Changes for Better Sleep with Fibromyalgia

Insomnia was one of the symptoms that helped my doctor diagnose Fibromyalgia.  For some reason, we fibromites cannot seem to reach the deepest stages of sleep, and frequently, it can be difficult to get much sleep at all.  I have spent several years, including a handful of really bad months straight, waking up around 2am or so and not falling asleep for several hours, or sometimes, not falling asleep at all the entire night.  Today, thankfully, I have finally got a good routine of sleep going again.  If I can't get the quality of sleep I need, I'm at least getting the quantity, which still makes a big difference for me and my sanity.  So, for those of you going mad from insomnia, I thought I'd share what seems to be helping me catch more Z's.

Several things have changed for me, including the meds I take, as well as several of my habits and personal goals.  I try to notice correlations between how I feel and what I do or what is happening when I have questions about new or persistent symptoms that pop-up.

Journaling
I can't say enough about journaling, blogging, or at least keeping track of things quickly in a calendar or other logging medium.  When you wonder how long a symptom has been around, check your entries and eliminate the need for guessing.  If you wonder if the weather is behind an infrequent symptom, check your entries for clues.  When it's time to visit the doctor, prepare with bullet points and questions after reviewing your entries since the last visit.  Write stuff down, even if you don't think it's relevant.  Sometimes that added detail can be important later on.

Medications & Supplements

Firstly, like many of you, I am side-effect sensitive to lots of medications.  I've tried Lyrica, Cymbalta, Savella, I'd been on SSRIs and SNRIs, muscle relaxants, and Rx opioids for pain, plus several supplements, per my various doctors over the years.  I'm now happy to be OFF the meds that raised my blood pressure and body temperature and caused me more grief than relief for many months leading up to early last year.  I now only take one medication regularly: cyclobenzaprine (Flexeril).  I take it at night to allow the drowsiness help me fall asleep while it works to help relax my muscles.  I love it when I can get more than one benefit from one thing.  The muscles aren't "fixed", but it definitely helps and also helps me feel sleepy at bedtime.  I'm very glad the same dose is still effective for me, too.  On top of everything else, it's not a new drug, so I can get the generic version and not worry about ridiculous insurance copays.  (Stressing over health costs does not help one get sleep.)

Caffeine

My coffee maker sits in the pantry unless we have guests over.  I like the taste of black coffee and used to drink cup after delicious (and free) cup in the office, enjoying the warmth and aromas all day long. My husband warned me that I would become addicted.  "Pish posh," I told him.  "Caffeine doesn't do anything to me."  However, he was vindicated when he pointed out that I was getting headaches around the same time and day each weekend.  Needless to say, these headaches unnecessarily contributed to my less than restful weekends.  Once I realized my body was addicted to the caffeine, I made a conscious effort to reduce my intake of regular coffee at the office until I found a good balance.  So I now have one cup, or occasionally two cups of black regular coffee on any given day, before lunch time, and then switch to decaf, tea, or water for the rest of the day.  No more weekly headaches and sleep is much more available to me now.  I also stay hydrated better, which keeps headaches away as well.  It does make a difference after all.

Food

Another habit that have changed is my eating habits.  Over a year ago, I started eating fresh salads full of veggies, fruits, and healthy proteins and fats (beans, avocado, fish, etc.) every work day at lunch time, from a Whole Foods Market near my work.  I love fresh produce and I love knowing it's good for my body and filled with healthy fiber, water, and various nutrients to give my body a fighting chance against whatever is out of order.  I started on the salads to help me lose some weight, but optimizing my health is most important to me.

I also started mixing up smoothies with fresh and frozen fruits and vegetables after I saw a Vitamix demonstration at that Whole Foods one day.  I tasted a green smoothie that was made before my eyes with nothing more than a huge wad of spinach, banana, and some pineapple chunks (and water).  It was like green candy!  I was inspired and started pricing the fancy blenders that night.  Yikes, they are expensive!  Then I realized my blender at home (Waring Pro) has plenty of horsepower in the motor to blend up smoothies at home at no additional cost!  

I started with some simple recipes I found online (including that spinach, banana and pineapple wonder) to get the proportions right, but after a few times, I eyeballed everything and made up new recipes.  Pinterest has plenty of interesting smoothie recipes to try.  It wasn't until my husband wanted to lose some weight that he got into making smoothies every weekday morning for breakfast, and a full pitcher is enough for 2 servings, so I get whatever he makes.  I really love them!  If you like fruit, but hate the veggies you know you should eat, definitely try blending them together for a tasty and nutritious, and easy to digest meal.  You can get creative and add all sorts of fun things, like nuts, seeds, honey, dark chocolate, nut butters, squashes... anything you can blend, basically.  Experiment and find your favorites.

Physical Activity
I made a pretty easy resolution this year to make sure I exercise at least a little bit every few days.  I have been doing yoga classes weekly, but when those went away, I took what I learned from class and did my own custom routines at home.  Yoga is one of several activities I do for exercise.  Others including walking, getting on the elliptical machine, stair-climbing, and various gentle stretches and exercises for my hips and back - areas I need to keep strong and stretched to keep some of my troublesome symptoms down.  The idea is to keep moving to try to prevent those awful muscle spasms, keep my blood circulating, and of course, to keep my weight healthy.  I noticed that keeping track of my activities helps motivate me to do more.  I provide a link to my activities in this exercise focused post.

Sleeping Positions

Before Fibromyalgia came along, I always used to prefer sleeping on my side, but I recently started to notice that, although I can fall asleep on my side, I almost always wake up on my back.  I used to hate sleeping on my back, but with everything in some level of pain, it makes sense that my hips, knees, and shoulders all feel better when I'm not putting pressure on them.  So now, when I'm ready to go to sleep, I frequently settle into position on my back with my head slightly turned to one side, especially in the middle of the night, or if I'm having a particularly painful spasm at bed time.

Everyone is different, of course, and there may be things I didn't remember to list or didn't realize make a difference with sleep.  If you have other tips for better sleep for fibromites, please feel free to comment.  Sweet dreams.

That Fibromyalgia Study

If you haven't read or heard about the recent study that seems to prove Fibromyalgia is a physical disease, take a look...

http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/ (complete with pictures)

http://www.intidyn.com/Newsroom/article-0008.html

http://chronicfatigue.about.com/b/2013/07/02/too-many-nerves-new-pathology-discovered-in-fibromyalgia.htm

http://www.ncbi.nlm.nih.gov/pubmed/23691965?dopt=Citation

A friend found and shared the news about this with me on June 23rd (via the first link above).  To my knowledge, he is not a fibromite.   I was actually pretty surprised that I hadn't come across it myself, first.  I'm connected to several, reliable sources of information about Fibromyalgia.  Perhaps they all waited cautiously, as I did, to check it out before sharing it, and possibly spreading false hope.  Many FMS patients have been on an emotional rollercoaster with these kinds of studies and the approved medications that usually go with them.  As you probably know, it's not fun to get your hopes up, try new meds, then crash with horrible side effects, lack of intended effects, and even depression at having fallen for another one of Big Pharma's nasty tricks.

I take this news with some hope and definitely with grain of salt.  It's an interesting find and could be a very exciting discovery, and I have shared the news with others I know who have Fibromyalgia, but it's so easy to get carried away, hoping for a cure (again).  However, I look forward to a repeat study with more subjects, and hopefully more insight.  Only time will tell if there is anything for us patients to gain from this.

Keep studying, scientists!  We are relying on you.

Livin' La Vida Enferma

The life of a fibromite is riddled with setbacks.  And they always seem to be surprises, too.  You'd think I would expect the flare-ups and sick days, like today, but no.  I still have some crazy hope and idea that I'm able to overcome this lifelong condition.  Alas, I do realize that I am doomed to always live "the sick life".

Overall, I would still say I'm doing lots better than I was a few years back, especially in the early days, before and just after the official Chronic Myofascial Pain and Fibromyalgia diagnoses.  Back then, I did not know very much about these conditions, nor what affects them.  Today, six years after the incident that triggered it all, I have learned a lot about the conditions, the symptoms,  the treatments, and how my body behaves, including the flare-up triggers, and the things that seem to help me.  I now have a basis for maintaining some sort of basic, pseudo-normal lifestyle, complete with a full-time office job, marriage, vacations, hobbies, chores, and problems.  Although it's still very easy for me to forget how fragile that balance is.

