Finding support on Facebook

A good support network is key to facing the many challenges that can come with fibromyalgia and chronic pain. Our friends and family help, but it is always nice to talk to people who know exactly what you are going through.

Today, just about everyone is on Facebook, a social networking site. Organizations now have a presence on Facebook were you can communicate directly not only the organization, but with others who are going through the same challenges you face daily.

Many people use Facebook over Google as an online search tool. Even in the past year alone, Facebook has closed the gap on user search preference. (via Mashable 1/20/2011) So why not use Facebook for your health support as well?

Connect with the following Facebook pages online for more support:
Foods For Fibromyalgia

Deirdre Rawlings manages this Facebook group. Follow it to receive updates on how your diet impacts your health.

Lumigrate: Fibromyalgia on Facebook

This is Lumigrate’s Facebook bulletin board to remind people of everything that is happening on their website.


National Fibromyalgia Association

When you follow the NFA’s Facebook fan page, you can connect with other fibro patients and supporters. The site posts everything pertaining to educating, empowering and encouraging the fibromyalgia community.

These are just a few examples of the social communities on that I follow on Facebook.
What Facebook groups or pages do you follow? Please let us know by sharing your comments!
Thanks!-Amy

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.

When life gives you lemons, make lemonade!

I love to be in the heart of the action. I love the rush, the thrill, the feeling of your heart beating out of your chest as you are about to reach your goal. With my Fibro, I now have to watch on the sidelines. I can’t run at the head of the pack, for when I do, my body only stays there until it gives out, and I end up paying for my over exertion. You pay to play. And, my Fibro makes me pay a lot. It’s taken me years to figure out the checks and balance system of this syndrome, and I am still redoing equation as I go.

That’s the most confusing thing about Fibromyalgia, how to balance your life with your disease. Because they are not the same yet they do affect one another. As soon as you figure one thing out, another changes on you.
For comparison, let’s take a healthy individual in their early 30s; we’ll call her Jane. She eats right, exercises, and gets plenty of sleep, just like me. On the outside we look the same, except I have the added bonus of living life with Fibromyalgia. Which in simple terms means that I am always in pain. I have to continually work on gaining control of my body. Jane and I might look the same on the outside, but we are worlds apart on the inside.

If Jane slips on her diet, she might gain a few pounds. No doubt the same thing will happen to me if I ride the same slippery slope; however, my diet diversions come with extra perks, which are not polite to speak about in public. If I followed the rules and was a good girl, I would be eating a very restricted diet, saying goodbye to some of my favorite vices like sugar and caffeine. In fact, most fibromites avoid many of the delectable delicacies that life has to offer, sticking to an alcohol, sugar, and gluten free diet. Life is too short. I take what I can get in small doses. I don’t know how I would eat gumbo without cornbread. It just wouldn’t be civil.

When Jane falls behind on her excise program, she might lose a little of her muscle tone, or her jeans might be a lil’ tighter. It takes her a few days to get back in line. If I fall behind, I feel it everywhere, not just in my jeans. My joints hurt, my bones ache, and it takes every ounce of effort I have just to get out of bed. To make it worse, my bowels get out of whack, and I have trouble sleeping. The longer I leave my dancing shoes off, the harder it is to put them back on; nonetheless, all the more reason I should.

I try to get a full 6-8 hours of sleep every night. Yet when I wake up in the morning, I might as well just have taken a two-hour nap. With Fibromyalgia, your body never goes into full REM sleep mode. Your muscles might continually twitch throughout the night, leaving you tired and sore in the morning. ‘Jane’ can go out with her girl friends dancing all night, get three hours of sleep, and then, maybe she might just feel the same way I do on a normal Monday morning.

Having said all that, this is not a tale of woe. This is not an explanation of how ‘Jane’s’ life is easier than mine.
This is a story of triumph over obstacles. Remember my checks and balance system?
Check one, a normal gal, ‘Jane’ can eat a normal diet.
Check two, ‘Jane’s’ exercise program is easy to develop and maintain, compared to a person diagnosed with Fibro. Check three, ‘Jane’ can maintain REM sleep patterns in order to feel rested after a full night of sleep.

