Saturday, May 21, 2016

Fibromylagia and Brain Fog

My mind hasn't been truly strong and clear for a couple of years now. Constant pain, stress, fatigue, and crummy sleep take a toll on the brain's ability to keep up.

Plus my job requires intense focus, so when it's quitting time I can almost feel my brain turning to mush. It's not drug side effects, because I'm not on anything for fibro. Just my trusty thyroid meds that I've been on for years and years.

Anywho, it's worth nothing that after a few weeks of being on my gluten-free diet, I felt darn near lucid. But that faded when stress at my job got kicked up a notch and my pain and IBS symptoms increased.

My most recent brain fog story

We finally sold a property in another state after three years of having it on and off the market. (Talk about living a financial nightmare: two homes, two illnesses, and one income.) When the check for proceeds from the sale arrived, I kept putting off taking it to the bank to deposit. It was only written out to me, so it was my responsibility.

Husband: You ready for me to drive you to the bank?
Me: I have all these meetings and work. I'm too tired to shower.

Husband: You want me to drive you to the bank today?
Me: I just can't; I'm exhausted and I don't want to be seen in public like this.

Husband: How about now? You need to get that deposited.
Me: Look at my hair? They don't let people wear hats inside the bank I don't think.
Husband: We can just go to the drive-up teller. You don't have to go inside, you know?
Me: Oh. My. God. That's brilliant. Yes! Let's go.

I get so fixated on one way of doing things that I can't even see that there are other options, let alone try to evaluate them all and pick the best one.

Before my fibromyalgia diagnosis and celiac suspicions, my mind was a wonder. I felt smart and qualified. I miss that person. A lot.

Brain fog, medically speaking

Brain fog is a pretty common complaint for fibromyalgia patients. Sometimes it's severe and can be as life-altering as constant pain and fatigue.

As with most things fibro-related, the jury's still out on why brain fog happens. There are some theories out there about causes though, including:

  • Inability to get restorative, refreshing sleep
  • Abnormalities in cranial blood flow
  • Brain abnormalities
  • Premature aging of the brain
  • Mental distraction caused by pain (brain fog gets worse when pain is worse)
  • Anxiety
  • Stress
  • Sensory overload
  • Medications taken to treat fibromyalgia
I experience the full gamut of brain fog signs. I forget words or can't recall them quickly, get dizzy and lose my sense of direction, am completely unable to multitask, can't remember where I put things or where buildings are located, and am easily distracted. I mean, I know people joke about walking into a room and forgetting why, but I've elevated forgetting purpose and intent to an artform!

Do you suffer from brain fog too?

Monday, May 16, 2016

Fibromyalgia Awareness: Resources for Patients and their Families

Because May is Fibromyalgia Awareness Month, I wanted to compile a list of online fibromyalgia resources for you to use and share.

Whether you're new to the diagnosis and looking for answers, the loved one of a fibromyalgia patient, or a seasoned fibro warrior, I'm sure you'll find some—if not all of these links—helpful.

If there are additional resources you'd like to share, please post your links in the comments.

Fibromyalgia Resources For Patients & Families

National Fibromyalgia Association keeps you up to date on important information pertaining to fibromyalgia and related topics.
Dedicated to raising awareness about Fibromyalgia and offer online support. Find fibromyalgia information, news, interviews and tips.

A social network for people living with fibromyalgia.

Questions and Answers about Fibromyalgia
This article contains general info about fibromyalgia: what fibromyalgia is, who gets it, and what causes it, how it's diagnosed, and how it's treated.

Mayo Clinic Fibromyalgia Symptom List
Are you wondering if you're experiencing symptoms of fibromyalgia? This list may help.

Available Fibromyalgia Treatments

Fibromyalgia treatment options vary based on symptoms and approach. Treatment might include any combination of the following:
  • Prescription drugs
  • Alternative therapies including massage, physical therapy, chiropractic treatment, and acupuncture
  • Vitamins and supplements
  • Moderate exercise under doctor's supervision
  • Lifestyle changes, including diet, meditation, and self-pacing
People with fibromyalgia may be treated with pain medicines, antidepressants, muscle relaxants, and sleep medicines. Learn more about FDA-approved treatments at

Aquatic therapy has been recommended for the treatment of fibromyalgia syndrome (FMS). Learn why in this summarized study.

