Where did I go?

In the spring of 2012 I dropped off the map. Where did I go. First, my father, who had been having major helath problems, got worse. He contracted pneumonia, and we ended up moving him to a nursing facility. He never really improved, and passed away a few months later. In that same time period, my work as a freelance consultant in instructional design increased tremendously. I also moved to a new home, while still trying to sell my bed and breakfast. I continued managing the B&B until the end of 2012, and sold it the following spring.

My plate was full. Then 2013 came along, and I suffered a major break to my leg. A summer of physical therapy, the continuing growth of my consulting work, and the continuing care of my mother has left me with very little time. Except for the broken leg, it has been a very fulfilling year. I love my work, but starting a business is time consuming, and I just cannot have my focus spread in too many directions.

Yes, I still have fibro, but when life is treating you well, it is amazing how much less of an effect it has. I want to complete this book, but I need to focus on my business first. So I have not lost interest, I just need to regroup.

Comfortably Numb

When I interviewed Woody last summer, she was 92, and still living alone in her own country home. Woody was amazingly sharp and spry. She also had an amazing head of hair. She still drives, but walking is becoming more difficult. She has macular degeneration, some kidney troubles, and hearing loss -- minimal problems for a person her age. Woody was diagnosed with lupus in the early 1950s. "I was in my forties then. I had fluid in the lungs. I was getting swelling. My hands would swell up, my ears... If I bent over, it felt like my chest was full of oil.

At that time in the 50s there wasn’t much known about lupus, "but I had a good diagnostician. He said I had either syphilis or lupus. How could I have syphilis!" Woody said laughing.

"They put me on prednisone at that time, and I’ve been on it ever since."

Unfortunately, the lupus also caused hair loss. That amazing hair was a wig. The fibromylagia diagnosis was not made until 1993. "I had an accident where I had a compound fracture in my wrist and had to have hand therapy.

I get spasmodic pain. It could be anywhere. It could be my toe, the top of my hand, or my finger. It lasts maybe 30 seconds or more and then it’ll go away. It’s strange. The pain doesn’t stay. It’s nothing that requires pain medications.

I told my hand therapist about this and she says it sounds to me like you have fibromyalgia. She printed out information on fibromyalgia and gave it to me. I did have the symptoms, so I assumed that’s what I’ve got."

Woody is a strong woman both in constitution and personality. Although fibro often goes hand-in-hand with lupus, the assumption of fibro and its symptoms puzzles me. In the 90s, fibro was barely known, and not readily accepted by the medical community.

According to Woody, "I don't have much pain. The fatigue is probably a combination of the fibro and lupus. I take vitamins and I follow health rules. I don’t smoke. I don’t drink. I had four hours of sleep last night so when I came home from church I was a little tired. But sometimes I can overcome it without too much trouble. It’s normal, at least compared to what some people go through. I don’t suffer too much."

Whether the fibro was a correct diagnosis, I couldn't say. Woody accepted the therapist's suggestion, and never did much more about it. Out of curiosity she has attended some meetings on fibro. It was difficult to get information out of Woody because she minimize her symptoms. Were her symptoms as minor as she makes them out to be or was the fibro a misdiagnosis. After all, she was in her 70s when the therapist suggested that was the problem. Aches and pains are pretty commonplace at that age.

I've noticed that it's not uncommon for people of her generation to minimize pain in people. The people I know who are 80 and older don't make too much of their pain. My 92 year old neighbor still plays golf nearly daily. My father who is in his 80s never complains about pain. He had a large abcess that required surgery, and we never knew about it until he was in septic shock. He broke his nose recently and claimed it didn't bother him much. Another neighbor who is close to 80 and a cancer survivor, still plows, cuts lawns, farms, and grooms at the local ski slope.

Of course there are always people who complain about every little thing, regardless of their age, but are we less tough than they were? Nowadays, everything you hear on drug commercials is about pain management. U.S. medicine focuses quite a bit on pain management.

It seems like everyone takes pills for every little complaint. Are we being made to believe that it is abnormal to feel pain? Years ago doctors were hesitant to prescribe narcotics for fear of addiction. Now they dole them out like candy. No wonder there is so much prescription drug abuse.

If pain is keeping you from doing normal everyday tasks like dressing or washing yourself, then you probably need some help. But is it really necessary to pop some Advil before competing in a sport? Despite the extreme activities that more and more people seem attracted to these days, we also seem to want to do these activities without feeling a thing. It's hard to know whether we are less tough or not.  Maybe our drugs of choice have just changed. A century ago opium used to be readily available in the form of laudanum.

