I Finally Have Answers! If you Have Fibromyalgia and Are Hypermobile, Please Read!!

2018 has been extremely important in finally figuring out what is behind all of my health woes. I have been feeling markedly worse the past several months, with more injuries, more pain, and more questions as to what the hell is happening in my body. As my condition continued to slide, I became more adamant about figuring this out, once and for all. And this is one of those times when things have to get worse in order to get better, because I finally have answers and something that ties all of my apparently random symptoms into a single diagnosis that explains everything for me: Ehlers-Danlos Syndrome (EDS), Hypermobility Type (hEDS).

EDS also tends to bring Mast Cell Activation Syndrom (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS) along with it, which also seem to be what I have been experiencing, according to the specialists I have seen thus far.  We are still working on confirming the MCAS, as it is tricky to test unless there is an actual reaction occurring at the time of testing.  POTS seems likely per the EDS geneticist and the MCAS specialist, but I need to wait until January of 2019 to be seen by the EDS knowledgeable specialist who can test me officially for that.  A tilt-table test is likely to happen then.

In addition, Osteoarthritis (OA) also tends to occur in EDS patients because of accelerated wear and tear on the joints.  I have already been diagnosed with OA by my rheumatologist, after showing her my Heberden's Nodes which have formed on two of my fingers already.

After reading all about this connective tissue disorder and how it affects people who have them, I realized I have a lot on the very long checklists.  So I sought out a local genetics doctor who is knowledgable  and booked an appointment.  EDS is not well understood by the medical community, as it is complex and there is no real treatment or known cure as of yet.  That means there's really no money in it, so not many doctors invest the time and energy to learn much about it and treat EDS patients.  (Sad, isn't it?)  Despite these challenges, I had to know if this could be the cause of my health problems, so I could at least understand what is going on in my body and try to prevent further injuring it.  I set out to find out who could rule out or diagnose this condition in me, locally.  A local Facebook Group in my area was very helpful in finding resources near me.

In order to be properly diagnosed by an EDS knowledgeable genetics doctor, one must:

1. Discuss family health history, 
2. Have this doctor examine you for certain physical traits and characteristic reactions, 
3. Perform a certain set of specific physical tests in front of the doctor, so he can assess the Beighton Score for hypermobility, and finally, 
4. It may also be recommended to have genetic testing done to rule out or identify certain types of EDS.

Once the several months of waiting for my appointment passed, I finally went to see a local EDS knowledgable genetics doctor and did all of the above.  Everything points to EDS, and the Beighton Score, along with the genetic testing, pointed specifically toward the Hypermobility Type of EDS.  Thankfully, this is not one of the more severe and life-threatening types, but it can still be debilitating.  Unfortunately, debilitating is where I seem to be headed now.  I'm not sure if it's just my age or what I've been going through, but something has caused my body to take things to the next level of awful this past year or so.

Recently, I've been rolling my ankle just walking on flat sidewalk (couple times!), I've had painful shoulder tendinitis that required over weeks of physical therapy to strengthen, I have been having new problems in my hip that make bearing weight excruciating after a period of sitting, and my knees, which have always had a tendency to buckle painfully, are acting up more these days.

I've also been reacting with flushing for no apparent reason and developed new sensitivities to Hydrocodone and Xylitol, in addition to the new food allergy to apples that I've developed in recent years, and the new lip balm reactions I have had as well.

Now that I know what's going on, I needed to understand it.  I have recently been having an awful flare up that's been affecting my neck and shoulder, back, and knees for the past week plus now.  It's been a pretty high level of pain much of the time, and is apparently not being well managed by the Cyclobenzaprine and Low Dose Naltrexone (LDN), which has been helpful in lowering my "new normal" pain levels and giving me more good days between flare ups.  These flare ups, however, are terrible lately.  I have been laid up for several days, including last Saturday, just trying to rest up and heat the affected area.  All it takes is a few days of level 8 pain to make you wonder how you can go on.  I have had to keep talking myself down to get through it.

In my current, painful state, I did some quick research on my newest, and most important diagnosis. I found this page, EDS-H & JHS: Understanding Ehlers-Danlos Syndrome Hypermobility-Type and Joint Hypermobility Syndrome to be very informative and an excellent resource for understanding how all the little diagnoses I have collected throughout my life are all tied to the connective tissue disorder, Ehlers-Danlos.

I'll try to sum up what I know now, but if you or your child or children are hypermobile, you may want to read the above web page as well to see if you relate to other details. 

