hour, to have her eye checked. Then I plan to ski for a couple hours and work the rest of the day. I can sleep in on Friday, and hopefully, mitigate the effects of the past few days. So with this ambitious schedule, can I avoid a flare? Stay tuned for more on the DST saga.

Tuesday, March 15, 2011

Pre-DST: A Day of Rest

DST Update: So far not great. I went to bed early last night and tried to sleep in a little, but unfortunately, I did not sleep well. My hips have been hurting, and I can't get comfortable. It's going to get a little worse this week, because I have to take my mother for cataract surgery. That means two very early mornings.

A Day of Rest

I gave myself a day of rest. Not because of my fibro, but because the past week had been very busy and I wanted to vegetate for a day. I slept in, had a leisurely breakfast, read, and watched a movie. There are still a thousand things that need to be done, and I did do a couple of chores, but all in all, I relaxed. 

How is this different from the downtime from fibro? The difference is I could do anything I wanted, and I chose to relax. When I slow down because of the fibro, it is not a choice. It is a necessity, and it is not relaxing. If anything it is exhausting because I suffer the guilt of feeling that I should be doing more, and I suffer from the inability to do so.

Monday, March 14, 2011

Daylight Savings Time (DST)

I love spring, when everything buds and shows signs of green. I love the birds chirping, and the temporary waterfalls created by the snow run-off on my hill. I love daffodils and tulips and crocuses with their bright gaudy colors. I love the burst of gold from the forsythias, and I love all the flowering trees in their pale pastels. I love the earthy smell of the air, and the emerging warmth from the sun on my back as I work in my flower beds. I also love the longer daylight hours that DST affords us. The problem is that both the emergence of spring and DST are brutal on my body.

The constant pressure changes as spring battles to subdue winter wreaks havoc on my overly sensitive neurological system. One day I feel great, the next day I can barely move, and I battle with constant exhaustion at this time of the year. Even worse, though, is the time change.

We only advanced our clocks yesterday, so I have not yet begun to feel the effects of springing ahead. But this time change can be brutal, my body needs a regular schedule. When it suddenly finds itself waking up at what was 5 am, now disguising itself at 6 am, it sends my body into havoc. Spring is when I suffer the most serious effects of chronic fatigue, sometimes lasting for weeks.

Interestingly enough, when I talk with friends, and they mention after the time change that they are tired. I'll say, "it's the time change." They always seem surprised. "Oh, I never thought of that." Why not? Your body is getting up an hour earlier everyday. If you set your clock for 5 am in the winter instead of 6 am for a week, wouldn't you be more tired that week? 

Take for example some of these headlines:
Springing Ahead: Is It Hard On Your Health?
Experts Say Daylight Saving Time Affects Sleep Cycle, Circadian Rhythms,0,7658463.story

Is Daylight Saving Time Bad for Your Health?
The Lasting Effects of Lost Sleep

Daylight Saving Time: How to Recoup That Stolen Hour

If you take time to read any of these article, clearly you'll see that there are health risks associated with DST.

I am well aware of how the time change affects my fibromyalgia. The question is, armed with this knowledge, can I avoid the fatigue I've experienced in the past by allowing myself more time to rest over the next few weeks? Will my schedule allow for the rest I need to prevent a flare? Stay tuned!

Saturday, March 12, 2011

The Princess and the Pea - An excerpt from Portraits of Fibromyalgia

Many of us are familiar with Hans Christian Andersen’s fable, The Princess and the Pea.  In this story, the royal family searches, with great difficulty, for a wife for their son. The intended bride must be a princess and a suitable candidate was hard to find. They devised a test that required the bridal candidates to sleep atop several mattresses and featherbeds with a pea underlying the whole structure. Only a princess, with her royal sensibilities, would find this unbearable.

It is firmly my belief that the royal families of the fairy tale suffered from fibromyalgia. For after a night’s sleep on the aforementioned bed, not only did the princess toss and turn all night, clearly suffering from the classic sleep disruptions of a fibromyalgia sufferer. But she woke up black and blue from the discomfort of the pea. Only a true fibromyalgia sufferer could experience the kind of sensitivity that the princess did. It is apparent to me that just as the Hapsburgs of Austria passed hemophilia through their royal bloodline, the royal family from which this princess descended bestowed fibromyalgia upon their progeny.