Blame the fibrofog (which has really been oddly worse lately, or I'm more aware of it these days) or blame the hope I give myself when I see how much progress I've made with living with chronic health problems over the years.  I am frequently finding myself scratching my head over what caused the last flare-up.  Today is one of those times.

So, I've been doing my exercises, as you saw in the last post.  I've been eating lots of veggies, fruits, nuts, and good, healthy food.  I've been having my back massaged every couple of weeks to keep the tender points in check.  I've even taken a vacation recently to relieve stress.   Yet, here I am, with headache in my nose/face, aching in my bones, some more digestive issues, and fatigue.  Looking back, I remember complaining about a new pain that has crept up in my chest (I think Costochondritis), and the digestive stuff for a few weeks now, but I assumed that if I kept doing what I've been doing to stay healthy, that they would just pass quickly.  I guess the lesson learned today is that I cannot assume that in the future.  They are red flags that I need to remember to take seriously.

Knowing myself, I know I'll have to repeat this lesson.  It's extremely difficult for me to decide to stay home from work with so much going on there, just to try to stave off a flare, when I notice a slight worsening of my usual symptoms.  Yet, here I am, knowing that it's the right thing to do and paying the price (again) for deciding to push through the pain.  I think what I fear is never really knowing if a flare would have occurred if I ignored the signs.

For example, I noticed more IBS problems than usual have been occurring for the past few days.  Let's say I make the conscious decision to take a day off work to rest and treat the symptoms.  I feel better by that afternoon.  Then I feel guilty for staying home and not going to work.  But this is where that logic fails. Had I not taken the day off, I would find myself at work, trying to subtly attend to my IBS symptoms between meetings and obligations, stressing, rushing, and making things worse, which would eventually trigger a flare-up of more Fibromyalgia symptoms.  I would not be maintaining my pleasant demeanor at the office, causing more stress from the damage to my work relationships (true story, by the way).  The next day, my body shuts down on me and I am forced to stay home because I cannot function.  Thus, today's predicament.

Damn this lunacy!  I know better and need to remember better.  I need to realize that admitting that I'm noticing a flare-up is not some kind of blow to my ego.  I am doing my best and sometimes it's not enough for the fibrobeast.  I just need to let go of that and do what I know is best: rest.

I've read so many articles and blog posts about this problem.  I will think about this more and hopefully plant a seed in my brain about being more aware about the delicate balance between being a high-functioning fibromite, and the Mack truck version of me.  I'll try to come up with something that will remind me of the right thing to do at the right time.

How are you handling your Fibro flares?  Are you reading this and nodding empathetically, or have you got a method that helps prevent disaster for you?  I'd love to read your comments on this topic.

Attitude is Everything

I recently visited wonderful rheumatologist, to follow up on my last visit.  Good news! My blood pressure is no longer ridiculously high.  The last time I had it measured was mid-October by my gynecologist, who ordered me off Seasonique because of estrogen contributing to the high blood pressure.  Back then, it was as high as 150/97 (the last and highest of 3 readings in that one visit).  Today, it's down to 125/87 (the second and lower of 2 readings today).  According to the wikipedia page on Blood Pressure, I moved from stage 1 Hypertension to Prehypertension.  I'm just one category away from normal.  Isn't that what we fibromites all strive for?  Normal?  I'm getting there.

My doctor was also very proud of my improvements in overall pain levels and lifestyle changes to be healthier.  I've been eating healthier foods and making sure I get some exercise in at least every couple of days.  I'm keeping up Yoga on Wednesdays and my Whole Foods salad lunch habit.  I've also added elliptical workouts (usually 15 or 30 minutes) and climbing stairs in the building where I work.  (4 floors, up is all I can do right now, but I'm pretty impressed anyway.)

Since my symptoms are mostly under control, she is keeping me on my nightly Cyclobenzaprine (Flexeril) for muscle relaxing and sleep, and leaving the rest up to me to control by living my life as well as I can.  Being on few medications is just the way I like it!

Although, I have been noticing some more heart rhythm issues lately, especially upon waking, and I did not realize until looking up the link just now that this medication warns about that.  I've had atrial tachycardia since I was a teenager, and episodes are usually short, but can last hours, and they can be slight or kind of scary feeling.  I wish I'd known before my last appointment, so I could ask the doctor about it.  I'll have to note that and give her a call to see what she says about it.  Every doctor I've seen about it pretty much shrugs and says some people just have this and they aren't sure why.  One cardiologist offered to fix it with a new heart surgery that would cut the electrical route that triggers the arrhythmia.  I don't feel it's enough of a concern to risk surgery, so I am just kind of dealing with it.

Because I still mentioned that my right hip gets stiff if I sit too long, she also asked me to do several hip stretches every day.  She gave me a printout with instructions for five different ones to do.  I have been adding them to my morning routine already.

Oddly, though, after bragging about how great I've been doing, I had a weird kink in my back, headaches, knee pain, and some minor digestion issues, plus tinnitus and a weird hour-long episode of partial deafness in my right ear.  Did I jinx myself?  At any rate, I think I may just be paying attention to many of the things that were called out during the appointment, and feeling just about average for me lately, if that makes any sense.  I do still deal with FMS and the unpredictable symptoms.  But, I'm not going to worry about it and just assume it's nothing unusual.  I'm on my way to feeling more normal and feeling more in control of my health these days.  YAY!  Attitude is everything!

Wanna jump for joy with me?  Well, if you're not up to it, you can just do a mental happy dance, if you like. 

My Life at Forty

Ahh, life.  What is life?  It's consciousness, the ability to use energy and do things.  It's about choices as well as things that just kinda happen.  Some of my experiences are the results of my choices or the choices of others.  Some things also just happen.  Sometimes it's fun and happy; other times, not so much.

I turned 40 earlier this month.  I never used to care about age or understand why some people lie about their age.  "It's just a number," I would say to people.  30 was no big deal.  I felt fine with being a thirty-year-old.  It was just another birthday, though I do remember having a small party to celebrate it.  I suppose it was an excuse to to have a celebration and enjoy some pizza and cake with people.  Oh, and drinks.  Many, many drinks.  It was a good time.  I eased into adulthood, perhaps happy to leave the immature twenties behind.

In the weeks leading up to my 40th birthday, however, I kind of felt something new.  I kind of kept reflecting upon my age, my health, my death.  Will I live another 40 years?  Is this really the middle of my life?  The past forty years seem to have been short - will the next forty also feel short, or even shorter? 

I'm still not much for lying about age or denying it to myself.  I am facing these thoughts, mostly out loud to my husband, who turned 40 last year.  It's weird how I never anticipated this birthday being much more than some random milestone assigned by society.  I'm starting to get what those "Over the Hill" birthday party favors and gag gifts are about.  It's a way for everyone to acknowledge these feelings, but tempered with some humor.  I suppose celebrating birthdays with people both older and younger than yourself is really the right way to do it.  The older folks have gone through it already themselves, and survived!  That's encouraging.  The younger folks remind me of my younger days, not expecting to know what reaching older ages is like, both physically and mentally. 

Now that I've been "wearing" 40 for a few weeks, it seems to be less scary.  I still have to face the facts that I am now in a new age group.  Mammograms, colonoscopies, and bifocals are surely lining up for me in the near future.  I've had a few mammograms already - and yeah, OUCH - they are not fun.  But assuming the results keep coming back negative for any abnormalities, I'm okay with that. 

I came close to getting a colonoscopy back when my IBS was flaring up over several months, but as luck would have it, my awesome GI gave me a new medication that actually worked and we canceled the exam.  I am also aware of the process, as my husband has had several colonoscopies, due to his Crohn's disease.  It's not fun, lasts longer than a mammogram, and is pretty inconvenient, too.  Still, I can get through that.  I also have had an endoscopy done, if that counts for anything.

