I Can Fly

I went on a long plane ride for the first time since being hit with fibromyalgia. I had no idea how well I would tolerate it. What would changes in altitude do? How would I handle the cramped space?

Flying is difficult under the best of circumstances, and I found it a bit more difficult than I thought it would be. Sitting for long periods of time on a cramped plane is uncomfortable, but unless you are on an aisle seat, getting up to stretch every so often can be difficult. I would have preferred a window seat, since it gives me something to lean against, allowing me to change position every so often. I was in the aisle, so I was stuck in the same position the whole time. I did get up every so often just to stretch a little, but the problem was I was hurting, so getting up was painful and slow. I also had to get up several times to let the other two people out, something I found painful. Overall, I still think I would rather have a window seat, but I have not actually tired that yet. I may be wrong.

Another suggestion I saw was to check as much as possible. Considering how much they charge per bag, that is fine, along with the suggestion that flying first class would also be more comfortable. Many of us with fibro have a more limited budget, though. There is a much better solution.

After flying for six hours, I did not even know if I would be able to walk. What would I do then? My wife chose the best answer. She dropped me off with the skycap. As per prior arrangements that my wife made, the skycap called for a wheelchair, and I was wheeled to the front of the long security line. Standing is uncomfortable for me, and that long line with all my luggage would have put me in a world of hurt. We breezed through, and I was dropped off at the gate.

Not only did this help reduce pain, but lots of noise and busy environments can make me confused. With this, I did not have to worry about figuring out how to get to my destination. Yes, it was strange being wheeled about. Absolutely I would have preferred to go on my own two feet. Was it the smarter course of action? Yes. I avoided a whole host of potential problems. I was moving pretty slow, and being pre-boarded avoided my having to slow down other passengers behind me. It might seem a little selfish to have all this done for you, but it actually makes it easier for everyone in the long run. The horror stories of severe pain and missed flights I read about online came from people who tired to do it themselves. You have to ask for help.

When my wife called about the wheelchair, the person she spoke with had a relative with fibromyalgia so she understood the situation. They took good care of me. The truth is, while I do not want a handicapped placard for the car since I do not drive when I am in that rough shape, there are times when I am handicapped. Denial is not an answer. Admitting that I have limitations was the smart thing to do.

For luggage, I had a bag with wheels and an expanding handle. That was great, as I could put my computer bag on top and wheel it easily about. It all fit easily on the plane.

I did not seem to have any problems with the changes in pressure, nor did I find many others online complaining about problems with that. I was flying from one side of the country to the other, so there was a three hour time difference. I had no problem with this, but I never have had either. Just as before, I always synched up almost automatically to the time zone I was in. Those who have been bothered by Jet Lag in the past should follow the usual recommendation for dealing with it, as it could be worse with fibro.

Overall, while I was dreading it ahead of time, I am glad that I made the trip. It was more difficult than in the past, but not so much so that there is any real excuse not to fly and deny myself the new experiences and adventures that come with travel.

The Great Medical Marijuana Experiment

In California, medical marijuana is legal. It is still illegal at the federal level, which stifles research nationwide. There are huge gaps in our knowledge about the medical use of marijuana because of this. From my readings, it did seem to help some people with fibromyalgia. I decided to do some experimentation on my own. I will continue to document what I am learning.

Keep in mind that I have never tried marijuana and have no interest at all in smoking anything. I have a friend very familiar with this area, so I turned to her for information. Marijuana is available from the dispensaries in several forms. Besides the smokable product, there are tinctures and edibles. I decided to try the edibles.

There are a wide range of edible products available. My initial products were a caramel, a brownie, a cereal bar, and a chocolate bar.

There are two main types of marijuana used in these products, based on the two main sub-species of Cannabis sativa L. These are indica and sativa, and there are also cross-breeds containing the properties of both. Indica dominant strains are higher in Cannabidiol (CBD), sativa dominant strains are higher in the THC cannabinoid.

What I was looking for was something to help alleviate the pain when it becomes so bad I can neither function nor sleep. Normal pain killers are ineffective. So, which is best, sativa or indica? Here is what the Canadian AIDS Society had to say:

“The different strains of cannabis contain different blends of cannabinoids. Many people report experiencing different medicinal effects from different strains. There is not much research into the medicinal effects of different strains. Most people rely on word of mouth and trial and error to choose a strain that works for them. Your best bet is to try one to see how it works for your symptoms."

The general belief is that indica is best for pain relief, although it is also believed that the opposite is true for some. I began with indica.

I waited until I had some fairly harsh leg pain, the kind that experience has taught me tends to hang around awhile and makes it difficult to sleep. I tried a caramel, which had about a gram. I had ¼ piece. Within about 45 minutes the pain was diminished.

I did not feel high or any sense of euphoria. When I got up, I did have the spins. I was able to sleep soundly. The next day I felt fine.

I did find the taste of the caramel disgusting, but it was just a small amount. Despite the candification, it was still like taking medicine.

Experiment two involved upper body pain that can be quite unpleasant. On night one I had significant torso pain all night that disrupted my sleep. On night two, when the pain returned, I tried one of the chocolate bars. This time I ingested about 1/3 gram.

I did not find the chocolate any more effective at disguising the taste than the caramel. It was still terrible tasting.

This time, though, along with the pain I was also fuzzy. The pain was reduced in about the same amount of time. I still had the spins when I got up. Also, both nights after ingestion as I was trying to sleep my thoughts were very discordant. My brain spun from thought to thought without being able to focus on anything, like giving my wife the remote as she spins though channels. Since sleep was my goal, this was not a problem.

The next morning after the larger dose I did feel less clear headed, but since I also had fibrofog issues, I can not say for sure whether the dosage impacted me the next day or not.

On day three, I again had the same torso pain which impacted my sleep. So, it does seem that on three days in a row with similar pain patterns, on the middle day I did get pain relief from the dosage I took.

This is a big deal since nothing, absolutely nothing, has done anything for the pain in the past. It is still early in the testing, but it does appear to help significantly with the pain. I am not so sure I am all that functional with it, as the spins makes walking a little difficult and I have not done any testing to see if I can get both pain reduction and functionality enough to do things like write. At this point, it does seem to reduce pain enough to let me sleep, and that is a big deal.

Fibrofog is NOT like Alzheimer's Part 2

Last time, we looked at Alzheimer’s in general. This time we look more specifically at early stage Alzheimer’s and whether there are any similarities to fibrofog. The reason this is important is to help alleviate some fears that people with fibromyalgia might have that they also have Alzheimer’s.

The first thing to keep in mind is that Alzheimer’s tends to strike people 65 and over. Early onset Alzheimer’s with those under 65 is much less common, According to the Alzheimer’s Association, only 4% of Alzheimer’s cases are early onset.

Fibrofog comes and goes. You can be mentally foggy one day and perfectly fine the next. Alzheimer’s is progressive. Things just get worse. There may be a day when someone with Alzheimer’s seems better mentally. This is due to the brain rerouting a function from a damaged area. This will be temporary, as the brain continues to deteriorate. 

Here are some of the early warning signs of Alzheimer’s from the Alzheimer’s Association. I’ll quote them and follow each one with c”


“One of the most common signs of Alzheimer's is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own.”

If my wife asks me to do a task over the phone on a day that I am foggy, the moment I hang up the phone, the chances are I will forget immediately upon hanging up. The way we cope with this is that I begin the task while we are still talking on the phone. Even when I forget, I probably will remember later. In Alzheimer’s, they probably won’t remember later because the information never gets properly stored in the brain. In fibrofog the communication in the brain just gets screwed up and you may not be able to access certain information or memories at the time, but as you become more clear-headed, memory does come back. In Alzheimer’s, new memories may never be stored, and old memories can be lost permanently.

