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.

Frida Kahlo

One of the strangest forms of FM pain are what I call the stabbies. These feel like you are being stabbed with a needle, a nail, or a skewer. The sensation of being stabbed is very distinct. It feels real. You have to learn not to jerk each time it happens.

They can come one at a time or in clusters. The strangest I had was the sensation of a trident slamming into my chest, a sensation so powerful that it knocked me off my feet.

In my desperation to find something to do, I began doing a lot of art research for an art project I had been working on covering the history of the censorship of art. This is when I first discovered Frida Kahlo, and a remarkable link to my experience of the stabbies.

Famed Mexican artist Frida Kahlo suffered pain her entire adult life after a bus accident when she was 18. The American College of Rheumatology suggests that perhaps Kahlo suffered from fibromyalgia. The condition was unknown in her time, or at least it did not have a name, but descriptions of her struggles with pain certainly suggest that it may have been one of hr many health problems.

She did a lot of self portraits that reflected her own struggles in life. She was much more attractive in photographs than in any of the portraits she painted of herself, which seem to magnify every flaw she apparently saw in her own appearance.

Nothing speaks more to me than her 1944 work, The Broken Column. It depicts her as broken, barely held together. For people with fibromyalgia, what really gets your attention are the nails. Put it all together, and it seems quite possible that this painting depicts a fibromyalgia sufferer. 

 

The Broken Column, Frida Kahlo, 1944

There is also an interesting drawing in her diary. She depicts herself in pain, with 11 arrows that point to parts of her body that are interestingly close to the conventional fibromyalgia tender points.

We'll never know her true diagnosis with certainty, but the fibromyalgia community has adopted her as one of their own. Her fighting spirit despite so many difficulties throughout her life is an inspiration to everyone.

Valentines Day

I would not have survived this condition if not for my wife. Nor would I want to. She makes whatever I have now possible.

We have been together since we were both teenagers. We are strongly bonded in so many ways, and could not imagine life without the other.

And yet, with this condition, sometimes she does lose me. I am simply not here anymore. My personality is gone. It is as if that core essence of myself gets lost, and I feel like an empty shell. I feel no emotion. I eventually come back to my old self, but it is enormously difficult on both of us, and probably worse for her, since the person she knows and loves just disappears. She tells me that this is one of the most difficult parts to deal with. It is frightening to see such a change in someone you love.

She loses physical contact from me when I go through periods where I can not be physically touched. There are so many difficult aspects to this, but how do you deal with the fact that your partner does not want you to touch them? How do you not feel rejection?

Our sex life has been devastated, and there our periods of time where it is just not even possible. Finding times when I am well enough to deal with sex, not overwhelmed with pain, not emotionally detached, is difficult. It requires a lot of effort to keep our sex life going. Our sex life could so easily just disappear if we did not both so much want to make sure that does not happen because it is such an important part of our lives.

Sometimes when I am in a lot of pain I look to her beautiful face for comfort. Sometimes what I see, though, is a face wracked with worry, and fear, and stress from seeing someone she loves in so much pain. There are two victims of this condition in our lives, each having to suffer through it in different ways.

I can be brave, and fight it, and maybe even feel noble about not giving into it. All she can do is watch, and worry, and feel helpless because there really is little she can do for me to lessen the pain or make it all better. I can't understand what she goes through any more than she can fully understand what I go through.

We may now have the worse rather than the better, the sickness rather than the health, but the love and cherish part of our vows are what sustain us every day through this incredibly difficult condition.

Fribromyalgia and Homeopathy

People who suffer from fibromyalgia are desperate for some form of treatment. Modern medicine has few good answers, so this naturally leads many to alternative treatments and therapies.

Homeopathic drugs are sold everywhere, they are legal, and they promise great benefits. Do a Google search and you will find tons of sites praising the amazing powers of certain homeopathic drugs to relieve the symptoms of fibromyalgia, maybe even cure them. You will see reports of scientific research proving their effectiveness.

It is all baloney. If you are using an actual homeopathic drug, it is no better than casting a magic spell or doing anything else that requires belief. It is medical quackery of the basest kind, which becomes obviously clear once you understand the belief system that guides the composition of homeopathic drugs.