As for bifocals, I'm already nearsighted since high school, and usually opt for contact lenses to correct my distance vision.  Since that car accident in 2006, though, my vision has changed in several ways, and continues to change rather frequently.  I already notice my very near vision has become blurry, making reading fine print challenging.  Again, though, perhaps a prescription change is not so terrible.  I've been managing corrective lenses thus far.  I can probably handle that.  I guess.

So, these are not so scary.  Aging gracefully may still be an option for me.  Many folks make it to 80 and 90 in relatively good health.  With lifelong conditions like Fibromyalgia, Chronic Myofascial Pain, and Asthma, I understand I have additional challenges, but I also understand that being as fit as I can be is the key to empowering me with the best health I can achieve.  I know that eating healthy and staying active goes a long way toward preserving good health, so I will strive to do those things.

Some other recent events have also caused me to reflect on my age and mortality. 

Near the end of the workday on my 40th birthday, my husband suffered a severe kidney stone attack.  The stone was 6.5mm across and was stuck very near the left kidney.  I'll spare you the details, but life was miserable for him for several weeks thanks to this surprise.  We had to cancel my birthday party, and he felt bad about that, but I wanted him to feel better and stay close to home in case of any complications.  He's passed some of it and is feeling much better now, finally.

I also recently learned that my mother-in-law had suffered a stroke.  This was not her first, but it seems more serious that the one she had before I met her.  Although she was told that one side of her body will not recover this time, I am hoping that she can beat the odds and regain some function and sensation that was lost.  Thank goodness it was not her dominant side and she can still do some things.  I'm also glad that she can talk and remember us all. 

As we approach the year 2013, I have listed a few new resolutions (which I never used to do until 2012) that take into consideration my age, my health, my family, and my wants and needs.  I wish to be more responsible with my own health, as an investment of my old age as well as to help relieve others of the need to worry about me.  This includes considering making decisions and arrangements for what will happen to my remains when I die.  I feel it's the responsible thing to do. 

When life manages to give me warnings, I strive to make the most of it, whether it's through me or others, and learn something from it.  I won't live my life sheltered, but I will not live recklessly if I can help it.

Take care and do pay attention to your own body and look for the warning signs that could help keep you healthy and young at heart.  I hope the next year brings you closer to your personal goals and opens your eyes to wonderful opportunities! 

Blood Pressure - Still High Despite Getting off Savella

As you may or may not recall, the earlier part of my year has been tarnished with an unnecessary spike in blood pressure that could have been prevented by my former Fibromyalgia doctor.  Here's the post describing the worst of it.  Once I realized the cause of the blood pressure spike - two medications that should not have been taken together - I promptly got off both drugs, expecting my blood pressure to return to normal soonafter.

Unfortunately, months after getting off the drugs, my blood pressure still remains elevated, as I discovered during a check-up yesterday morning.  All my life, my blood pressure levels have been normal until January and February of 2012.  Now it seems something from that episode was changed in my body that cannot so easily be reversed.  After all, I've made several additional changes in my life to be healthier, starting in March or so when I adopted the habit of eating a healthy Whole Foods salad on workdays, and continuing through June when I started attending weekly yoga classes.  This blood pressure thing makes no sense to me. 

The doctor I saw yesterday was my gynecologist, and when she saw the elevated blood pressure reading taken by the nurse, she measured it herself, and got a slightly higher reading than the first one.  She wanted to make sure, so she also measured it again at the end of my exam.  I was calm and relaxed and she witnessed it.  The third reading was the highest, just as when I went to my primary doctor for the blood pressure spike earlier this year.  I hypothesized that taking blood pressure seems to raise it, but nobody confirmed that for me.  My final reading yesterday was something like 146/97, I believe.  She decided she ordered me to stop taking my current birth control pills (Seasonique/Amethia) immediately, since they contain estrogen, and apparently estrogen can contribute to high blood pressure.  This is news to me.  I was also somewhat surprised at the order, since I'd been taking these pills for many, many years now, when my blood pressure was fine.  Perhaps there's a cumulative effect or something else I'm not understanding. 

At any rate, she switched me to a progesterone-only pill while I mull over all of my options and my needs.  What I liked about my previous pills was the ability to minimize periods and their awful symptoms (for me), and being able to predict and schedule around periods.  With the progesterone-only pills (Micronor/Jovilette), I'm back to having less predictable periods and more of them.  I'm also considering Mirena, which my doctor suggested.  There are still some unknowns about whether it's the right choice for me, but I'm still researching that. 

Hopefully, getting off the estrogen will reduce my blood pressure.  I strive to be healthier, but seeing my blood pressure remain elevated through these healthier habit months is a bit frustrating.  I will read up on all the factors that can contribute to high blood pressure and see if I can change any other things for the better.  I do know there is a hereditary component, and my parents deal with hypertension. Plus I'll be 40 years old in a couple months, and age is also a factor.  This old body's not getting any younger, but I only get the one, so I'll do my best to take good care of it.

Sharp Nerve Pains in Left Shoulder and Neck

Lately, I've been working on improving my diet and doing regular exercise.  I've been pretty good about attending yoga and getting out for walks, and have also been good about eating fresh, healthy salads for lunch, and getting nutrients into my diet.  Last Friday, I tried a couple of veggie juice drinks instead of salad, to see if I would notice any difference.  Since watching Fat, Sick & Nearly Dead a few days ago, I gained more hopes that eating nutritious foods could be key to healing the body, or at least give it a fighting chance against the destructive forces challenging it.  There's a lot of crap in our processed foods, and avoiding it should help me.

Anyway, I tried a "Columbia Gorge: Just Greens" drink first. It was green juice made just from organic vegetables and nothing else.  Two pounds of veggies went into the bottle, so I figured it would have lots of nutrients.  It wasn't as tasty as I'd hoped.  Part of it had to do with celery being the first ingredient.  I'm not a fan of celery.  The drink was 50 calories per serving, with 2 servings in the bottle. 

I also tried this "Naked: Green Machine" one, which was the same size bottle as the other one, also contained lots of veggies, but also plenty of fruit.  I figured this one would taste better, so I saved it for relieving my taste buds after the other drink.  I also worried I'd get hungry, so I had both as a single meal.  The flavor of the Naked juice was great. It tastes like it's just fruit juice.  More fruit means more calories and natural sugars though, so I won't be having these regularly.  I believe this one was 140 calories per serving, with 2 servings in the bottle.  However, it's good to know that the option is there if I need some healthy stuff on the go.

There's also a troubling symptom affecting more often lately.  I am noticing a new location of searing, lightning-like, nerve pain on top of my left shoulder, going from my neck out toward the shoulder.  This is the third location of this type of pain that I've had to deal with.  The back of my right thigh is the first and oldest trouble-spot, and the pain jolts I still get in that area (affecting the sciatic nerve) has made me jump and shriek from sheer surprise and the sudden, severe pain level achieved.  When it hits, it usually keeps firing, rather quickly, for several minutes.

When I was first injured in that rear-end collision in 2006, there was about a week or so of the nerve firing almost constantly, and it even affected the left leg in the same area.  It was maddening to try to get through the day feeling like someone was chasing me with a hot brand, poking constantly into the backs of my legs.  I even decided that if it didn't subside, or if it was found to be untreatable and would affect me for life, I would probably have to think about killing myself.  It's not the kind of pain you can ignore.  I was being forced to constantly pay attention to the pain.  There are some dull pains you can ignore or get used to, so you can move on with your life, but this one is not like that at all.  It's a pain that startles you into acknowledgment over and over again, with only the rare second of relief in between jolts. This sicatic pain jolt thing affected me even before the car accident, but only very rarely.  I used to get these jolts maybe one day in a year and then forget all about it. 

Anyway, since the accident, the left sciatic nerve has been much more active, though I have had months without much of a flare-up there.  However, I'd begun to feel a similar jolt of pain in my right forearm.  It would just fire, unexpectedly, at random moments, on the underside of my forearm, right into my wrist.  And it's only been the right arm thus far.  This is the second location.  Here, the attacks would occur only occasionally - much less frequently than the leg thing, anyway.

