The Number One Question: What helps make you feel better?

In all my computer travels through blogs, Facebook and Twitter people ask, "What is it that makes you feel better?"  That's a complex and loaded question.  The mind/body connection is part of what makes that question so complex.  If we start with the mind, our perception of our world makes all the difference.  Obviously the more positive the perceptions the less pain people have.  In an effort to learn more strategies to maintain positive thoughts, I have subscribed to Live Happy publication.  This
publication is chock full of good positive thinking tips and stories about what others are doing to maintain happiness and positive thoughts.  Another think I have done is join a week long Webinar on Wake Up Happy.  Some of the top positive thinkers around the world have shared their insights and strategies for living a more fullfilled and happier life.  Tomorrow is the last day of the series for this month and it was well worth joining these Webinars with a hot cup of coffee!  For more information on the Live Happy publication go to livehappy.com.  You can also learn more about the Wake Up Happy Webinars by doing a search on the Live Happy Web site.  It will help change negative thinking if you apply the principles and strategies.

So much has been written about the pros and cons of analgesic use for chronic pain.  The decision to use analgesics is a personal decision that should be made following a dialogue between you and your doctor.  Some people prefer to use alternative medicine strategies, herbal preparations, gentle yoga, meditation, and others prefer to use pharmaceutical strategies or a combination of these.  Again, this is a personal decision and you know what works better for you.  I'm not going to go into any of these strategies since there is plenty of information and opinions available in blogs and on Web sites.

Getting enough sleep is critical to feeling better.  So many people with chronic illness have difficulty getting restorative sleep.  For those people with fibromyalgia sleep apnea is frequently part of the problem.  Make sure you get evaluated for sleep apnea; it can make all the difference in the world.  Another piece of the puzzle is Willis-Ekbom Disease previously know as Restless Legs Syndrome.  Even if the restlessness you feel is more controlled, this disease can still impair sleep.  Talk with your doctor about the strategies and medications that can help you get a restful night's sleep.

Having something purposeful to do with your time is another strategy that helps to keep your mind off the symptoms that are making you miserable.  A friend of mine makes jewelry to sell so she is able to pace herself and work on her craft as she is able.  She finds a great deal of gratification making her jewelry and when she is able to make jewelry she feels better.  I have gotten involved in a skincare company that allows me to name my own hours and do as much or as little work depending on how I'm feeling.  Both me and my girlfriend can work in our jammies and that's always a plus!  So find a hobby or a job that isn't too demanding and allows for a great deal of flexibility.

There is one strategy that exceeds the power for change in how you feel over all other strategies.  That's the simple act of sharing and caring about one another.  There is nothing worse than being alone with your chronic illness and not having anyone that understands and cares.  Since people that have fibromyalgia tend to be highly sensitive people and frequently have narcissistic and abusive family members, there is no shortage of feeling alone with a debilitating chronic illness.  So all the chronic illness blogs, the tweets on Twitter, the postings on facebook and other social media have the power to make you feel better just because you have someone that cares and expresses love and support.  It's so simple for us to care about one another and there is no one that understands that better than someone with a debilitating chronic illness.  The rest of the world doesn't understand the power of caring and probably take it for granted, and they may not have their priorities established.  When you realize how it feels to be alone with a debilitating chronic illness, it gives you a different perspective.  It is easier to identify authentic and substantive priorities.  In that way, we are very fortunate and it is so good to have you all with me.  Sending love to all of you and wanting you to know that I do understand.  Blessings.

Conquering the Pain

A zuni bear bracelet and matching earrings

Pain is quite a formidable foe.  It demands our constant attention, saps us of our energy, destroys our quality of life, turns us into grumpy people that no one wants to be around, and robs us of our life.  People with fibromyalgia have a daunting task to cope with pain that expresses itself as pins and needles, burning pain, sharp, shooting and stabbing pain, throbbing pain, body aches, dull aching pain, cramping pain, muscle pain, focal or global headache pain, pressure pain . . . have I described this accurately?  If you have fibromyalgia I'm sure you have additions to this list.  To sum it up it's total misery and fibromyalgia pain can prevent us from participating in activities that we enjoyed prior to the onset of this illness.  But never underestimate the power of the human mind.

Bead embroidery: a work in progress

The human mind has the capacity to overcome many obstacles regardless of how impossible those obstacles may seem.  The joy of learning is a key component for overcoming moderately severe or even severe pain.  This may sound too simple to be true, but it is.  People with fibromyalgia tend to be Type A personalities and that can actually work in our favor.  Challenges and learning something new exercises the brain and improves cognition to lessen the confusion, brain fog, and disorientation.  Learning when cognitive impairment is present requires a great deal of patience and determination, but as the brain engages in learning, cognition does improve.  Another component to overcoming fibromyalgia pain is fortitude.