" Innumerable Victorian women were prescribed the drug for relief of menstrual cramps and vague aches and used it to achieve the pallid complexion associated with tuberculosis (frailty and paleness were particularly prized in females at the time)."

http://19thcentury.wordpress.com/2008/03/02/laudanum/

Needy People

Those of us with obscure ailments often chastise the doctor who refuse to acknowledge our symptoms. We attribute the doctor's attitude to arrogance or laziness but maybe we also share the blame.

I am talking about needy people. We all know someone like this, and we all have our needy moments. Needy people crave attention. They always one-up you. If you're sick, they're sicker. If you're injured, they were injured worse. If you met someone famous, they met someone even more famous. Good or bad, they can always top you.

Mistakenly, you might respond to a needy person's complaint with a helpful suggestion. Of course, the needy person replies "I have tried that and it just doesn't work. I am so much more sensitive than other people."

It is even possible a needy person's way of looking at life is making him sick and miserable. This could be a sign of untreated anxiety or depression. Regardless, it is exhausting to deal with a needy person. Like a black hole, they suck out all your energy,

Now imagine you're a busy doctor with many patients to treat, and one of them happens to be a needy person. It must be extemely frustrating to have a patient who returns repeatedly with symptoms you just can't help.

Doctors don't refer to these people as needy people, they call them difficult patients, and there are attributes that define this type of patient:

• Insist on being prescribed an unnecessary drug.

• Show dissatisfaction with care.

• Have unrealistic expectations for care.

• Visit regularly but ignore medical advice.

• Complain persistently, although the doctor has done everything possible to help.

• Insist on an unnecessary test.

• Are verbally abusive.

• Do not express appropriate respect.

 (http://patients.about.com/od/doctorsandproviders/a/doctorcomplaints.htm)

There are two sides to every story though. Doctors can contribute to their patient's difficult behavior for the following reasons:

·         Some doctors are just frustrated.

·         Some patients demand treatments doctors are unwilling to provide or prescribe.

·         Patients who show up too frequently in emergency rooms may be turned away or mentally blacklisted in some way.

·         Sometimes doctors refuse to see patients out of a belief that a disease doesn't exist.

·         Some doctors just don't want to work with empowered patients.

·         The most repeated reason doctors will turn a patient away has to do with patients in real pain vs. drug-seeking patients.

(http://patients.about.com/od/doctorsandproviders/a/dealwdifficultpts.htm)

Whether you are a frustrated patient or frustrated doctor, take a good hard look at yourself. If you're being honest with yourself, do you find that you ever exhibit any of the behaviors described above. If so, why? For both the patient and doctor to succeed, you need to listen to one another, be willing to try different things, and try these things in a positive way. Going at each other with cross-purposes give both doctors and patients bad names, and no one feels any better.

Fibro: Mass Hysteria? Part 2

In my last post (2/16/2012 - Fibro: Mass Hysteria? ), I shared a letter from a doctor in New York City. In this letter, Dr. Kaddoch states,  "Disorders like chronic back pain, fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome have spread in epidemic proportions despite little consensus among physicians as to their etiology or to an optimal management and treatment approach. These are the telltale features of psychosomatic disease."

Let's take a moment to compare the symptoms and diagnosis of conversion disorder versus fibromyalgia as shown on the Mayo Clinic's website.

Conversion Disorder (Mass Hysteria)	Fibromyalgia
Symptoms:
Conversion disorder symptoms usually appear suddenly after a stressful event. Common symptoms can include: ·    Poor coordination or balance ·    Paralysis in an arm or leg ·    Difficulty swallowing or "a lump in the throat" ·    Inability to speak ·    Vision problems, including double vision and blindness ·    Deafness ·    Seizures or convulsions Other conversion disorder symptoms include: ·      Loss of balance ·      Numbness or loss of the touch sensation ·      Inability to feel pain ·      Hallucinations ·      Difficulty with walking ·      Urinary retention	The pain associated with fibromyalgia often is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist. Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include: ·    Back of the head ·    Between shoulder blades ·    Top of shoulders ·    Front sides of neck ·    Upper chest ·    Outer elbows ·    Upper hips ·    Sides of hips ·    Inner knees Fatigue and sleep disturbances: People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symptoms. Coexisting conditions: Many people who have fibromyalgia also may have: ·    Fatigue ·    Anxiety ·    Depression ·    Endometriosis ·    Headaches ·    Irritable bowel syndrome
Diagnosis:
You must have one or more symptoms you can't control that affect movement of part of your body or your senses. These symptoms must seem as if they could be caused by a neurological or other medical condition. ·    Your symptoms must have occurred after a stressful event. ·    You're not producing symptoms on purpose. ·    Your symptoms aren't fully explained by a general medical condition, drug use or a culturally accepted behavior, such as experiencing visions at a religious ritual. ·    Your symptoms must cause significant stress or difficulty in social, work or other settings. ·    Your symptoms aren't limited to pain or sexual problems, and aren't better accounted for by another mental health problem.	·    Widespread pain lasting at least three months ·    No other underlying condition that might be causing the pain ·    At least 11 positive tender points — out of a total possible of 18 (1990 criteria)