But now, I've got this kind of pain occurring in my left shoulder-neck area, and it's been firing at least a few times every hour today.  It was doing it pretty frequently yesterday, too.  I also recall having to deal with it during the work week for the past week or two.

I'm confused about what this pain pattern means.  Naturally, I'm worried about some sort of nerve problem or damage, or impingement, and the fact that it seems to be spreading is no comfort at all.  I suppose my frequently spastic muscles could be squeezing these nerves, but with Chronic Myofascial Pain, I've been having problems with a lot or all of my muscles, not just certain ones.  I have considered the possibility that posture and habits could be causing these areas to be susceptible to either muscle spasms, which may be squeezing my nerves.  What I don't have is a treatment or prevention plan, other than to keep moving and stretching as much as I can.  I'm sticking to doing yoga at least weekly, and being sure to move around, even on bad days when I may not feel up to it.

If you recognize these nerve pain symptoms, or have any helpful information for me, please share in the comments.  Thank you.

The Mack Truck is Back

So I had two good weeks without many symptoms, feeling good and in control of things with diet and exercise happening and everything.  Then Monday, something started up and I'm flaring up for some reason.  Was I too greedy with doing things while feeling good that I triggered a flare by being too active and not resting?

Last night I was awake all night.  Not so much as a nap came over me - all flippin' night.  I tried relaxing in bed with ear plugs, without ear plugs, tried lying on my back, my sides, tried thinking of pleasant things.  Nothing.  Hours and hours of stressful thoughts about various things going on at work that have been bothering me lately kept creeping back into my mind and and I could not fall asleep.  The stress broke me.  I don't know what it is about the middle of the night, but I felt so hopeless and frustrated.  I moved to the couch and read blog posts in my Google Reader on my phone to try to take my mind off things, since I'd given up on sleep.  Forget work today.  There's just no way.  I am a wreck.  I took a much-needed sick day.

It seems my abdominal area is tender and painful lately, mostly near the left side.  Air bubbles or ulcers  - I don't know any more.  It doesn't seem to matter what I eat, unless the tiny bits of apple I found in yesterday's fruit started something, but I picked them out.  (I'm allergic to raw apple skins.)    I just feel crappy.  Then there's the back spasm in my right side that came back to life.   Even the hydrocodone I took at bed time wasn't helping that.  I wonder if the medication kept me up instead of making me drowsy.  Side effects don't always make sense in my body. 

I've been trying to stay on this side of the sane/crazy borderline, but last night I think I wandered over the line a bit.  My mental state seems back in good enough order, but my body is stuck in physical disarray at the moment, and notice that it affects my thinking a bit.

As always, when I stay home due to illness, I can't help but feel the invisible pressure of all those chores and tasks I have to do.  There is some compromise where I go and do a couple of easy things, but I have a hard time just resting, which is what I need to be doing.  For instance, I have been meaning to update my WRAP and wish I would do that, but I know I should not be at the computer too long with this spasm screaming at me.  I washed up our farm veggies (we have them delivered weekly from a local CSA, Wellhausen Farms) and made a healthy salad for lunch, but it took a very long time, and I was tempted to just grab something like cereal and leave it all undone.  Despite all the healthy ingredients in my salad today, my belly is also complaining again and uncomfortable.  I folded some laundry, too, because I knew it would nag at me if I didn't.  Despite my fatigue, I cannot rest easily at all.  This is one of the common frustrating symptoms of Fibromyalgia.

I hate that I can feel so great, then shitty, so quickly.  It makes me feel bipolar in some ways.  I was hoping I could coast through the summer feeling almost like a normal.  I guess I had forgotten my limitations again and overdone it with activities.  I will learn from this flare, just like with every flare, but I'm not enjoying this lesson.  Ugh.  Time for me to lie down.  I hope my next post is more fun than this one.

Getting Too Much of a Good Thing: Supplements

I think I've finally broken the spell of my latest IBS flare-up!  I was headed down one path, but switched gears when I thought of the second path - the one that just might be the answer.  Let me explain...

As you may know, despite a welcome increase in energy and function, my belly has been all about IBS for the past month.  I got tired of waiting for this flare to calm down, since it's been causing me problems every single day for all this time (even through my recent vacation in New Orleans) so I finally broke down and ordered an herbal remedy.  It's called Iberogast.

My niece recommended this product to me after our great GI doctor (she also recommended him to me and he's great) recommended it to her.  I thought I'd give it a shot and see if it changes anything.

When my husband saw how much alcohol is in it (31%), he joked that it would be cheaper for me to use Jägermeister instead.  I scoffed until I started wondering what kind of ingredients are in "Jäger" and did some research. 

There are 56 ingredients in Jägermeister (vs. the nine herbs in Iberogast) and many of them are a secret, but considering both Jäger and Iberogast are from both Germany, and have both been touted as effective digestive aids, I have to wonder if both might be equally effective.

Anyway, Iberogast comes in a small, glass bottle with a top that releases the fluid in drops, so you can count them for appropriate dosing.  Adult dosage is 20 drops into a drink with each meal, as needed.  I took this with five total meals during just a couple days, with no change in my symptoms, before I stopped using it.  I had intended on giving it at least a full week's trial before determining anything about its efficacy, but before the second day was through, I got an idea about what might really be causing my symptoms, so I switched gears to find out.

My hunch was that perhaps my body was trying to rid itself of excess vitamins and minerals.  Too many nutrients?!  It seemed crazy, but the more I learned about fat-soluble vitamins and digging into my Calorie Count food log history and nutrition analysis, the more plausible this seemed to me. 

I'd been taking a lot of supplements every day for a while now, some per my previous doctor's recommendation, some per my own conclusions about what I need:

• multi-vitamin (includes iron)
• vitamin C
• vitamin D3
• super B-complex
• magnesium malate (twice a day)
• calcium
• fish oil
• probiotic

Several weeks back, I started eating more nutritious lunches during the work week and eventually decided to get my lunch from the nearby Whole Foods Market every workday that I could.   I loved getting delicious, nutritious food every day and not having to worry about dinner or weekends as much.  It worked out great, I thought.

I checked the analysis tool in my Calorie Count food logs (good thing I had this handy) and saw that many of the nutrients tracked were well over 100% for the day for me, on average.  Vitamin C was ridiculously high (>1200% average per day).  Vitamin A was very high (>300%).  Calcium was high (~150%).  I was even getting more iron than I needed (~200%).  Who gets that much nutrition in a day?!  Well, me, I guess.  I don't even know how much vitamin D, vitamin B, or magnesium I was getting.  Those nutrients aren't even tracked in CC, but since I was adding these supplements to my nutrient-rich diet, I wouldn't be surprised if they were crazy high, too. 

So, reading up on vitamins and nutrients. I learned that some vitamins, like vitamin C and vitamin B are water-soluble, so getting more than enough is no big deal - the kidneys flush them out and you flush them down when you go pee.  (What a way to waste vitamin C!)  But other vitamins, like vitamin A and vitamin D, are not water-soluble, and the body can get too much of them.  I also know that magnesium is an ingredient in epsom salt and other laxatives.  So I wondered if all these supplements, or even just one of them, could be causing my body these daily diarrhea episodes.  To find out, I was going to skip just the magnesium, but I decided to stop taking ALL of my supplements, just to see if anything changes.

I stopped taking them last Thursday and haven't taken any since.  By Sunday, I noticed a change: no poopie all day!  I was hopeful that this meant the end of the diarrhea, or at least a break from it.  I still experienced a crampy few minutes this morning, after breakfast, but later today, I actually had a regular movement.  I was so glad I wanted to tell people at work about it and celebrate... but of course I didn't.

Nothing's for sure, of course, but these are positive signs that I'm on the right track with this vitamin thing.  For now, I'm glad I was able to put this together and elicit a positive change myself.  I will wait and see if I continue to get relief by avoiding vitamins I apparently don't need, thanks to my healthier diet.  I guess the takeaway here is that you actually can get the nutrients you need from food and you can get too much of some nutrients.  Pay attention to what you're eating and if you have a mysterious IBS flare while eating healthy foods, consider quitting the supplements to see if it helps.  If not, there's always plan B, whatever it may be for you.

