Tips and Tricks for avoiding Fibro Flares

Fibro Flares suck. They hurt and they interfere with life. After I was diagnosed with Fibromyalgia and Chronic Fatigue, my first priority was to learn to how to deal with a fibro flare when it happened. And they were happening all the time. After discovering how little could actually done to end a flare, I decided to start looking at ways to prevent them. Here are the tips and tricks I've learned:

1. Pick my positions carefully. The position I sleep in, sit in, and walk in - the wrong position in any of these could cause a flare.
2. Soft, comfy tennis shoes with good support are non-negotiable. If I will be walking longer than 1 block the bulky shoes go on. I fought this one for a long time before finally deciding that my ego is less fragile than my head.
3. Walk early and often. I try to get a walk in first thing in the morning. Starbucks is 1.5 blocks from our building so it's the perfect incentive to get myself up and moving. Then, taking the puppy next door to the park in the afternoon keeps my muscles from getting stagnant and tight.
4. The right pillows can make or break my day. I have 3 that I depend on. One is super fluffy that I use for side sleeping. The second is a special pillow that my mom made for me. It's a regular pillow that we sewed a circle in the middle of. It supports my neck and the sides of my head when I sleep on my back. The third pillow is used to support various parts of my body, depending on how I'm sleeping.
5. Sleep!!! Do whatever it takes to get enough quality sleep. I take Melatonin at night to help me fall asleep. And I made Alex put a dark sheet over the window in our bedroom so I could sleep in later.
6. Rest. I stop often during the day to take breaks. I need physical and emotional breaks during the day.  Adrenaline is a powerful drug and if I allow my stress level to rise even a little, the adrenaline interferes with my ability to relax my body and evaluate my physical well-being.
7. Change positions regularly. I try not to let any one muscle or spot on my body take too much pressure. It seems so bizarre that resting my leg against a wooden table can cause a fibro flare. But all it takes is one area of nerves being overexcited for my whole body to react and protest.
8. Stretch and relax my tight spots often. For me that's my neck and jaw. And I probably stretch them every 30 mins or so.
9. Pay Attention. During the diagnoses process, I used a pain scale that differentiated between pain you can feel (level 3), pain that interferes with your life (level 4-6), and pain that is actively preventing you from living (level 7-9). Or bad, worse, and worst. I can live with the bad pain. It isn't ideal, but I can function and almost ignore it. But, once a pain is interfering with my life, I need to take action to stop it from becoming the worst pain. This means constantly scanning my body to see if I'm subconsciously adapting to a painful spot, or watching my emotional responses for uncharacteristic behaviors that could indicate fatigue.

Do you guys have any helpful tips or tricks for preventing flares?

New Exercise Routine, Take 2

Yeah. So. Um. That exercise routine I wrote about in my last post? Yeah, that didn't stick.

And, uh, the 2 months it's been since I last wrote? That would be me subconsciously trying to avoid facing up to my, uh, what should I call it... Failure? Disappointment? Overconfident Overplanning?

Regardless, after actually engaging in a different (though pulled from the same articles) exercise routine, I can definitely say:

If I'm going to start something new, it better be simple as hell.

Now, every day is the following: Elliptical, Push-ups, Rows, Glute Bridges, Wall Sits, Planks. In that order.  And, every day I'm just trying to do a little more/harder/longer than I did the day before. So far it's working out well. The first couple of days were painful - as in, migraine, sick to my stomach, runny nose painful. I'm still going, but am definitely popping more Aleve than I like. (As someone who has had many rebound headaches, I'm pretty nervous about OTC medicating 2 days in a row.)

Back to my routine... It's pretty sad right now, but at least I'm doing it & working to my capacity. Here are my numbers as of today:

• Elliptical - 5:46 mins, .3 miles (I alternate between doing longer times/distances and doing the same distance in a shorter time)
• Push-Ups - so modified!! - I do wall push-ups at a 30 degree angle, not even knee push-ups yet! - 2x10
• Rows - 2x10 with 54 lbs
• Glute Bridges - 2x 00:20, 1x 00:30
• Wall Sits - 3x 00:20
• Planks - modified on elbows and knees - 3x 00:20

Here's to gaining strength!!

