More Pain Means Less Everything Else

I've been living with more chronic pain lately and it's starting to show.

My mother-in-law called the other day and asked my hubby, "Why hasn't Selena posted on her blog lately?  Is she OK?"  She wanted to talk to me, but I was in the middle of a task, so I asked if I could call her back.

That gave me time to really ponder her question.

The truth is, I've been in a fibro flare-up for over 18 months now.  I know how it started -- being involved in a car accident last year.  Because getting into any kind of accident when you have chronic pain is probably one of THE worst things that can happen to you.

But then I realized the chain of events that has kept my flare-up going since then.  Things like:

• ongoing dental work, in the form of crowns and root canals, that is causing me more pain. It seems like every 6 months I need another dental procedure! Next up...another root canal.
• an increase in doctor's appointments, which are using up a lot of my available energy. But I feel the visits are an important part of my "get better" plan.
• participating physical therapy, which unfortunately is increasing my pain and fatigue in the short run.  I am hoping that if I stick with it, it will be helpful to me in the long run. *fingers-crossed*

And let me not forget my post-accident anxiety about being in a car.  I am really paying attention to how other people are driving now and it is downright scary sometimes. I'm working on being less hyper-vigilant, but in the meantime, a ride in the car can be quite draining.

Here are some of the other things that a severe pain flare-up can do to us:

1) Any increase in severe pain mean you have less of everything else: less energy -- physical, mental and emotional, fewer good days, a decreased ability to leave the house, run errands and go places, and a diminished capability to get things done. 

2) Any time you have an increase in severe pain, you are forced to cut back on all your activities -- physical, mental and emotional.  The longer the duration of your increased pain, the more you cut back.

3) Deconditioning can be the result of a prolonged reduction in physical activity due to an increase in severe pain. Deconditioning is defined as:

...the loss of muscle tone and endurance due to chronic disease, immobility, or loss of function.

Deconditioning becomes another challenge to overcome on your path to recovery from a severe flare-up.

4) Ongoing pain flare-ups increase the other symptoms associated with your particular chronic pain disorder.  For me, this means more fibro fog, more painsomnia (pain-related insomnia), more fatigue and more numbness and tingling in my arms and hands.

So why haven't I been blogging more lately? 

Clearly my increased pain, fatigue and fibro fog all play a significant role.

But it is also my conscious choice to spend more of the energy I do have on the things that have the potential to help me get better in the long run, like treating my dental pain, seeing my pain management doctor and doing my best to participate in a gentle and graded physical therapy program. Because I want to get back to my baseline, to be a 30 out of of 100 again.  I've been more of a 20 for the last 18+ months and frankly, I'm not happy here.  (See the scale I am referring to here. )

I want to get back to container gardening, crafting, gaming and doing more of the things I used to be able to do a regular basis.  That includes achieving my goal to consistently blog and write too.

So while most normal, healthy people might recover from a car accident in 6 to 8 weeks, the simple fact is, for someone like me living with fibromyalgia, it takes more like 60 to 80+ weeks to recover.  It's the proverbial situation of "adding insult to injury."  When you live a life with chronic pain and/or chronic illness, it just takes more time to bounce back from any added severe stress, injury or trauma.

But I will get there, I promise you and I promise myself.  It is just going to take more time, energy and patience. What keeps me motivated?  Looking forward to less pain meaning more living my life.

Mission 2011: Mary Poppins and the Symptom Log

Image via Wikipedia
About half-way through the month of January, I had a "light bulb" moment. I realized that I overlooked a topic that would have been the logical start for my Mission 2011. In hindsight, I probably should have kicked things off by charting my symptoms and assessing my baseline, then tracking what I am doing and the resulting improvement (or lack thereof) every day.

You know that little "UGH!" noise you are making right now, either out loud or in your head? Yeah, I am making it too. That gut reaction prevented me from seeing that the only way I am going to be able to detect a 1/2 to 1% improvement each month is by charting and tracking my symptoms.

Luckily this is just month two, so I can correct my oversight and choose to tackle this topic in February.

A Spoonful of Sugar

But before I dive into a pile of forms and papers, it's time to address my internal reluctance to wholly embrace this practice. After all, we can all agree that not wanting to do something makes it much harder to get that something done, even when we recognize it ultimately benefits us.

Time to cue Mary Poppins and let her remind us that, "A spoonful of sugar helps the medicine go down."

Lucky for you, I have two spoonfuls of sugar to share.

1) See the Benefits

I think my friend Felicia Fibro makes this point for me brilliantly. In her post Fibro Feelings - Sunny Day, she talks about a recent bout of insomnia. She recognized that it was something new and different in her routine. Initially she couldn't quite figure out what was causing it, but then she looked at her symptom logs and discovered that she had experienced insomnia at the same time last year. With this new clue, she was able to recognize that anticipation of the annual party she and her Helpful Hubby throw at the beginning of February was causing her insomnia.