The biggest contrast between the two disorders is that conversion disorder comes on suddenly, and usually resolves itself in weeks. Wide-spread pain has to be experienced for three months or more before a diagnosis of fibromyalgia is even considered. I cannot even see the sense in lumping these two disorders together.

In my last post I defined many of the terms in Dr. Kaddoch's letter. I would like to take a closer look at psychosomatic.
"Psychosomatic: pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin."

Many illnesses can be related to the mind. The mind is very powerful, and under the right conditions, can cause stress to manifest in very physical ways. A very simple example of this is experiencing some sort of digestive problem in an unpleasant situation. A friend of mine, used to break out in hives before giving presentations. Although this might be considered psychosomatic, it certainly isn't conversion disorder. Nor in most cases, does it require medical intervention.

I will not disagree that fibromyalgia can have psychosomatic links, but so can arthritis, or a broken leg, or anything else that causes stress or discomfort in your life. By the same token, just as a stomachache can be brought on by stress, so can the symptoms of fibromyalgia. Does this mean that stomachaches, fibromyalgia, and conversion disorder all originate in the mind? To make this leap is irrational and irresponsible.

It is very possible that fibromyalgia is over-diagnosed. After all, a doctor is frustrated by someone who is always in pain, to which no direct cause can be found, such as a broken bone. How do you treat this? Label it. If you place a label like fibromyalgia on something frustrating, then you've made a diagnosis, and you can move on. It's simple, the doctor can now say there are treatments but no cures, and if the doctor's really lucky, maybe the patient will be unhappy with her treatment and diagnosis and take her business elsewhere.

Then there are the disbelievers. Your fibromyalgia is in your head. It will go away on it's own. Or you could try engaging in some talk therapy. That should solve the problem. I could talk until I am blue in the face, and my fibro is not going to suddenly resolve itself. It may be less pervasive because I addressed the stress, but I have not treated the physical, which I strongly believe exists.

This is not fair to all doctors, but people are human, and it is readily believable that there are a few who behave in this way. Just because a doctor cannot find a cause for symptoms, doesn't mean there isn't one. Science is still evolving. Doctors and scientists do not know everything. If they did, there would be cures for cancer and diabetes. The body is a very complicated piece of machinery. The day that science can explain everything that happens is the day that scientists become equal with God. We are not even close to that point. It is arrogant to assume that because you can't trace a symptom to something tangible, that the tangible cause does not exist. It just means you don't know enough yet.

Fibro: Mass Hysteria?

I am not drawing any conclusions about the illnesses in Le Roy, NY, but the following is a letter that appeared recently in Rochester, NY's hometown paper:

“I have read with interest about the case of mass hysteria in Le Roy, Genesee County. The truth is that this phenomenon is far more common than presently realized.

Psychosomatic illnesses tend to spread in epidemic fashion, similar to infectious outbreaks. A survey of medical history demonstrates this concept quite nicely. Hysterical symptoms like paralysis and blindness were extremely common in the days of Freud and Breuer. Only after we learned that these disorders were a form of neurosis did the cases finally begin to disappear.

Psychogenic illnesses permeate the current medical landscape and are a tremendous source of health care expenditure. Disorders like chronic back pain, fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome have spread in epidemic proportions despite little consensus among physicians as to their etiology or to an optimal management and treatment approach. These are the telltale features of psychosomatic disease.

We have a lot to learn from the recent outbreak in Le Roy. It is far from an isolated incident.”

Dr. Michael A. Kaddoch
New York City

Kaddoch, M. (2012, February 15). Historical context for the Le Roy outbreak.  Democrat  and  Chronicle, pp. 7A.

Before I even comment on this letter, let’s define some terms:

Mass hysteria: an episode of psychogenic illness affecting a large group of individuals at the same time. Examples include the witchcraft trials of the 17th century and the irrational mass reaction to the 1938 radio show based on H.G. Wells' science-fiction novel, War of the Worlds. Also called collective hysteria, epidemic hysteria, major hysteria, mass panic, mass psychogenic illness.

Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier.

Conversion disorder: (Although this term was not used in the letter, it has been used in the media as a synonym for mass hysteria.)

Conversion disorder is a condition in which a person has blindness, paralysis, or other nervous system (neurologic) symptoms that cannot be explained by medical evaluation.

www.ncbi.nlm.nih.gov

Psychosomatic: pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin.

Dorland's Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of Elsevier, Inc. All rights reserved.

Neurosis: a mental and emotional disorder that affects only part of the personality, is accompanied by a less distorted perception of reality than in a psychosis, does not result in disturbance of the use of language, and is accompanied by various physical, physiological, and mental disturbances (as visceral symptoms, anxieties, or phobias) 

http://www.merriam-webster.com/dictionary/neurosis

Psychogenic:

1 originating within the mind.

2 referring to any physical symptom, disease process, or emotional state that is of psychologic rather than physical origin. Also called psychogenetic. See also psychosomatic.

Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier.

Now that we are familiar with the terms used in Dr. Kadoch's letter. I will continue in my next post to contrast his opinion against that of someone who has suffered from both fibromyalgia and chronic back pain.

Book Status

I have completed eleven interviews so far, transcribed all but one, and drafted seven of them. I mention this because a friend asked me today how the book was going. It is going, but very slowly. I am working a paying job again, that uses my skills of art and writing to design training. There is nothing as nice as working at something you enjoy, and being able to do it on my own terms. I work as a consultant, from home, and for the most part, set my own hours.

As a whole, life is good. Despite the warm winter, I am skiing and racing. This gives me plenty of opportunity for fresh air, exercise, and good friends. But there is also a very stressful side to my life. I am caring for aging parents, one of which has a lot of health problems. This is the reason I became interested in writing about fibro. The last three years consisted of moving elderly parents out of the home they lived in for 40 years and becoming their home health aide. This has taken quite a toll on me.

Before this time, my fibro was a mere inconvenience. I paid little attention to it. As the caregiving began, the stress it created in my life intensified all the symptoms. It became much harder to ignore. I was exhausted all the time. Dealing with my parents in good times is rocky at best. When I am exhausted, I don't deal well with all the drama. The more exhausted I get, the more I start to ache, and the less able I am to cope with my parents.

This set me to wondering, how do others do it? That became the starting point for my book. Now, I need to focus on what I want to accomplish. What is my ultimate goal, and what are the objectives for achieving this goal? That's the instructional designer in me. The artistic side of me wants to know "what is my slant?" "How do I make this interesting for others?" "Do I need to do more interviews?"

While I grapple with these issues, I will continue to blog as the muse strikes me, and plug away on the last transcription.

Fibro, a Fad Disease?

I was chatting with a friend one day, and our conversation turned to the subject of the host of strange new diseases that seem to be cropping up in our modern world.  He asked, “Why didn’t we hear about these when we were growing up?”

I often wonder about the same thing. There seems to be so many new allergies and sensitivities that more and more people have developed in recent years. Are these really new diseases, or just some form of mass hypochondria? Do we really suffer from more and different diseases, or have they always existed and is medical science just now catching up to them?  Has our environment done something to alter the chemistries in our body? Or could this be just another byproduct of our increased media coverage?

I don’t know the answer to those questions, but I do know that when my friend’s litany of diseases landed on fibromyalgia, I thought, “Whoa!  Wait a minute!  I have that one!”

In an effort to learn more, I researched fibromyalgia’s history and found that it has been documented for many centuries. Here are some notable dates:

·         1600s – Fibromyalgia-like symptoms were first given a name:
muscular rheumatism.

·         1816 – Dr. William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.

·         1824 – Dr. Balfour described tender points.

·         1904 – Sir William Gowers coined the term fibrositis (literally meaning inflammation of fibers) to denote the tender points found in patients with muscular rheumatism.

·         1972 – Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.

·         1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.

I also discovered a paper entitled, “Understanding Chronic Pain and Fibromyalgia: A Review of Recent Discoveries”, written by Robert M. Bennett MD, FRCP, Professor of Medicine at Oregon Health Sciences University. In his paper, Professor Bennett states that “fibromyalgia tends to be treated rather dismissively, sometimes with cynical overtones. When I trained in London some 30 years ago, this diagnosis was never mentioned, even though I trained with one of the foremost rheumatologists in the world at the time. In the United States fibromyalgia has become a semi-respectable diagnosis within the last 10 years, but even so it has some critics.”

According to the National Fibromyalgia Association, “fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally, and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.”

The Mayo Clinic’s website describes fibromyalgia as follows:

“You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.

Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.”