Doctors Make Hall of Shame List

Wow, I just read this article, featuring a hall of shame for a bunch of fibromyalgia doctors with a definite conflict of interest between taking care of their patients and helping pharmaceutical companies make more money.  Not too surprisingly, one of my former doctors made the list.  (I am in Illinois, so I'll let you guess who it is.)

Although, to be fair, despite my husband referring to him as a quack, I must say that the drug he put me on was not one of the big three - he was the one who put me on Pristiq.  This was several years ago, before his suburban Chicago office that I was visiting was suddenly shut down.  At the time Savella wasn't even approved yet.

Also, his big thing at the time was the theory that FMS was really just a yeast overgrowth condition gone systemic.  He convinced me to go yeast-free for 3 months.  He actually prescribes this avoidance diet for 6 months, but we had to stop at 3 because I'd lost so much weight on it.  However, I felt worse on it and we concluded that it was not my problem.  He claimed I was the first patient who didn't improve on this diet.  Sorry.  Really, I did my best to make sure I didn't cheat so I would know if I had any control over my symptoms.

I also didn't like how how simplified FMS to just two basic symptoms: pain and fatigue.  I got a hold of a video of his about the whole yeast overgrowth theory for Fibromyalgia patients and kept repeating that "pain and fatigue is Fibromyalgia."  As a patient, it got irritating pretty quickly.  What an oversimplification!

As the article mentions, some of these doctors used to be about the patients, but since then have gotten mixed up with suspiciously pro-drug company studies and such.  Even my last doctor seemed okay until he pushed me to switch from Pristiq to Savella.  Ever since then, I felt I was on my own.  He didn't call me back while having horrendous withdrawals during the initial switch, and he didn't call back when Savella was causing my blood pressure to skyrocket and my head to ache all the time.  They must have gotten to him, too.  I left him after weaning off Savella by myself.  BY MYSELF!  I had a doctor who had nothing to do with me while I was in crisis.  No thanks and good-bye.

My current doctor is very nice and she reduced my prescriptions by substituting two kinds for one, old one, which is available in generic form, which translates to cheaper for me.  She listens to me and my needs.  She respects my desire to be on fewer meds, due to side effects causing more problems than my Fibro, it seems.  She's good.  I worry though.  Does everyone have a price?  Am I going to go in there one day and see a different side of her?  I sure hope not, but I'm on the lookout for those subtle cues.

At any rate, since then, I've learned lots from Fibromyalgia Network, including the fact that all their funding comes from membership fees - none is from any advertisers.  They publish lots of interesting articles and study findings in their quarterly journals and, although some of them credit doctors from this unfortunate list, most of them seem to make good sense.  There is lots of advice about how to cope and do stretches and exercises that are beneficial for us.  A lot of the scientific stuff is broken down with graphics that help us understand how chemicals can get out of balance or how drugs affect our bodies.

Be your own advocate, fellow fibromites.  Look out for those who seem to be helpful, then push products on you.  There's no shortage of sleazebags out there willing to prey on desperate people in pain.  If someone is selling you something, be skeptical.  Do your homework and learn as much as you can from many, objective sources.

Yogurt for Breakfast, Yoga for Lunch

Despite my continuing, daily IBS moments, I had a great time visiting the French Quarter of New Orleans last week!  This was my third trip to the Quarter, my last one in May of 2005, before Hurricane Katrina hit.  Luckily, things are pretty much the same again, though we noticed some of the smaller one-off businesses were replaced by those owned by one or more other businesses.  Anyway, the food was delicious and there was plenty to drink as well.  We are older now, so we had to cut back to just two meals per day.  (I don't know how we used to do it eating all day long!)  There was a lot of walking to do as well, and though Don worried I wouldn't be up to it, I made an extra effort to prove him wrong.  I needed breaks, of course, but I still had a fun time!  We took the train this time, too - a new experience for both of us.  It was more fun than driving and less annoying than going through security at the airport.  (We're boycotting the airlines until they stop being ridiculous to the passengers about all this TSA bullshit.)  It was a long ride and both ways we traveled through the night.  Sleeping on a train - let me rephrase that - TRYING to sleep on a train is not as much fun, but we survived and enjoyed the new experience. 

Now the party's over and it's back to work and back on track with the healthy diet.  I feel fatter then when I left, but hey, I was on vacation.  Lack of stress is worth a weight-loss setback in my book.

I'm back in Calorie Count's Calorie Camp and logging my foods and studying my nutritional intake.  Today, I started my day with a fun yogurt mix.  At my house, we like to minimize waste and buy the large yogurt containers and get either plain or vanilla flavor.  When it comes time to have some, we dress up dinners with plain wherever sour cream might be called for, or mix in some fruit or preserves for a sweet snack.  I cut up a peach into a bowl, added some French Vanilla Stonyfield Farm yogurt, and sprinkled in some generic Grape Nuts for a fun breakfast.  I'm still dealing with this darn IBS flare-up (no break during vacation either, unfortunately) so I'm hoping the probiotics and occasional yogurt will help calm things down eventually.  There seems to be no rhyme or reason to what causes my symptoms to flare-up or calm down.  I'm speculating something slower or cumulative, multiple triggers are doing something, but it's so hard to pin it all down.

In addition to healthy diet efforts, I started my very first yoga session today, at lunchtime.  (Note: my fibromyalgia doctor has recommended that I try some yoga and start slowly.)  My employer has coordinated with a yoga instructor to come visit our building every Wednesday (starting last week, so I missed that first session) and welcome us to an hour-long session during our lunch hour.  I had done yoga at home years before I developed Fibromyalgia, Chronic Myofascial Pain, or IBS, or any of my other current health issues, but this was my first yoga class.  It was good.  I felt the work in muscles that aren't used to doing that much work.  I shook and did some sweating.  (Unfortunately, there are no shower facilities so I did my best with a change of clothes, a wet wipee "wash" and some deodorant.)  I kept up with most of the poses and even opted for some of the extra challenge poses, but I did have to fall back on others here and there.  I had the most trouble with my wrists after all the push-ups and hand support, but hopefully, I'll build up some strength over time.  Overall, I'm happy with the convenience of the class and being able to enjoy it with my coworkers as well.  The cost is $10 per session, which seems reasonable to me for the convenient scheduling.  Our instructor was also nice and helpful in correcting posture when necessary.  I'm looking forward to the next one.

I didn't have my traditional Whole Foods buffet salad today because of yoga today, but I planned ahead yesterday while there, and bought some self-mixed trail mix and a few nut/fruit bars I'd been meaning to try.  I also brought a banana to work today.  They all helped to keep me full and give me good nutrition with some fun flavors, while allowing me to graze while working. 

I did, however, make the mistake of eating before the yoga session, though, which I did because I was hungry and wasn't thinking, but... NOTE TO SELF: when you have IBS that seems to act up whenever eating anything, be mindful of the timing of any activities that may keep you from a toilet.  I managed to finish things up in time, but it was kind of close, and I felt a little off on the way to class.  Next time I'll work out hungry and eat later.  See?  Learning.  It's all good.  I like progress, even slow progress.  Anything's better than that downward spiral that can suck you down.  I'm working hard to avoid that.

Great Overview Video of FMS

Today I came across a great video.  It's a doctor giving a presentation about Fibromyalgia.  He describes what it is, what it isn't, how it's diagnosed, how it's treated, what patients experience, how Fibromyalgia pain has been studied and measured to be different than in other people.  There are detailed descriptions of many topics and lots of tips on treatment (especially non-drug treatments) and I even learned a few things.  At the very least, my foggy brain was reminded of things I'd forgotten I knew.

As I watched, I found this video to be a useful educational tool for both Fibromyalgia patients and their loved ones alike.  Direct people who are confused about FMS to this video, especially to certain areas relevant to the questions that perhaps you cannot find the right words to explain.  It's an hour and a half long, so if they really want to know, they'll watch.  That said, you may need to take breaks and watch it in manageable chunks.  I also suggest keeping a pad and pen nearby, for any notes you may want to jot down for yourself. There is also a question-and-answer segment at the end as well with questions from the audience. 

