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.