Vitamins (especially Vitamin D) have been suggested for helping ease the symptoms associated with fibromyalgia.

5 Best Workouts For Chronic Pain
If you have fibromyalgia, exercise may improve your quality of life and reduce pain. Prevention lists the best workouts for fibromyalgia sufferers.

Fibromyalgia Books

Take Back Your Life: Find Hope And Freedom From Fibromyalgia Symptoms And Pain by Tami Stackelhouse
Foods that Fight Fibromyalgia: Nutrient-Packed Meals That Increase Energy, Ease Pain, and Move You Towards Recovery by Deirdre Rawlings

The Fatigue and Fibromyalgia Solution: The Essential Guide to Overcoming Chronic Fatigue and Fibromyalgia, Made Easy! by Jacob Teitelbaum M.D.

This post is part of Being Fibro Mom's Chronic Friday Linkup.

Tuesday, May 10, 2016

Amy's Bowls Mexican Casserole Gluten Free Review

I've completed three weeks on a gluten-free diet. Without the help of packaged foods and my husband, I don't think I'd have made it this long.

Eating gluten free is so, so hard, but especially for someone who's so physically spent she struggles to walk down the hallway, is on the verge of passing out after every shower, and doesn't possess enough strength at the end of an average day to roll over in bed at night.

With my perpetual brain fog, reading an ingredients list is a challenge. Nevermind trying to plan meals or alter recipes at this stage. It. Just. Isn't. Gonna. Happen.

At least for now.

So here's another of my gluten-free food reviews. I bought this myself and haven't been compensated in any way for what I'm about to tell you.

Amy's Bowls Mexican Casserole

Price: $3.99
Count: 1
Taste: 5/5
Texture: 5/5

The Bad News
As with everything gluten free, it costs more money. Four dollars for a meal that only serves one person? I don't know how much money you make, but for me that's brutal. Chronic illnesses are so freaking expensive, throw special dietary requirements in and...good God.

The Good News
This tastes fantastic. I've always found that Mexican dishes stand up really well to the freezer. This one does too. It doesn't taste like a frozen dinner at all, and when my husband wants to get a burrito from the local Mexican restaurant, I can pop one of these in the microwave without feeling left out or sorry for myself. I think it's that yummy!

The Verdict
Buy this. Serve with pico, sour cream, guacamole, lettuce, or whatever you like. (For Cinco de Mayo, I splurged and had a Cayman Jack Margarita*.)

* This drink is "crafted to remove gluten." Not recommended for those with celiac disease, but I tried it anyway without reaction. Don't be stupid like me, unless you're stupid like me.

Wednesday, May 4, 2016

Practicing Self-Care with a Spoonie Progress Report

Via The Good Vibe on Bloglovin'
At the end of every month, I have to compile a progress report for my job. It's a little tedious, but oddly rewarding.

To complete the report, I go through my worklogs and note every project I worked on for the last 30-ish days. It's arranged so that my boss and my boss's boss can see what a badass I am at a glance. But you know what? It also helps me see what a badass I am.

As a Spoonie, I need to take note of the things I accomplish on any given day. It's so easy (but so futile) to obsess over all of the things I can't do or can't do as well as I used to since my fibromyalgia diagnosis.

For the record, that includes putting a sticker on my Chart of Life™ any time I:
  • Take a shower
  • Make a meal
  • Put on real pants
  • Fold a basket of laundry
  • Change the sheets on my bed
  • Leave the house
  • Put an entry in my food diary
  • Make time to soak up some sun
You get the idea.

I'm lucky to have a full-time job with benefits, but there have been too many days in the past couple of years where I've been riddled with anxiety, fretting that I would lose my position due to chronic illness.

If I don't work, there is no money to pay the mortgage or get groceries. And being sick all the time is catastrophic enough.

But I'm not going to worry about those things today. I'm going to take another glance at my progress report for work and give myself a hellzyeah! (or two) for a job well done, despite life's mentally and physically crippling challenges.

