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.”

Caregiving

The problem with fibro, or just about any other illness, for that matter, is that life doesn't stop just because you do. Most people are caregivers of some sort. It doesn't mean you care just for elderly or sick people. If you have an immediate family and children, you're a caregiver. If you have pets, you're a caregiver.

I'm a caregiver, I have both pets and elderly parents to care for. The pets aren't usually a problem. The parents are. My father has dementia, and it is getting progressively worse. This past week, for two days he was unable to sit up, stand up, or walk. I won't go into all the gory details that the logistics of this debilitation entails, but we ended up at the emergency room last Tuesday afternoon.

It started with a call from my mother. "I need help getting him cleaned up and changed."

He had problems the day before, so this was not unexpected. I said I'd be right over.

It turns out, he had tried to get out of bed during the night, and both he and my mother had fallen. She made him comfortable on the floor, since he was too heavy for her to move. She didn't call me until nearly one o'clock in the afternoon. My father had been laying on the floor for hours.

I cleaned him up, dressed him, but I too couldn't get him off the floor. We did not know why he suddenly couldn't support himself, and decided that a visit to the hospital was necessary. We called an ambulance.

I started to worry, when the attendants wanted his DNR. This is the do not rescucitate order. "Did they think he might die on the way to the hospital?"

His vitals were fine. The more I thought about it, the less worried I became. He's been this way for hours, he's not going anywhere yet. My father, despite all his ailments, has this amazing resiliency.

If you have never been to an emergency room, it is a torturous experience. You wait and wait and wait. We knew this. We have been to the emergency room several times in the past few years. I always take something to do.

My mother on the other hand, takes nothing, and despite our vast experiences with emergency rooms, she complains constantly the whole time about how long it's taking. While she was doing this, my dad was trying to escape. He kept trying to sit-up and would pull off all his monitors. They'd reattach them. He'd start all over again. Between the two of them, I was ready to scream.

We arrived at the hospital between four and five in the afternoon. We finally got home around 11 pm. Yes, believe it or not, they released him. The blood tests showed no signs of infection or any other trouble, so they gave him fluids.

After his second IV bag, the doctor decided to see if he could walk. They got the walker out, and two nurses escorted him around the floor. He did just fine. Here was a man who couldn't even sit up a few hours ago, using his walker with no problems at all.

We took him home. Unfortunately, he felt better, and became less docile and more belligerent. We went through quite a struggle getting him settled for bed. I finally got home to my house around 1 am.

Between the physical exertion and the stress, I woke up exhausted the next day. Anyone would. My muscles were aching, my bad wrist and back were aching from all the pushing and pulling that occurred over the last couple of days. I could feel a flare coming on.

I was fatigued but, I had a deadline to meet. All the other things I needed to do had to go on the backburner while I struggled to meet my deadline. It took me the rest of the week to recover. Even now my arm and lower back are still giving me some trouble.

Many of the people I interviewed are caregivers in the family sense of the word. More importantly, some are caregivers as a career. Because of her fibro, Kristy had to give up caring for children because she could no longer handle the lifting required. Carmen had to give up her job as a nurse technician when she damaged her shoulder lifting a patient. This set off a series of operations along with the fibro. Misha still works and loves her job, but finds being a radiology technician physically demanding and very hard on her fibro.

Like it or not, we continue somehow, but the stressful demands of caregiving, places and even greater burden on those who suffer from chronic pain conditions.

An Appointment with the Dentist

I suffer from temperomandibular joint disorder (TMJ). This is very common in fibromites, but in my case the fibro did not bring on the TMJ. I believe the TMJ was the cause of the fibro.

In my early 30s, I was knocked flat by a volleyball bumped by one of teammates. It hit me square under my lower jaw and laid me flat on my back. I got up, finished the game, and thought no more about it.