But how does the balance side of the equation come into play? My negative checks far out way the positive side of the calculation. Sure on the outside ‘Jane’ and I look alike. Two healthy looking young women, who eat well, get 6-8 hours of sleep, and exercise regularly. But why with all my constant pain am I better off than her? That’s right, read it again! I said with all my constant pain, I am better off than her.

I have learned to look at life with a different set of eyes. I think the saying goes, “when life gives you lemons, you make lemonade.” Yes, I am tired all the time. Yes, I hurt all the time. Yes, I don’t get to eat or drink just anything that I want in the world. And yes, my exercise program is not easy to keep up or forgiving. But with all these issues, I have learned to accept them, work around them, and dare I say it, almost enjoy them.

My value system now is keenly different than what it was before I was diagnosed with FM. I find that the littlest things do not bug me anymore, except when my pain is at its worst. You see, there are few days where I feel close to 100% well; days where my body does not hurt, my muscles do not ache, my mind is clear, my bones are strong, and my bowels are fully functioning. Of course those days are few and far between. Actually, I think I can count on one hand how many perfect, pain free days I have had in the past year alone. And on those days, those precious days, that is when I am truly alive.

Now, you must be wondering how do I make my lemonade from such sour lemons? Finding beauty in the smallest things is key. I love hearing live music, but the loud thumping bass and large crowds make my nerves stand on edge. That kind of made rock concerts out of the question. And mosh pits at a punk show, yeah right, ain’t gonna happen! So, my musical lovin’ brain and my body had a little heart to heart chat. Now at the performances I attend, I will either sit down, or stand in the back away from the bass and the crowds. If I really need to get my angry punk self on, I blare it from my truck in rush hour traffic! There’s nothing better to calm my nerves than Fumanchu singing King of The Road on the 101 at 8am! Over the past five years, I have discovered a new love for 20th century composers as well. I thought Beethoven had fire in his arsenal, then I heard Shostakovich, and my mind was blown away.

Before FM, I used go out at night to dance clubs. I was really never a drinker. My friends would go out to drink, and I would dance. I would like to feel the music through my body. Dance gave me that, and for a while Fibromyalia took that away. It was not until I found opera, ballet, and jazz, did I find that just seeing other forms of musical performance could help me feel the music without hurting.
Opera fills your entire body with emotion. The scenery fills your eyes with visions unlike your daily world. The sounds are so emotional that they help me escape the pain I feel. The opera itself transforms you into another world.
I loved all of these forms of art before my illness; now, I love them even more.

Thomas Moore said it best, “To the soul, there is hardly anything more healing than friendship.” My friends and family are now more important to me than ever before. They help keep me sane in the darkest hours. And they are there to help celebrate the best of times! Without them, I would not make it through many of life’s challenges. I don’t know if it being older, wiser, or the plain fact that with FM, I just don’t have time to mess around with any bull or drama, I now am very picky with my quality of friends. I might have fewer friends in numbers than I did before I was diagnosed with FM, but what I lack in quantity, they make up in quality!

And even when my life seems to have too many sour lemons to make any lemonade, I find sweet pleasures everywhere I turn. It doesn’t always have to be perfect to make me smile. The weather might be gloomy outside. I might be flipping a coin to try and decide to take 2 or 4mg of pain medication. My heating pad might as well of been unplugged for all the help it is giving my lower back. And yet, there is still something to smile about, if you know how where to look for the simple pleasures in life!

My simple pleasures: morning light on a dew drop, star lit nights, the smell of fresh rain, a nice cup of tea, a good book next to a fire on a cold night, my soft pillow, my bike on a twisty road, mixing yogurt w/fruit on the bottom, sharing good food with a friends, watching kids marvel at the fish feeding at the Cal Academy of Science, Tosca’s aria during Act II, and my list goes on…

What are some of your simple pleasures?

thanks to Sally W. Pruden for her beautiful lemon picture
See The National Pain Foundation’s Triumph of the Spirit Awards

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.

Dancing away your pain!

Get your grove on and dance your pain away!

Ever imagined yourself belly dancing your pains away? Shaking your hips, flowing with the rhythm and to the beat of the drums, letting yourself dance the pain away!

Well, a recent research study done at the Federal University of São Paulo proves that by simply keeping active, you can improve your quality of life. They wanted to show that belly dancing could be an effective treatment for pain in fibromyalgia patients.