Okay, here goes...

Collagen is the connective tissue "glue" that holds our bodies together. When this connective tissue is defective and weak, as it is for EDS patients like me, joints can overextend (hypermobility) and less unstable than normal people's joints. When joints hyperextend, dislocations and subluxations (not quite full dislocations) can occur. When joints sublux or dislocate, the surrounding, and already weak tissues (muscle, tendons, muscle fascia, etc.), become overstretched, and can tear and stiffen as they attempt to repair the damage. All of this spells pain, in many ways, at the very least, plus various other problems in the body. For this reason, EDS patients need to protect their loose joints with various braces and limited activities. This explains my several ankle rolls and foot tendonitis, shoulder tendonitis, and carpal tunnel pains. It also explains how that car accident in 2006 triggered a world of hurt in me that never got better, but rather snowballed to where I am now.

When movements and activities lead to these painful and destructive episodes, those movements and activities tend to be avoided - have never been athletic - leading to weakened (doughy) muscles. Weak muscles can further destabilize joints, continuing in a vicious circle of pain and destruction. This explains my chronic pain and flare ups.

Weak connective tissue manifests many ways, such as Fibromyalgia, a syndrome that describes chronic pain, fatigue, sleep disorder, Irritable Bowel Syndrome (IBS), Migraines, Temporomandibular Joint Disorder (TMJD), allergies and various sensitivities, and lots of other odd little things that make my life extra challenging.

EDS is associated with 2 other conditions that are frequently comorbid: Mast Cell Activation Syndrom (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Mast Cell Activation Syndrome (MCAS), has to do with histamine and allergies and sensitivities. Basically, any kind of physical reaction that can occur as a result of any kind trigger is fair game. For me, this explains my hay fever and allergies to tree pollen, weed pollen, grass pollen, dust, dust mites, feathers, animal danders, mold, fragrances, newspapers, apples, lip balms, nickel, scratches, pressure, Hydrocodone, sudden temperature changes, and who knows what else. My reactions include rhinitis (sniffling, sneezing, and nasal congestion), asthma (cat dander, mold, dust mites, fragrances), digestive cramping and dumping (apples, hydrocodone, and unidentified triggers), hives (Dermatographia from scratches, Delayed Pressure Urticaria from pressure), dermatitis (lip balms and nickel), and flushing red and burning skin (sudden temperature changes and unidentified triggers). A lot of "masties" may suffer anaphylaxis when exposed to some of their triggers. I have had a few episodes myself in the doctors office after a slightly too high incremental increase in my desensitization injections, and have had to do the Epi-pen and inhaler thing. It was quite a production!

The other comorbid condition is Postural Orthostatic Tachycardia Syndrome (POTS), a type of Dysautonomia, which has to do with blood pressure changes, heart rate changes, heart arrhythmias, and fainting or near fainting, that is triggered by one's change in posture. This is due to blood pooling at lower areas of the body rather than circulating more reliably throughout the body. It goes back to weak connective tissue causing weak blood vessels and heart tissue, which, in turn, results in poor circulation of blood in the body and brain. This explains my momentary blindness and dizziness when getting up quickly, my unexplained heart rhythm (tachycardia) episodes - the first one triggered by my bending down to pick something up at age 17 lasted hours and I had to go to ER - and an apparent heart rate change when I squat for a couple minutes then stand up straight, as a specialist tested. I also get migraines, which are caused by a decrease in pressure in blood vessels, which makes sense here.

Some types of EDS affect internal organs and can lead to weakened arteries and digestive tract organs, which can rupture. Vascular type is particularly dangerous, but there are 13 types of EDS and several of them carry serious health risks. Hypermobility type is what I have been diagnosed with, though many of the 13 types also present with hypermobile joints. Genetic testing helps rule out or diagnose the types which have identified genes. EDS is inherited and it is usually the same type that runs in families.

The gene for Hypermobility Type has not yet been identified, so testing is done to rule out the other types, which is how I was diagnosed, along with family history and a clinical Beighton Score test for hypermobility.

This turned out to be way longer than I expected it to be, but I hope it helps someone make sense of their symptoms or lead to a correct diagnosis and proper care. Please feel free to share with others. EDS is not as rare as it seems. Doctors and patients need to know more about it so people can get the care they need and patients can arm themselves with knowledge against unnecessary injury and pain.

If you or your kids are hypermobile, please learn more about EDS and pay attention to these seemingly unrelated conditions and symptoms. There is a tie in!