Then the facial pain started. I thought it was my sinuses. I would get intense headaches, and my teeth would ache. This went on for quite a few months. I started getting severe earaches and muscle spasms in the jaw. By the time I went to the doctor, my bite had shifted because of the muscle spasms. My teeth were not hitting together correctly. The doctor diagnosed TMJ and sent me to the dentist. It took months of eating only soft foods, a bite-guard, and two years of physical therapy to bring my TMJ under control.

Now, roughly 15 years later, my TMJ is well-controlled. I wear a bite-guard nightly and I know the signs of a recurrence. I can proactively prevent or minimize an attack through the exercises I learned many years ago. 

I have never feared a dentist visit. I tend to be meticulous about my dental hygiene. But dentist visits are problematic, because it requires having my mouth open for long periods of time. This can set off the pain and muscle spasms of TMJ. When I go to the dentist, I expect my jaw to ache afterwards. I expect to have a mild headache. I do my isometric exercises as soon as the visit is over.

Something that didn't occur to me until after my recent visit, was that a visit to the dentist can also cause my fibro to flare. I am always uncomfortable in a dentist chair. Not just because my mouth is being forced open wider than it wants to go, but also because the chair bothers my back.

On this last visit, I had two procedures back-to-back. I was in the chair for three hours. By the time I returned home, not only was my jaw aching, but my whole body. I had flu-like pain throughout, especially in my back. My skin hurt, and just leaning back in a chair was agony. Fatigue and a bit of nausea crept in. I ended up taking some acetaminophen and sleeping the afternoon away uncomfortably. Fortunately, the flare was short-lived. A muscle-relaxer and more acetaminophen at bedtime, and I felt fine the next morning. Now when I go to the dentist, not only do I have to be proactive about my TMJ, but I have to consider my fibro as well.

DMG

Recently I blogged about my pill organizer, but what I didn't mention was the DMG I take twice daily. That's because I take it in a liquid form, and it doesn't go into my pill organizer. I started taking DMG because a friend of mind believes it is a miracle supplement. She initially gave it to me for my cat, Spike, who I blogged about over the summer. Spike has feline immunodeficiency virus (FIV), the feline version of AIDs. DMG is purported to support the immune system, so we thought we'd test it out on him. I have to report that Spike is amazingly healthy so far. Based on Spike's surprisingly good health despite the vet's dire predictions, my friend, decided I too should take DMG and see what it does for my fibro.

What is DMG? I'll start first with Wikipedia's definition:

"Dimethylglycine (DMG) is a derivative of the amino acid glycine with the structural formula (CH3)2NCH2COOH. It can be found in beans and liver. It can be formed from trimethylglycine upon the loss of one of its methyl groups. It is also a byproduct of the metabolism of choline.

When DMG was first discovered, it was referred to as vitamin B16, but, unlike true B vitamins, deficiency of DMG in the diet does not lead to any ill-effects meaning it does not meet the definition of a vitamin. In legal terms, it has been deemed a food product and, as such, is available without a practitioner or prescription.

Uses: Dimethylglycine has been suggested for use as an athletic performance enhancer, immunostimulant, and a treatment for autism, epilepsy, or mitochondrial disease. Published studies on the subject have shown little to no difference between DMG treatment and placebo."

Next let's look at Dr. Ray Sahelian's take on DMG. (Please note that I do not represent his view's as my own. I am just offering a different view from Wikipedia's.):

"If you find the field of mind-boosting pills, sex nutrients, and anti-aging interesting, you will certainly want to learn more about DMG (dimethylglycine), TMG (trimethylglycine), and methyl donors. Unless your major is college was chemistry, chances are you don’t remember learning about DMG or methyl donors. A methyl donor is simply any substance that can transfer a methyl group [a carbon atom attached to three hydrogen atoms (CH3)] to another substance. Methylation is a biochemical process that is essential to life, health, and regeneration of body cells. Vitamins, hormones, neurotransmitters, enzymes, nucleic acids (DNA and RNA), and antibodies depend on the transfer of methyl groups to complete their synthesis. Scientists suspect that proper methylation of DNA may prevent the expression of harmful genes, such as cancer genes. It’s quite likely that our body’s ability to methylate declines with age, contributing to the aging process, and therefore supplementation may well be beneficial. The research in this area is still very early and no firm answers are yet available."