  So, what exactly is fibromyalgia? Unfortunately, there is no good, concrete answer to that question.  A diagnosis of fibromyalgia is often given because of what it is not.  In other words, if a physician suspects a patient is suffering from fibromyalgia, he or she will perform a series of tests for a variety of possible ailments. If the tests all come back negative, then it might be suggested to the patient that he or she is suffering from the effects of fibromyalgia.  And just like many similar disorders such as rheumatoid arthritis, lupus, or hypothyroidism, there is no known cure.  In fact, there are few ways to relieve the pain and exhaustion of fibromyalgia.

Friday, March 11, 2011


It's amazing how I can have a terrible night's sleep, and after a hot soak and a good breakfast, be raring to go. This is the adrenalin that kicks in when I know I have a lot to do. I can run for days on empty, but if I do this, I'll eventually crash hard.

I made the mistake last night of believing I could sleep without any pharmaceuticals. Even though I skied, walked the dogs, did yoga, in addition to numerous other errands, I didn't feel too tight. So I skipped the meds.

I took my usual hot soak to relax my muscles and mind before bed. Then I played a breathing CD as I drifted off to sleep. If you believe the experts, I should have been situated for a perfect night's.

It was too warm. The temperature had risen earlier that day. My wood stove had been going and the sun shone brightly causing my passive solar panels to kick in. The end result was a nice warm house. The problem, it wasn't cooling down. I like my sleeping temperatures in the sixties.

After two or three hours I woke up sweating. I kept kicking off the blankets. A throbbing pain had started in the lower back and was getting more intense. The pain was starting to affect my hips - a problem spot for my fibro.

I tossed and turned all night trying to find a position that didn't hurt. Just as I'd drift off, the pain would wake me and I'd have to change positions. It wasn't a simple matter either. I can't just roll over and go back to sleep. My limbs are hot, stiff, painful, and heavy. It's a mighty effort to change sides.

My pets are also sensitive to my insomnia. When I start tossing and turning, it keeps them up. The two labs were behaving pretty well, but they still got up a few times during the night to run out through their dog door into the yard and bark at things -- usually just as I started to fall back asleep.

The younger cat was over-stimulated by all the activity. She took my agitated movements as a signal to frolic loudly in the hallway. Then she would run back into the room to check on me by walking all over my extremely sensitive muscles. She repeated this all night long.

I finally dragged myself out of bed painfully as the sky brightened. I'm up now. I feel okay, but I think I'll skip the skiing. I have races tomorrow and the next day. If I push too hard and let myself get too tired, I could get hurt. I think I'll take the meds tonight.

Wednesday, March 9, 2011

Resources in Rochester, NY

I attended a meeting of the Fibromyalgia Association of Rochester, NY (FARNY - last night. It was held at the Pieters Family Life Center ( I had an opportunity to talk briefly about my book, and was pleased by the group's reception of it. I also was able to line-up a few more interview subjects.

Barb Cacia spoke about nutrition and diet as it pertains to fibromyalgia, but her advice was appropriate for anyone who cares about his or her health. The Pieters Family Life Center offers some excellent programs for those looking for education on health or rehabilitation and physical therapy services. Please see their website. I have added the link to the top of my blog page.

FARNY has an interesting line-up of speakers. Please watch their website, also available in the links above, or visit their Facebook page.

Tuesday, March 8, 2011

My Diagnosis

My husband and I were DINKS (dual-income-no-kids). We owned a gorgeous new home in one of the up and coming suburbs of central-New Jersey and we both had great-paying jobs. On the outside, we couldn’t be a more perfect couple, but as we all know, looks can be deceiving. My husband was a cancer survivor, and although we wanted to start a family, his illness left him infertile.

To make matters worse, I started having lower back problems that continued for months. Sometimes the pain was so bad it nauseated me. Some mornings, the pain was so bad I had to take painkillers and return to bed. Being relatively young, and having never experienced chronic pain, I naively thought the problem would go away.

When I repeatedly sprained the same ankle, I finally decided to see a doctor. After all, I could live with nauseating back pain, but falling every other step was really inconvenient. After many therapeutic treatments with no success, I mentioned to the podiatrist that the ankle pain radiated up my leg to my back. “I think you have another problem,” he responded.

He sent me to a back doctor who diagnosed degenerative disc disease in my lower back. Now, you may be wondering what this has to do with my fibromyalgia. We all know people who have bad discs in their backs. My back and ankle problem had nothing to do with the eventual diagnosis, but it was the first step towards the diagnosis of my fibromyalgia.