New Workout Routine

CFS & Fibro can seriously complicate a girls life.  I was a hottie for a long time.  People checked me out & I knew I was attractive. It was only after people talked to me that they realized how incredibly bizarre I am. The people that wanted to be my friend even after getting to know my wacko side are true friends - and they're the friends I love to have. But, I still miss that look in strangers eyes when they meet me for the first time - the simple appreciation for a woman who is healthy & beautiful.

Enter the complication...With Chronic Fatigue and Fibromyalgia, getting back into shape is like walking a tight rope.  If I push myself too hard I'll start a major flare that can last weeks. Maybe there are brave, amazing (or masochistic) people out there that will work-out through a Fibro Flare, but I am not one of them.    On the other side of this evil rope, though, if I don't push hard enough I can't improve, build muscle, or lose fat.

So I've created a new workout routine that I hope will help me carefully walk the tightrope.  I used an article by Bret Contreras as my guide for creating the routine and Nia Shanks as my inspiration for the exercises and my evaluation of performance.

The primary concept of my plan is that I want to improve my real-life functionality. This means better:

• Endurance
• Strength
• Speed
• Flexibility

My routine and all of my exercises are built around improving in these areas and keeping me motivated by providing flexibility and variety.  Here's what my weekly plan looks like:

Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday
Endurance Flexibility	Strength	Interval Flexibility	Strength Flexibility	REST	Speed Flexibility	Strength Flexibility

The Flexibility section is the in-depth warm-up and stretching routine I do to prevent Fibro flares.

Endurance, Interval, and Speed all reference traditional cardio: Walking/Jogging, Bicycle, etc.  On Endurance days, my goal is to go a longer distance than I did last time.  Interval days will be pushing my intensity level for short bursts. And, Speed days are when my goal is to do the same distance as my Endurance day, but in a shorter time.

The Strength training portion is where we get to have fun.  My strength routines are made up of 5 basic pieces:

1. Lower Body Push - compound exercise like squat, lunge, step up
2. Lower Body Pull - compound exercise like deadlift, glute ham raises, glute bridge
3. Upper Body Push - compound exercise like push-up (or knee push-up for me), chair dips, incline push-ups
4. Upper Body Pull - compound exercise like pull ups (palms forward), chin ups, rows
5. Core - compound exercise like plank, L-sit, superman

I even made a nifty Excel spreadsheet that lets me pick out my exercises and track my performance on them. Because, yes, I'm a dork like that.

I'm now doing strength training 3 times per week. Hopefully, I can maintain the tricky balance required to get myself in shape and keep the evil flares away!

Sleepaholics & Weight Gain

I am obese. Technically & officially past the overweight stage and into obesity. My BMI is 32.7. I am 5'8.5" and as of this morning, my weight was at 218.2.

I've never been tiny but as a teenager & 20-something, weight wasn't something I ever had to worry about. I gained some, I lost some. If I got above a weight I was comfortable with, I just made sure to increase my activity level.  Then, in my late 20s I started gaining weight at a faster pace. 

I tried various exercise programs, routines, and classes, but was never able to stick with them. I started beating myself up over it - thinking I was lazy, had no willpower, or was just fickle. I would get a nice, hard work-out it, then be in pain the next day. Many friends told me I just needed to work through the pain.  With CFS & Fibro, there isn't actually a point where it doesn't hurt anymore.  However, since I didn't know what was going on with my body, I just thought I was a wimp.

Now that I'm learning how to deal with the awesomeness that is my way-overactive nervous system, I feel more able to deal with my weight issues.  I know that pushing too hard is the worst thing I can do. Even pushing to my max can cause problems, so I have to do it carefully and with planning for the week ahead.  I have to think, "If I push too hard, can I afford to live the next couple of days on the couch?"