When symptoms don't seem to connect, think connective tissue!

Painful Foot Update: Peroneal Tendonitis

So, last Friday, I went to a new foot doctor about the pain and swelling around my outer right ankle bone.  The whole staff was very nice.  The doctor pressed on various areas of my bare foot and asked if it was painful.  He found the worst spot (toward the back heel side of the bony area) and suspected an inflamed tendon.

I had my foot x-rayed to rule out any bone or other problems - all clear there.  With my past history of having this same problem a few months back, and since it went away with just some icing and rest, he says we can assume this is peroneal tendonitis.  If it gets better in a few days with the ice, Aleve, rest, etc. that would support the diagnosis.  However, if it gets worse or does not subside, we can do more detailed testing like MRI to see if anything has torn.

An ankle brace was recommended to help support the foot and reduce further inflammation while walking around, so I went and got one after my appointment.

I was also told my arches were slightly flat, and that my foot posture turning downward on the inner sides of my feet was possibly contributing to my tendonitis.  The doctor recommended getting some good shoe inserts with sturdy arch support. So I got a pair of these as well.  Since I had some cheap inserts in my boots already, he looked at them and added some felt to the bottom of the arch area, to beef up the support a bit.  I thought that was nice.

I also got a great printout of strengthening exercises to do to help prevent further injury to my feet, and have been giving those a try each day.  I'm backing off the daily stairs climbing at work until I feel better, and the yoga and other activities are mostly on hiatus, too, to I can rest the bad foot.  I did do some yoga poses today, though.  I just made sure I didn't use my feet for support and took extra care to look for any signs of pain in that bad ankle.

So, here I am, several days later with my foot feeling a lot better, but not quite back to normal yet.  I am still wearing the ankle brace but I have put the cane away and have just been stepping slowly and carefully at work and at home.

I'm a bit cranky otherwise, though, because other symptoms have been acting up.  I fear that the Aleve I was told to take (always with meals, mind you) for the inflammation was irritating my stomach, so I stopped taking it.  I had some gastritis a while back and don't know if that is still with me, or if it's just more IBS or something else.  I have been dealing with some sharp, stabbing pains in my ribs and back the past couple of days, and my eyes feel like I've been awake too long, though I did manage to sleep.  Then yesterday, out of nowhere, tinnitus in my left ear just started raging with this loud, muffling ringing for hours.  On top of all of these symptoms, like the cherry on top, is all the mental garbage that tags along: my difficulty with focus and memory, plus the stress of dealing with all this crap while trying to live and manage and keep my job.  I declare a flare.  And I am just trying to remember that there is hope at the other end of this particular nightmare.  I just don't know when exactly that will be.

Snowy Weather

This winter has been extreme in several ways, and in much of the U.S.  Between the frigid temperatures caused by the "polar vortex" and the frequent snowfalls, it's been challenging for us fibromites just trying to survive the season.

I'm having a variety of symptom flare ups despite my cozy fleece leggings (I got several from Walgreens for five bucks each - so worth it!) and my husband forbidding me from shoveling the snow.  Muscle spasms have been frequent.  IBS was raging fiercely for a couple weeks but has finally subsided (thank goodness).  And the odd foot problem I had last Fall is back today.  Somehow, it snuck back while I was lying in bed or sitting down today.  I just don't see how I could have triggered if I wasn't doing anything.  I never managed to see a doctor about this last time, so I might be doing that if this becomes a daily pain again.

Anyway, I recorded a short, relaxing, snowfall video a couple weeks ago and thought I'd share with you all, so you can relax and enjoy.  

I'm hoping we are in the home stretch of winter, finally, so hopefully looking at this will not stress any of you out.  

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.

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! 

Letter to My Future Self

Wow, summer is just flying by! Where does the time go? I can't believe July is almost over.

I have been doing relatively well with fibro, being active, and eating healthier. I still have issues, like trouble sleeping and pain symptoms, but overall, I feel much better lately and have been using my (unpaid) intermittent FMLA time less.

One idea I had been thinking about doing for a blog post is writing to my future self. Many of us write in out journals and blogs about how things are going at the present moment, but even if we don't do it regularly, we may, someday, look back and read an old entry, for whatever reason. Why not tuck in a little message to our future selves?

My message to me, whenever it may be that I read it, and however I am feeling then, follows...

Dear Benia,
I hope you are well. I am doing much better lately. I've been eating healthy lunch salads from Whole Foods most work days, and doing Vinyasa yoga each Wednesday for an hour.