Some memory impairment is normal as we age. Using memory aides is normal. What is concerning is when memories don’t come back.

“Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.”

This can also be true with fibrofog, but it tends to clear up as the fibrofog lifts. There is an impairment of concentration and the ability to focus- but it is temporary. In Alzheimer’s, these deficits tend to be permanent.

“People with Alzheimer's often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.”

With fibrofog, there are a lot of things you avoid, like driving, until it clears up. It is primarily an inability to focus. Again, it is the difference between something temporary and a more long term deficits found in Alzheimer’s.

“People with Alzheimer's can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.”

The passage of time can become distorted in fibrofog. I have never lost track of seasons, though. Smart phones are great for keeping you on schedule, as it is easy to misremember dates. I do lose my ability to get my bearings. I can be a passenger in a car in an area well-known to me and still have no idea where I am. I have never experienced the bigger issue of not knowing where I am or how I got there. In the car example, I am fully aware that I am in a car, and that I am just disoriented. I have never had the situation of suddenly looking around a room and not knowing where I am, nor have I heard of this happening with others with fibrofog.

“For some people, having vision problems is a sign of Alzheimer's. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror.”

While I do have occasional perception problems when foggy (weird flashes of light caused by persistence of vision, misinterpreting letters in words), but nothing to the extent of not recognizing my own image. I am also very aware of the perception problems at the time and that they are just a by-product of my fogginess.

“People with Alzheimer's may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a "watch" a "hand-clock").”

You can have all these problems with fibrofog. It makes going to parties when you are foggy very difficult. In addition, my sound sensitivity can make hearing individual voices very difficult.

“A person with Alzheimer's disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.”

This can be a real problem with fibrofog. It is different though in that you do not forget where you put things, necessarily. I might remember distinctly putting the dishes away in the cupboard. My memory is incorrect. The reality may be that I put them away under the sink in the bathroom. What I remember doing and what I actually did are not the same thing. More importantly, once you discover that you do this, you are aware of it. You are careful not to put things away when you are foggy. With Alzheimer’s, they don’t tend to accept this and look to blame others.

“People with Alzheimer's may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.”

When I have fibrofog, I do have poor decision making skills. I often am unable to make decisions at all. I do not handle money if I can help it. I don’t pay attention to details, which includes my appearance. I can easily go out with my shirt mis-buttoned. I am aware when I am foggy, though, and can avoid problems through that awareness. Alzheimer’s is a permanent condition, and often those suffering from it continue to try doing things they are no longer capable of doing, and are denial about the full extent of their cognitive deficits.

“A person with Alzheimer's may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced.”

This is true for both Alzheimer’s and fibrofog along with fibromyalgia. The combination of chronic fatigue, fibrofog, and chronic pain in fibromyalgia where you are experiencing one of these symptoms most of the time does make socializing more difficult. Becoming isolated is a serious problem.

“The mood and personalities of people with Alzheimer's can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.”

For me, the problem was a flattened affect. It was as if much of my personality was gone. That was helped greatly by the Savella. The worst aspects of Alzheimer’s, the suspicion, the fear, the paranoia, the things that turn them into very unpleasant people are not a part of fibromyalgia.
So, there are some similarities between fibrofog and Alzheimer’s, but even more differences. With awareness when fibrofog strikes, it is possible to compensate to a much greater degree than someone with Alzheimer’s. Even more importantly, fibrofog tends to come and go, while Alzheimer’s will only get worse.

Fibrofog is NOT like Alzheimer's

As will be the case from time to time, I have not been able to write for a couple of weeks. Primarily, the cause has been fibrofog, a common symptom of fibromyalgia which causes an inability to think clearly. When I try to explain fibrofog, people often chirp in, “Oh, it’s like in Alzheimer’s.” Fibrofog is not like Alzheimer’s.

The major difference is that Alzheimer’s is a progressive condition brought upon by actual damage being done to the brain. This damage is irreversible. The damage to the brain continues to get worse until it kills you. It is a horrible condition, devastating to those who suffer from it, and it takes a tremendous toll on the caregivers and loved ones around them. Fortunately, the fibrofog associated with fibromyalgia is nothing like that.

Your brain is made up of 100 million neurons that interconnect at over 100 trillion points. It is the signals traveling across the neurons that give us our sense of self, our feelings, our memories, and our thoughts. In Alzheimer’s, these neurons are progressively destroyed, and as they are, the person they create begins to disappear.

We still do not fully understand the cause of Alzheimer’s, but we do understand the damage to the brain that it causes. In advanced Alzheimer’s a view of the brain is rather shocking. The brain literally shrivels up. Here is what is going on. The cerebral cortex shrinks. As it does, it impacts the ability to plan, to remember, and even to think. The hippocampus shrinks even more, impacting the ability to create new memories. The fluid filled spaces in the brain, the ventricles, grow larger as the brain shrinks.

Neurons send out the chemical neurotransmitters to other neurons, a chemical reaction triggered by electrical stimulation. This is how the brain communicates with itself in incredibly complex ways. In Alzheimer’s, several things go wrong with this most basic of brain functions.

A protein fragment, made up of sticky clumps of beta-amyloid and referred to as plaque, builds up between neurons. This can block communication between the neurons. It can also trigger an immune system response, sending out immune system cells that can destroy the neurons.

In the neurons themselves, the normally straight pathways that deliver vital nourishment to the cells become tangled, which can starve the cells. These pathways begin to tangle and then deteriorate entirely, and the neuron dies.

In the beginning of the seven stages of Alzheimer’s, it is difficult to tell the difference between Alzheimer’s and the normal conditions of aging. By about stage 5 things are getting pretty bad. Chunks of memory begin to disappear and Alzheimer’s patients begin to lose the ability to do many day to day tasks by themselves. In stage 6, they lose the memories of recent experiences, may not be able to recognize people around them, can’t dress themselves, become suspicious and delusional (one of the worst aspects for caregivers), and tend to wander and get lost. By stage 7, they are pretty much gone, with little ability to respond to their environment, talk coherently, or control their own movements.

Fibrofog does not lead directly to death. The maximum life expectancy for someone with Alzheimer’s is 20 years, with eight years being the average.  Fibrofog has little in common with later stage Alzheimer’s. But what about the earlier stages of Alzheimer’s?  Are there similarities there? We’ll take a look at that in more detail in part 2.

Adaptation, Little Girls, and the Spirit World

You learn to adapt when you have fibromyalgia. One of the things I do to adapt comes courtesy of two little girls and the spirit world.

Bending over is often painful. If I need to pick something up around the house, I almost never use my hands. I use my feet. I can do this from a standing position without having to bend over. I almost never wear shoes so it is pretty easy. I can pick up almost anything with my toes, and the reason is because of two young girls known as the Fox Sisters.

The two sisters were Margaret and Kate. In 1848, when Margaret was 15 and Kate was 12, they lived in a house that had a reputation for being haunted. The two girls discovered a little trick they could do.  By snapping their toes out of sight against a solid surface, they could make a rapping sound that seemed to come from nowhere.

They explained that the rapping was caused by spirits, and soon were able to rap out letters of the alphabet and other forms of information. They were the first rappers. They would expand this ability and become world famous as mediums. Hundreds of other women would discover that they had the power, aided by a few simple tricks, leading to the rise of Spirtualism both in the United States and around the world.

It would be many years before Margaret and Kate would reveal the trickery that made them famous mediums. They would be old women by then. Countless other mediums would develop their own forms of trickery.

As a young magician, I worked to master the methods of the mediums. I could recreate the spirit rapping using my toes. I could write in chalk on a spirit slate that was under the table, using just my toes. I could use my toes to pick up a bell and ring it. In my teens, I put on séances to entertain family and friends, and my toes came in pretty handy (or toey).