There are two parts to creating a homeopathic drug. The first is the belief that like cures like. This is not based on any science. It is just something that the homeopathic believers declare is obvious. If a substance produces certain symptoms in a healthy person, then that substance can be used to treat someone who has similar symptoms. This flies in the face of our entire understanding of how drugs work.

What they consider to be the key ingredient, the like that will cure the like, is pretty random. For example, Walmart sells a homeopathic treatment for flu symptoms called Boiron Oscillococcinum. The key ingredient is liquified duck liver and heart. It is used because homeopaths believe it contains microscopic “oscillococci” bacteria. The problem is, there is no such thing as oscillococci bacteria. It does not exist. That is the level of science that goes into determining the key ingredient.

The second part is even more ridiculous. The component that they believe is the key ingredient is diluted. Diluted so much that it is unlikely that there is even a single molecule of the original substance in any dose. They use the designation C for a 1-to-100 dilution, and X for a 1-to-10 dilution. A drug designated as 6X would have the ingredient in a 1-to-10 solution, and then that dilution would be repeated for a total of six times. This would result in the active ingredient being one part per million. Amazingly, homeopathy promotes the idea that the greater the dilution, the more powerful the drug.

That is why Boiron Oscillococcinum is formulated at 200C, meaning it is a 1-to-100

dilution repeated two hundred times. There is no known scientific analysis that could detect whether any duck liver component was ever added in the first place. Not a single molecule could be discovered by any test. The best science we have can only show that what you are buying is a sugar pill.

There is a homeopathic pain reliever that has been touted on a number of web sites recently. It is called Arnica, and it is supposed to have pain-relieving qualities similar to aspirin. In double blind tests it is no better than placebo, but it is still legally sold as a pain reliever. When you remove belief in the cure, though, it is no longer a cure.

So what is in this pill? It is compounded of 30C of arnica, with a little lactose and sucrose. Basically, it is arnica and sugar- sort of. Arnica is a member of the sunflower family, and if ingested in large quantities, releases enough of the toxin helenalin to produce gastroenteritis, and internal bleeding of the digestive tract. That is going to be painful, so there you have it- a substance that can cause pain being used on that basis to cure pain. Does that make any sense at all to you?

So how much actual arnica is in each pill? The designation 30C means that the arnica is diluted to one part in 1 in 1,000,000,000,000,000,000,000,000,000,000,000,000, 000,000,000,000,000,000,000,000. As PZ Meyers explains on his Pharyngula science blog, this is the equivalent of 1ml of arnica dispersed into a cube 100 light years on a side. Essentially, what you are buying is water bound with sugar.

Sometimes homeopathic remedies do work. For example, there was a homeopathic herbal ED drug that worked just as well as Viagra. When studied, though, it was not actually homeopathic. It had the active ingredients of Viagra in it. It was just an illegal knockoff of Viagra sold as an herbal remedy.

How can they sell this stuff if studies show it does not work? Because the FDA does not regulate over the counter homeopathic drugs in the same way they regulate other drugs. Homeopathic remedies slip through a huge loophole. They do not have to be proven to be effective.

There are continuing attempts to change this, but there are powerful pro-homeopathic forces in Congress and lots of money behind the homeopathic industry. It is pure profit. Their drugs contain sugar and essentially no other ingredients. They don't have to do testing, or prove that their products work in any way. The main reason they slip through the cracks is that because they have no actual pharmacological ingredients, they will never cause a drug interaction or do anyone any harm. A strong appeal to the FDA last year by the CFI does an excellent job of laying out the scientific arguments against homeopathic treatments and why the FDA should regulate them.

Why do people think that homeopathic cures work? There has been a lot of research done lately on the power of placebos. The mind has a lot of control over how we perceive our own symptoms. Taking a placebo might make you feel better.

Faith healing and all sorts of medical quackery have been hugely profitable for similar reasons, along with the fact that symptoms can come and go and people can just suddenly get better despite any outside intervention- credit for which, of course, goes to the quack cure.

Because fibromyalgia sufferers are so desperate, they will try almost anything. This is the perfect opportunity for the hucksters to swoop in and cash in on this population of almost perfect targets. They know how to convince people that their quack cures work and make a lot of money off of it. The constantly changing symptomology of fibromyalgia makes it perfect for quack cures.