The entire study consisted of 80 females, ½ of which was a control group, ages 18-65. To qualify, all the participants’ course of treatment should of not changed in three years preceding the study.

All the dance students “ took one-hour belly dance classes twice a week for 16 weeks… Each class had a maximum of eight students. The classes were administered by a physiotherapist with eight years of experience in belly dance. Classes began with a warm-up exercise, followed by the predetermined movements for the day, choreography and a cool-down exercise. The participants received a compact disc with music and an exercise book with the history and movements proposed for the program. Beginning in the fourth week, a set sequence of movements in the form of choreography was established for memorization and training at home.” (via)

In order to measure the outcome of the dance program, all the dancers where asked how they felt at three different times during the program. They were questioned before they started, again at 16 weeks, and lastly at 32 weeks. The number of questions the dancers were asked gave the researchers an in depth view on the outcome of the study. Everything was examined in order to have a complete patient profile including; pain levels, physical functionality (aka the 6 minute walk test), and quality of life questionnaires. Some of the quality of life questionnaires included but not limited to the Fibromyalgia Impact Questionnaire, pain, functionality, vitality, mental and emotional states, social aspects, and self-image.

Now, not to bore you with all the facts and figures of all the results, here’s the jest of the study: GET MOVING! No, really folks, seriously the “control group” of dancers slowly progressed on all the quality of life tests. Having said that, an interesting thing happened with the fibromyalgia group of dancers; at the 16-week mark, on most of their testing perimeters, their functionality scales became slightly worse than from were they started. But, not giving up does pay off! By the end of the 32-week course, the functionality scales perimeters went dramatically up for the dancers with fibromyalgia.

What does this all mean? Remember when your Mom would tell you it’s going to get worse before it gets better? That statement is true for when you add an exercise program into your life. Remember to take little steps toward finding a path that is healthy for you. Don’t try to go do an all night dance-a-thon on your first week, but try walking for ten minutes in the morning. Just remember, don’t give up. Keep your body moving. Keep stretching and keep a positive outlook on life.

In my never ending search for more information, I found this great website/ blog on dancing for pain relief! Check it out here-> http://dancingwithpain.com
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For more information on the clinical trial please see-> Effectiveness of Dance on Patients With Fibromyalgia

All backed up; opioid induced constipation

274783-main_FullConstipation is often a side effect of opioid use. It seems like you can never win. You take one medication to get rid of your pain, and then another one to get rid off all the side effects. It is estimated that out of all the patients who taken opiates for chronic pain, 40-90% will develop constipation. ( Via) There are many medications that your doctor can prescribe to you. Just like all medication regimens, finding the perfect cocktail is always a challenge.
Of course, when it comes to your bowel, this challenge is not always a fun one.

Besides what your doctor tells you, there are many things you can do to help yourself.
Diet and overall lifestyle changes will have a big impact on your GI system.
Try to make sure you:

• Increase the amount of fluid you drink per day.

• Eat more fiber. If this is difficult try adding a fiber wafer to your morning meal. Remember fiber doesn’t always mean oatmeal and whole grains. Fresh vegetables and fruits are wonderful sources of fiber, especially pears, apples, bananas, raspberries, and oranges!

• Get moving! Increase your exercise and daily activity.

• Allow time for privacy on the toilet. Also, stock you bathroom with good things to read. After all, if you are going to be in there awhile, might as well read a trashy novel or two!

If your stomach hurts from being bloated, try taking a hot bath, or using a hot water bottle. I move the hot water bottle from my stomach to my lower back from time to time.

Another trick to get things moving is to gently massage your stomach in small circles in a clockwise rotation. Start below your ribcage and work your way around. You will not need to use much pressure. This massage helps to get your intestines moving. It feels best for me after I take a hot bath when my body is a little more relaxed.

Herbs:
Just like western medications, there are many herbs that can help or hurt your medical situation. And should be taken only under the advisement of a medical professional. Some western medications can be affected by relatively what seem to be harmless eastern herbal remedies.

New advances in medicine are happening daily! There are now medications made specifically for people affected with opioid induced constipation (OIC). If you have been taking opioids for a while because of your chronic pain, one of these two medications just might help.

