A brief history of fibromyalgia and an even more brief rebuttal

It's so good to be back and writing in my blog again!  My adventures in Younique and Nerium have consumed so much of my time.  I am resigning from Nerium so I have more time to spend here with all of you.  The information below was taken from the ongoing debate called The Fibromyalgia Perplex.  This is a post that was written today by John Quinter, MD about the history of fibromyalgia and the struggle physicians have had to define this disease.  It can become a bit dry so if you are having difficulty continuing to read this "dissertation" you may find the comment by Fred Wolfe below this writing to be of interest.  This demonstrates the differing opinions that physicians and scientists debate in their struggle to understand and define this illusive disease called Fibromyalgia.  The one thing I know is that all of us struggling with this disease every day most definitively understand and experience the pain and and other symtomotology of this disease.  This is our reality.  Blessings to all of you!

THE TRANSMUTATION OF FIBROMYALGIA

Posted by John Quintner on 23 May 2015, 4:42 am

Fibromyalgia was officially recognised in 1990 when a Multicenter Criteria Committee of the American College of Rheumatology recommended the term be used as a means of classifying patients presenting with chronic widespread pain and tenderness [1].

Pain was considered to be “widespread” when it was experienced in all four quadrants of the body (i.e. on both the left and right sides and above and below the waist).

Tenderness was assessed over 18 specifically chosen tender points. When patients with widespread pain were judged by their clinician to be hypersensitive at 11 or more of these points, the diagnosis of Fibromyalgia could be applied.

Some 20 years later, the criteria for diagnosis were broadened by the introduction of a symptom severity scale score to replace the tender point count. Widespread pain remained a diagnostic criterion [2].

The clinical problem of “RSI” (repetitive strain injury)

In Australia the term “RSI” (repetitive strain injury) came to be broadly applied to all conditions characterised by neck and/or upper limb pain presenting in an occupational context.

“RSI” embraced localised conditions, such as carpal tunnel syndrome, dorsal wrist tenosynovitis, lateral epicondylitis and rotator cuff “tendonitis”, along with poorly understood conditions characterised by diffuse pain felt in the neck, pectoral girdle and arms, often accompanied by positive sensory symptoms, cramp, loss of muscle strength, and vasomotor abnormalities [3,4].

A vigorous medical debate had taken place during the 1980s over the categorization of the sub-group of patients with diffuse pain. On the one side were those who espoused the theory of muscle overuse injury, whilst on the other side were those who argued that those with these conditions were reflecting psychological distress that was manifest as somatic symptoms [5].

However, the homogeneity of presentation of these patients implied not only a common pathophysiology but also one that could be attributed to dysfunction of the nociceptive system itself, consistent with what was then the current definition of “neuropathic” pain. This explanatory model was proposed on the basis of careful clinical observation integrated with current knowledge of mechanisms of nociception [3,6].

Fibromyalgia becomes a regional condition

“The 1980s brought the dreaded “RSI” (repetition strain injury) with interaction between Fibromyalgia Syndrome and the medico-legal system [7].

One of the key proponents in Australia of fibromyalgia, Geoffrey Littlejohn, was keen to extend the construct to subsume these syndromes of less diffuse pain, which were then being called “RSI”. He and his colleagues argued that these conditions were in fact a “subset” of fibromyalgia. 

They conjectured: Mechanisms similar to those in generalised fibromyalgia are likely to operate, although to a lesser extent, in patients with primary chronic localised pain or localized fibromyalgia [8].

This reconceptualisation of “primary chronic localised pain” as “regional fibromyalgia” presumed the validity of a parent syndrome.

However this exercise was an example of the logical fallacy known as “begging the question,” and was particularly problematic when the diagnostic credibility of both conditions was being hotly contested.

In the absence of knowledge or theory regarding the pathogenesis of fibromyalgia, these authors nonetheless took a bold step to explain the pathogenesis of local pain that became regional.

To accomplish this, Littlejohn invented the concept of “simple injury to the muscle-tendon unit” but neglected to provide any pathological evidence to support the existence of such an entity:

The majority of patients with the “RSI problem” have a chronic pain syndrome, which, although it may be triggered by a simple injury to the muscle-tendon unit, is not due to persisting tissue damage of injury. Extensive investigations seeking out tissue damage will only show age-related changes which do not explain the diffuse symptoms” [9].

Thus, in summary, “RSI” is seen as a complex pathophysiological pain problem where clinical features may be approached using the paradigm of localised fibromyalgia syndrome” [9].

This step needs to be dissected in order to understand the transmutation of fibromyalgia.  A diffuse pain syndrome of unknown pathogenesis was invoked to explain “regional” or “local” apparently similar conditions of allegedly known pathogenesis.  There was never a “paradigm” of “localized fibromyalgia syndrome”; it was never proposed that (diffuse) fibromyalgia syndrome could be “triggered by a simple injury to the muscle-tendon unit”.