So, a skill I learned in my teens has proven to be quite useful for entirely different reasons.

Hope and Despair

There is a memorable scene from the wonderful film adaptation of Anne of Green Gables between the young Anne and her foster mother Marilla.

Anne Shirley: Can't you even imagine you're in the depths of despair?
Marilla Cuthbert: No I cannot. To despair is to turn your back on God.

Another way of looking at despair, though, might be the feeling that God has turned his back on you. Things seem hopeless. The future looks grim.

“I go dreaming into the future, where I see nothing, nothing. I have no plans, no idea, no project, and, what is worse, no ambition. Something – the eternal ‘what’s the use?’ – sets its bronze barrier across every avenue that I open up in the realm of hypothesis.”
― Gustave Flaubert, Flaubert in Egypt: A Sensibility on Tour

The problem with despair in fibromyalgia, at least for me, is that the despair comes from the inability of my mind to see any future at all, an inability caused by the fibrofog. When the fibrofog is at its worst, the future simply does not exist. I lose perspective and the ability to see forward to the future place where hope resides. I am trapped in a now that is very unpleasant, with the hope of the future inaccessible. Hope is not just distant or far off, it becomes unimaginable. This is true despair.

Unlike degenerative diseases and diseases that offer a very certain fate, fibromyalgia has hope at its very core. Things can change. Even with something that is still incurable and barely treatable, it does not require a miracle for you to feel better. Whatever is tormenting you today may be dramatically reduced or completely gone tomorrow. The symptoms constantly change. They can get worse, yes, but they can and most likely will also get better, at least for awhile. No matter what symptoms I am suffering from, I can hold onto that hope of a future in which things are better.

Fibrofog can strip you of the very hope that is one of the saving graces of surviving fibromyalgia. How do you survive the one symptom that strips you of hope within in a condition where hope is one of the main things that keeps you going?

“Courage is not the absence of fear or despair; it is the capacity to continue on despite them, no matter how great or overwhelming they become.”
― Robert Fanney

The past couple of weeks I have struggled with fibrofog and despair. It has been a difficult time. It is during times like this that I long for, I crave for an unending nothingness free of the challenges of getting through day after day. I have things yet to do in this life, though. I have a responsibility to my wife to stay here for her as long as I can. Running away from life would be cowardly. So that leaves courage. Even when hope is gone, I can still find courage.

Does it take strength to have courage, or does courage give us strength? I believe it is the later. When hope is gone, courage can sustain us through.  It is about fighting for the best life you can have, not just for yourself, but for the people around you, no matter what the obstacles ahead of you are. Sometimes courage can help you find answers to make life better. Sometimes it can just help you hold on long enough until things do get better.

As the fibrofog lifts, as it always does, hope returns. There is a future, and there are days when I can do wonderful things. I just need to hold onto a little courage to help get me there.

A Challenging Diet

Some people have made the claim that fibromyalgia is caused by what you eat, specifically claiming that it is in reality a food allergy. Many of these people have something they want to sell you, such as food nutrient plans and special pills. However, there is no scientific consensus that fibromyalgia is caused by food allergies, nor is that the even remotely prevalent view as to what fibromyalgia is.

There is a little bit of truth in this, though, in that for some people, changing their diet can make them feel better. It won't eliminate their symptoms, but it can help. The reason probably has to do with what we know about fibromyalgia and its tendency to make you hypersensitive to a wide spectrum of things. A hypersensitivity to some types of foods makes sense. The specific food that may be making you worse will vary from person to person. It may also be that a food reaction has nothing at all to do with your specific issues.

I tried a number of things. I cut out caffeine. I cut out artificial sweeteners. I cut out fish. The last was easy, because I don't like fish. My system was easy to follow but rather unscientific. I had no effective way to really know what was going on. What should I eliminate from my diet? How long should I cut something out of my diet before I decide it does not make any difference? Is there a more rational way to go about discovering if something in your diet is making things worse?

It turns out that there is. Before we get to that, though, we need to understand what a food allergy is. Generally, it is an adverse reaction to a food protein. It is more complex than that, because we are also dealing with metabolic conditions such as lactose intolerance. Exactly what you are reacting to can be difficult to determine. The composition of foods is complex, and we throw in additional additives and chemicals. Food reactions can be immediate or they can take up to 28 hours.

There is a scientific approach to figuring out what is causing you problems if you suspect a food allergy is making you worse. The complete plan is described at Elimination Challenge Diet, developed by the Jefferson Myrna Brind Center of Integrative Medicine Protocols. It was developed in 2007.

The idea behind it is quite simple. In the first phase, you eliminate from your diet the leading culprits: sugar, dairy, wheat,alcohol and caffeine. In the second phase, you eliminate other likely allergenic foods, including corn, peanuts, soy and other gluten grains (rye, barley, oats), eggs,

citrus, yeast, and all fermented foods. You will be off of these foods for a week.

Once you have been off of the foods, they guide you through the process of reintroducing them in a specific order so that you can track if any of them seem to be causing you a problem. When you do notice a reaction, you stop reintroducing foods and eliminate what seems to be causing the problem until that problem has resolved itself. Then you continue reintroducing new foods until you have restored your diet, but without any f the problematic foods.

It seems to be an intelligent and scientific process for figuring out if a certain food is causing you a problem. This is a general food testing protocol. I have read nothing about its use for people with fibromyalgia. So many of my symptoms come and go, I wonder if food allergy reactions are consistent or if they are more pronounced at certain times. If this is the case, then the effectiveness of this protocol would be diminished. Even so, it still seems like the best approach I have come across so far.

No Sweat

One of the useful aspects of trolling the Internet about this topic is discovering yet another symptom that others share with you. It is good to know that you are not alone. Here is another in the long list of odd symptoms that is seldom mentioned in the larger lists of symptoms.

I have a friend who has no sweat glands. She does not sweat. It can be a real problem on hot days as she can easily get overheated.

There are times when I would not mind her condition, though. Guess what? Another of the weird and often inexplicable symptoms of fibromyalgia is excessive sweating.

I try to act normal around other people. I try not to wince at the pain. I try to stay focused on the conversation. And then, for no reason, it feels like the entire inside of my head heats up. Sweat begins dripping from my forehead. I can't hide it. Its just embarrassing. It seems like FM just does not want to leave me with even a little dignity.

As with pretty much everything else with fibromyalgia, there is no real explanation for this. Excessive sweating is technically called hyperhidrosis. It is random and not related to the temperature of the room. Most people with hyperhidrosis do not have excessive sweating when they sleep. Interestingly, like so many of the symptoms related to fibromyalgia that can also be stand alone conditions, the cause of primary hyperhidrosis is not understood.

I am unaware of any particular trigger for me. In general, though, many things seem to trigger hyperhidrosis in people. Certain foods and drinks, nicotine, caffeine, smells, as well as nervousness and excitement can trigger a case of extreme sweating.

For me, it usually tends to affect my head and face rather than my whole body. It is common for it to be localized, including the face, armpits, feet, and the palms of the hands.

I've read of some women describing it like having a hot flash. From reading descriptions of hot flashes, that does seem to describe the sensation.

Death

I used to fear death. I don't anymore. I used to want to live a long life. I don't anymore.

Part of the reason I no longer fear death may be that I already went through the process of believing that I was dying. Doctors could not tell me what was wrong, but I was convinced it was most likely terminal. This is not an uncommon phenomena amongst fibromyalgia sufferers before they get a diagnosis. Your mind simply can not believe that anything causing that much pain is also not killing you. You feel like the pain is killing you. I still get bouts of that level of pain and even though I know what it is, it is still hard to believe that something that hurts that much is not going to lead to death.