My friend, Lori's, bead embroidery

A good friend of mine that has fibromyalgia and other chronic illness reminded me of how to overcome the pain and misery of fibromyalgia by introducing me to the world of beading.  I have found that beading gives me a creative outlet, provides me with social time each week with beading friends, and lessens my pain by engaging my brain with a new found passion.  I just love to look at all the beautiful beads and dream about what I can make with my beads.  The biggest problem with having a passion is having the sense to know when I need some rest.  Balancing activity with rest is the most important and beneficial tool that we can have in our fibromyalgia toolbox and it's a fine line between the two.  If we get too much rest we go downhill physically; if we get too much activity we go downhill physically.  It's quite a dilema and requires an astute balancing act, but with practice it becomes easier to know where that line is drawn. Balancing activity and rest is different for everyone and changes from day to day so no wonder this is a difficult task.

A set that I just finished this morning

If you want to lessen your pain and increase your activity, find your passion and balance your passion with other responsibilities and intentional rest periods.  You will feel better both physically and emotionally, you will increase your energy, and there will be more joy in your life.  Please send me comments about your passion and how that has helped you overcome the pain and other symptomatology related to fibromyalgia.  You may sleep better too!  Take good care and blessings to you as you face each day with fortitude, determination, and lots of patience
while you are discovering your passion!

Owee Kazowee . . . It's a pain!

Arizona sunset in my front yard

I read a number of blogs and a frequent theme is related to pain and pain management.  Why wouldn't it be?  Pain, whether it is acute or chronic, is always in your face every day no matter how much you try to ignore it.  Many of us use a combination of pain medications throughout the day and night in an attempt to manage our pain, but new findings have demonstrated that using these medications are actually counterproductive.  Long-term narcotic use actually magnifies any pain you may have anywhere in your body.  (Jaret, Peter.  2013, April, AARP Bulletin, Fighting Pain, pg. 10 - 12).  I suspected there was a rebound effect from pain medication use, because I experienced this first hand after using Vicodin for only a short period of time.  Prescription opioid pain medications are now the leading cause of drug overdose deaths in America.  Despite decades of research on how to manage acute and chronic pain there still are no easy answers.  Most pain management clinics are now weaning chronic pain patients off their opioid medications and replacing those medications with a variety of strategies to manage their daily pain.  I use my pain medications judiciously, but I am personally terrified of the thought that I would have no access to pain medication.  I've been there, done that and it didn't really work all that well.  Managing pain every day throughout the day and night is already a full time job.  I can't possibly spend the entire day meditating in an effort to control my pain.  That was the suggestion I received from a pain program I attended 20 years ago.  The reality is that opioid pain medication won't eliminate pain completely and so a number of strategies must be used to get through each day.  For me, balancing pain management strategies with sensible pain medication use currently seems to be the best approach.

A javelina at my bird feeder!