These assertions were and are entirely conjectural.

Medico-legal implications

Littlejohn’s next contribution was to downplay the nexus between “localised fibromyalgia syndrome” and work-related factors. This strategy was to have important implications for those with the condition who might be seeking workers’ compensation payments, particularly so in New Zealand [10].

Fibromyalgia can also occur as a syndrome of localised or regionalized pain and a low pain threshold. This situation is common after otherwise short-lived “soft tissue” injuries involving spinal areas, particularly in the context of compensation” [11].

Littlejohn defined “low pain threshold” in terms of sensitivity at the arbitrarily chosen “tender points” in fibromyalgia, which he claimed to be “characteristic regions used clinically to define pain threshold” – a circular argument – and that “sensitivity at these points is increased in pain-free subjects, but to an even greater extent in patients with fibromyalgia syndrome.”

But defining “sensitivity” in terms of the stimulus being applied is highly subjective and influenced by contextual effects and, as Littlejohn noted, this diagnostic criterion (along with widespread pain) has not been validated for medicolegal or disability purposes.

Furthermore, he did not produce evidence to support his claim that “low pain thresholds were common” after short-lived “soft tissue injuries” involving spinal areas. Yet again, conjecture was being passed off as established knowledge.

Littlejohn [12] then raised the spectre of psychogenesis:

“The regional features seem to relate to local biomechanical factors around the spine, either postural or secondary to simple strains. When central sensitisation occurs it is likely that central neurophysiological factors, including psychological influences, allow for the amplification of otherwise subclinical spinal reflexes. These in turn cause regional pain, tenderness, muscle tightness and dermatographia.

The concept of “otherwise subclinical spinal reflexes” is yet another of Littlejohn’s conjectures. Furthermore, he failed to explain the mechanism(s) by which “central neurophysiological factors” could be responsible not only for their amplification but also for the various clinical phenomena.

Finally, Littlejohn [13] announced “operational” criteria for a diagnosis of localised fibromyalgia. But in fact they were Littlejohn’s own non-validated criteria [12]:

“Regional pain syndromes are also referred to as localised fibromyalgia. Although no validated classification or diagnostic criteria exist for these condition, operational or clinically useful criteria have been proposed: regional pain and regional lowering of pain threshold, and the presence of sleep disturbance, fatigue, muscular stiffness and emotional distress in the absence of a primary nociceptive cause for pain.”

“Using this model, regional pain syndrome appears to be on a spectrum between the simple self-limited aches and pains of everyday life and persistent musculoskeletal syndromes such as fibromyalgia.”

Littlejohn’s pronouncements are tautological: if regional pain syndrome is in fact localized fibromyalgia syndrome, then it follows that fibromyalgia is generalised regional pain syndrome.

What was achieved?

Where has this transmutation of fibromyalgia taken us? Has any light been shed on diffuse or regional pain syndromes?

Littlejohn attempted to fill gaps in our understanding of  “RSI” by interpolating his personal views on Fibromyalgia into the debate.  However all he achieved was to introduce circular arguments based on conjecture.   How did the guardians of the literature allow that to happen?

John Quintner (Physician in pain medicine and rheumatology)

Milton Cohen (Specialist pain medicine physician and rheumatologist)

References:

1. Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombadier C, Goldenberg DL, et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia. Arth Rheum 1990; 33: 160-172.

2. Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, et al. The American College of Rheumatology preliminary diagnostic criteria fibromyalgia and measurement of symptom severity. Arthritis Care Res 2010; 62-600-610.

3. Cohen ML, Arroyo JF, Champion CD, Browne CD. In search of the pathogenesis of refractory cervicobrachial pain syndrome. Med J Aust 1992 ; 156: 432-436.

4. Cohen ML, Arroyo JF, Champion GD. The relevance of concepts of hyperalgesia to “RSI”. In: Bammer G, ed. Working Paper No. 31. Canberra: Australian National University, 1992.

5. Quintner JL. The Australian RSI debate: stereotyping and medicine. Disabil Rehab 1995; 17(5): 256-262.

6. Quintner JL, Elvey RL. The neurogenic hypothesis of RSI. In: Bammer G, ed. Working Paper No. 24. Canberra: Australian National University, 1991.

7. Reilly P, Littlejohn GO. Fibrositis/fibromyalgia syndrome: the key to the puzzle of chronic pain. Med J Aust 1990; 226-228.

8. Granges G, Littlejohn GO. Pressure pain thresholds in pain free subjects, in patients with chronic regional pain syndrome, and in fibromyalgia syndrome. Arthritis Rheum 1993; 36: 642-646.