My new fibro doctor is very nice and reduced my medications to just one for fibro, Cyclobenzaprine (aka Flexeril). I am doing well as it helps with muscle spasms as well as sleep. (I take it at bedtime.)

I am currently off all supplements until I need them and doing okay. My IBS symptoms are under control, thanks to my realizing I was getting too much of some fat-soluble vitamins from my diet, and did not need additional supplementation.

Work is busy and a bit stressful at the moment, for both of us, actually. We are hoping to make some positive changes there.

The master bathroom remodel is mostly finished, though we are still waiting for a couple of doors to come in and get installed. The project started in April! I'm just glad it's almost over.

The weather has been extremely hot and dry this year. The summer weather started at the last week of winter, in March. We've never seen anything like it! Many if our native plants are blooming early this year. They are surviving, though, and the wildlife is happy to enjoy it, too. 

We have also been having a lot of freak thunderstorms - almost exclusively. They roll in, pour rain for a bit with plenty of wind, lightning, and even hail. Then they move on and it's back to hot, calm, sunny weather.

It's been a strange year, but I'm trying to focus on the positives. I am going to update my WRAP soon, since I have learned a lot about myself since I created it.

Hope you are doing great. I love you, and don't ever forget that!

Benia

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.

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

Party's Over

I was afraid my fibro "remission" was ending when I started feeling icky in the belly a couple days ago. I handled it as an IBS flare-up. No rhyme or reason. It just happens. I accept that.

Then yesterday I had trouble breathing and felt very fatigued, out of nowhere. I worked through it because I have a very urgent and important project to work on so I pushed on, stoically.  I doubt my boss appreciates my efforts. I make it look to easy sometimes, though I still suck at faking feeling fine.

Today, I'm starting to realize I'm having more, not fewer symptoms, and I have to admit... (sigh)... this is a fibro flare.

My belly hurt all night, along with some nerve pains firing frequently in my right forearm for more than a day. During the night I also noticed my right knee hurting for no apparent reason. (My left one is usually the bad one.)

Today, I was completely wiped out and still dealing with vague abdominal pain with a weird lack of appetite at work. Toward the end of the day, I just wanted to go home and lie down.

When I got home, though, my bed was not available due to workers finally installing something in our master bath. I did not want to distract them, since the project has been going maddeningly slowly for the past few weeks now. I went to the computer room to try to relax. 

Well, I didn't do it right. My back is bitching. Went out for a bite then finally, FINALLY, I'm here in my bed. I'm feeling these odd shivers of pain coming over me, trying to get my attention after I've worked so hard to ignore the signs.

Yes, body. I acknowledge that I am ill. I have a note on my desk to remind me to take beaks or you will force me to, by shutting down. I failed. Fuck me. It's time to pay the piper. Crap.

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.

Eye Twitch; Flexeril and Symptom Update

Since yesterday morning, my left, upper eyelid has been twitching intermittently throughout the day.  It's nothing I haven't experienced before, and it's pretty mild, but it's still happening right now, and it makes me self-conscious when I'm talking to people, though it's not a big deal if they see it.  Everyone's had this one time or another.  I just wonder how long this stint is going to last.

According to several web pages about this, I need to rest and relax more.  (Unwindsday, here I come!)  I have been getting much better sleep since getting off Savella, though I've had some odd back-of-the-neck pains that wake me during the night.  It's a stiffness kind of pain that restricts my movement and I have a hard time getting comfortable.  I don't know what that's about.  It's a bit scary at the time.  Everything seems more scary in the middle of the night for some reason.  Maybe my brain is not ready to think properly then.

I am going to visit my new rheumatologist this Thursday to find out all my lab test results (12 tests) and see if we can learn anything from them about why I'm experiencing Fibromyalgia.  I'm also going to let her know how I'm doing on the new drug she prescribed, Cycolbenzaprine (generic for Flexeril).

With the new medicine, things started out a bit weird - the first night I used it, I woke up about an hour after bedtime, wide awake, and was just this side of believing that I might realistically die that night.  I have no idea why.  Perhaps my heart was racing or something, but I felt somewhat out of control, different.  I lay there awake, pondering the impacts of death.  It was very weird and it's stupid to think about now, after the fact, but I did really believe it.  Finally, after some time, I convinced myself that perhaps this flavor of crazy was brought to me by my change in meds, and that the side effect may be something mental.  I fell asleep and was fine in the morning.  I lived to laugh about it.