I've been diagnosed for over four years now, and have been experiencing chronic pain for over five years.  Having read and learned so much since then about Fibromyalgia, I must say that watching this overview was a great review that kind of puts all the pieces together nicely. 

I realize, though, that not all aspects of the condition are mentioned in this presentation.  For instance, pacing and stress are briefly mentioned, but not given as much time as they might deserve, if relating the portion of time in the video vs. importance in a fibromite's world.  He also doesn't go into great detail about every last symptom that might be grouped into the syndrome, though he picks several of the big ones.  This is a pretty detailed overview of the condition with what we know about it now.   Hopefully we will learn more in the coming years about the cause and better ways to treat or (dare to dream) cure it.

I hope you enjoy this video and learn something from it.  Share as needed.  I also hope that friends and family members of Fibromyalgia patients, and perhaps others in the medical community or general population, will watch at least some portion of this video and try to understand this confounding syndrome which, even Dr. Gross admits, doesn't really belong in any particular medical category because it affects everything.

Fibromyalgia: It's Real It's Manageable What You Can Do

More Smiles and Some Food

Despite the stress of a bathroom remodel that is taking for freakin' EVER, I am still doing remarkably well, considering how awful I was just a few months back.  I am very grateful for the break from a lot of the pain I'd gotten used to just being there and changing every so often, just to keep reminding me that it's there.  If it wasn't for the fatigue part and some minor IBS issues that come and go, my persisting Delayed Pressure Hives on my damned feet, and the pains that just come on suddenly here and there, I'd almost consider this as some sort of "remission" from Fibro.  I'm not completely pain-free, but knowing how bad it can be, this is pretty easy to handle... and I'll take it.

I've been celebrating my feeling better with baking projects and more smiling.  I whipped up another pumpkin pie a few weeks back, from the last of our local farm's sweet little pie pumpkins.  

Benia's Pumpkin Pie

(We froze the pumpkin puree after cooking it in the oven.)  It's my fourth pie ever and I think I finally have it down, give or take some variability due to the moisture factor of the puree.  (I judge it by eye.)  If it's too watery, the pie just has a more pudding consistency to it in the middle.  It's still delicious and a fine way to end your day or start it.  Who knew vitamin A could be so tasty!  If you'd like the recipe I use, here it is.  I modified it slightly.  I don't bother removing the last egg's yolk, and I substituted the spices for 1.5 tsp. of a cheap, pre-packaged, pumpkin pie spice mix I picked up last fall that works great.  I just skipped the cloves.  (Bleh!)

After the pie was gone, I decided to make Oatmeal Craisin Cookies.  I have a big box of generic Quick Oats that I usually keep at my work desk for a quick lunch, in case I'm crunched for time and hungry.  I brought it home and made a batch of the cookies using the recipe on the box and substituting the raisins for dried cranberries (craisins) which we always keep for snacks or adding to breakfast.  They went fast and were tasty. 

Oatmeal Craisin Cookies... YUM!

This is the second time I've made the cookies and I notice that it's a bit messy to mix up all the thick ingredients.  On top of that, my largest mixing bowl is not a mixing bowl at all.  It's a cheap, plastic chip bowl from the dollar store and it's flimsy.  I used it for this batch, but I decided I needed to get myself a nice, durable, glass mixing bowl that is large enough for the job.  I noticed the chip bowl's capacity was still on the sticker on the bottom: 3.5 quarts, so I set out to find something either that size or larger, but made of durable, clear glass. 

I decided on glass because I don't like the possibility of plastic bits getting scraped into the food by the mixer blades, plus I wanted something nice that would last and could be microwaved if need be, and is dishwasher safe.  I prefer clear glass because it makes mixing easier when you can see where things are sticking to the sides and need scraping. 

I came upon a great little store designed for parents who want to avoid exposing their kids to toxins.  (Shouldn't that be everyone?)  It's called Mighty Nest.  They sell a lot of baby stuff and kid toys, but also kitchen and cooking items.  And this online store is where I'd finally found the perfect mixing bowl and another one just a bit smaller that matches it, too.  They are great!  They are just what I needed and are shaped to perfectly fit into my cupboards, too.  They are located in Evanston, IL, just a few towns away, too, so I didn't wait long for them to arrive.  Bonus!  I wonder what I'll whip up next.

Finally now that we've gone through all the sweet stuff, here's a little healthy stuff.  Remember Calorie Camp?  I'm still logging foods and tracking my calories and weight there.  The more I log, the more information I have to learn how to improve my nutrition and be healthier.  As I started looking at my analysis and seeing a pattern - too little fiber and protein, too much sugar.  So I got proactive about it.  On workdays, for lunch, I have been having big, healthy salads from the nearby Whole Foods Market.  Why not?  Making salad at home is nice, but takes a lot of effort (I still have trouble with the prep sometimes) and the food doesn't long.  The way Don and I shop, we'll have produce for a couple days, then nothing for two weeks or so until we go grocery shopping again.  It just wasn't working out. 

My big salad from Whole Foods Market.  I added a baby octopus to this one for fun and protein.  Isn't it cute?

So one day, I went to the salad bar at Whole Foods for lunch and picked out some great salad greens with spinach, bell peppers, carrots, mushrooms, tomatoes, broccoli, red quinoa, chickpeas, hard boiled egg, and a little Parmesan cheese, topped it off with balsamic vinaigrette, and enjoyed a POUND of food for under 500 calories.  If I want to go out and eat less healthy stuff for dinner,  at least I know I got my veggies and nutrients in for the day.  Now I go every day and am getting a more balanced diet more frequently.  It works out great and is worth the $7.99 per pound I'm paying to not have to go grocery shopping, chop stuff up, and pack it up for work every day.  I know the food is fresh, there's plenty of variety available, and I can decide how much of what I need at the moment, when I am feeling it.  Win-win-win! 

Oh and I bring my own reusable bag and keep a real (non-disposable) fork at work so I don't have to make so much trash.  The box is not reusable, but I like to bring the salad back to my desk and eat it most days, so I grab a paper box from the stack and use that.  At least it's compostable.  I also keep an old cloth napkin in my desk so I don't use so much paper.  I just swap it out and wash it now and then.  (It's not that hard to be green.  Every bit helps.)

So I'm doing okay, enjoying life and food and trying to stay positive about my world.  I'm hoping you are smiling.

Losing Weight with Calorie Count and Calorie Camp

Fed up with my tight pants and unflattering photos like this one,

Me and my gut on last July's Beercation

I decided to get back on my Calorie Count account a few weeks ago to keep track of what I'm eating.  I thought having a food log would also come in handy in doing detective work for my recent IBS symptoms, especially since I've been learning about FODMAPs in foods and which ones may be affecting me.

I discovered there is a Calorie Count mobile application available, which is handy for logging foods on the go.  After logging a suggestion via the mobile app to request a sharing feature on the app, I received a developer reply from the site about a beta version of the non-mobile site, called "Calorie Camp" and was given a link to get on and start using it and testing.  It's a way to share a day's report of foods and activities with others on the site (your buddies).  We support each other with comments and earn badges for doing things right.  I like it a lot!  Until now, I've basically been going it alone, with the exception of letting Don know about my goals.  Having a peanut gallery of people cheering me on online seems to make a difference for me.

I've been on and off Calorie Count for years since discovering it and creating my account, but it's always been a bit of a chore to count calories.  I would lose a little, then wing it, then go "oh yeah, Calorie Count" and get back on again.  With Calorie Camp, I actually find that I want to log, share, and comment with my buddies online.  I want to earn those dumb little badges.  I also like seeing my nutritional analysis (it's very detailed) and striving to choose healthier foods based on the nutrients I seem to lack.  Most of all, I really like the fact that being aware of what I put into my mouth has caused me to maintain a proper level of calories (on average) to actually lose a couple pounds since I've started up again recently.  I want to weigh myself!

This is my favorite thing to look at on the entire site - my own, personal Weight Log graph:

Keep in mind that this graph represent a whole year's worth of time, so the net loss over a year is not too impressive to most people (less than 10 lbs thus far), but I just love the slope anyway.  It's encouraging and empowering.  I made this happen!