Armed with this knowledge, she decided to start planning earlier, writing down list of things to be done and then using a calendar to plan out the timing. With everything out of her head and on paper, she hoped knowing that everything was being taken care of would help her relax more and sleep better.

Felicia is a great example of a fibromyalgia scientist. In a practical application of the scientific method, she identified a problem, made some observations, analyzed her data and arrived at a conclusion that helped her improve her symptoms.

2) Reap the Rewards

O.K., so maybe calling yourself a scientist (or detective, or researcher) isn't going to motivate you or make this any easier...

So what will motivate you to do this? How about about some chocolate? Or some "me" time doing something you love but hardly ever do? How about promising yourself you'll set aside time to have fun every single day?

There is a reason that everyone from psychologists and teachers to animal trainers and parents swear by this; good old-fashioned positive reinforcement is a powerful tool to get you moving in the direction of doing something you would much rather not be doing. The bottom line is that treats motivate everyone. But here is a little secret: you need to break out the really good treats to get yourself to do the really unappealing things.

Focus on the Treats

So this week I am going to spend my time coming up with a list of rewards that will motivate me to start keeping a symptom log once again. I'm not going to even think about the logs themselves, I'm just going to dream about the treats. Well, that and I am going to tap into my inner Dana Scully and embrace how cool it is to solve mysteries using science.

Until next week, why don't you sing along with me:

A Spoonful of Sugar
Written by:
Richard M. Sherman and Robert B. Sherman

[Spoken]

In ev'ry job that must be done,
There is an element of fun.
You find the fun and snap!
The job's a game...

[Sung]

And ev'ry task you undertake
Becomes a piece of cake
A lark! A spree! It's very clear to see that...

A Spoonful of sugar helps the medicine go down.

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Video: Getting into the Energy Envelope to Prevent Flare-ups

Fibromyalgia Flare-up? Here's What To Do...

Ever watch a movie or TV show where the crew of a ship detects an enemy? What does the captain do next? Why, the captain orders the crew into battle stations and sounds a red alert.

Well, at the first sign of a flare-up, I go into my own red alert mode.

For me, that means doing things like:

• canceling trips outside the home for appointments, engagements and events
• cutting back on all physical activities--chores, driving, shopping, arts & crafts
• scheduling lots and lots of extra rest and sleep
• pulling out medications and self-care items to combat increased symptoms: pain medications and patches, muscle rubs, ice packs, heating pads
• delegating tasks and asking for extra help from my support system
• increasing the use of pleasant distractions, like music, movies and TV shows
• engaging in a lot of soothing and encouraging self-talk, i.e. 'You can get through this.' 'With some extra rest, you will be O.K.' 'Just take this one day at a time...'

How long I need to do these things depends of course on how intense and severe my flare-up is. Early on, my flare-ups from overdoing things were pretty epic, requiring a few weeks to overcome. My absolute worse flare-up, after my failed attempt at Hepatitis C treatment back in 2007, took about 3 months of post-flare recovery time.

I developed my personal flare-up response plan over time. It became a real priority after I learned the hard way that ignoring a flare-up and continuing to push myself had big, bad consequences--like a 7 day migraine headache that required a trip to the Emergency Room. (By the way, like knee pain, migraines are a symptom I only get when I am flared up.)

To put things into perspective, having a flare-up plan isn't just another burden and bother of living with fibromyalgia. I've come to see it as an important self-management tool, one that people living with other chronic illnesses use too. For example, people with diabetes develop a sick day plan to deal with the high blood sugar that comes with having a cold, flu or stomach bug.

Getting a heads up when I am heading into a flare-up is one of the benefits I found to tracking my symptoms and their severity. So now, if I see that my symptoms are getting worse, I can cut back and rest up right away. I've discovered that an early response to a flare-up 1) prevents the flare-up from getting worse and 2) help me recover and get back to my "normal" chronically ill self sooner.

In addition to taking steps to recover and calm my body down, I also take some time to figure out the cause behind my flare up. I do this to learn what factors contribute to my flares, some of which I shared with you yesterday in the section So what causes flare-ups? My goal is to learn what factors are under my control and then take steps to prevent these things from flaring me up again.

This is not always as easy as it sounds, both in finding the culprits and figuring out how to combat them.

For example, I recently flared-up and found myself scratching my head. I know I hadn't overdone it and the weather wasn't the culprit. Turns out, a few days later I came down with a cold. It seems the cold virus started a flare-up several days before cold symptoms appeared.

I can't always prevent myself from getting sick, so this is one flare-up culprit I need to accept as being out of my control.