Whether you believe in DMG or not, interestingly enough, I think it might be helping. I have been taking this supplement since early-October, and I feel less fatgued. I still have the muscle aches, I still get tired, but it feels like a more normal tired. The kind of tired you're suppose to have after you've spent a morning stacking wood.

Of course, this could also be due to the fact that I am no longer baking like a madwoman. That was also taking a toll on me. Fall is always hard on my fibro because of the time change and the constantly changing weather systems as we move into winter. The persistent cold of winter makes my muscles ache and can cause me a great deal of fatigue, especially in the morning. I will continue on the DMG through the winter, and see if the improvement in energy continues.

The Weekly Pill Organizer

The weekly pill organizer waits patiently. Each empty cubicle represents one day out of one week of my life. Large blue block letters indicate the day of the week. These days are spelt out in slightly smaller block letters. I lift the first lid to begin the process of refilling the pills for the week. 

I start on Sunday. For some, the Holy day or Sabbath, for others the last day of the weekend. I place the first pill into the receptacle-- one birth control pill. Is this pill an indication of my rabid sex-life? Does it represent taking responsibility for my actions? The reality is less exciting. Severe PMS is common in fibromites. I take this pill daily to control wild hormonal fluctuations. I place one of these pills in each receptacle, then I turn to the next.

Cinnamon is a spice obtained from the inner bark of several trees from the genus Cinnamomum that is used in both sweet and savoury foods. Cinnamon trees are native to South East Asia, and according to some studies, cinnamon may improve blood glucose and cholesterol levels in people with Type 2 diabetes. 

Both my parents have Type 2 diabetes, my cousin has it, two of my uncles have had it. Genetically, I am at great risk to have it too. Therefore, I proactively take a 500 mg capsule of cinnamon at both breakfast and dinner daily.

Next I add my flaxseed oil. I chose flax seed oil over fish oil, because I am pre-menopausal. Flax seed oil can help stabilize a woman's estrogen-progesterone ratio, have beneficial effects on the menstrual cycle, and relieve the hot flashes of peri-menopause and menopause.  

Flaxseed and flaxseed oil contain alpha-linolenic acid (ALA), an omega-3 fatty acid that partly and inefficiently converts into DHA and EPA. I can get this more directly from fish oil, but I see no need to take both supplements, and the fish oil does not provide the menopausal benefits. Additionally, flaxseed has shown some ability to lower inflammation markers, although not as efficiently as fish oil.

The dark green pill I add is magnesium. Magnesium is the fourth most abundant mineral in the body and is essential to good health. It helps maintain normal muscle and nerve function, keeps heart rhythm steady, supports a healthy immune system, and keeps bones strong. Magnesium also helps regulate blood sugar levels, promotes normal blood pressure, and is known to be involved in energy metabolism and protein synthesis. Those of us with fibromyalgia have been found to be low in magnesium. Irritable bowel syndrome is also one of those ailments that commonly accompanies fibromyalgia. In my case it is IBS-C, or IBS with constipation. Taking a magnesium supplement is a common treatment for both fibro and IBS-C.

Joining the daily pill party is a B-complex supplement. B vitamins are known to support energy production in the cells. Vitamin B-12, in particular, helps to combat nerve problems, such as tingling and tenderness.

Of course in our pill-popping world, no supplement party is complete without a pro-biotic. My pro-biotic is perfectly spherical, creamy-colored, and appropriately named Pearls IC. I have tried the yogurts and other supplements with no success. An herbalist recommended this one for me, and if nothing else, I noticed I don't get yeast infections anymore when I must take an antibiotic.  

