Supplements Working or Placebo Effect?

I seem to have more energy lately. 

I've been able to do more chores around the house like dishes and laundry.  To a normal healthy person, dishes and laundry might not seem like a big deal; however, they are high energy activities that have a history of tiring me out. 

Climbing stairs has also become marginally easier.  I still feel winded at the top of the stairs, but not to the same degree...I think.

I'm feeling cautiously optimistic about this newfound energy.  In the past, big improvements in energy have often preceded illness or a major crash.  I'm making an effort not to overdo things to avoid pushing myself into a crash. 

It has been a couple weeks since starting on my 100 mg CoQ10 and 100 mg B2/Riboflavin three times a day.  I have a history of deficiencies in vitamins B2 and D, iron, and CoQ10 (as well as glutathione), so it makes sense that I might feel a bit better with such high doses of B2 and CoQ10 supplements.

I would like to think the supplements are actually helping me feel better, though I am open to the possibility of a placebo effect.  Whatever the case I'm feeling an improvement, so I'm not going to look a gift horse in the mouth (what does that really mean, anyway?) and enjoy things while they last.  

In case you're interested, here's my latest daily supplement/Rx list:

• Multivitamin, 1x day (I rotate between three brands: Centrum (1 tablet), Holistic Health Neurological Health Forumla (2 tablets), and Brainstrong Prenatal Vitamin (1 tablet + 1 DHA softgel).  No, I'm not pregnant; I take the prenatal vitamin because it has a higher dose of biotin than most vitamins.  I rotate vitamins because each is different in content and amounts.)
• 500 mg Calcium + 800 mg Vitamin D, 2x day (I take Caltrate Gummy Bites -- yum!)
• 100 mg Coenzyme Q10, 3x day
• B-Complex vitamin, 1x day (includes 100 mg B1/Thiamin, 100 mg B2/Riboflavin, 100 mg Niacin, 100 mg Vitamin B6, 400 mcg Folate, 100 mcg B12, 100 mcg Biotin, 100 mg Pantothenic Acid)
• 100 mg Vitamin B2/Riboflavin, 2x day (I only take this pill 2x day because the B-complex vitamin includes 100 mg B2.)
• 65 mg Iron, 1x day
• 25 mg Zoloft
• Yaz birth control pill
• 1,500 mg Metformin

If you are a long-time reader of my blog, you'll notice that this list is quite a bit shorter than previous lists.  The truth is that I got tired of taking so many darn pills all the time, so I decided to cut back for my own sanity.

I realize that I could possibly feel even better if I took additional supplements (NAC, ATP, potassium, fish oil, etc.) or went back on the various protocols I've tried in the past, but I just got so resentful and angry at my exploding pill box.  I had to stop the madness.

My new rule is that everything has to fit in my pill box.  If it doesn't fit, I'm not taking it!

A Lost Weekend

I can't believe it's already Sunday afternoon. CFIDS has stolen another one of my weekends.

I slept all day Saturday, only getting out of bed to shower and eat. Today is a little better because I've got slightly more energy and have been able to watch a little TV and chat with my husband, Kenny.

I'm hoping I'll feel better by next weekend because I'd really like to go out on a date with Kenny. Going out to eat or going to the theater to see a movie are about the only kinds of dates I can tolerate because I can sit the entire date (though even movies are sometimes too much to handle because of their volume and because I have to focus to follow the plot). Everything else takes up too much energy.

I can't wait to get well.

Today's Activities: home. Today's Symptoms: exhaustion, mild headache, moderate cramping (due to menstruation), profuse sweating; active eczema on right ankle.

Mood (10 is best): 5
Energy (10 is best): 3...but yesterday was a 2
Physical Discomfort (10 is worst): 6

Just Resting

I've spent most of this weekend just resting (except for this morning when I went to coffee with a friend who will be moving to another state).

I'm feeling better now than I was a few days ago. I slept 11 hours last night and took a nap this afternoon. My body has appreciated all the sleep I've gotten since Friday night.

I'm going to make a greater effort to use less energy this week.

I have to admit to myself that I overdid it last week. At work I got up one too many times from my desk and walked around much more than usual. I also ended up doing a bit more than my share of work because we are currently shorthanded. At home I walked up and down the stairs more than usual because I kept forgetting this or that or just wanted to get on the computer.