Even if you don't work, I encourage you to keep track of all the little but important things you do. For a few minutes a day, you can shift your focus. That's empowering.

So grab a journal or open a new draft in your blog and start your Spoonie Progress Report for May!

Wednesday, April 27, 2016

Immaculate Gluten Free Chocolate Chunk Cookies Review

On my husband's last trip to Meijer, he bought me Immaculate Gluten Free Chocolate Chunk Cookies to try while I continue to contemplate whether or not I have Celiac Disease.

We've always liked the convenience of refrigerated dough, whether we buy pre-packaged stuff or make it from scratch and store it in air-tight containers. Small batches of freshly baked cookies are where it's at, if you ask me.

Immaculate Gluten Free Chocolate Chunk Cookies

Price: 3.59
Count: 12
Taste: 5/5
Texture: 4/5

The Bad News
These cookies were neither crisp nor chewy; they seemed almost raw even when thoroughly cooked. In fact, it was kind of surprising that at the end of their baking time, they were very brown but not hard as a rock.

Also, who needs that "please do not eat raw dough" negativity? Am I right?

The Good News
The taste is sweet and chocolatey and sure to satisfy a dessert craving. I have a hunch that these suckers would be fantastically gooey topped with some vanilla ice cream. (Incidentally, these are dairy-free cookies, so if you're getting them for that reason? Totally skip the ice cream.)

The Verdict
To me these are worth the price. First, you can make just a few at a time if you want. Plus, they're handy if you're looking for an indulgent treat that doesn't require the effort of actual baking and the hassle of clean up.

Monday, April 25, 2016

What It's Like to Leave the House with Fibromyalgia

I spent about two hours outside this weekend, including a short trip with my husband to our nearest big box store's garden center. According to my D Minder vitamin D app, I made nearly 8,000 IUs of vitamin D this weekend.

I accomplished something!

Standing up was hard and walking around was even harder. I've been struggling mostly with muscle weakness and vertigo lately, so I clung to the cart the entire time. Toward the end of the ten-minute romp through potted plants and stacks of mulch, all I wanted was a chair or bench. My legs were so tired. So shaky. So weak.

My husband paid and chatted with the cashier. I just smiled; my brain felt slow. I needed to focus on standing. I worried that if I tried to talk, I'd lose focus on my legs and just collapse embarrassingly.

When we made it back to the car, I dropped myself into the passenger seat. There's no such thing as controlled motion with me right now. Then I had to clutch my pant legs and lift so I could get my legs inside the vehicle and close the door.

The rest of the day at home was a struggle too, but at least I got to struggle while wearing pajamas. With lawn mowers going all weekend and fuzzy seeds and pollen floating in the air, my allergies were intense. I took Zyrtec; it helps tremendously with my sneezing and watery eyes, but can leave me my dizzy and extremely tired. So I napped in a lounge chair in the back yard while my husband spread mulch and planted rhubarb for me.

When it was time to eat dinner, I was so weak. I couldn't life myself from the couch. I couldn't cook my own dinner. I went to bed at 9:00 and fell asleep right away. At least I didn't have to deal with insomnia too.

Friday, April 22, 2016

Fibromyalgia, Chronic Pain, and the Movie Cake

If you haven't yet seen Cake but want to, you might want to bookmark this post for later.

Sunday afternoon, my husband, Dan, and I were looking for something to do that didn't require a whole lot of effort. 

"Hey," I said, "Cake is still in our Netflix queue."

A part of me wanted to see it when it was still at the theater—the part of me filled with delusions about being able to sit in a comfortable chair for 102 minutes, let alone an uncomfortable one. The sane part of me, however, knew I'd be better off watching it at home. And, luckily, the sane part of me still wins most of the time.

Five minutes into the movie, I was fighting tears. Jennifer Aniston was so believable playing the role of Claire Bennett.

"It's making me hurt just to watch her," Dan—who knows chronic pain in the form of psoriatic arthritis—said. I agreed. (In fact, since I saw the movie two days ago, I've been in a flare. Perhaps I identified with her pain a little too much for my own good?)