Fibromyalgia does not lead to death. The leading cause of death amongst those with fibromyalgia is suicide. It is ten times that of the regular population, according to a Danish study. A U.S. Study published in January 2011 in Arthritis Care and Research showed an increased cause of death for those with fibromyalgia from suicide and accidents, whether they are intentional accidents or simply caused by some of the aspects of fibromyalgia like loss of balance or fibro-fog.

I have great sympathy for those in chronic pain with no hope of getting better. Presidential candidate Rick Santorum's callous lies recently about the Swedish euthansia laws really bring this home. Santorum claimed that euthanasia accounted for 10 percent of all deaths for the Netherlands and that, in half of those cases, patients are euthanized involuntarily. That could charitably be called a lie.

In the Netherlands, euthanasia accounts for less than 1 percent of all deaths. No person can be euthanized unless they have expressed a desire to die on multiple occasions and at least two doctors confirm that the patient is either terminally ill or in unbearable pain. Even afterwards, there is follow-up to ensure that all laws and safeguards have been followed. It is humane and a model for the way chronic unrelievable pain should be handled.

I have been in horrific pain that makes me little more than an animal. I can't think clearly- I can barely think at all. All there is is pain. All I can think of is the one saving thought that it will end. For people where pain like that won't end, there is no point in being alive. You get nothing from it. You can not enjoy life. You can not contribute to life. You can't have relationships with others. Your life is only about the pain. Forcing people to continue in that condition with no hope of recovery is torture.

If you have never been in that kind of pain, you can not understand it. It changes your perspective. A life of tortuous pain is not a life worth living. I get relief from it. It comes and goes. If that level of pain was constant with no hope of relief, there is no doubt in my mind that I would check out and have no second thoughts about it.

Life should be about the quality of your life, not about how long you live. I do not expect to live that long. Even with other drugs to help, I know that the Savella is putting a strain on my heart that will reduce my lifespan. I don't care. I would rather have a shorter life and be able to do more than a long life I can not enjoy and that brings me nothing but misery. What is the point in that?

Cannabis

Cannabis

I have to admit that I am very unqualified to write about cannabis sativa. I have personally never tried it. In fact, I have never even tried alcohol. I am someone who never likes to be out of control. I sure picked a great condition to have.

I am not a pro-drug person. I have seen the devastation that illegal narcotics can cause. I have also seen the devastation that alcoholism can cause. It has personally impacted my life. Meth destroys people. I never want to see recreational drugs advertised or promoted. However, our current so-called war on drugs is a complete failure that creates crime and does a terrible job of helping people who become addicted.

I have little problem with marijuana. Here in California, medical marijuana is legal and easy to get. A good percentage of the people I know use it recreationally, and for the most part, I see it causing no problems in their lives. It makes little sense that people have to go through the rigamarole of claiming to need it for medical purposes. Alcohol is many times more potentially destructive. I'd rather marijuana just be out there and taxed. Our State could really use the money.

From everything that I have read, it has enormous medical value for reducing pain and nausea. Sometimes just having the pain levels I get makes me nauseous. Relief from that alone might be nice. As a non-smoker, I can't imagine smoking it, but I have friends who have made it into brownies and other edibles.

The problem is that because of our insane anti-drug laws and pathological anti-drug attitudes, the medical research on marijuana is lacking. The FDA has not approved smoked marijuana for any condition or disease in the United States, largely because good quality scientific evidence for its use from U.S. studies is lacking. The reason good quality research is lacking is because it is so difficult to do, since the government classes marijuana as a dangerous drug. Patients have to stay in a hospital during drug trials, making research very expensive. The DEA declared last year that marijuana has no accepted medical use, despite the fact that this is empirically untrue and not based on science. Even with all the restrictions on research, clinical trials have been done that seem to point towards therapeutic benefits for treating nausea, sleep problems, muscle spasticity and pain.

There are some drugs derived from marijuana. They are a lot more expensive than just smoking it, though. Fibromyalgia patients were treated with a synthetic form of marijuana, nabilone, and they showed significant reductions in pain and anxiety in a study published in The Journal of Pain in 2008. It is not FDA approved for fibromyalgia in the U.S., and even if it were, the drug is very expensive. That is a long way from something you can grow in your own backyard cheaply.

Experts complain that it is difficult to control dosages since different plants can have different levels of active ingredients. Does that really matter, though? If people are reporting relief, considering the relatively low cost, perhaps that should be taken into consideration. Considering the incredible diversity in fibromyalgia and the different types of pain, perhaps an exact dosage is not even possible to discern.

There is a site where people self-report the effectiveness of various treatments for fibromyalgia called Fibromyalgia Treatment Reviews. It does include those reporting their experiences using marijuana, the most reported treatment on the site. Keep in mind that self-reporting is biased and self-selecting. People are more likely to report a positive effect, and less inclined to take the time to report a negative effect. It is not scientific, nor proof of efficacy, but it can provide a general idea of how people experience it.

Here is what I have read about using marijuana from the above site and others. Keep in mind that I have no personal experience at all. One person reported that it reduced her night time pain from a 9 to a 4. For some relief came about 30 minutes after ingesting a brownie, and others reported almost instant relief. Most importantly for me, I read about people who went into serious flare with the kind of incredible pain that I sometimes get who did find relief.

I have no interest in ingesting marijuana every day. However, I am desperate for something that will get me through those periods where I feel like I can barely survive the pain. It has been a difficult decision for me, since I have so long avoided any form of recreational drug, but I have decided to have some on hand for my next major flare. I will report the results here.

It's Not Your Fault

One of the things that makes fibromyalgia so difficult for so many is the way the people who suffer from it are treated. There are lots of people, ignorant and mean spirited though they may be, who take great delight in telling fibromyalgia sufferers that it is all in their head, that they are malingerers, that they just want attention, that they are wooses. You'll find this all over the Internet, often tinged with a strong dose of misogyny as well. Even some doctors are on board.

Especially when sufferers are just starting to do their research and trying to get a handle on all of this, these claims are very hurtful. It cuts deep because fibromyalgia is so strange, so inexplicable. You suffer from pain for which there is no cause. You can't help but wonder if this is all in your head. What is happening to you makes no sense. It is as if your body has betrayed you. You begin to feel as if it is somehow your fault.

The fibromyalgia deniers are not well-meaning. They seem to take joy in attacking the people who are already suffering. But then, you have friends and family who all want to offer advice. They are well meaning. They really do want to help. They encounter a snippet of information here and a snippet of information there and they are anxious to pass it along. They want you to be better.

It usually comes down to some variation of this advice: I heard that someone did this and it cleared up their symptoms. You ought to try it and you might be all better.

They are grasping for a cure and they want to pass it on. If only you try this, you might be all better.

It doesn't work that way. There is no cure for fibromyalgia. There are cases of spontaneous remission, but there is no cure. There is no drug you can take, no change you can make in your diet, no lifestyle change, there is nothing you can do to cure yourself. You can do things that might make you feel better, but there is no cure.

If you have fibromyalgia, it is not because you did something. It is not your fault. It is just something that happens to some people. The advice that people often give you unintentionally dumps responsibility for the condition back on you, as if you could cure yourself if you would just follow their advice.

I constantly have been given advice, usually stories about someone they know who tried something and it cured them. I can't know whether this person was even properly diagnosed, or if they just went through a period where their symptoms were diminished- something that happens normally to many regardless of what they do. These are second hand stories that medically mean nothing. Lots of people are searching for treatments and for a cure. If something was actually working for a wide range of people, it would pop up on the medical sites that cover this sort of thing. It would appear on the fibromyalgia sites where people report their actual experiences. Nowhere has anyone reported an actual cure.

Here is what we do know helps. Get enough sleep. Get some exercise even though it is painful and difficult- just don't overdo it as that will makes things worse. Eat a balanced diet. Try to reduce stress. When you look at these things, they are lifestyle choices that are good for everyone. It is not surprising or a mystery that these help.