9. Littlejohn GO. Key issues in repetitive strain injury. J Musculoskel Pain 1995; 3(2): 25-33.

10. Rankin DB. Viewpoint: the fibromyalgia syndrome: a consensus report. NZ Med J 1999; 112: 18-19.

11. Littlejohn GO. Med J Aust 1996; 165: 387-391.

12. Littlejohn GO. Clinical update on other pain syndromes. J Musculoskeletal Pain 1996: 163-179.

13. Littlejohn GO. Fibromyalgia syndrome and disability: the neurogenic model. Med J Aust 1998; 168(8): 398-401.

 One Comment

Why are some people with fibromyalgia so angry?

Life is full of difficult days, heartache, tough times, sad moments . . . I guess that's how we know when we are having good days, euphoric moments, happy days . . .    On top of all those complicated feelings and emotions I also pick up the emotions of others.  So I can be having a perfectly good day and in some way I come in contact with someone that is spewing anger and that has a profound personal effect on me.  Don't get me wrong.  I dealt with many angry people in my career and I was very good at diffusing anger and solving problems.  But the key was that a solution was agreed upon and the anger dissapated.  I have had times in my life when I was perpetually angry.  That anger had a life of its own and fed off of itself -- it was well fed.  Then I realized that my anger, which was a necessary emotion at one point in time, no longer had any use.  It had outlived its usefulness.  The result was that I was miserable and I was probably miserable to be with too.  I thought, "Who cares if I'm walking around angry?"  I discovered the answer to that question was "me".  I was the only one that cared.  At that point I realized my anger was no longer useful and had become dysfunctional.  So I decided to give it up.  I haven't been angry like that since, and that feels very good.  As a result I'm more resilient and more at peace with my life.  When I get angry I figure out the real reason I'm angry and make sure I direct that anger appropriately.  If that anger doesn't have any real purpose, I let go of my anger.

There are people that I come into contact with when I'm in pain, fatigued, irritable . . . you get the picture.  Those people can really bug me, but if it's only about me and my state of mind, I regroup and move forward.  Doctors can be annoying simply because I don't always know what they are really thinking.  After a recent doctor visit I was talking about my problem with not being able to fall asleep and the neurologist told me to increase my dose of ropinirole for Willis-Ekbom and then she said she would see me in 2 months.  I thought to myself, "What the heck?"  So I said in a sincere tone, "Thank you for your help."  I needed time to think about this visit.  I always take the time to process events so I understand what I really think.  It's difficult to imagine everything that is going through a doctor's brain during a 10 to 15 minute visit.  And all these thoughts are traveling at the speed of light.  Anyway, I took an extra ropinirol that night and I didn't notice any difference in my sleep.  So I did this for several nights with the same result.  I thought the increased dosage in ropinirole wasn't really helping so I cut back to my former dose.  I had to laugh.  I'll be darned if I wasn't more miserable throughout the day and the night.  So I increased the dose again and I'm feeling better.  Patience.  That's something this illness has taught me.  There aren't any emergencies and yet I can feel quite impatient.  Patience is a big requirement when dealing with a chronic disease especially one that is poorly understood and one that has no specific treatment.  In addition, fibromyalgia expresses itself differently in each person so trial and error is the care plan.

I read fibromyalgia blogs and the comments on these blogs, which are frequently about how angry these people are.  That anger is directed at caregivers, doctors, pharmacists, researchers, perfect strangers . . .  I wonder why these people are really so angry.  My guess is because they are sick and don't feel well.  But who's fault is that anyway?  I haven't been able to figure out who's to blame for my misery.  I sure would like to know so I could pop them a good one.  But I can't find who's really responsible for this.  So meanwhile, I'm going to live an uncomplicated life with joy, life satisfaction, love and peace.  Since that is my M.O. I work to eliminate as much contact with angry, dissatisfied people as I can.  It really helps.  But I'm not going to quit looking for whoever is to blame for all of this so I can pop them a good one.

The nuance of attitude

Ozzie Osbourne with his son Jack

When I first got sick with fibromyalgia and I was dealing with the pain of an injury and two back-to-back surgeries I knew that my attitude was going to play a big role in my ability to overcome the misery I was in.  I have always tried to have a positive attitude, but some days that's easier said than done.  Experience has taught me that a positive attitude makes my day go better.  But despite this knowledge there are times when my attitude is in the pits and I don't like it there.  It's at those times that I seek out the wisdom of others suffering with a chronic illness.  This morning I was watching the news and I learned that Ozzie Osbourne's son, Jack, was diagnosed with multiple sclerosis a while back.  Jack appeared on today's morning news to briefly talk about how he deals with his diagnosis and he made a profound statement.  Jack said, "I don't live with MS; MS lives with me."  The nuance of his outlook really struck me; he doesn't want his chronic, progressive illness to rob him of his life.  He views his illness as only a single component that makes up the whole of his identity and his being.