Mostly I think the new drug is fine, it just made me feel a little anxious or something like that the first few days.  I've been having headaches, too, almost daily for several days now, but I'm not certain it's the drug.  It could be due to hormonal, since it's period time for me.

I've been experiencing some nerve pains recently, which tend to occur somewhat less frequently, and yesterday I felt a little puffy in the face, which is not a usual thing for me.  That could be allergies affecting me, though, since my throat is a little hoarse today and I started sneezing and sniffling a bit yesterday.  My allergies are LOTS better this year, though, compared to others, thanks to my years of desensitization injections.  Finally getting the payoff for all that!

IBS is behaving nicely lately and I am able to feel kind of human overall these days.  (That's the real test for how I'm doing.)  It's been a couple weeks now and I am okay, for the most part.  Various symptoms come and go, as usual, but at least I'm no longer taking sleeping meds AND a muscle relaxant - just the one drug now.

The warm weather is helping me to move around more.  I'm taking more walks and getting more exercise, but I'm still having a hard time in between bouts of energy, when I feel worn out and confused.  Hopefully the ups and downs will start evening out soon.  I am having trouble getting the pacing right and am still overdoing when I am able to.  :P  I need to update my WRAP, too, since so much has changed since I last updated it.  I'll post a link to that once it's been revised.

Terrible Weekend

I finally made it into work today after spending the last three and a half days in bed.  I am tempted to think I jinxed myself with my last post, turning my frown upside-down on Friday.  Something happened to me right after lunch Friday and it was just a very bad weekend-plus-a-day for me.

It started with explosive diarrhea.  (Hey, shit happens.  It's my forum and I'm going to be frank here, so I hope you can handle it.  That's about as TMI as I'm going to get for this one, though.)  I spent a lot of time in the bathroom Friday afternoon dealing with that.  I finished up my work day and drove myself home, exhausted.  Once I got home, I was relieved and planted myself directly into bed with all the covers over me in my clothes. I was cold and I couldn't seem to warm up, though I don't think I had a fever because I never felt hot or unbearably chilled, just cold.  I probably warmed up some, though, because my chest hived out in a rash. 

Cholinergic urticaria rash on my chest, from my own body heat

For a minute I thought I was allergic to something I ate - maybe soy, maybe sushi - but after I thought about it, I realized that I get heat rashes like this.  I have cholinergic urticaria. My stomach felt beaten up so I didn't eat dinner.

Saturday morning, I tried breakfast, thinking I might need some nutrition, but I developed crampy, abdominal pain soon after eating, so I avoided eating much Saturday and just continued to rest and drink water while staying social with online activities via my smartphone.  I had a small, simple dinner of peanut butter and banana on bread, which was small and not too hard on my belly.

Sunday, I woke up with a headache.  It was the icky kind that I had a few weeks back, when my blood pressure was through the roof and my nose was leaking blood because it apparently had nowhere else to go but out a hole in my head.  I wasn't sure what to think.  My belly was a bit better, but my head wanted to pull me into the center of the Earth and flatten me.  I'm almost finished weaning off Savella, so I didn't know if it was a withdrawal symptom, a side effect from still being on it, or unrelated to it and maybe all about Friday's possibly tainted lunch.

I was useless and laid in bed.  I couldn't even imagine reading or looking at my phone for fun activities.  I was miserable.  I tried to relax and sleep.  I managed to nap, but only after those all-too-familiar starts to fully awakened consciousness, even before ever falling asleep.  This was happening in the pre-sleep stage.  I don't know what that is.  There was no noise, no dream, no reason for these moments that I could understand.  I guess something in my body really flips out when I try to sleep when it doesn't want me to.  When I got to sleep, I dreamt something irritating that made me feel a little cranky and remember awakening suddenly - for nothing.  Again, there was no startling moment in the dream or any noises to wake me.  It was all some internal burst of WAKE THE HELL UP NOW that I cannot comprehend.

Anyway, by Sunday night, I was able to enjoy a great home-cooked dinner made by my husband and didn't feel sick to my stomach afterwards.  At least I had that victory.  I also thought my headache was on its way out, but it seems to feel temporarily better WHILE eating, but then comes back again after I'm finished eating.  What is that?

At any rate, I hoped Monday morning I'd be all set without a headache and ready to work.  No dice.  Woke up feeling awful!  I gave up hope of going to work when I realized I couldn't fathom moving from the bed.  I wanted my headache to fade away, but it was very slow to do so and stuck around through the night.