Then I must add the dreaded pink pill. Dreaded because if I remove it, I get extremely sick. This little pill is Prilosec or the generic equivalent. Some of you may groan in horror. "Oh you must not take that daily. It will do bad things to you. It is better to change your diet." I don't want to change my diet. First I am a pretty healthy eater, and second I love tomatoes and chocolate, and refuse to give either up.

Unfortunately GERD, heart-burn, acid-reflux, all names for the same disorder, is a common problem for fibromites. When I have tried easing off the Prilosec, or used other home-spun remedies, the results have been disastrous, and worse than the fibro itself. So the pink pill stays for as long as it works.

The last entrant to the party is Zoloft, or at least its generic equivalent. I finally gave in last spring and decided to try an anti-depressant for both the fibro and IBS symptoms. Zoloft belongs to a class of drugs called selective serotonin reuptake inhibitors (SSRIs). The medication works by balancing serotonin levels in the brain.

Experts do not know exactly how SSRIs work to improve fibromyalgia. But some people with fibro who take SSRIs seem to have improved mood and less fatigue. Similar to treating diabetes with the missing insulin, antidepressants may help recover the brain's ability to respond to pain signals properly. Certain antidepressants can also help regulate abnormal bowel functions like diarrhea and, constipation, as well as other IBS symptoms. The tricyclic antidepressants (TCAs) help with diarrhea and the SSRIs help treat constipation.

The pill organizer is replete. Each cubbyhole is full for another week. Does it sound like a lot of drugs and hype-filled supplements? Maybe, but I know my IBS has improved considerably, my blood sugar is great, I am not suffering from severe-gas, cramps, and acid from GERD, and I have yet to suffer any peri-menopausal symptoms.

Jump-start Failure

Saturday was a gorgeous autumn day. I decided to enjoy the sunshine and take my dogs for a long walk in Naples. When we returned to the car, it would not start. A kind lady let me use her car to jump mine, but nothing. Finally, I called AAA. Three hours later, I was home with my parent's car. My car sat lifeless at the service station until Monday. That's my problem -- lifelessness. I feel like I need a jump-start, but it is just not working.

I exhibited in a holiday show this past weekend, and I overheard two artists talking. It caught my ear, because the one artist, now former-artist, was describing how she would see some form of art, get excited about it, go home inspired, and then nothing. She just froze. Little by little, she tossed out her arts and craft supplies. She could not put brush to canvas.

I could completely understand this. I'm not yet ready to toss out my art and writing supplies, but I understand the freezing. I think about my writing, and my drawing, and I am overwhelmed. I doubt my abilities; I'm afraid to put something on computer or paper for fear it won't be any good; I make lots of excuses. Maybe I need a new starter like my car did.

Excuses, Excuses

I am happy to say that I managed to transcribe two and a half interviews last week. Unfortunately, I"ve done nothing this week. There is always an excuse. This week it is because the weather is nice, and I have a lot to do on the house and yard to sell it, and I have wood to split, and I have proposals to write for freelance work that actually pays, and, and, and...

Well you know how it is. Always a reason to procrastinate. I think the real reason is that I am stuck. If I were really excited about writing, nothing would stop me, but right now, I am agonizing over what voice to use. How many interviews to do? How to organize the material?

I want this book to sell, I want it to be interesting, and I want it to be compelling. So I am waiting for my epiphany, and in the meantime making lots of excuses not to write.

Where Have I Been?

I am back after a long blogging absence. Where have I been? Baking! It took over my life. I committed to two farmer's markets this summer. Little did I know how much time this would consume.

The markets have ended, and I am trying to get back on track. I attended a writers' group meeting earlier this month to get ideas on structuring this book, as well as finding the proper voice for it. I have started transcribing the interviews again. The structure and voice I decide to use will determine how many interviews I need to do. I've already completed eleven interviews. I need to decide if this is enough interviews, or if I need some other perspectives. In many cases, I may need to revisit a few interviewees to get more depth. There are some very compelling stories that merit more attention.