It is easy to allow a chronic illness rob you of your life especially when suffering with a life altering illness like fibromyalgia.  Fibromyalgia seeks to demand our constant attention since we must manage metamorphasizing symptoms that change character, severity, and location every hour of each day.  Fibromyalgia's chronic symptoms seek to erode our attitude and our quality of life, but that's only if we allow that to happen.  We are in control of our destiny despite the unexpected roadblocks that appear during this journey.  When we feel discouraged and our attitude is down in the dumps it is beneficial to discover how others are dealing with their roadblocks.  We may not be able to do what others our own age do, but we cannot give up our life for this roadblock called fibromyalgia.  This challenge seeks to find out what we are really made of and how tough we really are:  we are warriors.

The strategies in my toolbox are to avoid negative thoughts and situations that breed negative thoughts, focus my time on the things I really love to do, surround myself with positive people, and seek out the wisdom of others that suffer with a chronic illness.  I am interested in knowing what strategies you keep in your toolbox . . . .    Blessings to all you warriors as you go through each day!

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!

Why don't people see my invisible illness?

Did you know that according to the 2002 US Census Bureau approximately 96% of people who live with a chronic illness have an illness that is invisible?  These people do not use a cane or any assistive device and may look perfectly healthy.  It is believed that 1 out of every 2 Americans live with a chronic illness and that doesn't include all the people that have chronic pain.  Even though this statistic is outdated and doesn't include everyone, it is a startling statistic.  So why don't we see these people and why don't they see us?

For people that are chronically ill, every day means managing a chronic illness that has had an impact on their quality of life.  These people live all over the world and are all ages, religions, cultures, and nationalities.  As we age the opportunity to develop a chronic illness increases.  Some illnesses are life threatening and others are more of an annoyance.

When I worked at one of the Southern California hospitals I was involved with the Adult Congenital Heart Disease program.  Babies born with a congenital heart defect 40 years ago started to survive due to advances in surgical techniques.  Prior to that those babies didn't survive.  Now we have a whole new adult patient population with congenital heart defects that were corrected as babies and they now need revisions done.  These adults have become the pioneers for adult congenital heart disease surgical and medical management.  They are fearful of dying every day and they are anxious and lonely.  There aren't that many adults with congenital heart disease yet, but their numbers are growing as surgical intervention

Are you sleeping at night??

So, are you sleeping at night?  If you have chronic fatigue syndrome or fibromyalgia the answer is most likely "no".  Difficulty sleeping and waking unrefreshed are hallmarks of both disorders.  I have recently done more research on the subject and I was surprised to find out that so much is known about fibromyalgia related sleep disorders.  The National Sleep Foundation (www.sleepfoundation.org) provides some basic information about this unique sleep disorder, but a Web site that provides the most comprehensive information about fibromyalgia and all the difficulties encountered with this syndrome can be found at www.fibromyalgia-symptoms.org  If you would like to read specifically about fibromyalgia related sleep disorders you can access that information at www.fibromyalgia-symptoms.org/fibromyalgia_sleep_disorders.html  It seems that people with fibromyalgia have what is called an alpha EEG anomaly.  An EEG (electroencephalogram) is a

The Fibromyalgia Warriors . . .

A long time ago, maybe 18 years, I was reading a mini book about chronic pain and there was a quote that struck me, and you may have see this before too:  "Pain is inevitable, but misery is optional."  I wish I could give proper credit to the author, but that little book is long gone with the several moves I have made.  The reality of Fibromyalgia/Chronic Fatigue Syndrome is that both chronic pain and misery are inevitable.  The optional part is how you choose to approach pain and misery.  Not a task for wimps, that's for sure!  I am impressed and inspired by the number of people with Fibromyalgia/CFS that approach their illness with dignity, grace, fortitude, humor and comraderie.  Not every chronic illness has both components; dealing with pain and misery together is the sign of a courageous warrior.  It isn't easy to identify these warriors, because they wear a clever disguise:  smiles.  How remarkable is that?  These warriors look "normal", they act "normal" and they don't complain.  Hmmmmmmmmmmmm.  The energy it takes to be among other people and have a conversation is astounding.  Especially when word find is so difficult and fighting through foggy confusion to gain clarity is ever present.  And that dang pain and misery can be so hard to ignore with its constant tug at the consious brain.  Kudos to all those warriors that wear their clever disguise every day and to those warriors that dare to tell the truth in a public forum.  You open yourself up for criticism, but to say nothing is to risk nothing and is to be nothing.  I heard that line not long ago and I'll be darned if I can recall who said that!!



I thought I would share something from my garden that inspired me today.  These blooms are so fleeting, they last about a day.  It reminds me of the moments when I can push the pain and misery from the forefront and it becomes mere background noise.  Whatever you do today, enjoy your moments!  Blessings to you . . .