Tomorrow I am going to talk about how I learned to stop the push/crash flare-up cycle and move towards living life inside my energy envelope. Plus I want to share with you my current goal of finding to the "sweet spot," my term for living well with chronic illness while also storing energy for healing.

The 411 on Fibromyalgia Flare-ups

I use a lot of chronic illness terminology here on my blog. I also try to take the time to explain what it means. Today I want to talk about flare-ups: what they are, how to tell if you are having one and what causes them.

What is a flare-up?
Our friends over at Merriam-Webster.com define a flare-up as:

: a sudden outburst of or increase in the symptoms of a disease or condition

How do I know when I am having a flare-up?

It's easy to assume that more intense and troubling symptoms means that you are having a flare-up. I found that tracking my chronic illness symptoms over time helps me decide if I am having a flare-up of my fibromyalgia or if something new and different is happening.

You can do the same using a symptom log form like the one I found at the CFIDS & FM Self Help website.
Knowing my symptoms helps me decide if I need to see my doctor when I seem to be having a flare-up. (Plus if I have recently injured myself, like when my shower bench broke underneath me, I get checked out because my doctor knows that my chronic pain can mask new problems.)

For example, knee pain wasn't one of my regular fibromyalgia and chronic pain symptoms. So the first time I had intense, sleep-disrupting knee pain, I went to the doctor for a work-up. When the doctor couldn't find anything wrong with my knees that would explain my intense, new pain, we determined it was part of a fibromyalgia flare-up.

So what causes flare-ups?

Just like your symptoms, the causes of your flare-ups can be very specific to you and your condition(s.) Here is a list of some things that cause me to get flared up, which I am sharing to help you get started in thinking about what contributes to your flare-ups:

1. Overdoing or overextending myself physically, mentally and/or emotionally.
2. Lack of sleep or changes in sleep pattern.
3. Prolonged time in one body position, i.e. sitting in a movie theater or driving in the car.
4. Viral and bacterial infections, i.e. getting a cold or flu or worsening of my other health conditions.
5. Changes in my medications and/or over-the-counter remedies, herbs and supplements. (This might be something as small as a change from one medication manufacturer to another.)
6. Over stimulation of any sense: taste, touch, sound, sight and smell.
7. Seasonal variations in the weather.
8. Mental and emotional stressors like lack of support, anxiety about finances and relationship discord.
9. Hormonal changes associate with my monthly cycle, like peri-menopause and menopause symptoms. (This does apply to men as well.)
10. Sensitivities or allergies to certain foods or hygiene products I use, like soap, make-up, laundry detergent, etc. (Note that new sensitivities and allergies can develop.)

The key I have discovered to uncovering my flare-up triggers is observing, tracking and recording the relationship between symptoms and things like sleep, rest, activities and events by using an activity log.

I know it seems like a lot of work to figure out your symptoms and flare-ups triggers, but tomorrow I am going to discuss the payoffs for fibromyalgia scientists who take this approach to managing their fibromyalgia (and other chronic illnesses.)

Bits and Pieces: New Discoveries

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So here are some of the things I've been reading and contemplating amidst my efforts to keep my Christmas preparations on track.

Coffee for Hepatitis C?

Here is a good reason to keep visiting my local Starbucks or Coffee Bean and Tea Leaf on a regular basis. Research published in the November 2010 issue of the journal Hepatology shows that regular coffee drinking, equivalent to 3 cups a day, results in slower disease progression in person who has Hepatitis C related fibrosis or cirrhosis. Of particular interest to me, drinking coffee seems to prevent the development of hepatocellular carcinoma, a.k.a. liver cancer.

I've written before how having both Hepatitis C and Type 2 diabetes puts me at increased risk for developing liver cancer and how concerned I am about this. While it seems that one large cup of coffee is my limit for caffeine for the day, this research has convinced me that cutting back on my coffee intake is probably not a wise choice for me.

Tracking My Fibromyalgia Symptoms

My friend the Fibrochondriac is looking for a hi-tech way to track her daily fibromyalgia symptoms. I remembered that I was doing this online for awhile, but then realized that I was doing this as a participant in the Fibromyalgia Wellness Project research project, which stopped collecting data in September 2010.

So I embarked on a search for either an online program or a smartphone app to do this. Unfortunately, I didn't find exactly what I was looking for. I got close with the online fibromyalgia, dysautonomia and pain trackers at MedHelp.org and the Illness Tracker app for Blackberry or iPhone.

None of these are quite what I had in mind, but I did uncover a promising lead after contacting the good folks over at WellApps. They already have a fab app for tracking GI symptoms (take note those with IBS) on Andriod, Blackberry and iPhone and have plans to create an app for fibromyalgia in 2011. They promised to keep me in the loop and I promise to share new developments with you here at OMA&P!