Homeopathy has become a huge business. They claim that the scientific community's rejection of it is a conspiracy by big pharma, and almost always use the comparison to aspirin. They state that science did not understand how aspirin worked, but we still used it anyway, and it is the same with homeopathy. There is a big difference, though. There was a huge body of science showing that aspirin did work, we understood how a lot of drugs worked so the basic idea that drugs could reduce pain was not controversial, and scientists did not reject the idea that there was a possible scientific explanation for how it worked.

With homeopathy, scientists reject the idea that there is any mechanism that would allow any homeopathic drug to work. There is no evidence that a molecule can transmit its healing power through vibration to water and then magnify that healing power. There is no evidence that like heals like, and it makes no scientific sense. In order for homeopathy to work, we would have to turn our understanding of pharmacology and biology upside down.

I write a blog on bad science and research, and there is a lot of it out there. A single study showing the effectiveness of any homeopathic treatment is meaningless until other researchers are able to replicate those findings. That is how science works. While there have been a lot of studies done on homeopathic drugs, there has not been a lot of replicated studies using tight controls. Whenever tighter controls are used, the supposed healing ability of homeopathic drugs seems to disappear.

You have to control for bias. In 2005 the medical journal Lancet looked at 110 homeopathic drug tests. What they found was that these tests introduced significant bias, and when you removed that bias from the studies, the results fell apart. In other words, the poorly done tests were basically reporting a placebo effect.

Often quoted on pro-homeopathic sites is a 1997 meta-analysis of placebo-controlled trials of homeopathic drugs. That study concluded that patients receiving homeopathic drugs were more likely than patients receiving placebos to show signs of improvement. (Linde, K., et al., “Are the clinical effects of homeopathy placebo effects? A meta-analysis of placebo-controlled trials.” Lancet, 1997). What they fail to mention is that the authors of that analysis later took a second look and wrote a follow up paper that found that when better methodologies were used, the results were much less conclusive.

I have listened to homeopathic lectures by so-called experts, and they use scientificy words, but it is all gibberish. There was no grounding in any recognizable science. You don't just get to make up your own science and run with it. Science does not work that way.

You may believe in homeopathy, but do not for a minute confuse it with any form of science. It is a spiritual belief wholly dependent upon faith.

Smorgasboard- the Buffet of Symptoms

One of the key elements of fibromyalgia is the staggering array of symptoms. There are three that are key: widespread chronic but transitory pain, fatigue, and mental fogginess. For the first three years, I only had the first two, and then the fibrofog came in, which turned out to be the most devastating of the symptoms and one I continue to battle on a daily basis.

I have separate entries for these three main symptoms, but there are also a lot of other commonly reported symptoms. Here are some that I have direct experience with and that are commonly reported:

IBS

One of the more common symptoms is irritable bowel syndrome. Why is currently unknown, but there is a strong clue. It is believed that fibromyalgia is linked to an imbalance in serotonin levels. IBS is also linked to an imbalance of serotonin, but in the gut, not in the brain. That may not be a coincidence. IBS is painful, and this may one of the few symptoms where actual “it hurts because something not good is going on there” pain is involved.

Swelling, numbness, and tingling in hands, arms, feet, and legs

My feet and legs are fine, but boy do my hands swell and go numb. It is a painful kind of numb, a combination of a loss of sensation and the pins and needles of restored sensation. Sometimes they get so numb I can barely type or pick things up.

Sleep problems

Sure, sleep can become difficult, but usually that is because of pain. Sometimes I just can't sleep, classic insomnia, and lack of sleep does make my other symptoms worse. What many fibro sufferers have a problem with is not getting a deep enough sleep. They wake up frequently during the night. I guess I do as well, but I fall back to sleep immediately. What seems to be happening according to sleep studies is that while sleeping, people with FM have bursts of brain activity that disturb their sleep. Because this interrupts deep sleep, you wind up not feeling as rested. This is different from the chronic fatigue symptoms though, which usually hit me in the afternoon. Most of those with disturbed sleep tend to have these feelings of fatigue and tiredness when they first wake up. 

Depression

I am in the group of people, including some researchers, who believe that depression is less a symptom than a natural reaction to the difficulties of the condition. Who would not be a little depressed? When I have deep fibrofog, I can't see any future because my vision so narrows, and I do get depressed. That seems reasonable to me under the circumstances. As soon as that clears up a little and I can think clearly the depression goes away. I have not experienced any long term, or chronic depression with FM. Anxiety is also listed as a symptom, but there is a lot going on here to make you anxious. Since I am upbeat most of the time, I am uncertain if depression is a widespread symptom or simply a response to something that is depressing. There is no clear consensus on this issue yet.