Shortly thereafter, I started having intense pain in my upper back and shoulders. My doctor immediately assumed it was more back trouble, and I was sent for an MRI. When the doctor received the results, I was informed that the upper discs of my back were fine. He asked me to lie face down on the exam table and started poking at me. I didn’t know why he was doing this, but some of the spots he pressed were so painful, I nearly leapt off the exam table. He diagnosed fibromyalgia, which I never heard of, told me I would always have some pain, prescribed an anti-depressant (often used to treat fibro), and suggested I read a book on the subject. I was 38. I can’t say this diagnosis shocked me or caused immediate life-changes. I had never heard of fibromyalgia and had absolutely no expectations.

My husband and I separated not long after the diagnosis. There was a lot going on in my life at the time. I was going through a divorce, starting a new life, and accordingly, suffering from depression. At some point I stopped taking the anti-depressant. I’m don’t know if it helped or not, and I couldn’t afford the cost of the prescription. A chronic pain diagnosis only muddied my thoughts and actions even more. It would take me a few years to sort out what was causing what.

Sunday, March 6, 2011

Time to Head to the Slopes

I am dawdling this morning. I want to go skiing, but it is bitter cold and I'm a little fatigued. So I am lingering over hot chocolate and my journal. If I dawdle much more, I'm going to find myself back in bed.

It's cold inside and very cold outside. My hands are cold. All this cold makes me stiff. I'm grasping my warm mug between my hands. I bring it close to my face and inhale the steam. I could go into hibernation right now.

I want to make something clear before I go on. I am not a doctor or clinician. I am just a person who was diagnosed with fibromyalgia. The only thing I am an expert on is how I feel day to day.

Today I am a little fatigued. It could be the cold. It could be the fibro. It could be ordinary fatigue. Who knows? I spoke about flares before, but what causes them? I'm tired now. I pushed myself hard the last few days with less sleep than I'd like. Does that mean that because I'm fatigued, I'm headed into a flare? If I get myself going and ski, will that make matters better or worse? I don't know. Sometimes when I push myself I feel great. Sometimes I pay for days.

The expected things are known to lead to flares. Too much stress, lack of sleep, lack of exercise, over doing it physically, weather changes, and hormonal changes. But do these things always lead to flares? For me, they lead to pain and fatigue, but a full-blown flare -- not always.

I try to control what I can, but that's not always possible. Could I have anticipated my clutch would burn out on my car? That I would have to dig my tires out of deep snow? That my neighbor and I would have to hook up his tractor, and while he towed the car down the hill backwards, I would have to manuever it? All this so that the towing company could pick it up by the road, since the truck couldn't negotiate my driveway.

Could I have predicted my father's heart attack at 3 am? That It would be the same weekend that I had an art exhibit, and the same weekend I had to turn the house over twice for renters?

Can I plan in advance for low barometric pressure that can lead to extreme fatigue and muscle pain?

I do the best that I can. I try to stay active. I try to get regular sleep. I play various types of relaxation CDs at bedtime. I do yoga and practice breathing techniques. I eat healthily overall, despite my penchant for sweets. But the reality is that no matter what I do, I have good days and bad days.

I always have some level of muscle pain and stiffness. I rarely sleep well, and I get flares from time to time no matter how hard I try to prevent them.

Well the sun is trying to shine. I am waking up. Time to head to the slopes. Brrrr....

Saturday, March 5, 2011

What is a Flare?

Why is it that somedays I can have a bad night and barely move the next day, and on other mornings after a bad night, I can go and go and go? Yesterday I was going. Today I am going. At some point if I don't get a good pain free sleep, I'll stop going and maybe even flare.

I think it is my mental state. Right now I feel positive. I don't feel overwhelmed. Nothing looks insurmountable. Then a day comes along when the car gets stuck in the snow, the power steering belt breaks, the dogs run-off, and suddenly the weight of the world comes crushing down. We all feel this way. This isn't peculiar to fibro. What is peculiar is how we deal with our symptoms depending upon the type of day we are having.

And what is the difference between a flare and normal aches and pains? Do fibromites only hurt during a flare? How do they know it's a flare? What is a flare? Very simply, a flare is when all your fibro symptoms exacerbate. To read another blogger's view on flares click the following link:!CFDF79294097A9AF!437.entry

As a fibromite, I often ask myself these questions. I know my aches and pains aren't normal. Why? because it is not normal to just hurt without any visible or identifiable cause. You can't point to arthritis or swelling and inflammation in my joints. Diagnostics show nothing. Yet some mornings I can barely unbend my arms and my hips ache.

I am quite strong, and in pretty good shape, but sometimes a motion as simple rowing, like that used in vacuuming or cross-country skiing, hurts my shoulders. Sometimes just lifting my arms up to brush or style my hair is painful. Nothing is torn or inflammed. I could drop and do 10 push-ups without pain, but do the other motions and it hurts.

