Your journey

I forget that I have fibromyalgia. It is such a part of my daily life that it has become a part of me. But then, I meet people that remind me that times used to be different.

When I first became really sick, my illness was me. It consumed me. My fibro owned my life, and unfortunately it also owned the lives of the people who were closest to me. I could never gain a hold of my health or my life. Some of my friends left me as times got tough, and others just slowly vanished.

I digress; this is not a tale of woe, but one of triumph and success. In the last few months, I have watched one of my dearest friends face the same battle that I dealt with almost a decade ago.

We all know the story. You go to doctor appointment after doctor appointment, procedure after procedure, and surgery after surgery, just to have at least 1% of your pain relieved. You’ve even tried every single homeopathic “cure” out there. But, nothing worked. Nada. Zilch. Zero. Until one day, you discovered what works for your body. It’s like the angels parted the clouds, and you have a life again!

Now, I want you to take moment to stop and really think about the past.

What did you lose?

What did you gain?

Getting your health back is more than just that. You will see the world now in a different light. The wisdom and strength you have gained can never be taken away from you. As people around you rush forward with their lives, you appreciate yours even more. The life you live, the journey you have taken, and the path that you are now on is up to you– only you.

I’m proud of you Medea for never giving up the fight.

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Which came first the chicken or the egg?

Which came first?The age-old question of which came first the chicken or the egg baffles scientists and comedians alike, and especially chronic pain patients.

Similar to the auras that precede migraine headaches, the onset of many of my pain attacks begin with simple yet effective signs telling me to, “Batten down the hatches girl, a storm’s a brew’n”. Usually a few days before a major pain attack, my IBS (Irritable Bowel Syndrome) acts up, my appetite decreases, and my sleep becomes restless. And, just to make life interesting, my warning signs have gone from a simple physical symptoms to a complex list of disorganized and unpredictable physical, neurological, and emotional reactions.

Part of the course with Fibromyalgia is memory lapse and a other neurological aliments called Fibro Fog. For example, my favorite is always the game of “Where did I leave my keys? – Just to find them in the fridge!” Fibro fog has always been manageable for me, until lately when it has begun to impair my ability to fully do my job. Imagine always having that one word on the tip of your tongue, that one idea just outside of your reach, that one memory remotely within your view- that is what my life feels like before a pain attack with Fibro Fog. Add in my usual IBS, sleep and appetite issues, and my life is just peachy.

This change in my body’s behavior led me to schedule an appointment with my pain doctor. Here’s the kicker- we do not know exactly what is causing the neurological issues. It could be the stressors in my life, my FM condition itself, or my medication. Hence, what came first the chicken of the egg?

The medication that helps my neuropathic pain has a side effect that could be causing my neurological symptoms. To make matters worse, without this medication I could not function as a normal member of society because of my nerve pain. On a day without a pain attack looming, my medication is at the appropriate level. However, combine the medication levels with the chemical reactions my body goes through before an attack, and WHOA MAMA let the Fibro Fog games begin.

So now, what do I do? My doctor and I decided to play the waiting game while I document my reactions over the next month. If we change my meds, I could end up in more pain, end up with a different type of pain, or better yet, end up with a whole other set of side effects: either physical, emotional, or neurological. Sometimes not knowing if the issue is a symptom or a reaction is the hardest puzzle to solve. Hopefully, by going back to the basics of keeping a pain journal will resolve all of our questions. I guess until then I will have a bunch of frozen keys.

Other sites to read on Fibro Fog:

www.fmaware.org
www.health.com
www.fibrohaven.com

Chronic Pain: High Wire Act

In the early morning, as the dew is still wet on my window, I catch slight glimpses of what can only be images of my past life. I am on a high wire inside a big brightly colored red and yellow striped tent struggling to find my balance. Light-headed from the lack of oxygen, my arms fully stretched out, and the view of the dirt floor many feet below me, this early morning dream leads me to believe that even the slightest move will send me falling to my death. Each journey out across that tightrope should be easier; however, every walk is different, every crossing new, and each path comes with it’s own challenges.

Living with chronic pain is like walking that high wire. You must find your own balance to make it through your day. The Flying Wallendas had courage every time they journeyed across their high wire. Just like them, living with chronic pain is a performance art of unfathomable courage and skill. For when I hurt, I have to pick myself up and try all over again, never showing pain or fear. For just when you think your life is under control, something happens to throw you off. It always does. The audience gasps in amazement. You can hear them almost whisper in your ear, “You can do it, just one more step”. While others are just there to watch you fall. The question is who are you going to listen to as you make your journey across your own tightrope. Even without all the glitz and glamour inside that big red and yellow striped tent, we are walking that same high wire on a tight balance of survival.

Weathering the Storm


Have you ever driven through a town after a massive hurricane? The town looks worn down, beaten, but in a way stronger because it has made it through the storm, and will live to see another day. When you live with a chronic pain condition, your body feels just like that town, worn down and yet in a strange way it grows stronger.

Growing up in the south, you learn to listen to the weatherman during the same time every year and just prepare for stormy weather. Once and a while, the “big one” hits, and when it does, there is no doubt what must be done. Time to board up the windows; place sand bags where needed; bring the potted plants and garden furniture inside, and just batten down the hatches. There’s no use trying to hide.