Headaches

I get terrible headaches, but here is the interesting part. Taking Ibuprofen helps. It does not help with any other type of fibromyalgia related pain, nor does any other type of painkiller. I wonder if headaches, real headaches, are triggered by pain or other stressors related to FM. In my experience, the headaches I have are typical headaches and unlike the strange and bizarre pain triggered by fibromyalgia. There does seem to be some increase in intensity of the headache pain, but that might be related to the hypersensitivity to so many things you have with fibromyalgia. Real pain can sometimes seem magnified.

Morning stiffness

More than 75% of people with fibromyalgia feel stiffness when they first get up in the morning. I experience this as well but it tends to go away very quickly. For some it can last hours, and has been compared to the stiffness that people with arthritis experience.

Urinary Problems

Early on when I was first struggling to get diagnosed, I had problems with needing to urinate frequently. This can be a symptom of a lot of different things, many of them not good, and was quite concerning to me. Doctors kept looking and found nothing. This symptom has sort of faded away and does not seem to be as much of an issue for me anymore.

Restless Leg Syndrome

What an innocuous name for such a totally miserable condition. In general, it is a desire to move your legs to lessen an uncomfortable sensation. It is a neurological condition where the impulse to keep moving the legs is very very strong. In my case, though, it is not just an unpleasant sensation but actual pain. Moving my legs does seem to offer some relief, but it only lasts for seconds at most. I am constantly tossing and turning trying to find a comfortable position so that I can sleep. No matter what I do, I never get comfortable. I had heard of restless leg syndrome but did not know anything about it, so I did not relate it at all to what was happening to me. I just considered it one of the more unpleasant of the pain episodes with no idea that it had a specific name. I finally read about it a bit more and realized how well it described what was happening to me. I thought the constant impulse to move my legs was a natural response to the pain, from trying to find a way to get comfortable. Upon reflection, it is a bit more complex than that.

This list only touches the surface. A more extensive list developed by fibromyalgia experts lists over 60 known symptoms. I have experienced many of these lesser covered symptoms and will discuss them in a future post.

Tortured Dreaming

I tend to be a lucid dreamer. Not all the time. But often enough. What makes lucid dreaming different is that in the dream you are aware that you are dreaming and you can interact with the dream at a more conscious level. Lucid dreaming has been established in the laboratory.

There was a time when some experts denied lucid dreaming even existed. We have learned a lot about dreaming in the last few years. Did you know that the idea that people dream in black and white did not exist until the advent of black and white movies and television?

My most interesting lucid dream dealt with the dreamscape itself. I was fully aware that I was dreaming, and my goal in the dream was to explore the dreamscape in detail. As someone who has done a lot of 3D design creating 3D worlds, I was curious as to how detailed this world was. I wandered around in the dream making a point of noting the details.

The outdoor environment was filled with trees. I walked around a tree and studied the bark. It went all the way around without a seem or repeating the texture. The lives were individual and different, not just the repeating of the same leaf over and over.

I was studying what was in the dream, not consciously creating it. I walked up to signs to see if I could read them. I wandered into a restaurant and picked up the menu and read it. The level of detail in the dream was astonishing to me. And then I woke up.

In a journal from my teens, I wrote about a dream where I was in a bookstore, and aware that I was dreaming. I was astonished that I could pull books off of the shelves and sit down and read them.

Sometimes I wake up from a dream because in the dream I become annoyed with its lack of internal consistency. It is like getting disgusted by a movie and walking out. Other times I simply back up the dream so that it can go in a different direction. I have never had the kind of control over a dream that you saw in Inception, though. It would be cool to actively construct the dreamscape. For me, lucid dreaming is about having an awareness that I am dreaming and having conscious control over my own actions. The dream usually does what it wants.

Most of my dreams are not lucid, though. They are like movies, rich in visual details complete with camera moves and other visual narrative devices. My point of view might switch between characters. Usually, though, I take on the role of a specific character in the story. Complex plots involve science fiction themes, or spy stories, or mysteries. Sometimes the stories themselves are pretty good. To me, dreams are a form of entertainment and quite enjoyable. Only rarely do they reflect upon my real life in any obvious way.