We're also trying to adjust the way we eat to be healthier. Because Fibro & CFS don't have any known syndrome, we're trying to eat chemical free, low-sugar, low-dairy, low-to-no meat.  It's a really interesting challenge to find new ways to eat. We have to relearn everything from grocery shopping to meal-planning to actual cooking. 

The healthier eating part is fun, because I love a wide variety of food and flavors. I get to experiment with Indian, Thai, Grilling, etc. Plus, since we're trying chemical free, I get to play with food preservation. And, it is play for me because we live within 2 blocks of a PCC, Metropolitan Market, and Safeway with an awesome natural foods section. That way, when I burn dinner, we don't need to resort to Kraft Mac n Cheese! I'm considering recording some of these food experiments on my other blog, Let's Be Five. It's more fun and adventure over there, so it seems the right place to put these trial & errors.

Here on Sleepaholics I'll like to track my efforts at exercise.  This is definitely the place for it, since all my exercises and routines will be tailored to deal with Fibro flares and CFS meltdowns. 

Look out for posts on what I've tried so far, and what I'll be doing next. Coming soon to a blog near you!!

The Shoes of Fibromyalgia

A Journey of CFS and Fibromyalgia...  

Through Shoes

I love these shoes. While wearing them I feel amazing.  Powerful. Sexy. 

I walk into the room knowing I am special and unique.

These shoes make me feel confident.

At least they used to. Now they are just painful. I can stand in them for about 5 minutes before I need to sit down.

 These lovely wedges were my go-to running around or networking, coffee shop or office shoes.

These could be worn with jeans, slacks, or skirts.

They made me feel cute, put together, like I had a secret no one knew.

Now, I can wear these shoes for an evening out. If the evening out is dinner and a movie. With no lines.

And, I don't have any walking to do the next day.

Now, I wear my trusty Reefs. They have arch support. They remove quickly for resting my feet. They don't put any pressure on the tops of my feet.

But they are absolutely not cute.

For cute, I wear these.

I never realized how much shoes affected my outlook on life.  It's time to reclaim my confidence through shoes.

The bad days of Chronic Fatigue

When starting this blog, I was hoping that I would be able to keep it upbeat.  There's nothing worse than listening to people complain about their problems, right?  But, I also decided that I need to try to post every day.  Today I realized that posting every day means there will be posts on bad days. 

Bad days are different for every person that has CFS. After all, what makes a day terrible for me may only be annoying for someone else. Some Chronic Fatigue sufferers may consider the days of complete exhaustion the worst.  For others, it could be the intense muscle aches. What I consider BAD days are the ones that include headaches. 

(You would think that since I've had regular headaches for almost 15 years, they would be something I'm used to.  So not true.  They're actually becoming more obnoxious to deal with.)

With the bad days comes the challenge of trying various remedies to see what makes it a bit better.  Hot baths, cold packs, stretching, exercise, medicine, massage, etc.  Occasionally, one of these will actually work.

Since I'm trying to be proactive about my health and life, the bad days are an opportunity to review the choices I've made over the last few days to see if there is something better I could have done. (And, yes, being this optimistic while feeling like my head is going to explode is difficult. And a little sickening.)  So, what are the possible causes of today's yuckiness?

• Afternoon nap - for some reason, I get most of my headaches in the afternoon. I wake up from my nap with them. This needs to be fixed.
• Lack of exercise - haven't been attending my water aerobics classes regularly for the last 2 weeks.  I have fewer bad days when I'm consistent with low-impact exercise.
• Not enough sleep - last night was rough.  Sleep did not want to come. And, I woke up much earlier than I wanted to.  
• Several days without naps - the last couple of days have been really long.  While I didn't exert much energy, I was awake and out for most of the day.

Listing it out like this really makes me realize that I have spent the last several days not taking care of myself. And now I'm paying for it. Ugh. 

 

Undiagnosed Chronic Fatigue (CFS) messes with your mind...