Everything else seems to help some people but not others. Could you have a food allergy made worse by fibromyalgia? The literature I've read seems to indicate that is very possible, and cutting out that food could make you feel better, but it is as individual as are food allergies across the general population. You'd deal with it like any food allergy. Can Yoga help? Maybe. Some people report that drinking green tea helps clear their head. If it is inexpensive, many things are worth a try. They may not offer a cure, but they might make you feel better. These all tend to be things that also help the general population.

If it costs money, though, I am a bit more skeptical. The problem is that there are so many supposed treatments out there that you can spend a fortune trying them all. If you have the money, fine. A lot of people with fibromyalgia who find themselves no longer able to work are in dramatically reduced financial positions, though. They have to be very careful how they spend their money.

Should you try FDA approved drugs for fibromyalgia? Absolutely. They don't work for everyone, but Savella made a huge difference for me. If your insurance covers it, it is worth a try. The advantage with an FDA approved drug is that someone has actually tested it to make sure it works. Most of the suggested treatments you'll find on the Internet, though, have not been tested. Some are out there as a scam. Some are just based on someone's word of mouth, and with no scientific testing and controls to rule out other factors, it is meaningless.

We'll talk about how quack cures work in a future entry.

Riding it Out

There have been no postings for a few days because I caught a cold. My wife caught the same thing at the same time, so we were both down with it. The difference for her is that she can take cold medicines. The drugs I am on do not play nice with other drugs. I can't take decongestants or other types of drugs that you typically take with a cold or flu. I just have to ride it out.

That is sort of the essence of fibromyalgia. When a symptom hits, there is nothing I can take to make that symptom better. I ride it out. There are things you can take on a regular basis that might reduce your symptoms in severity overall, but nothing you can take that I am aware of on a symptom by symptom basis. If I get pain, pain killers have no effect. When I get foggy, I can't just pop a pill to clear my head. When exhaustion hits, I can't chug a five hour energy drink and feel reinvigorated (although some people report that this helps, while others report that it causes a bad crash afterwards).

Getting a cold or flu is just like everything else. I just have to wait for it to pass. It finally has, and I am back to posting.

More Symptoms Part 2

This is the second part of my commentary on a long list of symptoms associated with fibromyalgia. See Part 1.

Teeth Grinding

I do notice I do a lot more of this since getting fibromyalgia, or at least, I am a lot more aware of it. My jaw often feels clenched. I had not thought of it as a symptom though until I read this list. I dismissed it as more a result of the constant stress my body is under when I go through such a dizzying array of unpleasant symptoms. Teeth grinding has an official term: Bruxism. It is considered a sleep disorder. Why it should be worse with fibromyalgia, especially since it is often considered a habitual behavior, I do not know. I notice it happening and have to consciously relax my jaw. I can only assume that it also happens when I sleep. It is associated with Parkinson's, which is also a central nervous system condition, so there may well be some connection.

Abdominal Problems

I've already written about the IBS problems. Other symptoms include bloating and nausea, abdominal cramps, and pelvic pain. I get nausea when my pain levels get too high. IBS includes pain and cramping, but the difference is that a bowel movement can relieve the pain, which can be quite intense. You can also get pain and cramping for which there is no relief.

Twitchy Muscles at Night

I do get this from time to time. It is annoying.

Sensitivity to Stimuli

There are a lot of things you can have a high sensitivity to. These include odors, light, and noise. For me, a lot of noise is the problem. It can send me into sensory overload. As is common in fibromyalgia, I am extremely sensitive to changes in pressure, although less sensitive to changes in humidity and temperature. If a storm is coming in and the barometer changes, I know that I am going to be very adversely affected. It is the only consistent trigger for my symptoms I have discovered. When we went away to Las Vegas and we knew when the storm was coming in, we just planned for me to be down while that was when my wife went out to gamble, an activity I have little interest in. That worked out great. We want to go back to Hawaii, though, and I have no idea how I'll be able to a adapt to that climate.

Sensory Overload

Sensory overload is a problem. If I am already having cognitive difficulties, going into a mall can be a real problem. The sound and movement floods my brain and overwhelms it, making it difficult for me to maneuver. Sometimes I just have to stop and let the crowd flow by me before I can continue forward. Sensory overload can also happen at parties. I may have to just sit down someplace quiet or go outside to let my brain reset.

Heart Problems

My problems with tachycardia were caused by the Savella. I do get the reported rapid, fluttery, irregular heartbeat, but I don't know how much of that is caused by the constant balancing act between Savella and Metoprolol to keep my heartbeat from racing out of control. I have certainly had the pain that mimics a heart attack, which sent me to the hospital before I understood what it was. This is one of the more frightening pains you get with fibro. I do not know whether my intense chest pain was caused just by fibromyalgia, or an overlapping condition common to fibromyalgia sufferers called costochondritis. That is an actual inflammation of costal cartilage in the ribs which is very painful. Why they often occur together is still unknown. Some believe that fibromyalgia somehow makes costochondritis chronic, while others believe that fibromyalgia simply mimics costochondritis.

There is also something called mitral valve prolapse. Wikipedia describes it as “a valvular heart disease characterized by the displacement of an abnormally thickened mitral valve leaflet into the left atrium during systole.” None of that sounds good, nor is it very clear. Put simply, you have a floppy valve. It seems to effect up to 75% of people with fibromyalgia. That is in contrast to an incidence of about 3% in the general population. Why? You know the drill. We don't know. It can cause some problems, like backflow of blood from the ventricle to the atrium. In serious cases, this causes an enlargement of the cardiac chambers, a weakening of the heart, and heart failure. While it is something to be aware of, it only becomes a serious concern for about 5% of the people who have it. I have even read reports that seem to indicate that those with MVP tend, in general, to live longer than people without it, even factoring in the relatively rare incidence of dropping dead from it. Still, for a condition that is considered to have a large genetic component, it is odd that it effects so many with fibromyalgia. As of now, science offers us no real answers, and it could just be coincidence.

Panic Attacks

Not so far. Well, I may have gotten panicky when it felt like I was having a heart attack, a not uncommon symptom, but I wouldn't call it a panic attack. It was the heart attack like pain that triggered the panic, and not vice versa.

Mood Swings, Unaccountable Irritability, and Tendency to Cry Easily

The crying thing, not so much. Recently when I had been hurting a lot for days, had had little sleep, and the kid in the next booth was kicking back of my booth, I turned and yelled at him to knock it off. It may not have been wholly appropriate behavior, but I would call it accountable irritability.

(Part two of two)

Read Part 1

More Symptoms Part 1

Fibromyalgia has a huge range of documented symptoms. Exactly what is a separate but overlapping condition can be difficult to figure out. You are not going to have all of these symptoms, and you won't have them all of the time as they tend to change as constantly as your pain does. Some might be frequent, some might be only occasionally.

In this entry I am going to select symptoms from a huge list compiled by Adrienne Dellwo, the FM guide on About.com, which incorporates the work of fibromyalgia expert Devin Starlanyl along with other recent research. I am adapting her list and incorporating my own perspectives about it. I am leaving out a lot of the stuff I have already covered.

Since this entry is my reflections on the different symptoms, as a male I am leaving out the symptoms that only impact women. These include the PMS and painful menstrual problems. I am also leaving out the cognitive problems as I will go into more detail about those in a separate entry, including the issues I have had with dysphasia. I am also leaving the pain issues, since we cover that a lot, and

Other family members with fibromyalgia

I have an aunt who was diagnosed, but who was later rediagnosed as suffering from lyme disease. Her symptoms as described to me second hand since we are not close were different from mine in many ways. However, it is believed that lyme disease is a possible trigger for FM, so who knows what she has at this point.