Now that I am back, I hope to be more consistent with keeping this blog up to date.

Pain and Fatigue Meter

A friend of mine just emailed me and mentioned I hadn't posted anything new lately. I am completely overwhelmed and spread too thin. I chose to do two farm markets this summer, but the time spent baking has taken me away from my art and writing. It's time to regroup and get back on track.
All the baking in addition to maintaining a vaction rental and caring for my parents has left me exhausted. I could sleep for a week. I have been working so hard, that it is understandable that I would be exhausted, but it makes me wonder. "Because of my fibromyalgia, is my fatigue the same as someone without chronic fatigue issues, or is it different?"

I wish there was a pain and fatigue meter you could use to compare yourself to others. When someone constantly complains about his aching back, is he just whining, or is he in real pain? Is he experiencing more pain than you can imagine. Is his pain tolerance lower than mine? How do you know? When someone is really tired all the time, is she just a wimp. Does she lack endurance, or is she experiencing a level of fatigue that you can't even imagine?

I often have these self-doubts. I wonder when I ache or feel really tired if I'm just being a baby? I often wish there was a meter that you could use to determine how your level of pain or fatigue compares to someone else. They use those pain scales at the hospital, but that only tells you on a scale of 1 to 10 how you compare to yourself. It doesn't tell you if your one or ten is equal to someone else's one or ten. Maybe your ten is really a fifteen compared to Joe's ten, maybe it's a five.

How do I know that I really have fibro and suffer abnormal pain and fatigue. Sometimes I really don't know. Sometimes I think I am a wimp. Without a meter, I may never know for sure.

Misleading Information

I am in no position to advise anyone on what drugs should be used for treating fibromyalgia, but I do get frustrated when I hear a commercial for Lyrica. Lyrica is one of the few drugs approved specifically for the treatment of fibromyalgia. The commercial drives me nuts "...I felt a deep radiating pain...the doctors diagnosed it as fibromyalgia."

Why does this peturb me so much? First, it implies that fibromyalgia is defined as a deep radiating pain.
I take issue with the "deep radiating pain." "Radiating implies it comes from a central point and radiates out. That just isn't true. Second, it also implies that with Lyrica, all your problems are solved. Unfortunately, it is not that simple.

According to the Mayo Clinic, "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."

It also goes on to state that, "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."

It also mentions that, "Many people who have fibromyalgia also may have:

• Fatigue
• Anxiety
• Depression
• Endometriosis
• Headaches
• Irritable bowel syndrome

Nowhere does the site mention "a deep radiating pain." To complicate matters further, a person does not need to have all the symptoms listed to be diagnosed with fibro. You might have one symptom or many. Also the pain might only occur in very specific parts of the body, not necessarily all over.

For this reason, one drug is not a panacea for all. Everyone tolerates drugs differently and the symptoms manifested by the fibromite ultimately dictates the best treatment which might not even consist of medication.

Keep On Moving

Fibromites share a common sentiment—keep moving. This sounds counter-intuitive for someone who is in a lot of pain and possibly exhausted, but it really isn't. If you can get yourself in motion, everything starts to loosen up. If you get yourself in motion, your mind is most likely on other things than your pain and exhaustion. As long as you keep moving, even if you hurt, you can keep going. If you stop, it's all over.

Heather tries to stay busy, “This week I have been off from school. I really think that that’s the key—having things to do. If I wasn’t doing stuff this week, I would probably have laid around the whole time, gotten depressed. I’ve been applying for jobs in Des Moines so that keeps me pretty busy.”

It’s frustrating for Misha not to be able to keep going. “I’m a fast paced person and when I have to slow down, or when I have a couple of days when I don’t have anything going on I get into a funk. I’ll decide to watch a movie and then two days are gone. Then I get depressed and it’s hard to get back into things.”