This morning, the headache was small enough for me to move around a lot better, so I went to work.  I wasn't quite myself, though, but I notice that being around people helps me forget a bit and allows me to become distracted by work or personal chit chat or stories.  I also noticed that my voice decided to leave me.  If the past is any indication, my vocal cords atrophied from disuse over the past three days and now I sound like some kind of elderly smoker.  I will try not to let it bother me and just keep using it, so it can strengthen.  In the past, I mentioned how awful my voice had gotten but people always say they don't notice, so I guess I shouldn't worry.  Could be worse, I guess.

So, I'm on the mend from whatever the heck happened Friday, wasted a weekend resting and not having any quality time with my husband, but at least didn't have to take more than one day off work to deal with it. I'm also progressing toward my last dose of Savella, which will be on the morning of March 9th, if all goes well.  In addition, I've been learning lots about Lyme Disease and a possible connection to Fibromyalgia, and will be posting more about that soon.  There is lots to learn, but it is worth looking into.  If Lyme is causing my Fibro, I can at least try the treatment that has cured many already.  Stay tuned for more on that.

Thanks for sticking with me through this detailed post!

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.

Foods Affecting IBS - FODMAP

As you may already know, Irritable Bowel Syndrome (IBS) is one of the many coexisting conditions that I experience as part of Fibromyalgia.

My understanding of IBS has always been that when a person experiences seemingly random bouts of abdominal cramping, diarrhea, and/or constipation and other digestive maladies, and no medical reason can be found for these symptoms, the diagnosis is IBS, meaning that person's digestive tract is basically stamped as being "fussy" for whatever, unknown reason.  Treatment usually focuses on addresses whichever symptoms are most bothersome, though there is no cure for the condition.

Since Fibromyalgia seems to make our bodies very sensitive to the world in many ways, it seems logical that the coexisting conditions and symptoms that tend to come with the FMS package have a lot to do with sensitivities.  We are extremely sensitive to pain or stimuli that should not even evoke pain in normal people, such as touch.  Our bodies are sensitive to activities, as we are easily fatigued.  Certain sounds, sights, and smells can cause us pain and trigger migraines or flare-ups.  Many of us have allergies and various other sensitivities to temperature, airborne particles, and foods.

I have many allergies, including some that affect my nose (allergic rhinitis), some that affect my breathing (allergic asthma),  some that affect my skin (dermatitis, dermatographism, delayed pressure urticaria and various other hives triggering conditions), and some that affect my digestive tract (food allergies and oral allergy syndrome([OAS]).  My food-related sensitivities seem to have started only in the last few years.  Among them is a mild apple allergy that was confirmed after OAS symptoms began to get progressively worse after each apple I'd eat.  Since birch pollen allergy is associated with being sensitive to apples, I checked the OAS list associated with birch pollen again, recently, when I noticed that eating a handful of almonds seems to have given me some sudden digestive distress.  It turns out almonds are indeed included in some OAS lists for birch pollen, but I feared that drinking almond milk with my cereal most workdays for breakfast may have caused a new, legitimate food allergy.  I'm not thrilled about the possibility of having to avoid another food due to allergies, especially since nuts seem to touch a lot more food than apples do.  This is the part where I start to wonder if I'll keep adding new food allergies until I eventually can't eat anything without histamines flooding my system and making me miserable.

Well, during my recent research on OAS and foods that can cause problems for people, I came across an article that discussed new studies being done on IBS being linked to foods with a high FODMAPs.  I'd never heard of this term before, but learned that it has to do with fructose and the types of sugars contained within the foods.  These characteristics have been grouped to help determine which foods might trouble a sensitive digestive tract, especially as the quantities eaten from the wrong category (high FODMAP rating) get higher.  Apples seem to be at the top of "bad" list, even though lists vary according to the publishing source, because of their high level of fructose.  However, not all fruits are high in fructose, as bananas seem consistently on the "good" list.  I find this new categorization of foods to be interesting and worth observing.

Do a search on the term FODMAP to find the exact definition of the term and the criteria used to categorize foods as having high, low, or questionable levels of the troubling substances.  I'm no expert on this, but I do remember noting that foods with lots of fructose (vs. glucose) can be troubling in the gut because fructose must be digested in the large intestines, rather late in the digestive tract.  The reason that late digestion is troubling is that it allows food to ferment and cause gas and other digestive problems.  There's a lot more to it, of course, and talking to a dietitian  is recommended, since eliminating foods from a diet can cause inadvertent problems with nutritional deficiencies.