Vision Changes, including rapidly worsening vision

My eyes are still pretty good. I read tiny type without glasses. I do get a very odd and selective form of double vision, though, that works in two directions. I may see two birds vertically sitting and two wires horizontally. The two birds are sitting on the same wire, while there is a duplicate wire running horizontally below that without any birds on it. This is in my backyard, so I know there is only one wire there, and I know that two identical birds do not move together in such synchronicity. It looks very real, though. Other things in my line of sight are not duplicated. I notice this most with vertical or horizontal lines, such as in an antennae which will appear to have more bars in it than I know are actually there. This double vision thing has only hit me a few times, but it is profoundly strange because as much as I know what I am seeing is not real, it looks very real.

Sweats

I frequently get hot, almost feverish, which leads to sweats. It feels like my internal furnace gets ramped up.

Unexplained Weight Loss or Gain

I can actually explain the weight gain part. I do not exercise as much as I use to but I still enjoy eating just as much. I would not mind the unexplained weight loss part though. That just seems to take actual effort as an explanation.

Cravings for Carbohydrates and Chocolate

That may be another explanation for the weight gain thing which I really have to battle. I do have these cravings, I think more than I used to. That may be unscientific, though, as I have always loved chocolate.

Headaches and Migraines

Check. I definitely have more frequent severe headaches than I used to.

Fibrocystic Breasts

This is associated with actual lumps as well as with heightened sensitivity. I do breast self-exam, as my father survived breast cancer by catching it early. I have not found any lumpy or tender parts. However, my nipples get painfully hypersensitive to the point where even wearing a shirt is uncomfortable. They are so sensitive even moving air can be painful.

Muscle Twitches

I live in earthquake country, and have been through a lot of earthquakes. There have been many occasions where I felt as if I was experiencing a mild earthquake, but I looked around and saw no movement of anything, heard none of the sound that typically accompanies an earthquake, and it went on for several minutes, which earthquakes do not do. I knew it was not an earthquake, but I had no idea what it was other than something really strange my body was doing. This always happened while I was lying down in bed. It happened while I was wide awake. This seems to be what is referred to as internal tremors. It effects some premenopausal women, and some 40% of Parkinsons patients. It has pretty much gone away as a symptom after I started Savella.

Diffuse Swelling

I do get frequent swelling in my hands.

Shortness of Breath

Much of the time.

Earaches and Itchy Ears and Ringing Ears

Not so much. Then again, I do get the super hearing (See My Super Power)

Allergies

This one makes sense, since so much of fibromyalgia has to do with hyper reaction. I am now extremely allergic to air borne stuff, with watering eyes, sneezing, and congestion. Sometimes it feels like I am allergic to air. In allergy season it can get quite bad, and I can't take any of the medications because they don't play well with the other meds I am on.

Miscellaneous 

Here are a bunch of symptoms I do not, thankfully have to deal with: Hemorrhoids, nose bleeds, hair loss (a big deal for me since I am the only male in my family not suffering from male pattern baldness), mottled skin, nails that curve under, easy bruising and scaring, non-cancerous tumors, adhesions, ingrown hairs, heavy and splitting cuticles.

Part 1 of 2

The Unwinnable Battle

I fight fibromyalgia every step of the way. I have adapted, found workarounds, and figured out how to be productive even under some of the worst of the symptoms. All of them, that is, except for one.

So far, there is one symptom I can't beat. It takes over and renders me helpless. I have discovered nothing that I can do about it. Once it hits me, I am down for the count. I can do nothing.

Unfortunately, it is also one of the big three main symptoms- fatigue. While the fatigue common in fibromyalgia is often referred to as chronic fatigue, what I am talking about here is better described as super fatigue. Yes, the pain of fibromyalgia keeps you tired much of the time. But that is not what I mean here. This is not about just being tired.

I can feel it approaching like a rushing freight train bearing down on me. With some sustained effort I can fight it off for an hour or two, but it will eventually hit me, and once it does, that is it. Imagine suddenly feeling like you have not slept in days. That by itself is physically painful. I ache all over. I have to lie down. Once I do, I am gone. Unconsciousness comes quickly, and usually lasts for two or three and sometimes more hours.

When I awake, I do not feel refreshed. It is more like coming to after a beat down. I still ache all over. I move sluggishly. I often feel some nausea. The image that has often popped into my head is of Han Solo falling out of the carbonite capsule and plaintively uttering “I feel terrible”.

Many people with fibromyalgia deal with fatigue, and when you look at lists of symptoms, they typically include Chronic Fatigue Syndrome. CFS is a similar, perhaps overlapping or related condition to fibromyalgia that is also little understood. Many of the symptoms of CFS are often found in fibromyaligia sufferers, but that could also be due to the fact that fibromyalgia has so many symptoms that it is bound to have many in common with other conditions as well. CFS is also almost impossible to diagnose. Unraveling CFS from other conditions that can cause chronic fatigue is also difficult.

Like fibromyalgia, there is a lot of controversy about what exactly is going on. Right now, even less seems to be known about CFS than fibromyalgia. There is no approved drug treatment. The few treatments they do have, like cognitive behavioral therapy and graded exercise therapy, have limited results and make some patients worse.

One therapy for CFS that does seem to help is called pacing, a form of energy management. It is based on the observation that patients become worse after minimal exertion, so they essentially teach people to learn when to stop and rest so that they do not do a level of activity that triggers their symptoms.

A study published in the journal PLoS One last October from Haukeland University Hospital in Bergen, Norway, seems to provide evidence that CFS is an autoimmune disease. Injections of the cancer drug Rituximab, a drug that suppresses the immune system, relieved chronic fatigue symptoms in 10 of 15 patients. There were also studies in 2009 and 2010 that seem to link it to a viral cause, thus boosting the autoimmune theory. This also makes a lot of sense since so many have reported flu like symptoms before the onset of CFS. The research is not conclusive, yet.

For me, though, I have not observed any relationship between physical activity, the amount of rest I have had the night before, or any other factor. The super fatigue comes, usually in the late afternoon, and usually in a cluster of several days in a row. It then goes away for awhile. It may come during periods of pain, or even during periods when my pain levels are relatively low. I may already be feeling tired, or I might be feeling fine. I am skeptical that there is a specific easily observable trigger for it.

When I read about CFS, I don't feel that it really describes what I go through. I am tired a lot, but I am in a lot of pain much of the time and my sleep does get disrupted from that, which would also be a reasonable explanation for fatigue by itself. When I get hit with the super fatigue, it is nothing like just being tired. It is like nothing I have ever experienced before, except perhaps for the time in my twenties when I worked three straight days without sleep doing the hard physical labor of rigging and lighting a stage show. At the end of that I was also down for the count, unable to think clearly, unable to remember if that round thing I last ate was a hamburger or a donut. I hurt all over. The difference was that I can get a similar feeling not in three days of constant labor, but in a very short amount of time no matter how rested I am.

While fibromyalgia and CFS are often linked, my personal experience leads me to see them as two very different things, and the body of evidence seems to be moving in that direction as well. I do not feel that I actually suffer from chronic fatigue. Ii makes more sense for em to explain that I suffer from bouts of super fatigue, and it is the one thing I can't beat or overcome.

In Praise of Tech

It has been 40 years since the Internet was first switched on. Without it, I would not have discovered Savella. Without the online forums, I would not have known the difficulties of getting started with Savella and probably have quit before it became effective. Without being able to do research on the Internet, I would not have learned so much about how to cope with fibromyalgia and what to expect.

I am not in the larger percentage of people with fibromyalgia who can hold down a regular job. That does not mean that I want to stop being productive. I do want to work. Technology makes that possible as well.