Chris believes her hyperactivity is her way of ignoring the pain, “When some people hurt, they just might want to go lie down. I do the opposite. I become hyper. I think if I stay busy it is going to go away. It doesn’t. It is kind of a subconscious thing. I’ll get up really early in the morning. If I hurt really bad, I think the more I move as long as I don’t stop it will go away. I ignore it. Give me my ibuprofen, stick those pain patches on, and keep going.”

According to Francis, "If I don’t get up, if I stop moving I’m in trouble. That’s why I just keep moving. Because once you stop moving and try to relax then forget it."

Summer -

"-and the living is easy." --Gershwin

Summer is a time of sunshine, lounging at the beach or pool, barbeques, and vacations. Summer can also be easier for those with fibromyalgia. Generally, I have found that when the temperatures are warmer, my muscles ache less, but that doesn't mean I won't experience a flare.

Pressure changes, such as those caused by big violent thunderstorms, as well as the lack of sleep that accompany them when one hits in the middle of the night can trigger a flare. Flares can also be triggered by extreme heat and humidity. Add the normal stresses of living, and summer isn't always easy on those with fibro.

This is the first time that I missed a week of blogging. Summer is my busiest time of year. I own a vacation rental, and it takes time to manage the bookings and clean between guests. I took on two farm markets this year where I sell baked goods and my art work. Since I work out of my own kitchen and not a commercial kitchen, the baking can be tremendously exhausting. I care for my elderly parents, and I am trying to keep my writing and art going at the same time.

I ran out of steam. It's amazing how adrenalin can keep you going. Life doesn't stop because I feel tired and achy. I have been extremely tired for the past few weeks, but I had deadlines, so I kept going. I could feel the joints beginning to ache especially my trouble spots, the hips, shoulders, and elbows. Standing was sometimes excruciating. Taking bread in and out of the oven on a peel was very difficult. At times I though my elbow and wrist would give out.

I did it though, but I couldn't keep up the writing or painting. This past week I finally got a little ahead on the baking, and I crashed. After the market on Saturday, I was ready to sleep for a week. I managed a little cleaning on Sunday, but by today, I was pretty useless. I allowed myself some naptime today. I still feel achy, but I am coming back. The heat and humidity are high and that aggravates things. Tomorrow is another market day, and I will have to bake in the morning. Another deadline, another day, and I will meet the challenge tired and achy or not.

Starting Young

Most people, particularly women, are diagnosed with fibromyalgia between the ages of 30 and 50. For those who are younger than that, the diagnosis can have a significantly different affect on their lives, than for older people. Why is this so? I asked Kristy about this. She was in her twenties when she was first diagnosed.

Kristy was diagnosed, out of the blue,  in 2005, "I was 24 years old. I was working with small children and in March of 2004, I was injured -- or so I thought. I was unable to go back to work. I thought I’d take six weeks off and I’d be fine. Six weeks turned into twelve weeks turned into my doctor saying you are not okay to go back to work and you need to start looking at disability options. It wasn’t until I was sent to Strong Allergy Immunology that I was diagnosed with fibromyalgia."

Although the pattern sounds similar to other fibro diagnosis, the difference is in her youth. Kristy went to college so she could have a good career. She worked very hard, "I’m still in debt from going to college. Accepting that I wasn’t going to be able to follow through with a career was panic number one. I didn’t really have a chance to get into the workforce."

When Kristy attended fibro meetings, she couldn't relate. Not only was her career side-tracked, but what about family? "Everyone else already had a family. Who even wanted to date a girl with fibromyalgia? Other people already had children. I didn’t know if that was something that was ever going to be in my future. That was tough.

People would come to the fibromyalgia meetings and say, 'Oh I have such a hard time going to work and then coming home and cooking for my children.' and I’m thinking I can’t relate to that at all. I don’t have a job, and there are no children to care for. I can’t make dinner for myself.

I was very lucky that I found somebody. I found a boyfriend that was willing to accept me as I was. But I’ve also seen relationships break up for middle-aged people with fibromyalgia."