My dreams often have a sense of humor. In traveling across a post-apocalyptic world our goal was to meet the man who by heredity was king of this area. Hanging on the wall of his home was proof- a faded photograph of his great great grandmother being crowned Miss America.

I also don't have nightmares. Yes, I have very scary dreams, but I never feel completely out of control. There is always a goal in my dreams in the narrative that I am working towards. I always have options. I am never a passive character of simply a victim.

My dreams are very sensate. They are richly visual with detailed environments to look at. There are smells, and sounds. And when I fall in a dream and hit, I don't wake up, but I feel the sensation of slamming into the ground and the attendant pain. When a spaceship takes off, I feel the acceleration pushing me down into my seat. If I am in a fight and someone hits me, it hurts.

With my fibromyalgia, a new theme has entered my dream life. Horror. I tended to have adventurous dreams, but did not typically delve into the horrific or truly frightening. That changed.

When I was a child, I had a dream in which I heard cats fighting outside my window. I opened the window and a man grabbed me, pulling me out and running off with me. This startled me awake, only to hear the sounds of cats fighting outside my window. I had incorporated the sound into my dream.

In a much more recent dream, I was sitting outside a motel room and could hear a person snoring loudly inside. I got up to get away from the sound, but no matter where I went the sound followed me. I had incorporated my wife's snoring into my dream.

It is not just sound that can be incorporated into a dream. Sometimes at night my fibropain is pretty bad. There is nothing you can take for it, and you struggle your way into sleep. That does not always offer me any escape, though. I have incorporated that pain into my dreams. Hideous creatures capture me and stab me all over with their sharp spines. I am tortured in numerous fiendish ways. I might be thrown about leaving me battered and bruised. Fibro pain comes in a wide variety of sensations, and I have been very creative in incorporating it into a lot of different scenarios.

I sometimes refer to these as torture dreams. And you might think this sounds horrible. I see it differently. Pain is a part of my daily life. There is no such thing as a day without pain. And all my pain is pointless. It has no meaning. But in these dreams, which are also exciting and scary, I work through that pain. In the dreams, pain is caused by something. I might be trying to escape from rublle, or fighting a monster or evil villain. I struggle to prevail. I fight and often I do escape. The dreams are not of futility, but about a battle against whatever in the dream is causing the pain. Instead of the utter futility of my normal pain, in these dreams I have something or someone to actual struggle against. In a way, these dreams give me some of the only victories I ever seem to have with this condition.

Just Stop Eating or Drinking (insert here)

People are well meaning, and they want to help. So I get constant suggestions about how to cure my condition. “My friend tried this and their symptoms went away.” “I read that if you just cut this out of your diet that solves the problem.”

Unfortunately, fibromyalgia is a lot more complicated than that. There simply is no widespread treatment that works for a wide range of people. Even the approved drugs have limited effectiveness- helping some but doing little for many.

The idea that there is a dietary link keeps coming up again and again. There have been instances where people have cut out caffeine, or artificial sweetener, or MSG and their symptoms improved. Sure, I have tried that approach as well. It did nothing for me, but there does seem to be a better understanding of why it actually does work for some.

Fibromyalgia is a condition in which your body over responds. If you have allergies, they become much worse. You become significantly more affected. My allergies can be awful now, when before they were insignificant.

What some are beginning to believe is that some symptoms may actually be caused by a heightened allergic response. What might have been unnoticeable before now makes you sick. Cut it out of your diet and you will feel better. The problem that gets better is not a fibromyalgia symptom, but an over response caused by the fibromyalgia. That is why some people get such good results when others have no response. It is variable from person to person.

Yes, cutting something out of your diet may make you feel better. It is not making the fibromyalgia better, though. I have seen no research that shows any actual cause and effect, nor any that shows that there is strong evidence for a chemical link for a cause for fibromyalgia.

We still just don't know what causes it, and the condition is tricky and elusive. It gets better and worse seemingly at random, and I have tried mightily to spot any patterns. I've had horrible stress and been better, and I have had things humming along happily and suddenly gotten much worse. The only absolute sure trigger for me seems to be the weather. When the rain comes in, that is my kryptonite.