In fact, my current career as a writer is because of technology. Many years ago I was performing on stage and doing live presentations for companies that became increasingly more technologically sophisticated. Then I got hit with pericarditis that knocked me down for months. We had a very primitive by today's standards Radio Shack laptop at the time, since I traveled so much. It allowed me to write from bed, and I began writing about using computers for presentations and video and submitting the articles to magazines. A very lucrative technology writing career emerged from that, with less work for more money and a lot less travel. I have been writing professionally ever since.

My current laptop is not only far more powerful than my first, it also connects me to the world. On days when I can not get out of bed, I can do research easily accessing resources that would have been nearly impossible to get to even ten years ago. I can do almost anything I can do while sitting at my desk, including sharing files between all of my computers.

It is, though, a big and not particularly lightweight laptop. There are some days when the pain is so great that the weight of a laptop physically on my body is too much. For that, we have a slightly less capable but very light weight netbook.

There are days when my range of motion is too limited and sensitivity is to high even for that, and that is where my smartphone comes in. With Internet voice commands, I barely need to move at all. I can do my research just using my voice, without any typing. I am amazed how well it works. Even on days that combine fuzziness with pain and very limited motion, I can search for articles, save them to Dropbox, and follow up later from my main computer when I am doing better.

Technology is like magic was for me back in the days when I was designing magic illusions- it is still amazing even though I know how it works. I am grateful everyday for the many innovations that make my life so much easier.

There are so many simple technologies that make life easier. Bending over is often a difficult thing to do when you have fibromyalgia, as is lifting or moving around anything heavy. One of our great purchases was a Bissel Versus, an ultra-light battery powered vacuum that I can easily move around and use standing up even on a painful day. It is perfect for getting up the cat hair from our beautiful but ridiculously furry Norwegian Forest cat. A full sized vacuum is out of the question, moving around a cord and plugging it in hurts, and a hand model would require too much bending. This is perfect.

I also love remote controls. I have a small heater under my desk. For most people, bending down to turn on the heater is a trivial task, but for me that can be quite painful. Picking up the remote on my desk is so much easier. There is also a cooler that blows air on me, but it is further away. I have full control over it from another remote so that I don't have to get up and walk over to it. The hardest part for me is when I first get up, so this is an enormous help.

When I went through over a year of almost continuous fuzziness, it was my computer and Photoshop that saved my sanity. I was so fuzzy I could barely do anything, and yet I discovered that I could do image clean up, perhaps even faster and better than when I was clear headed. Thus began a project that would involve the digital cleanup of over 30,000 paintings, drawings, and photographs and become the core for the five part history of censorship I had begun. Part one will be released in the second quarter of this year, the first truly productive and creative thing I have accomplished in years.

Now what I am waiting for is for Google to perfect their self-driving car technology so that I can get out of the house even on days when I am too fuzzy to drive. I love technology.

My Super Power

There are many downsides to fibromyalgia. But I did get a super power. Unfortunately, it was one that I really did not want. I got super hearing.

Sure, it sounds cool to be able to listen in on distant conversations as if they were right next to you. I have no control, though. Imagine going to a party where everyone is right next to you, talking in your ear. At parties I tend to rely as much on lip reading as anything else as the din is so loud. The same is true in restaurants, where it is as if everyone in the restaurant is now sitting at my table.

It is not as intense as it was, having been reduced quite a bit after I started taking Savella. I get it only occasionally. In the beginning, once it hit it was much of the time. I had to have white noise to sleep. Every sound was loud. Every creak of the house, every sound from outside.

Rain was a nightmare. The problem was that for me, sound was very positional. While I had no control over the volume of a sound, and I could not isolate a specific sound from others to focus just on it, I knew very vividly where that sound was coming from. Even with my eyes closed I could see where that sound was coming from. With rain, it created an incredible soundscape in my mind. I could “see” the backyard in sound. I could visualize where the rain was hitting the roof, the grass, the concrete. Each splatter of rain sounded different, and painted an image in my brain of where it was. I had a remarkable view of the backyard in my mind, just from the sound of the rain. It was like trying to sleep with my eyes open.

Super hearing has a name: hyperacusis. It can be triggered by stress, illness, or brain injury. One of the most famous people with hyperacusis was Nicola Tesla, the beyond brilliant inventor who developed the system that now brings electricity into our homes. In his autobiography he wrote:

“In Budapest I could hear the ticking of a watch with three rooms between me and the timepiece. A fly alighting on a table in the room would cause a dull thud in my ear. A carriage passing at a distance of a few miles fairly shook my whole body. ”

It took awhile for me to adjust to it. A neighbor opening their front door sounded like our front door was opening, which was quite startling. While shopping in the grocery store, people talking in the next aisle sounded like they were standing right next to me.

Like all my other symptoms, my super hearing comes and goes, and it is now less intense and less often than it was. For people with hyperacusis, though, this increased sound is all of the time and can be devastating. Sound becomes painful and at times unbearable. Some wear ear plugs all of the time.

There is a treatment for hyperacusis. It involves sound therapy, in which the brain is retrained to hear sound.

Like smell and touch and taste and sight, hearing is a much more complex task than just listening. Sound is filtered and manipulated by the brain. The type of sound we listen to determines what parts of the brain get involved.

If what we are hearing is language, it is shuttled off to Wernicke’s area in the dominant temporal lobe. This is where the process of decoding the abstract meanings of words takes place.

If we are listening to music, many parts of the brain become involved. The forebrain interprets the structure and overall meaning. The nucleus accumbus and ventral tegmental areas of the brain respond to the sound of music by releasing dopamine, which is why listening to music makes you feel good. Also making you feel good are the positive emotional reactions we have to it which are triggered in the cerebellum. The medial prefrontal cortex responds to the emotional memories that music evokes from past experience. Listening to music is an incredibly complex process for the brain.

Before it can even get to all these tasks, the brain first has to filter out and separate all of the elements of sound coming into it. This is a task made much more difficult for those suffering from hyperacusis, where everything can get mixed up into one big jumble of noise.

Brains Gone Wild

The more you study neurological problems the more you come to understand that we know very little about them. The brain is still, by and large, a big mystery. When things go wrong with it, it can devastate your life, and there are usually no easy answers.

Fibromyalgia has such a wide range of symptoms, symptoms that come and go, that it is very difficult to diagnose. That is especially true when several of the symptoms also afflict people without FM, such as restless leg syndrome, irritable bowel syndrome, and chronic fatigue syndrome. These are also poorly understood neurological conditions just by themselves.

Then you have things like Lyme disease, which can have several FM like symptoms. Some people have both Lyme disease and FM, and some researchers believe that Lyme disease may be one of the triggers for bringing on FM. One theory is that FM may be just waiting for some very strong stress, like a major accident or disease, to activate it. Lyme disease is very difficult to detect, although unlike FM, there are blood tests that can verify a diagnosis. Unfortunately, these tests can produce false negatives. Certainly people have been misdiagnosed with FM when they actually have Lyme disease. Since you can have both, and it is not at all particularly uncommon to have both, this has lead to a linkage between the two in some people's minds.

This theory that trauma to the body can trigger FM sort of makes sense. In my case, there was no particular trauma, unless you count my pericarditis that happened 12 years before the onset of FM. If you allow for that long a time period, then you could blame it on the trauma that everyone has in their life at some point, which does not seem very scientific. The idea that trauma can be one of the triggers may explain why so many people with FM also have other serious conditions along with the FM. Those companion conditions might have been the trigger for the FM. No one knows for sure yet, though.

FM is so staggeringly difficult to diagnose because you have to rule out almost everything else first. As I wrote in Smorgasboard - the Buffet of Symptoms, it seems like you get a taste of almost every neurological disorder out there.