That top weight pushing 160 on the left scared me into resetting my Calorie Count goals again last year.  I set things up and left my goals intact for many months while kind of being cognizant of my need to shed some weight but not really logging regularly.  Then, last July, I went on Beercation in Wisconsin with my husband and apparently overindulged quite a bit over that week or so.  (See that double spike over Jul 2011?)  I had a great time, but I came back looking kind of like a potato sack.  (See first photo above.)

The plateau at the bottom right of that little mountain is about where I started up on Calorie Camp beta.  Except for the final upturn from today's weigh-in (I went to a party last weekend and nibbled a bit too much), I've been losing weight, nice and slow, the way I'm supposed to.  The green, dashed line is the trend line, which ignores the minor blips in the blue line of my actual weigh-in actual data.  I'm hoping I can continue with the downward slope.  I have a long way to go yet, but at least it's downhill now and the slope is getting steeper.

If you're already on Calorie Count or want to sign up for your own account, feel free to be my buddy.  If you're interested in beta testing Calorie Camp, especially if you like giving technical feedback, Igor is the guy you want to contact.  Here is the forum about Calorie Camp.

One last thing.  My IBS flare up has finally calmed down in the past few days.  I'm hoping the FODMAP research and diligence has been a factor.  It's a theory that finally makes sense to me and seems to be making a positive impact on how I feel.

Bellyaching and Stuff

On November 12th, I had an EGD performed.  Gastritis was detected, but no ulcers or other abnormalities, and a biopsy test revealed no H. Pylori is present.  In the absence of any other clues, including no gallstones and no gallbladder inflammation or infection, the GI performing the EGD warned me to ease off the NSAIDs (like Aleve, which I use only for more severe headaches/migraines and very rarely as an alternative pain reliever for hip pain or joint pains that may have inflammation) and consider gallbladder removal if my pain episodes continue.  He didn't seem very tolerant of my many questions, despite the fact that my case is not clear-cut for gallbladder removal.  So I sought out another GI for a second opinion.

Last Monday I brought all my test results and questions to the new GI and he was much more helpful to me.  He listened to all of my symptoms and concerns and agreed with my opinion that gallbladder surgery seemed not to be the clear answer to my problems.  Not only that, he actually commended me for being "proactive" about my own health and bringing all my documentation with me.  This is how doctors should be!  (Special thanks to my niece for recommending him to me.)

Anyway, his best guess for a diagnosis right now is functional dyspepsia, which he explained can be quite common for people who also have IBS or/and Fibromyalgia.  It is not the same as IBS, which I have dealt with before, but much like IBS, it is a condition that turns out can be difficult to live with, but is not likely to cause permanent damage.  He is having me try some acid reducing medication (Dexilant), since my pain seems to be more on the stomach side rather than one the gallbladder side of my upper abdomen.  

I was also given a pamphlet called "Gas and Flatulence Prevention Diet" which discusses foods that can cause gas in some people, and the science of bloating, which can get ridiculously severe during my pain episodes.  There is a breakdown of various foods by groups that can be problematic, but each person is different so finding out if any of them make my problems worse is going to take some trial and error.  The doctor suggested I try to eliminate one food or food group at a time and see if there is any change either with elimination or returning it to my diet.  He made sure I understood that he was NOT suggesting avoiding all the problem foods at once, or else I'd have pretty much nothing left to eat.  Looking at the list, I see why.  It seems the only food group that isn't listed as a potential troublemaker is lean meat.  I'm documenting my diet and symptoms, so I can look for new patterns I may have missed.

Lastly, he suggested that I try to eat smaller, more frequent meals, avoiding large meals.  The reasoning behind this suggestion is that some people, especially sensitive folks like us fibromites, don't tolerate the sensation of the stretching of the stomach well, and it can feel painful.  To minimize on the stretching, I could try grazing little by little throughout the day.   It's hard to have half a meal here and there, especially if you want something hot, but I understand the logic and am glad he gave me so many options and ideas with explanations.

He left me with one last bit of advice before my next appointment: find a way to cope with stress and my annoying symptoms so I don't slip into a constant state of worrying about the next flare up.  I believe he was talking specifically about the abdominal pain, but I know this is also important to keep in mind for the rest of my Fibromyalgia symptoms and life in general.  I do what I can with journaling, blogging, and reaching out to others in need, knowing I won't always have it all under control.  There are days when the symptoms just pile on and I get downright cranky or fed up, especially when I have to miss work and get behind on my duties at the office, but the reality is that I'm stuck with much of this bad luck and need to buck up and do what I can to find my own happiness wherever possible.  I'll definitely keep working at this.

Did You Miss Me?

I know I've been slacking on the blog posting lately.  Sorry about that.  Things have been a little weirder than usual for me, but I'll attempt to catch everyone up here, while it's on my mind.

Back on August 9th, I started getting these mild abdominal pains here and there.  I didn't think anything of them then, and especially not a couple days later, when I also developed a sore throat, which I assume came from a bug my husband Don passed on to me.  He'd been sick the week before with a bug, so I figured some virus was invading my system and wreaking havoc on my guts a bit.  By Friday, the 13th (ooh!) my sore throat was better and I returned to work, despite the ongoing abdominal pain.

Having been diagnosed with Irritable Bowel Syndrome (IBS) a few years back in late 2007 or so, I'd been doing very well since I started taking a probiotic daily with my vitamins.  I figured I'd been "spoiled" by the virtual elimination of IBS symptoms and didn't think much of a little irritation here and there, especially with the recent mysterious bug.  However, as days passed, I started noticing the abdominal pain was waxing and waning at times, and when it was worse, I seemed also to bloat up, feeling pain from the increased pressure in my belly.  I tried to notice if it had anything to do with eating or eating certain things.  Sometimes I would wake up with the pain, though, so I couldn't make a connection.  Don suggested I have simpler foods for lunch, so I had fresh fruits for lunch for a few days and felt a bit better.

The following Friday, August 20th, I had eaten a pretty large amount of nuts (almonds, cashews, and pecans) for a mid-morning snack.  I probably had more than I should, considering my weight and binging concerns, but I enjoyed them well enough.  A few hours later, the abdominal pains and bloating really got strong.  Around 2pm or so I had just bought myself a late lunch consisting of a grilled cheese sandwich and small chicken noodle soup from our building cafeteria, since I was out of fruit.  It wasn't fruit, but I figured it was simple enough for my guts.  I took a few bites/spoonfuls and couldn't eat any more.  I felt absolutely awful, so I left work to go to the ER and try to find out if something was seriously wrong with me.

Tip: If you can help it, try not to go to the Emergency Room on a Friday afternoon or evening.  When I first got there around 3pm or so, it wasn't too bad, but as the hours wore on, the waiting room filled up with all kinds of people.  Since I wasn't bleeding or unconscious, I wasn't as high a priority, so I had to wait several hours for a room/doctor.  In the meantime, it was very cold and I had someone bring me two blankets to drape myself in while waiting.  They took some blood and urine and did a few tests to check for gallbladder issues.  My tests were okay, I was told.

When I finally got to a room, I was in a queue to get an ultrasound on my abdomen, to see what's going on.  My gallbladder was found to be "distended" and possibly contain some sludge.  The doctors (there was a shift change before I was released) latched onto the gallbladder thing and advised me to avoid fatty, fried foods.  By this time Don had joined me and I looked at him in confusion.  Don vouched for me as we both told the doctor that we already eat pretty healthy now, especially since my yeast-free diet a couple of years back.  We prefer fresh produce, and indulge in "bad" foods only occasionally, here and there.  I really could not believe this was the cause of my problems, but that's the information with which they released me.  I was also given a Bentyl injection for my abdominal pains.  Oddly, the injection was pretty painful, even though I thought I was an old pro at getting shots, as I'd gotten years of them for my allergies.  I was also given a prescription of Bentyl tablets to take as needed at home, and was told to see my primary care physician for a more accurate diagnosis.

I saw my internist the next Monday afternoon on August 23rd.  He ordered more blood testing for thyroid problems and celiac disease (at my mention).  Those came back okay.  He told me to see a gastroenterologist to see if more testing is indicated, possibly a CT scan, scope, or camera pill.