When things hurt, I get tired more easily. When I don't sleep well, it hurts. What a conundrum!

But how is this different from a flare? In my personal experience, I always have some daily pain and stiffness. I rarely experience a sound night's sleep.

But a flare is different. A flare is debilitating. I might have flu-like aches and pain throughout the whole body accompanied by overwhelming exhaustion. Just pouring a bowl of cereal can wipe me out. I'll find it impossble to concentrate or have an intelligible conversation. I won't be able to focus on reading or television. I'll feel heavy, lethargic, and have an overwhelming need to sleep.

There are other things that might happen. Every person is different You know when you are in a flare, because you can't motivate yourself to go on. There's nothing left in you. All you can do is give in and hope it passes quickly.

How long does a flare last? Who really knows? I've had them last a day or two. I've had them last a week. I've had low-level flares for weeks where chronic fatigue was the defining symptom. In this type of flare, I could do what was absolutely required of me but no more.

Friday, March 4, 2011

Spring is in the Air

Spring must be in the air. I woke up with no pain today and very little muscle stiffness.

Thursday, March 3, 2011

All Fired Up

As usual, I'm a day behind on my newspaper. As I open it this headline catches my eye, "Study Questions Treatments for Chronic Fatigue." The jist of the story "--taking it easy is not the best treatment, exercise and behavior therapy are." Good! because I have had relatively little sleep the last few days. I am fired up by events of the last couple weeks, and I have a lot to do. What a change from a week ago.

I had another restless night. I took an Ambien with the hope of getting a solid night's sleep, but I didn't take anything for muscle pain. Too many things rushing through my head, combined with lots of pain and discomfort, completely wiped out the affects of Ambien. I woke up numerous times through the night in extreme discomfort. My arms and elbows were stiff and painful. The same burning pain from the previous night radiated across my back to each hip. My skin hurt.

Around my usual time, I awoke to my two very large labs hovering over me, waiting for signs of life. My younger cat lay on top of my painful hip. The moment I opened my eyes, the dogs were ready for action. They pounced with wet tongues and large clumsy paws.

"I'm not getting up yet," I groaned irritably. I struggled to roll into a fetal position, finally toppling the cat from her perch. My muscles were stiff and screaming. I had to get into a position that alleviated the pain enough so that I could eventually sit up.

After some of the muscle tension subsided, I ran the water for a hot bath. I don't have any jets, but I am fortunate to have a large soaking tub.This is not a morning luxury. A hot bath is an absolute necessity for me. It is my morning therapy. Soaking loosens the stiffness and alleviates the pain. When I arise from a hot bath, I feel energized and loose.

A shower doesn't cut it. It doesn't get deep into the muscles. A shower is a way to get clean quickly. A bath is physical therapy. I also use warm baths to alleviate the discomfort of Raynaud's Syndrome and to help me get into a sleep state before bed. I am determined to never lose my ability to bathe.

So now that I am warm and loose, why am I so excited? Volunteers for this project are coming in by the handfuls. I am only in the third month and I no longer fear not having enough subjects. I am thrilled because whether or not a publisher becomes interested in this book, the ones with fibro see it as a viable opportunity to help themselves and others understand this syndrome. I am also excited because a dance venue in Rochester, with a nice wine and coffee bar, is willing to show my art this spring.

So despite my initial fatigue, I am ready to accomplish things today. Fired by the determination of those I've interviewed so far not to let fibro interfere with their lives, I hope to continue to get much done in the next year. Of course, I might need a little Tylenol to set me on my way this morning.

Wednesday, March 2, 2011

Restless Night

I had a restless night. The earlier afternoon energy had passed. I tossed and turned with body aches all night. All the dampness from the night air seemed to seep into my body and swell my skin until every pressure hurt. I avoided looking at the clock, but I felt like I awoke every hour to change positions. When I did sleep, the pain permeated my dreams.

After a night like this, often by the time I've bathed and breakfasted, I find myself wanting to sit down and close my eyes for a few minutes, but it is February and spring-like. Winter returns in a few hours. There is lots to do today. I will perservere and enjoy the warm weather while I can. I'll try and make up the sleep tonight.

Tuesday, March 1, 2011


Some days, I seek oblivion. Don't misunderstand me. I am not suicidal. I don't seek death. Death is unknown. It could be heaven or hell or something entirely different. Oblivion is clearly defined nothingness--no pain, no fatigue, no guilt, no thoughts. Oblivion is being able to shut down and feel absolutely nothing.