Everyone is desperate for an answer. So far, though, I have not seen many.

The Long Journey to Diagnosis

It typically takes a long time to get a diagnosis for fibromyalgia. You can't detect it in a blood test, the symptoms are strange and constantly changing, and we have still barely scratched the surface in understanding it from a medical perspective.

Still, you'd think that something this strange, that has been around for awhile, would have been better studied by now. I believe the main reason that it has not been better studied until recently was because it overwhelmingly effects women, and women's complaints are way too often dismissed or ignored. I have personally seen it happen.

I have a friend who began to suffer a variety of strange symptoms. Significant pain. Numbness of the hands. She was getting in worse and worse shape over time, eventually getting to the point where she could no longer drive because of the numbness in her legs, so I wound up taking her to doctor appointments. I would go in with her because she sometimes had trouble focusing on what the doctor was saying or remembering to ask him questions.

Tests were done, but nothing was found. She just kept getting worse. Her doctor dismissed it as being all in her head. She over reacted to her pain. There was really nothing there.

She had to beg repeatedly for more tests, and eventually they scanned the proper place. She was suffering from a tethered brainstem, which is as bad as it sounds. Scar tissue had formed around the base of her brain that was slowly crushing her brainstem. It wasn't all in her brain, but just below it.

She is now completely disabled from what her doctor kept insisting was all in her head. That doctor is still her primary care doctor, thanks to our healthcare system. No other doctor in her insurance group is seeing new patients, so she can't change. The other thing you learn when you have a serious condition is just how horrible our healthcare system is for anyone who does not happen to be wealthy. People living nice middle class lives get reduced to poverty because of their health problems, even with what is considered decent insurance.

I remember the exact moment when I first became aware of the problem. I kept hearing over and over in my head “Something is wrong, something is wrong.” It was not hearing voices, but my own voice, loud and persistent. Something was very wrong. The pain was horrible and getting worse. I told my wife that I thought I might need to go to the hospital, and shortly after that, it was very apparent that I needed to go to the hospital. She broke some land speed records getting me there.

They gave me some drugs to relax me, did some tests, and found nothing.

It took over a year of going to doctors for me to get a diagnosis. That is actually a pretty short time for most people with fibromyalgia. I went to specialists. I had countless tests done. I had so much blood taken that my blood vessels were getting bruised.

I got strange diagnoses and treatments that did nothing for me. I even tried Chinese medicine, which seemed to make me much worse, but who knows since fibromyalgia symptoms get better and worse seemingly at random.

In fact, though, I was almost a textbook case for FM. The problem was that most doctors had never heard of it. I finally got a doctor who was familiar with the symptoms. When I got a book about fibromyalgia I so well matched the symptoms there was no doubt in my mind. The diagnosis was later confirmed by another doctor considered an expert in fibromyalgia treatment.

Things are getting better, as more and more doctors are becoming aware of fibromyalgia. It is still a long difficult process to get a diagnosis, though, as they have to rule out almost everything else first. There is no simple certain test.

Even with a better understanding of the condition, for many women suffering with fibromyalgia and looking for an explanation for all their pain and misery, there are still going to be a lot of doctor's who tell them, because they are women, that it is all in their head.

Strange Doings in New York

It is a very strange story. It makes no sense. And yet, something is going on. Several girls at a New York school were, within a short period of time, all exhibiting strange tics, exaggerated movements, and verbal outbursts, all apparently uncontrollable. The symptoms are very Tourette like. It has now impacted 16 people.

That a cluster of people would come down with similar symptoms is not unlikely, but having them all manifest so quickly with no detectable cause is. Tourette's Syndrome is relatively rare, and tends to have a genetic factor. It is not Tourette's, but could it have been induced by some exposure to a toxin?

It is possible, but unlikely. No toxin has been detected so far that they might have all been exposed to. There was a toxic chemical spill in the area many years ago, but it makes little sense that we would see a cluster of victims now, in such a limited group- fourteen teenage girls and a single female adult and a single teenage boy. Usually symptoms develop at different rates for different people, based on exposure and their own biology.

So what is going on? The general consensus so far is that it is probably what is known as a conversion disorder. This has often though inaccurately been referred to as mass hysteria.