It's a mistake to take larger and larger doses of opioid pain medications so I stick with a regimen that provides enough relief to take the edge off my pain and I resist the temptation to increase my dose in an effort to get additional pain relief.  It just doesn't work and that's the bad news.  The good news is there are other strategies that give me relief throughout the day and using these strategies have become second nature so it doesn't feel as though I'm spending my whole day managing pain.  There are some days that are so bad -- I feel so sick, am plagued with exhaustion, and have so much pain that functioning is difficult.  Those are the days when I lay low and do nothing more than pamper myself and rest.  It's important to listen to our bodies, because they give us clues (some clues are louder than others!) about what they need, and to ignore that gets us into trouble.  I save Vicodin for bedtime, because it's critical to get enough sleep.  Depending on my activity during the day, Vicodin may not be effective, but I have other "tools" in my pain management toolbox.  I have found that distraction is the very best medicine and is far more effective than any pain medication I have used for my chronic and unpredictable pain.  Not moving is the kiss of death.  The hazards of immobility is something nurses learn in their very first class in nursing school, because to keep people moving is critical to everything that ails them.  When people cease to move, their body starts to deteriorate immediately on many levels.  It seems so opposite that we must get up and move when we feel sick, exhausted and in pain, but that's exactly what we must do.  I tend to reject the workout program thing.  Instead I incorporate exercise throughout my day.  The key is to do what you enjoy and brings you joy.  I enjoy going for short walks with my two cats and my dog.  They are all getting older and my dog has two congenital heart defects and taking Enalapril so they all move at my speed!  I also enjoy gardening so I have trimmed down the amount I have to do so it isn't overwhelming, but keeps me moving.  Caring for my cats and dog, and feeding the wild birds also keeps me moving and I have my daily routine to provide them with what they all need to thrive and that brings me joy.  When I stop moving I have a tendency to have more pain and I have to be careful not to overdo.  While I was checking out the bird feeder the other day I was surprised to find a 40 pound javelina grazing on bird seed.  Now that was a distractor from pain!  Ha!  Listening to music while I cook or during other activity distracts me from my pain.  I spend time with my kitties and dog . . . I'm sure that rubbing my hands in a fur ball lowers my blood pressure, diminishes my pain and is very therapeutic in a meditative sort of way!  And they love it too.  I socialize as much as I am able and I love to read; both great pain distractors.  It's all about focusing my senses on environmental stimuli that are able to override the pain I feel.  Night time is the biggest challenge and that's why I save Vicodin for bedtime.  At night everything is dark and when the lights go out there is very little sensory stimulation to override pain, so my complete attention is on painful stimuli.  When I am having difficulty sleeping I go out to the living room and turn on the TV.  I may also do some reading while I'm watching TV, which engages a number of my senses and helps to override the pain.  When I feel sleepy I lay down on the sofa and watch TV and then I am able to fall asleep.  So for those nights I need additional environmental stimuli to override my pain and other discomfort.  Sound machines in the bedroom serve the same type of distraction.

A javelina mug shot . . . Harvey the Javelina!

Another important piece of the pain relief puzzle for me is to maintain my sense of humor and not to give in to this monster that threatens to rob me of my life.  One element in my life that helps me to keep going is trying to keep up with Sid.  When I can't keep up with him I make concessions and alter my level of participation in an activity.  I maintain a mental attitude of wellness rather than sickness.  There's that old saying that when you pick an attitude make sure you pick a good one.  And your attitude determines your altitude. I make a point of getting out of the house every day and interact with the people around me.  I also joined the local garden club to give me some activity that gives some of my time structure.  I may not be able to do the heavier work, but I have skills that will benefit the club in a number of ways.

A javelina mug shot from the other side . . . bristled up and ready for a fight!

All of these strategies may seem so simple, but they do work to provide relief for at least a little while.  Pain relief efforts are just that:  effort.  It requires planning, work and lots of determination.  But that's a small task for a warrior!  All of us would love to be completely pain free, but that just isn't realistic.  The most important component of my pain relief program is being connected to all of you.  Being connected with others that are struggling every day to manage pain gives me a feeling of comraderie and I know I'm not alone.  It also gives me hope too.  Never, never give up hope.

Current research is working on a variety of ways to manage pain.  One approach is to block the pain signals from their source.  The experience of pain is a very personal experience and finding pain relief strategies is personal too.  We can give each other ideas with the strategies that we use, but each of us must define what works for us.  Some people have found pain relief from accupuncture, accupressure, tai chi, meditation and massage.  Whatever works for you, do it.  I'm sure there are some very creative ideas on how to manage pain!  Please share your thoughts with all of us . . .

Meanwhile, I think of you all every day and hope you are finding pain relief for even the briefest of moments and that you have hope and peace and joy in your life.  Blessings to you on this difficult journey!

Your pain experience is unique and personal

Pain is a poorly understood phenomenon.  Pain has been treated and studied for so long, and Western medicine has made extraordinary advances in so many areas,  but we still have only a fundamental understanding of pain's mechanism.  Pain is a complex mechanism that involves physiology, spirituality, emotions, and perceptions.  As in all health issues, it involves the mind/body connection.  When people are in pain it is a completely subjective and personal experience.  Pain makes people feel emotionally out of control, which increases anxiety levels and increases the intensity of the pain experience.  That is why lavendar aromatherapy decreases the perception of pain; lavendar is a calming herb.  When I was working with an Interventional Radiology Department I observed that women experienced more pain than men when a chemotherapy port was placed in the upper chest.  When I presented that information to the port placement team it was decided to give women a prescription for pain medication before they were discharged back home.  In my follow up calls women reported they didn't fill the analgesic prescription, they still had pain, but they tolerated that pain better because they knew they were in control and could opt to fill the analgesic prescription if they wished. I have also observed from my own experience that the more pain medication I use the more I seem to have a rebound increase in pain.  Therefore I use pain medication as judiciously as possible.  That rebound pain experience