This concludes another edition of Bits and Pieces. I'm off to bake some homemade sugar-free gingersnaps which I am using as the crust for a no-bake ginger pumpkin pie. I hope all your holiday preparation are coming along well too and you've set aside some time to both rest and enjoy the season.

You're Not Nice, Mother Nature

Image by Rockin Robin via Flickr
Wow, it's hot in Los Angeles. It's more like Summer in Las Vegas than Fall in Southern California right now. Someone replaced the weather thermostat with an oven knob and then set it to bake...

Which got me thinking about that old '70's commercial for Chiffon Margarine. You know, the one where Mother Nature says, "It's not nice to fool Mother Nature!" punctuated with the sound of a lightening bolt. You can check it out below:



Well you know, Mother Nature, it goes both ways.

It's really not nice to fool with those of us who have chronic illnesses. We do our darnedest trying to manage our symptoms, day in and day out. Then you come along with your high and low pressure systems, your rain, your fog, your hot and cold spells and throw a monkey wrench into our best laid plans. Thanks a lot, Mother Nature.

So here I am, stuck indoors with the air conditioning blasting because I absolutely can't tolerate the 102 degree temperature outside my door. And it's the high pressure system causing the heat and/or the air conditioning that is making my fibromyalgia pain much, much worse. Plus my menopausal hot flashes are in full swing, so I've got my own little heat waves popping up throughout the day too.

As if to add insult to injury, with heat comes power outages from increased usage. Let me tell you, a power outage is my biggest concern right now. Because if the power goes out, I'm going to have to convince them to let me into the cooling center at the senior citizen center. Do you think I should bring my Social Security Disability award letter to convince them to let me in???

Yes, I admit defeat. I cannot control the weather. It frustrates me to no end that weather changes can flare up my fibromyalgia symptoms, but all I can do is grin and try to bear it.

You're not nice, Mother Nature.

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Want an emWave®? NOW is the Time to Save...Big!

Image by SuperFantastic via Flickr

Let me start by saying that I chose the product advertisements I display on my blog very carefully and strive to only include products and services that I use myself. One of these items is the emWave® Personal Stress Reliever which was doctor recommended to help me manage my dysautonomia symptoms.

I endorse the emWave because:

1. It gives you feedback you can see and hear while you use the device, so you know if you are doing the exercise correctly.
2. Unlike a heart rate monitor, the emWave is based on the science of coherence, which goes beyond heart rate to measure heart rhythm: the time interval between heart beats.
3. Using the emWave helps you program your heart and nervous system to work harmoniously together for additive calming effects.
4. The benefits of the emWave have been scientifically studied and the results published in scholarly journals like Stress Medicine, American Journal of Cardiology, Preventive Cardiology, Journal of the American College of Cardiology, Integrative Physiological and Behavioral Science and Harvard Business Review.
5. Some of the benefits I have achieved using the emWave include increased ability to tolerate dysautonomia symptoms, stress reduction, enhanced emotional balance and a way to combat fibro-fog and cognitive symptoms.
   

I have a lot of confidence and trust in HeartMath, the company that sells the emWave, for the following reasons:

1. They offer a 30-day no risk guarantee.
2. They provide multiple resources to help you learn how to use your emWave, including online e-training, a weekly one hour telephone class and online forums. All this free training is in addition to the manual and Coherence Coach CD included in the packaging.
   
3. Anyone can subscribe to emWave Information List that provides periodic updates on using the emWave as well as tips, stories and much more (like free e-book downloads.)
   
4. Through the non-profit Institute of HeartMath, the company gives emWave devices to soldiers fighting in Afghanistan and Iraq to help them manage the intense stresses of active duty. This program helps combat post-traumatic stress disorder and other mental, emotional and physical suffering our troops endure as the result of their deployment in combat zones.
   

Right now, while the emWave is on sale, you absolutely cannot beat the price. Regularly selling for $199.00, FOR ONE WEEK ONLY the emWave is $119.40. That is an amazing 40% off.

But don't just take my word for it. As a writer, life coach and person living with fibromyalgia, Martha Beck endorses the use of the emWave as well:

"I'm fanatically interested in new technologies that apply what scientists are learning about the brain. One of my very favorites is a device from HeartMath, called an "emWave." It gives me feedback about the electromagnetic resonance coming from my heart and brain -- and while costing less than $200, does the job better than a "brain mapping" procedure for which I gladly paid $10,000. I use my emWave every day, and believe it's helping me become permanently calmer and more relaxed. I've been giving emWaves to all my friend, life coaches, and clients."

~Martha Beck is a life-coach, New York Times best selling author, columnist for O, the Oprah Magazine and featured on the website Know Fibro

Like Martha, I was extremely pleased with my purchase of the emWave at full price. So you'll be even happier when you get it for 40%. Using the link below to order your own emWave and support Oh My Aches and Pains! with your purchase.

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