For now, I'm sort of continuing to eat most of what I have normally been eating - a generally healthy diet with allowances for some less-than-healthy foods and treats now and then.  However, I am being cautious about almonds and switching to rice milk and soy milk for a while, to see if that makes a difference.  When IBS symptoms appear, I also have the good and bad lists of foods on the low FODMAP diet printed and handy, just to see if I've been eating perhaps too much from the bad list and not enough on the good list.

There are many lists online.  Here are some pages that I liked because they explain things a bit and have printable images listing the foods in each category and they are logically grouped.

http://www.cassandraforsythe.com/blog/Low+FODMAP+diet+has+been+great+for+my+gut
http://cassandraforsythe.com/blog/Complete+FODMAP+List+For+a+Happy+Gut
http://dysbiosis.blogspot.com/2011/04/fodmap-diet.html

Here is the page I found that introduced me to the FODMAP concept and informed me about the IBS connection.

http://ibs.about.com/od/ibsfood/a/The-Fodmap-Diet-For-IBS.htm

I'm hopeful that this research can be helpful to IBS sufferers like myself and give them more power to help control or at least minimize their symptoms.   As always, if you have knowledge or experience relate to this topic, please comment below.

Switching to Savella - Day 5

I've been working from home again today and I noticed the brain zaps are getting less frequent, perhaps because I've been at the computer most of the day. I'll take it, whatever the reason. My abdominal issues are still there on a low level, too, but I've been managing and trying not to listen to the gurgles or think about it too much.

Last night I noticed I felt this odd kind of restless, unsettled, discomfort feeling in my body. At first I couldn't find a comfortable position for my feet while watching TV, but then I realized I was trying to shake off some sort of vague feeling I couldn't name. I don't know if this is related to the drugs at all, but I'm noting it anyway because it's weird. I felt like I wanted to get away and go to bed, but when I did, the feeling followed me there, too. I am still having some of this now. I may need to try to move around more to distract my body.

I am getting better at handling the temperature issues, I think. Last night I was baking up some banana bread muffins even though the weather this week has been near the 100 degree mark with all kinds of cautions about it and everything. I managed to make the muffins and make some salad for dinner, too. I was tired, but I felt useful, which was good for my mental state.

I also went to bed without my jammy pants, though I still needed the shirt and socks. Plus I was okay with not being buried in the blanket. That's an improvement. I ended up waking up at 3am, though, with a headache and inability to get comfortable, so I didn't get much sleep. It may just be my normal insomnia combined with odd sleeping temperatures and other factors, like the headache and bellyache.  I got up at 4am when I realized sleep wouldn't be back so my husband could get some sleep.

The good news is that I managed to shower AND get dressed in real clothes today - not just swaddling clothes, like for the past few days. I even brushed and did my hair! It's almost like I'm a real person again. 

Then I went outside, picked up the mail, and looked around our yard a bit. Our poor plants are all so tired from the drought and heat, even though they are hardy natives, many of them prairie plants. Still, there was life to be found, though, while bumblebees, dragonflies, damselflies, cicadas, birds, and even baby bunnies all went about their business collecting food and doing whatever else they need to do in our little yard. After meandering our path for few minutes, I went back inside to get back to work. (The release looks like it might go well.)

I have not yet heard anything back from my doctor. :P

If all goes well tonight and tomorrow morning, I just might be able to drive into the office for work tomorrow. Won't that be something! No promises yet, though. There's no telling what's around the next corner when it comes to this kind of stuff. Stay tuned...

I'm Going Off the PPI

I left a message for my GI doctor last Friday because I was getting low on the proton pump inhibitor (PPI) medication and wasn't sure if I needed to continue taking it.

As you may recall, I began taking them to treat a painful bout of gastritis a few months back. I had found relief after taking the medication daily (once each morning). Anyway, I just spoke with the doctor about whether or not to continue taking this medication and was told to try staying off the drug for a while and see how I do. Since my gastritis seems to be under control and my IBS is finally under control at the moment, I'm hoping my body will be thankful (and not vengeful) for taking one less drug each day.