Methylnaltrexone (available as Relistor(R)) helps restore bowel function in patients.” It is delivered via subcutaneous injection and specifically targets opioid-induced constipation. When given alongside opioid therapy, it is designed to displace the opioid from binding to peripheral receptors in the gut, decreasing the opioid’s constipating effects and inducing laxation. Methylnaltrexone blocks peripheral opioid receptors in the gut and unlike other opioid antagonists has restricted ability to cross the blood-brain barrier. As a result, it antagonizes only the peripherally located opioid receptors in the GI tract, so it’s action reverses opioid-induced constipation without precipitating withdrawal symptoms or affecting or reversing the central analgesic effects of opioids .” (Via)

Another medication, brand name Targinact, combines the extended released opioid Oxycodone with extended release Naloxone to help the GI tract. This combination is a wonder duo! Naloxone is most commonly used to counter the effects of opioid overdose. Naloxone is an opioid receptor competitive antagonist. (Not to be confused with Naltrexone, which is an opioid receptor antagonist with qualitatively different effects, used for dependence treatment. Low-dose Naltrexone is in pain study trails at Stanford right now. Read my posting about the study.) By being an opioid receptor competitive antagonist, “Naloxone provides an inability for the opioid receptor to have an effect on the gut, counteracting opioid-induced constipation – without impacting on the centrally acting analgesic efficacy of oxycodone.” (Via) It binds to the receptor so that it does not bind to your gut.
Science just keeps improving!
opioid4

A major drug deal was signed this week between AstraZeneca and Nektar Therapeutics for the continued development of NKTR-118 and NKTR-119 programs. Both of these studies are something to watch out for in the near future. NKTR-118 is drug still in its testing phrase “that combines Nektar’s advanced small-molecule polymer conjugate technology platform with naloxol, a derivative of the opioid-antagonist drug naloxone.” (Via) NKTR-119 combines the drug from NKTR-118 and determines what opioid combination will work best with it to help eliminate constipation associated with opioid usage.

AstraZeneca and Nektar are both major players in the pharmaceutical market. It will be exciting to see what this new partnership will bring to the table!

Until then, make sure you eat right, drink plenty of water, and consult your doctor if you have any questions about what you can do for your GI system.

For further reading check out:

What’s the Best Source of Fiber: The Diet Channel

Scientific America

Medscape

University of Maryland Medical Center

Cooley Team

Also take the time and read this great blog about how you can take care of your intestines on Lumigrate.

Building a Support Network for Fibromyalgia

helping-handsIf you are dealing with a long-term illness, you have seen MANY doctors over the years. After a while, that number narrows down to become a focused team of health care professionals. Your team might consist of the following; a general physician, a pain management specialist, a neurologist, an endocrinologist, an acupuncturist, a massage therapist, a physiologist, a physical therapist, and the list of “specialists ” could go on and on. Each of us builds our medical support team differently based upon our needs.

Using this same model of a support system, I have a team of friends to help me out. A support team of friends can help you through your toughest challenges. Just like with a medical support team, everyone’s support team is different, they can help you when you do not know how to help yourself. However, a friend support team’s roles are never set in stone. Friends can help you with a bit of laughter, when you need someone to hold your hand during medical procedures, when you need encouragement, when you need a shoulder to cry on, when you need someone to bounce ideas off-of, or just when you want companionship during a “flare-up”. An organized support team becomes an essential tool to help you stay positive, healthy, and on top of your pain.

Developing and managing a strong support system is not an easy task. There are many issues that come up which make it difficult for your friends, and even your family members to be part of your support system. There is a huge challenge of keeping everyone informed about your ever-changing health condition. This challenge is well worth it though, because the friend support system comes in handy when you need it the most!

Honesty between you and your supporters is a priority. You need to be able to tell your friends what you need from them. And in turn, they need to be able to say what they can and cannot do for you. The best advice I was ever given was never be afraid to say, “No, you can’t do something”, especially to a friend. Make a pact with your supporters that they will never agree to do something unless they really want to so it for you. They should never feel burdened by you, and you the same by them. That way when you call asking for help, you know they are truly helping you because they want to, not out of pity. It seems strange to ask this of you dearest friends. But, by making this pact, it seems to help rebuild your self-esteem, especially after that sixth late night “help” call.

There are a number of ways to establish your own support team. I name mine based on what function or situation I need from that friend. I write down in my journal the following functions and next to each, I write a couple of friends’ names. I write down a few names next to each function to insure I always have someone to call if I need them, and I never exhaust my resources.