There were many things in the movie to which I could relate, but two really struck me: Claire's hair and her clothing. It's not that I want to go out in public looking like a giant sack of potatoes; it's just that it's the best I can do most of the time. On the rare occasion that I feel up to doing more to make myself presentable, I don't want to waste my energy on something so superficial. I'd rather use my energy to make a meal or wash and fold some laundry. So combing the tangles out of my hair after a shower? Not on your life, man.

If you can tell that my hair has been blown dry, you know I'm having one of the best days I have had in 14 to 18 months. Or at least I want you to believe that I am.

Light a Candle

Here's a little exercise that may help you comprehend how chronic pain affects everyday life for people. Go grab a butane lighter (one of those multi-purpose deals) and a candle. Now light the candle with the lighter. Can you even imagine not being able to make one of those things work? I couldn't either. Until yesterday.

My hands are so weak right now that I have to use both of them to produce a flame. I need one hand to press the safety mechanism and the other to engage the trigger. Once the flame is rolling, I may or may not be able to connect the fire with the wick of the candle. This simple task used to require a thumb, a forefinger, and barely a thought.

Now imagine making a few of these can't-do discoveries every week for a year or more. The pain drains you of everything—will, muscle tone, positive attitude.

My luxurious bath towels are too heavy to hold, so I have to go back to old skimpy ones.

I get winded trying to roll over in bed. Sometimes I can't muster the energy to change position until long after my legs have started aching.

Do I get depressed sometimes? Fuck yeah, I do. You would too.

People with Chronic Pain Judging Other People with Chronic Pain

Back to the movie though. At some point during the film when Claire was trying to get her hands on more opiates, Dan told the TV that Claire needed to at least try. I immediately came to this fictional character's defense. A few minutes later, though, and I was the one being dismissive of her struggle. 

Oh, well at least she's got physical scars and a clearly identifiable cause for her pain. 

"Why are we like that?" I asked Dan. "If anyone's going to be able to empathize with someone who has chronic pain, it's going to be someone else with chronic pain, right?" 

It wasn't really about empathizing with a fictional character, though. I was expressing my frustration that her story wasn't exactly like my story. Because I want people to get me. I want my own validation. Screw Claire Bennett. Whoever she is.

No wonder people with addictions, chronic pain, and invisible illnesses become jaded with support groups. You have to go in with the understanding that even after sharing the most intimate details of your personal story once a week for months or years, not one other person will know what it's like to be you. And people who've never been to a support group in their life will ask helpfully, "Have you tried going to a support group?"

Wait a minute. Do I mean that in addition to losing a child, getting a divorce, paying bills, overcoming the constant pain and disabling results of the wreck, fighting drug addiction, taking a shower, and suppressing thoughts of suicide, Claire Bennett has to dig even deeper and figure out by herself how to manage her own expectations at group therapy?


And the kicker? Group therapy, like the pool therapy that torments Claire, was probably required by her doctor. She has to prove to her prescribing physician (someone who probably only intellectually understands what chronic pain is) that she's deserving of a few meager moments of opioid-induced respite. How does she prove her worth? By SUFFERING.

Then she has to hide her addiction to said painkillers so people don't label her a pillhead and make it even harder for her to find relief. Anyone still wondering why Claire squirreled away meds behind that painting in the hallway?

Anyone still looking down on her for making Silvana drive her to Tijuana?

I don't take prescriptions for my chronic pain. But what if I need them someday? Is this what I have to look forward to?

The End

So eventually Claire decides to kick the painkillers, offers conciliatory vodka to her group therapy leader, and gives water therapy another go. She brings Nina's surviving child (Nina is the woman from group therapy whose suicide haunts Claire throughout the movie) a shark kite and a cake for his birthday. Then the movie ends with Claire finally sitting upright in the passenger seat of a moving vehicle, presumably for the first time since the car accident that killed her own son. If all of this gives you warm fuzzies and fills you with optimism for Claire's future, congratulations! You still have no idea what it's like to live with chronic pain.

Just because Claire's got her shit together now doesn't mean she'll have that luxury tomorrow. Perhaps the hardest part of living with chronic pain is having a few good days, and then having that progress ripped right out from underneath you without cause or explanation.
This post was originally published on my old blog on July 28, 2015.