On a side note, I'm coughing a ridiculously lot since last Thursday. I've had an annoying, dry cough for a few years now, but since last Thursday, it got really frequent. As of Friday, the cough seems to have gotten a tiny bit of a rattle, but only sometimes. I assumed I was getting a bug, but because I am not dealing with any other cold or flu symptoms (from what I can tell as a fibromite) I'm wondering if GERD is the next problem. I think getting off the proton pump inhibitor now could be telling if the cough gets worse.

It would be nice to just have some stable health for a while, but with FM, if it's not one thing it's another.

C'est la vie...

Tomorrow I Move On to "Baby Steps 10+3"

Baby Steps 10+3 = 10 wall push-ups, 10 sit-ups, 10 leg lifts (using Don's weight bench), 3 arm lifts (each), 3 minutes on elliptical machine.

I've spent about 3 weeks, off and on, on the 10+2 stage, because I was having so much abdominal pain, diarrhea, and feeling like a Mack truck wreck for much of that time. BUT, since I've finally rebounded out of that IBS flare (until I find out otherwise, I'm considering it a severe IBS flare), I'm right back on track with my workout routine, and I think it's been very beneficial to me overall.

Although the weight of the abdominal trouble has finally been lifted and I am still kind of high on the feeling of NOT being in abdominal hell on a constant basis, I do still have Fibromyalgia and the pains and symptoms that go along with it.

Pacing is still an issue: I have spasms in my back if I sit too long at work without getting up and moving around, and the bones in my left arm and both legs have been very achy lately. I am dealing well with these symptoms lately, because, as I mentioned, I'm riding the high of finally being relieved of the digestive wreck that has been taking over my life since August. But I acknowledge that I'm still a chronically ill person and need to take special care not to forget and cause an unnecessary flare up.

So, I am maintaining my promise to myself to continue to slowly progress with my strength and endurance, so I can do more without triggering a flare, feel better about myself, and hopefully (eventually) manage to lose of some of this extra weight I've put on since last year. By going slowly, I've been able to feel good about achieving my daily goal every day, which is a nice feeling, and I've been able to take care to keep within my own abilities without overdoing things.

So, I've moved up from 1 wall push-up and 1 sit-up per day, back in November, all the way up to 10 each every day. After that, I added other types of activities to exercise other muscle groups and add stamina. So, I maintain the wall push-ups at 10 each day and the sit-ups at 10 each day, but now I've added leg lifts (with a very light weight), arm lifts (again, using a very light weight), and minutes on the elliptical machine that I used to use so much more before I got sick.

I've started at 1 each for these three new exercises, but a few days ago, I thought I'd see if I can do 10 of the leg lifts, since it felt too easy to do just 2 every day. The next day, I woke up with both legs feeling this awful ache, deep in the bone, all the way from the hips to the toes. I couldn't even lie in the bed comfortably, no matter how my legs were positioned. BUT, I made it through the day and am doing better. No real flare-up. I'm still doing 10 leg lifts every day now, while maintaining the gradual progression on the arm lifts and elliptical minutes.

Tomorrow, I am starting a week of 10+3. It's been several weeks since I've been able to progress much (other than the crazy step-skipping I did with the leg lifts), but I'm excited to keep increasing and maintaining. I feel stronger and better able to deal with the daily routines than I did before starting the program. I can walk at a pace that doesn't scream "granny" and hold up a crowd (as badly as before) and can more easily handle the daily routine as well as the variable tasks or events that are added to the day now and then.

I'm kinda proud.

In fact, sometimes, after getting all the exercises completed, I give myself a little pat on the back, just to make sure I remember to feel good about something as I start my day. No matter what else happens, I'll know that I, at least, was able to get my workout in.

Success! :)

Belly Update - Colonoscopy Canceled

Good news: I think the new Rx is helping me! I have been feeling much better since Saturday and haven't had diarrhea since before starting on the Xifaxan. I left a message for my GI doctor, asking if the colonoscopy is still necessary, now that I'm feeling just about 100% better. I've been on a clear liquid diet today, just in case I'm still going in tomorrow. The real prep would start at 2:30pm today (chugging the laxative stuff), so I was anxious to hear back from the good doctor.

So it's almost 12:30pm and my doctor just called. He is as thrilled as I am that I'm doing so much better on the medicine, finally. My colonoscopy for tomorrow is canceled for now (and I get to go to work tomorrow instead of taking another sick day for the testing).

I'll finish the meds out (two weeks' worth) and see if I'm still okay then. I'll report to my doctor how I'm feeling then and we'll go from there. If a colonoscopy or other testing becomes necessary then, we'll reschedule something then.

Hurray! I can eat!