There is a new study from the CDC on a fascinating condition that seems related to an FM symptom but takes it much further. It is very strange and mysterious, and the study does not provide a lot of answers.

It is called Morgellons disease. People with it have a sensation of bugs crawling on their skin. I have mildly experienced this myself, but only on occasion. I feel things crawling on my skin but can look at it and there is nothing there. Others with FM have reported this as a much more intense sensation.

With Morgellons, the problem is that those who experience it have an obsession that it is real. Those of us with FM just dismiss the sensation as a symptom and ignore it like we do with everything else. Morgellons sufferers become obsessed with the idea that threadlike fibers, larvae, worms, or fuzzballs are growing out of their skin.

The CDC study has found no organic explanation for this condition. Here are the main points from the study:

• The condition appears to be uncommon, most frequently affecting middle-aged Caucasian women.
• The reported skin lesions seem to be self-inflicted from persistent scratching and rubbing.
• There is no evidence to suggest an infectious cause, nor is there an indication of an environmental link.
• Laboratory analysis of fiber and foreign materials found in skin lesions were mostly cotton, typically found in clothing or bandages.
• About half of the study participants had one or more co-existing medical, including psychiatric, illnesses. Treatment of these illnesses may improve symptoms.
• This unexplained condition has many similarities to a psychiatric condition in which patients have unusual skin sensations that they attribute to an infectious cause, known as delusional parasitosis or delusional infestation.
  

So, is the CDC saying that this is a mental illness? Not at this point. The study did not specifically set out to demonstrate that. There does seem to be an obsessive component to this condition, similar to what is found in delusional parasitosis, where people become convinced they are infested with parasites.


In fibromyalgia, the pain sensations we have feel very real. We can accept that they are a symptom, though, caused by a misinterpretation of brain signals in the brain. If we feel bugs crawling on our skin, we don't feel a need to prove it is really happening. For Morgellon's sufferers, there is that added component of insisting that something is really there. They become obsessed with bringing in threads to prove their case. This adds an irrational and obsessive component that does seem to indicate a psychiatric condition.

This does not mean that the condition does not feel real to them, or that they genuinely suffer from it. What I wonder is if you remove the obsessive component, if you can convince people it is not an actual disease, do the symptoms go away or do they just cope better with them. In other words, is the insistence it is real a symptom on top of the symptom of the sensation itself?


There is still a long ways to go in understanding and treating this difficult condition, but the CDC study at least heads research along the right track.

Lost Time

Have I been abducted by aliens? This is a common explanation by those who believe in UFO abductions to explain the phenomena of lost or missing time, in which one realizes that they can not account for a period of time. It seems to be missing.

I have experienced this, sometimes frequently. I would sit at my desk in my home office trying to work, and I would look up at the clock a few moments later and a couple of hours had passed. I would go for a short walk around the nearby college campus, one that would normally take twenty minutes or so, and I would get home several hours later.

What happened? Where did I go? I was astonished by the passage of time that I had no recollection of.

I will say that these incidents have almost completely ceased since going on Savella. I still get the common fibromyalgia symptom of going away. It is generally referred to as staring into space before the brain "kicks in". I may be standing in a store and just go away mentally. My wife has to say “Jeff, come back.”, which usually snaps me out of it. I don't know where I go. It just feels like I go away with no memory of that time.

I am usually aware of this, and sort of snap myself back even when my wife is not around. But perhaps before the Savella, this happened for much longer periods of time. Still, I was out amongst people, and you'd think someone might see a frozen person and say something, which would have snapped me out of it. I have no recollection of ever snapping back. The time is just completely gone.

I have found nothing specific in the literature about this longer term time loss. Could it be more of a short term memory loss, something that is known to be a problem with FM? Could I just have forgotten doing things and be unaware of it? I don't know.

I have experienced short term memory loss before the fibromyalgia. After my pericarditis I apparently had some brain damage from not getting enough blood to the brain. I did not forget my past but had difficulty storing new memories. Whatever happened a few hours previous was lost. Reading a book was impossible because when I picked it up again I had no memory of what I had read before.

When I was able to walk from the living room back to the bedroom unassisted, I would stop and stare in the full length hallway mirror. My wife would get me and steer me the rest of the way to bed. As an actor, I thought it would be useful for me to know what I looked like when I was really sick in case I ever needed to recreate that in a performance, so I stared and stared into the mirror. Of course, I never remembered that I had done the same thing many times before, or that later I would forget that I had done it again.

I feared that my ability to remember might never come back. I did not remember how long it had been going on, or how long I had been sick. As usually happens in these cases, my ability to remember slowly came back.

In an interesting aside, as much as I enjoyed the movie 50 First Dates, the condition described for Drew Barrymore's character as Goldfield's Syndrome was made up. There had been no cases where people only retain a day at a time. At least that was the case until 2010. A woman exhibited symptoms after an accident almost identical to those in the movie. They eventually found a solution for her, by having her sleep only 3.5 hours at a time. She was then able to maintain her memories. The character Ten Second Tom did reflect an actual condition, though.

As you might guess, I don't buy the alien abduction hypothesis. Missing or lost time is often reported by those suffering from multiple personality disorder, but I really think my wife might have noticed that. Alcohol can cause a blackout where you have no memory of what happened, but I don't drink. A fugue state can involve memory loss of what happened during the fugue. Dissociative fugue is defined as: “one or more episodes of amnesia in which the inability to recall some or all of one's past along with either the loss of one's identity or the formation of a new identity which occurs with sudden, unexpected, purposeful travel away from home.” Kind of fits, but a little extreme. Unfortunately I have no idea what I was doing during the lost time. I doubt I assumed another personality while sitting at my desk. If I did, it was a lazy personality because he got no work done.

Many reports of lost time are dismissed as people who simply lose track of time. That was not the case with me, since when I was at my desk nothing was done during the period of time I missed. I got no work done at all. My memory of my walks were of a fixed distance that I knew well how long it took to walk.

I thought a little research would turn up more on this, but I have found little so far. For now, I'll just add it to the list of strange symptoms I have experienced.

Pity Party

This is directed to my fellow fibromyalgia sufferers.

Self-pity is not attractive, or ennobling, or even pleasant for others to be around. Wallowing in self-pity will make your life miserable.

None the less, I think it is okay to allow it for yourself every so often. Every couple of months I may allow myself a day or so to wallow in it a little. Expressing it constantly will destroy me, but constantly bottling it up does not seem to be a good idea either.

Fibromayalgia comes in and blows your life apart. Your hopes and dreams for the future may be shattered. Your life is not going to be the same, and there will be many things you can no longer do. This is devastating. A little self-pity makes sense.

In addiction recovery they talk a lot about the destructive power of self-pity. The narcissism of addiction can make self-pity a sustaining and malignant force. At the same time, though, a little self-pity might actually be a good thing.

In “Recovering: The Adventure of Life Beyond Addiction,” by Pete Walker, he writes: “Everyone needs to occasionally feel sorry for themselves. Tears for the self are some of the most potently healing experiences of recovery. Self-pity, in balance and moderation, is extremely healing. Recovery, in fact, is often very limited until there are profound experiences of feeling sorry for the self.”

For us, unlike with addiction, recovery is largely psychological. We may not get better, we may not be able to take control of our lives, we may in a sense actually be victims. What we can do is learn to cope better with the situation we are in.

When I hold a pity party, I tend to do this by myself. Sometimes my wife is around, and she knows what the deal is. I don't want pity from anyone. I just want to feel sorry for myself. I want to be angry at the unfairness of it.

Fibromyalgia is unfair. No one deserves it. A little self-pity where you allow yourself to get emotional about it gives you the opportunity to let out some of those negative emotions. It is not a good idea to do it at, say, a party, or do it all the time, but every so often I find that it makes me feel better.