Nurse Betty: a friend to hold your hand while they take yet another sample of blood

Pal MD: a friend to call to discuss health care choices

Iron man: physical help needed, remember not to over exert yourself

Class Clown: a good chuckle cures all ails!

Let it all hang out: vent or whine about this and that, call when things are tough

Gossip Gal: a pal to chat with when you just need a friend

This side up: Flare-up = level 10+, I call this friend when my pain gets so bad I do not know how or what to make it better.

Smell the roses: You have become a hermit. Cobwebs have grown around your front door. Call this friend and get out and about.

Positive reinforcement: Life is great! You are wonderful! Call this friend and everything will be better!

Look at the friend support team like a grocery list. I tend to have about 3-5 people at a time on my support team. Each friend’s (and/or family’s) role can change over time. Some friends hold multiple roles; others drift in or out of your support team. And some of your friends might not be able to be part of your support system, which is also perfectly ok.

Think about building your support team when you are not overly tired or in pain. Make notes on what qualities your friends have that help you out the most. For example, my mother is the person I call to “Let it all hang out”. Because she also has Fibromyalgia, I can vent to her about ongoing medical bills and medication conflicts.

How to keep a strong support team:

Just has we become exhausted of dealing with our illness; our friends also become tired of hearing about it. Learn to rotate your support team. Do not vent to the same friend all the time! There is more to life than blood tests and trigger point injections.

Rotate who you call each pain flare-up. If you call the same person each pain flare-up, eventually, that person will become exhausted of the flare-ups just as much as you.

Look outside your own circle of friends for venting or medical advice. There are plenty of online help groups where many patients are going through the same medical issues. Like face-to-face discussion; reach out and find a support group in your area. The National Fibromyalgia Association is a great resource to locate a group.

Educate your support team. Fibro- My –Al- gee-a what? Help others understand what you are going through by giving them resources to read at their own pace. Some people do not want to know everything, others have so many questions it is arduous. Here are some websites that help family and friends understand more about FM:
www.fmaware.org
Mayo Clinic

Keep them close:

marilyn_phonesRemember, you will need someone from your support team the most when you can think the least. Keep your support team’s contact information handy; put their contact information on speed dial, create a Facebook group, paint their Twitter accounts on your ceiling, whatever you need to do to help you find them the easiest way possible.

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!

Pain Week 2009

LasVegasOn September 9th -12th, 2009, Las Vegas is being taken over by people who bet on something other than just a game of cards or a roll of the dice; this group makes intelligent bets on the understanding of pain as a public health issue. During this upcoming week in September, groups of health care professionals gather to discuss and learn how they can understand, treat, and improve the lives of those of us who live in pain at the PAIN Week ‘09, “the national conference on pain for frontline practitioners.”

This conference, believe it or not, is the ONLY national forum that is around to handle all the educational needs of the professional health care community. Everyone from physicians, pharmacists, to psychologists, and nurses are in attendance to discuss the complexities surrounding a pain patient’s life.

I’m sure with everything in news today, they will have tons to talk about at the conference! From issues about health care reform to the FDA black box labeling of Acetaminophen (Tylenol), political issues will be bouncing off the walls. The soaring costs of prescription pain medications limits people from getting their pain fully treated, especially in this economy. Hey, just by the simple fact that over the past decade alone, outpatient spending on prescription painkillers more than tripled, rising from $13.2B in 2006 from $4.2 B in 1996, (via) makes me want to stash all my pain killers for a rainy day pain attack. Add that to the economy collapsing, and the FDA coming down harsher on painkillers, the pain management doctors and patients certainly have their work cut out for them with medications alone.

Besides political barriers, the educational forum’s aim is to determine effective treatment protocols among current and emerging therapies. Pain is just one of those things, like a hair cut, that is different for everyone; what might work great for one person, is horrible for another. I simply loathe the fact that when someone finds out that I have chronic pain, and then proceed to give me an hour lecture on how to “heal thyself”. Most of us who live with a chronic ailment, know what works for us and what does not. The learning comes into play when new therapies are developed. Hence, the reason behind PAIN Week, for health professionals, the ones treating those living in pain, to understand, discuss, and evaluate new ways to care for us.

For more information, please see PAIN Week’s site

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