Hysteria comes from the Greek word for uterus. In Victorian times, it was one of the most common diagnosis for women. It was believed to have been caused by a disturbance in the uterus, thus only affecting women. The common and surprising treatment during the supposedly repressive Victorian days was hysterical paroxysm. Although this treatment has long since been abandoned by doctors, it was simple and inexpensive. The doctor would manually massage the pelvic area until the woman was brought to orgasm. Amazingly, she did feel better afterward. It was a simple treatment, but it could be a tiring one for the doctor. This lead to the creation of the steam powered vibrator, and then the electric vibrator, both of which were originally designed not for sore backs and shoulders, but to help prevent doctor's sore hands.

Mass hysteria, though, is different from hysteria in that it can effect both men and women. It is a very real thing. Groups can become very suggestible.

A conversion disorder is different from mass hysteria, though. While the root may be psychological in a conversion disorder, that does not make it any less real. To the one suffering, they really have no control. They are not faking it. There may be no brain or nerve damage, but the problem is very real. And it can spread to other people. It is not common, but there are many documented cases.

How this all works we do not yet understand. Nor does this diagnosis completely rule out an infectious disease or a toxin that may have been a trigger.

Despite the reality of conversion disorder, most of us with fibromyalgia will react very negatively to this diagnosis. We have been through the frustration of having endless tests done where the doctors find nothing. Since this is a syndrome that primarily impacts women, it has been often written off as simply psychological. Women wanted attention, or were malingerers. Despite the tremendous pain and disability, doctors tended to dismiss their complaints. Many still do, and there are doctors who don't believe that it is a real condition despite the mounting medical evidence.

I believe that fibromyalgia is as poorly understood as it is because it largely impacts women. I have seen first hand how doctors dismiss anything they do not immediately understand with women patients as just being “all in your head”. 

The history of women’s healthcare is a sad one. Sexism has been a big factor. Much of our medical research has focused on men. We actually know less about how many diseases effect women than we do men, because most of the studies have focused on men.

In my next posting I'll write about my first hand experience with how women are treated with difficult to diagnose conditions, and talk about the long journey to diagnosis for fibromyalgia patients.

Peering Through the Fog

My life consisted of very little accomplishment during the worst of my symptoms. I just got through each day, and I was finding this intolerable. I needed to find something useful that I could do even when I was foggy.

A friend was putting together their family photos and knew that I had a knack for digital photo restoration. He asked me if I could fix then up, since many of them were very faded and damaged, and I felt that I could give it a try, working on it as I could since there was no deadline.

Something interesting happened. Even on days where I was very foggy and barely able to think, I was still able to work on the photos. This can be dull tedious work, but it held all of my focus and attention. I looked at the photos and saw only the defects, and could quickly remove them. Sometimes, zoomed in, I had no idea what I was even looking at, but I could see what was wrong, what did not belong- dust, cracks, stains, spots. They all quickly disappeared as I worked on the images. I found the work both absorbing and calming.

In my quiet office, completely focused on an array of pixels, I had found something that I could do, something I could do even better than when I was clear headed, where such repetitious work would cause my mind to wander. Here I was completely absorbed in the task.

As a friend pointed out who works with autistic children, it was if I had keyed into an almost autistic level of focus. In a 2011 University of Montreal study, it was shown that the brains of people with autism focus more resources in areas of the brain devoted to visual perception. At the same time, fewer resources were allocated to areas of the brain used to plan and control thoughts and actions.

Of course, I am not saying that autism and fibromyalgia have anything to do with each other. When I was in severe fog, though, I had little ability to plan or coordinate anything, but I could sit down at the computer and rapidly restore photos. I was completely focused on the task, unhindered by other thoughts or distractions.

When the photo project was done, I realized there was an even bigger project I could work on that would take a long time. As a sex educator and free speech advocate, I had been collecting digital versions of erotic art for many years. I had tens of thousands of images. My plan had always been some day to clean some of them up and include them in a history of censorship.

It seemed like a good time to start on that, since I was foggy most days during this period and really needed a task to do. I was amazingly fast. Day after day I cleaned up art that had become colored, faded and stained over time. My mood greatly improved, because I now finally felt like I was accomplishing something.