If Diabetes is a silent killer, then Chronic Fatigue is a sneaky bastard.  It is an illness that doesn't look like an illness.  It masquerades as a whole bunch of other issues:

• ADD/ADHD
• Depression
• Laziness
• Being out of shape
• Migraines
• Tension Headaches
• Colds
• Allergies
• Forgetfulness
• Vitamin D Deficiency
• IBS
• Flu
• Pulled Muscles
• Self-Centeredness
• Lack of Passion/Drive/Interest/Caring
• TMJ
• Insomnia
• Anxiety

While each of these issues can be present in the life of someone (say... Me) with CFS, until you realize that they are caused or made worse by Chronic Fatigue, you can't fix them.  And, with these as your primary symptoms , it's hard to see that they may actually be caused by the same problem.  They appear to be so unrelated.  

The physical issues - headaches, colds/flues, muscle pain - all seem like isolated events that have common causes.  Then we have the mind/emotional issues - depression, forgetfulness, being self-centered, ADD - that are often all lumped together and "fixed" with medication and thought-process counseling.  

In fact, many people don't even get diagnosed with Chronic Fatigue until they've pushed themselves so hard that their body just completely shuts down and goes on strike.  It takes an absolute breakdown to see that these warning signs have been indicating a bigger problem.

What does this mean for someone who has Chronic Fatigue but doesn't know it?  It means they have a list half a page long of 'issues' that they are trying to deal with.  And that nothing actually solves the problems.  With this pattern, it's easy to see why most people with CFS are misdiagnosed as having severe depression.  

In fact, I remember telling my doctor (after 5 years of on-again/off-again depression treatment), "I don't think my tiredness is because of depression.  I'm pretty sure the depression is caused by my lack of energy and how that affects my life."  It took another couple of years and 2 other doctors before I was finally diagnosed with Chronic Fatigue.  And then, it was only given along with my Fibromyalgia diagnosis.  

For the record, looking back I'm pretty sure I had Chronic Fatigue long before I had Fibro symptoms.  But that's a post for a different day.

Since being diagnosed, it has been an interesting journey.  There is, of course, the grieving process that goes along with any chronic illness.  (Again, a post for a different day).  But since I reached acceptance, I've been getting to know myself all over again.  I no longer have a half-page list of issues to work on.  I don't think of myself as the person that gets any medical problem that comes within 10 miles of me.  

Now I know that I have ONE issue that has lots of ways of showing itself.  But I've already learned a few ways to take care of this one issue.  Rather than living in constant fear of the horde of problems always waiting to ambush me, I'm learning how to control the big beast.  It's brought back my confidence.  I may only be awake for 5 hours at a time.  But each 5 hour segment is more vibrant than the dreary 17 hour days were.  

Welcome to Sleepaholics!

Sleeping Beauty.  Rip Van Winkle.  Hibernating Bears.  Me.

What do all of these things have in common?  A large part of our lives revolves around sleep.  

I was recently diagnosed with Chronic Fatigue Syndrome, which basically means that I am tired all the time. I sleep an average of 13 hours every day - usually 11 hours at night with a 2 hour nap in the afternoon.  If you're unfamiliar with Chronic Fatigue, you probably think that sounds heavenly.  You may even be thinking, "It must be nice to be able to sleep that much."  But, you'd be wrong.  

On a normal day I am awake for 5 hours at a time.  5 hours in the morning, take an afternoon nap, and 5 hours in the evening.  Honestly, it's weird.  Trying to live a normal, adult lifestyle while sleeping like a 2-year-old doesn't work.  

Now, I *can* push it and stay awake all day long, but after 7 hours awake my thought process slows down, decision making is difficult, and even my eye sight suffers.  After 12 hours awake I am a walking Zombie. And, 2 days in a row of this?  I will wake up as a walking Zombie.  

Because this is a fairly recent diagnosis, I am still trying to figure out what this means for me.  Right now, my focus is on learning how to manage this inconvenience so I can continue to lead an exciting and fulfilling life. I will be using this blog as a place to document my journey - my experiments, the successes and failures, and my emotional ups and downs as I explore this odd new place.

Come along for the ride.  It will be an experience.