Living with a chronic condition is like living in the storm belt of the south. Each condition has its own health hurricanes, as it may. After a while, you learn how to predict when they are coming, and how to prepare for them. The hardest part is learning to listening to your own body and taking the proper precautions before its too late.

Just like with any natural disaster preparation, when it comes to your health, making an escape route or a game plan can be your greatest ally. When a crisis hits or your pain is at its highest level, it is hard to think straight which can make it difficult for you to eliminate your pain or communicate to others what you need.

An easy way to make a pain relief strategy is to simply make a few lists of what types of pain you have, what makes that pain better, and then what makes that pain worse.

It sounds like a lot to do. But simply start brainstorming your lists together and it’s amazing what you will discover about yourself. Do the lists in whatever order feels best for your situation. Remember there are no right or wrong answers here. Just be honest with yourself.

List 1) Pain:
What types of pain do you have?
Write down whatever comes to mind. You can list physical and emotional issues here.

Examples: trouble sleeping, depression, all over body aches, headache, sharp right hand pain, dull lower back pain, constipation, etc.

List 2) Solution/ Therapy:
What helps you? What makes you feel better.
(I have done this list two different ways. I have simply jotted down things that help me out, and other times I match specific therapies to a type of physical or emotion pain.)

Examples: Heating pad, hot bath, medication, cold compress, stretching exercise, diet

List 3) Stressor/ Cause:
What makes things worse?
I find this list the most difficult to do. Take your time writing down things that you know make your pain worse. You might want to just keep a journal, and note how you feel each night before you go to bed. Write down in your journal any activities or changes in your routine that impacted your condition.

Examples: diet, sleep pattern, weather changes, money stressors (I notice that after talking to the health insurance companies my pain increases the next day), airplane travel, exercise (over or under doing it)

Now match up with your lists, pain with solution/therapy to stressor/ cause. When you are done you will have a chart that will help you listen to your own body. And when you can’t think because the pain is too high, all you have to do is look at your list.

Remember that this is just guide for you. It can be changed, altered, or simply thrown away and started all over again. Don’t be afraid to learn and grow. You have weathered the storm and you will be better for it.

Keep a Pain journal….on your iPhone?

For years now, I have kept a fibro/pain journal. I use the journal to help manage my overall health and pain. With an illness such as Fibromyalgia, it is very difficult to tell which event or series of events affected the way you feel. Am I having a pain attack because I only had 4 hours of sleep two nights ago or was it the ice cream I ate today or the stress of my job or….the list could go on. By keeping a journal, I am able to tell what factors make my pain worse, and what makes it better.

When I first started, I was very diligent about my entries. I marked everything down I ate, every pill I took, and every hour I managed to sleep. I wrote down what helped each type of pain my body went though daily. Over time, patterns began to show. For example, I learned that if I get less than 6 hours of sleep, my nerve pain located in my hands is worse the next day. The journal is also very helpful to bring to all my doctor appointments. I can tell them what is working, and what is not. Whenever I switch medications, I keep track of how my body is adjusting to the new regimen. It makes it easier to describe through the fibro-fog how I feel when it is written down in my journal.

But, just like any management routine, keeping a journal can be a painful chore itself. My frequency of journal entries is not like it used to be. I find that I write in it more on a monthly than a daily basis. Which, makes it very hard to tell why I hurt when I do and how to make it better. For example, do I hurt more today because I walked 2 miles on Sunday or is it that I only took one Alieve this morning. So when I purchased my new iPhone the other day, the very first thing I did was to look for apps that would help simplify my pain journal entries.

I first found an app called Zuri, from Zume Life. It looks great. And it tracks everything! zume.img_assist_customYou can try the first month for free. BUT,…..after that it is $35/month or $300/ year for the service. Your subscription covers you for the iPhone app and a log-in on their website. Even though Zuri, looks great, and has all the features I am looking for in a web 2.O based tool- $300/ year is just too much! So my search continued…..

I found another iPhone app called Pain Tracker. The best part is it’s free! paintracker-iphone-58445.185x185.1249536989.6297
And very simple. The program consists of three parts-
1) your level of pain on a four part scale,
2) where your pain is located, and
3) a place to put notes.
Then, it can chart your pain levels over a period of time for you. So, at your next doctor’s visit when they ask, how’s your pain been in the past 30days- you not only have an answer, but you have a chart to show them! paintracker-iphone-58445.320x480.1249536992.18585
To use Pain Tracker, you don’t have to log into any web site, and each entry is automatically dated and chronologically stored for you.

This app is very simple and quick to use. I have just started using it, but my hope is that in a few weeks I will be able to track a pattern in my pain levels. This will not only show how much pain I am in, but it might help explain why I am having pain attacks.

I will continue my search for tools to help manage chronic pain, iPhone apps or otherwise. Be sure to check back with this blog, I’ll update it to let everyone know how the Pain Tracker app is working for me.

Please fill free to comment if you have any tools that work to help you manage your pain. Thanks!

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