After I discovered Savella, the foggy days greatly diminished. They still came, and when they did, I had the art project to work on. This continued over a couple of years, and by the time I was done, I had digitally cleaned up some 30,000 drawings, paintings, illustrations, and photos in HD resolution. My unfoggy self could never have had that level of output. It is an amazing collection of art, much of it dramatically restored, that will be spread throughout my five part series on censorship.

Retarded Spock

My wife sometimes refers to me as retarded Spock. It may not be politically correct, but it is apt. She uses this term for when I am suffering from fibrofog and a symptom that is not talked as much about- a total loss of any emotional feelings whatsoever.

This loss of emotions includes what is scientifically referred to as a flat affect. I move less fluidly and more stiffly, I have little expressiveness in my face or vocal inflection, and I can't properly interpret the emotions of others. It might sound reminiscent of the difficulties many autistic people have, but they do not have the same complete flattening of emotions- they just have more difficulty with the interpersonal emotions between people. Love may be confusing, but but they can fully feel happiness and even joy. It is also different from what is believed to be known about the blunted affect common in schizophrenia. It is thought that while their affect is flat, inside the person is still feeling emotions but is unable to express them externally. For me, I feel no emotional response to anything. There is just no connection to any emotional response.

This symptom is one of the most difficult for both me and my wife. She finds it frightening. It is as if I am no longer there, and something else has inhabited me. Something not fully human.

It certainly seems that way to me. I have little sense of myself. I literally feel nothing. I do sense that something important is missing. This should be frightening. I feel nothing about it one way or the other. It simply is what it is. Intellectually, it seems like it would be better to be my old self. I do know that my old self will come back. It is just an experience. In retrospect, I hate it, it is if much of my very essence has been stripped out of me. At the time, though, I have no strong feelings about anything, including my inability to feel.

There is a link between blunted affect and depression. As I have written before, I think the sadness I feel when I am in a deep fog is actually a fairly normal emotion. I have been depressed in the past before having this syndrome, and I don't know that I have experienced any continuing depression in that sense since having this. It is more a feeling of sadness, and who would not be sad under the circumstances? I suppose the two could be linked, but the difference, like all my fibro symptoms, is that they turn on and off like light switches. There is no improvement, they don't get better, they are here, and then they are gone. I can cycle through several symptoms in a day, sometimes overlapping, sometimes separate.

How foggy I am when I lose my emotions can vary. This can be problematic. The last time I tried really hard to think about the experience and what was happening and remember it. I was not thinking particularly clearly, though. I wondered if anything could shock me into having an emotional response. I hit upon the idea of striking my hand very sharply with a hammer. That would normally elicit a very strong emotional response from me, and I thought at the time that it would be an interesting experiment and that I should try it at once. My wife quickly disabused me of that notion.

I don't always go completely flat. The term for a less complete loss is a blunted affect, and I can have that as well. It is sort of a numbness of the emotions rather than a complete loss.

It can be disturbing to others. I have an option that many others do not. I have years of acting training. I know how to consciously modulate my voice. I know how to consciously animate my face. When I was acting, it was like I was a puppet master animating myself. The emotions expressed had little to do with how I actually felt- I was never a method actor. This is similar. It takes some effort, but I can put on an affect, although I think it is more effective with people who do not know me.

What I do find under both circumstances, whether a complete loss or just a numbing down, is that making decisions becomes almost impossible. A simple decision like what I want for lunch is extremely difficult. The more open ended the question, the more impossible it is to answer.

If I am at a restaurant, it is impossible for me to think of what I would like. I don't feel one way or the other about it. I may be hungry, but I have no desire for a particular type of food. I make my decision on whatever I had last time and whether I remember liking it. If my memory was positive, then that is what I would order.

Is there a link between a loss of emotion and an inability to make decisions? Maybe. People who lack emotions because of brain injuries often have difficulty making any decisions at all

We think that we make decisions using the intellectual part of our brain. In fact, we never turn to the intellect first. When we need to make a decision, we turn to the emotional part of our brain first. Why? Because this is much faster than sorting through all of the facts. We check to see how we assess things emotionally first, where how we feel about any particular topic is already stored. Sifting through conditionals to come to a decision is a lot slower.

Mounting evidence for this comes from brain imaging studies like those done by University College, London. When it came to make decisions, it was the emotional parts of the brain that lit up first.

I first came across this idea while reading Jonah Lehrer's book How We Decide. I found it a fascinating read.