Wednesday, June 27, 2012

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.

Monday, June 11, 2012

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.

Friday, June 1, 2012

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.