I saw a gastroenterologist Friday afternoon on August 27th.  By this time, I'd tried the nuts again and noticed another episode of worsening symptoms, so I mentioned a possible nut allergy to the doctor, as well as all my other worries which were basically wallpapering the office with pamphlets of all the various conditions I'd read about online - diverticulitis, pancreatitis, gallstones, kidney stones, liver problems, diabetes, etc.  

He was nice enough, but didn't seem concerned about all the things on my mind.  He noticed I listed probiotics on my drug list and asked me how long I've been taking them.  A couple years, at least, I'm sure, I told him.  I added that they've helped me with the IBS when I was first having trouble, and that this bout didn't seem to be like the IBS I'd had before.  (I'm not experiencing any urgencies this time.)  Without ordering any additional tests, he instructed me to stop taking the probiotics for 2-3 weeks and see if my symptoms improve.  If not, see him again and perhaps he will try an antibiotic.  In short, he suspects a possible bacterial overgrowth in my gut.

Although the doctor never used the term, I recall having read about SIBO (Small intestinal bacterial overgrowth) being a problem for fibromites like myself.  Sure enough, the symptoms seem to overlap with my own, though I'm not having all of the symptoms listed. (Those symptoms associated with the "output" of the digestive system seem to be absent.)

So, I've stopped taking my probiotic since the morning of August 28th and I'll see if things improve.  So far, so good, but I have not tested myself against those nuts after the last two times.  Don doesn't want me to suffer, but I'm very curious to see if might are the cause of my problems.  I've also stopped having almond milk (I like Silk Almond Milk with my cereal in the mornings).  None of my doctors seemed concerned about the nuts, even though I mentioned them to each one.

I have an appointment to see my gastroenterologist again on Friday, September 17th that I will cancel if I feel better nearer that date.  I will keep you all informed about what happens.

The "I Don't Like This" List

So far in my exploratory journey of self-awareness, here are some things I've noticed about my behaviors that I don't like.

• I pour a full bowl of cereal in the mornings, and sometimes I even refill and have a second bowl.  I love cereal and always have.  I guess it's one of my comfort foods.  But I always wish I could just eat a normal sized portion and leave it at that, like Don does.  As I pour the cereal, I wish I could stop myself at half a bowl, but I haven't been able to do that much lately.
• I tend to do my binging at or after breakfast time on weekdays, or just before leaving work in the early evenings.  These are times when I'm alone and tend to cave to temptations.  In the mornings, I used to dig into the peanut butter jar (when we had some in the house), just before leaving for work.  In the evenings, I am usually good, but if I know there are snacks available, I taste, then ravage them.  It's almost as if the taste of the forbidden sets me off into some no-holds-barred eating event.  I need to be aware of this as it's happening.
• My weaknesses are for: peanut butter, crispy salty foods like chips and crackers, sweets like donuts and cupcakes and chocolate treats, and I know I've always loved the blander cereals and breads.
• I enjoy healthy foods but I tend to grab the quick stuff rather than prepare something healthy, even if we have the ingredients.  Perhaps having healthier options ready to grab will help me here.
• I have caved into cravings, thinking I could handle an indulgence here or there, but it seems like one thing always leads to another and the indulgences get out of control.  I end up regretting them.
• My fear of Fibromyalgia flares, along with some sort of procrastinational tendencies, seems to be standing in the way of my exercising more regularly.  I love taking walks with Don and have been in the habit of taking the stairs to the plaza at work, but I wish I could implement a regular exercise routine into my day again. 
• I seem to have taken the easy way out on some of the above by using Fibromyalgia as a crutch or an excuse to do so.  If this keeps up, eventually I will not challenge myself to do anything anymore because I'm chronically ill.  I don't want to stagnate, regardless of the reasons.  I need to associate long-term healing with activities that may bring about temporary flares.

Now, here is a list of the things I would like to see as changed behaviors:

• I'd like to be more prone to select healthier, lower calorie foods for snacking, even though it may not be what I'm craving or as easy to grab as something less healthy.  I like salads and healthy meals when they are served to me, but I have a hard time doing the work required to get these things prepared for myself unless I am motivated.  I want to be motivated more often.  I want to motivate myself more effectively.
• I'd like to be able to handle an occasional indulgence without going completely overboard about it.  I want to be able to take a reasonable serving and put the rest away and forget about it, rather than obsessing and negotiating about it.
• I'd like to be able to use my time more productively so I can feel better about myself, rather than beating myself up about wasting time doing frivolous things or nothing at all.
• I'd like to journal more and be honest about myself in the journal.  It's my own private place - why does committing my feelings to words on paper seem so damning?  I seem to be much better at being honest in my blogs, which is even weirder, since this is public.  Perhaps I'm not comfortable with keeping things private.  I should be okay with having feelings that I keep private.
• I want to be brave enough to stop and talk to someone when I know I'm about to have a binge.

These are just a few of the things I've noticed after my last blog's epiphany.  I will, of course, continue to observe and reflect on what I'm doing.

The Funk

I realized today, as I sat at home, sick with some virus, that I've got some issues to work out.  In a nutshell, I'm doing some binge eating, I've completely fallen off all of my "wagons," and I feel like I might be slipping into some sort of depression (again).  

I'm restless, unable to rest, yet unable to do anything productive.  There are things that are not that difficult that I should do, yet I don't feel able to concentrate enough on them to get them done properly.  Even this blog post had to wait until I forced myself to take action.  I've been kind of watching crap tv all day, not really able to understand what it's all for.  The reality shows are interesting, but I found myself wondering how those people manage to go to work and focus on getting their stuff done.  These hosts have jobs and they are helping people.  It sounds like a great gig.  Then I imagine what it would be like if I were to step into their shoes.  It was unnecessarily overwhelming.  Even a thought-exercise like that was too much for me today.  What is happening to me?  That doesn't seem right.

This time, however, I feel like I may be a tiny bit ahead of the game than the last time, simply because I'm not afraid to be aware of these feelings I'm having.  I'm behaving in ways I don't like and feeling somewhat powerless over the behaviors.  The behaviors come and go, so I have this false sense of control, peppered with extreme regrets and disappointment, disguised as mere setbacks, to help me move on.  

Truly, there is something messed up happening in my brain and I need to take more assertive action before it gets any worse.  I don't know how I'm going to proceed just yet, but at least I'm thinking about it and admitting that it's happening now.  People go through these kinds of things all the time, right?  I've seen movies.  People see shrinks.  Sometimes they find solutions, sometimes, they don't.  I was hoping that I could engage in self-therapy, what with all my researching knack and being cognizant about all this mess.  Then I realized that the journaling and the blogging has become less frequent.  I don't know how honest I've been with myself about some of these things in my own private journal, but I still feel like it hasn't been completely.  

I'm in a funk and I'm aware of it.  Perhaps calling it a "funk" is another way for me to soften the news to myself.  I don't know.  I'm still sorting through things and hoping to figure out a more effective plan for removing myself from it.

Does any of this make sense to you?  Does this kind of reflection belong in a private forum, rather than out here, for all the world to see?  Does it make you uncomfortable to know that this is what I'm going through?  My intent, of course, is not to make any of my readers uncomfortable, but rather twofold: to help me stick to pursuit of a plan to make positive changes, and to help my readers (I know someone out there must know where I'm coming from).

I've decided I am going to fight the funk and seek solutions.  I now know what hasn't been working for me with regard to the diet and exercise plans that I so carefully laid out in older posts.  I'm going to mark this as a less-ambitious, yet still very important, observational phase of my self-improvement project.  I need to understand when and why I fall into the kinds of behaviors I don't like.  Well, first, I need to identify all the behaviors that I don't like.  I'm working on this.  I'm hoping I can continue to keep my journey public, for the benefit of you and me.  

Let's learn together and pick each other up as we fall.  I know I'll fall.  I think it's important to realize that.  But I must learn to get back up again.  Feel free to publicly or privately share your thoughts on any of this.  I welcome your feedback.  Well, I guess I might not welcome some crap "suck it up" sentiments, but I am at least ready for that possibility.


Thanks for reading.