Bad me! I should know better. After dealing with CFIDS for nearly a decade (and having been bedridden and unable to have a full-time job for two of those years), one would think that I'd know my boundaries by now. I do, but I don't always adhere to them. Though my body acts like it's 100 years old, my mind is still young and thinks young thoughts. It easily "forgets" that I can't go out and behave like a normal 30 year old.

It's the energy crashes that shock me back to reality. Bad CFIDS!

This week I'm going to conserve my energy. Period. No excuses allowed.

Based on a fellow patient's excellent suggestions, I'm going to start giving a score to my symptoms. Eventually, I'll start an actual symptom diary on some sort of spreadsheet (once I work up the mental energy to put one together). For now, I'm going to list things on my blog.

Today's Activities: coffee with friend, rest at home. Today's Symptoms: exhaustion, nausea, mild headache; active eczema on left underarm and right ankle; rash on back and abdomen healing.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

End of the Week Energy Crash

I started crashing on Wednesday.

I made it to work every day this week, but it got harder and harder as the week progressed. Making it through the day became an Olympic sport by Friday. My brain fog has been awful. On Thursday on my drive home from work, I missed a couple of turns which made my drive longer than usual.

I was having trouble with my insomnia at the beginning of the week, but by Wednesday night I was falling asleep quite quickly because I was so exhausted. Last night I passed out around 8:30PM and didn't wake up today until close to noon (that's almost 16 hours of sleep). My husband had to help me sit up in bed to eat a little breakfast this morning before I had enough energy to take a shower. I've been half asleep on the couch since then.

I'm not sure if the crash is a delayed reaction from my trip to Utah, a reaction to the new treatment protocol I started this week, or because I had a busier work week than usual.

Who am I kidding? It's probably all of the above and more.

Now that I've started my new treatment plan, I've decided to start tracking my symptoms by listing them on every blog entry. Doing this is mentally easier for me than trying to start a symptom diary...even though I realize it's pretty much the same thing.

So here it goes.

Today's Symptoms: exhaustion, muscle fatigue, brain fog; rash on back and abdomen still present but healing; active eczema spots near both underarms and right ankle; mild headache; mild diarrhea.

Unpredictable Energy Levels

My energy levels have been all over the place this week.

For most of this week I've felt like I was dragging myself through each day. I was particularly exhausted on Wednesday; I went to bed around 7:30pm and slept through the night.

Friday evening was awful. I felt like a ton of bricks had been dropped on me and was running a fever. My whole body ached and even getting up to brush my teeth felt like running a marathon. I was worried that my fever and malaise were the beginning of a dreadful weekend. That night I slept over 14 hours (went to bed around 10pm and woke up after noon on Saturday).

I was a bit surprised when I woke up on Saturday afternoon not feeling too bad. My fever had gone, and I was no longer achy. Saturday started off like any other Saturday for me, but then turned into a bizarre (in a good way) energy-filled afternoon. I felt good enough to do six loads of laundry and even had enough energy left over to organize a couple of shelves in our laundry closet. What was funny about Saturday is that I had enough physical energy to clean, but I had no mental energy to get on the computer or talk to anyone.

My husband Kenny couldn't believe his eyes. He also kept warning me to slow down because when I've done things like this before I've regretted it. I went to bed around 10pm and woke up a little after noon on Sunday (today).

Today I am paying for yesterday's unexpected burst of energy, though not as dearly as I had expected. My lymph nodes are sore; I have a headache; I feel achy; and I am somewhere between tired and exhausted. I definitely could not do six loads of laundry today.

Because I've had CFIDS for my entire adult life, I have had to adjust to my constant state of fatigue. In my world, I measure my energy levels on a scale from "Tired" (feeling pretty good) to "Exhausted" (feeling not as good) to "Completely Incapacitated" (can't even go to the bathroom without help). Anything better than "tired" is extraordinarily unusual. Yesterday was a gift. Most people who know me might be surprised to read this part because I am very good at appearing awake and keeping a happy face, even if I'm not feeling that way.

I think I need a nap now.

By the way, Happy Father's Day!

Update at 5:47 PM: Not long after I wrote the above blog post, I crashed. I started feeling pretty awful. I took a nap, but it didn't help much. My throat is hurting now, and I feel even more achy. And my life with CFIDS continues...