Kristy believes it is different for younger people. "Most of the people I have talked to seem to have gotten fibromyalgia after they accomplished all of these things. I got it before I even got to start."

Intermission: Irresponsible Pet Owners

When I started this blog, my intent was to keep it completely focused on fibromyalgia. That is still my intention, but I must take a side trip to talk about something that really gets my ire up--irresponsible pet owners.

About three weeks ago, on a cold rainy day, my neighbor called. "Laurie are you missing a cat?"

I looked around the room, "No, both of mine are comfortably dry in their armchairs."

"Smart cats. I have a very friendly tiger cat here at the barn. Do you know who it might belong to?

"I really don't. I'm afraid someone dropped off another cat."

I heard nothing more from Clair. Then two weeks later, about 4 am, there was a violent thunderstorm. I heard a cat meowing very loudly. I thought, "Emma, you silly cat, come in out of the rain."

After all my pets have a dog door. Being the prima donna that she is, Emma continued to meow loudly. Finally, I got up, opened the door, and voiced my thought. No response.

Fine! I went back to bed. A few minutes later, I heard "Mrrow, mrrow, mrrow," repeated very insistently.

Grumpily, I got up again, "Emma! Get in here!"

A little tiger-striped cat crawled out from under the car. It ran towards my out-stretched hand and started rubbing its head furiously. I picked it up, tooked it in, gave it some food, and went back to bed. I dreamt about finding a cat.

When I awoke, I thought, "Did I really bring a cat in last night." I walked into the kitchen, the food dish was where I left it, but no cat. I started looking around, and found it curled up on an armchair in the living room. I went down and said, "Hello."

It turned out to be a he, and he was a purring machine. He just wanted to be stroked. I fed all my animals breakfast. Put a litterbox near him, introduced him to it, and started baking. "I can't afford another cat," I mused.

He stayed on that chair all day. He must have been exhausted. Clair came by to cut the grass, and I said "Come here. I think someone you know came to visit." I was right, it was the same cat. He had been leaving food at the barn for him.

So if someone was feeding him, and he had shelter, why did he travel across the road and through the woods to my house? I have two spayed females. Although they are spayed, they still seem to attract the males. Last summer I had two large feral-toms hanging around. Where are they now? Most likely dead. Cats don't last long in the wild. This year I have another feral-tom, and this obviously non-feral tom trying to woo my two females. They aren't interested.

Obviously, the one I took in the other night was dropped off, "Here you go boy, fields to roam, lots of mice, a nice barn to sleep in. Have a good life."

What are people thinking? Most of the feral cats I see in the summer, do not reappear the next summer. Why? They get hit by cars, eaten by coyotes, or perish from disease, starvation, or parasites. Nice long life - one year, maybe two or three, if they're lucky.

My other cat Sophie is also a drop-off. She appeared one fall day. She had no intention of living outdoors. She wanted a home badly. I looked for an owner, but she has been here now almost two years. At least she was spayed.

The problem with the new guy, who I am now calling Spike, is that he is not neutered. He is a young cat with raging hormones. He left the chair after a day and headed out. The dogs make him nervous, but he's lovesick, and especially trails after Emma, bleating his little heart out.

He comes sporadically. He knows he'll get fed and petted, but he doesn't trust Sophie and the dogs. I have quite a few scratches from trying to lure him in as my dogs dart out to see what's going on. I know he's lurking around, but I can't get him to come consistently. He needs to be neutered, before his hormones kill him. Neither Clair or I think he hunts. He doesn't leave remains around like my other cats do. He is not street savvy. Cars scare him to death. All-in-all, he's a nervous little thing who needs a home.

He's welcome here, although the cost of upkeep will be difficult for me. I don't know if I can get him to stay. It is difficult integrating new animals into a family. Emma still hisses at Sophie.

Be responsible. If you can't keep an animal, for whatever reason, find it a home or take it to a shelter. Even if there's a chance the animal might be euthanized, at least it won't end up as roadkill or food for coyotes.