The Fog Rolls In

It snuck up on me. Sure, I had read about fibrofog, but I really did not understand it. Other than continuous pain, I thought I was fine. Plus the horrible fatigue. I assumed it was this combination that kept me from being clear headed. It was just something I could push myself through.

I was still working for clients at this point doing writing and web design. I was also working on my own projects. One of the big problems with fibrofog, until you learn how to deal with it, is that you have no idea in the beginning just how much damage it can do to your life.

Here is the problem. You know you are not clear headed, but you think you can still function. What happens, though, is that your brain completely misfires. You do things that seem reasonable at the time but make no sense at all. For example, I emptied the dishwasher and put the pans under the bathroom sink. That made sense at the time, and I had no memory of doing it. In my mind, I properly emptied the dishwasher.

Here is a much much worse example. I felt very fuzzy headed so I thought it would be a good time to go through my backups. I do consecutive backups, and every so often the older ones need to be weeded out. It is a simple task of pulling out the older DVDs I backed up to and tossing them. The next time I went to do backups, which I do every few days, and went to put them with the others, I was astonished. All of the backups were gone. Instead of throwing out old backups, I threw out all of the backups. They were all gone.

This turned out to be worse than you might think. At the time, I was doing a lot of programming, a lot of complex work in Flash, and other complicated tasks for my own project. On a day when I was more clear headed, a rather rare occurrence at this time, I went back over my work. Some of the code was gibberish. Much of it was just missing, programmed without ever saving it. It was as if someone had taken an axe to my work, doing massive undoable damage. A year's worth of work was just gone. Only bits and pieces remained. And there were now no backups. I was meticulous about doing backups, and now everything was gone.

The final blow came soon after. I had done a web site for a client, and they were getting national television exposure. I had updated the contact form for them, and I got a call just after the program aired that it did not work. I went and looked at the code, and it made no sense. I always test things to make sure they work, but looking at this code, the simplest of HTML, and it was clear it never could have worked. How was it even possible to make such a huge mistake?

I quit working for clients at that point.

I continue to battle with fibrofog, although I have a much better understanding of it now and have developed coping mechanisms, and its severity is much less now that I am on Savella.

Fortunately, when I was first having problems with fibrofog, I chose not to drive. I just did not feel clear headed enough. I soon learned that even walking could be dangerous. I would find myself in the middle of a crosswalk with cars honking madly at me. What happened? My brain would see a light change, and even though it was a light down the street changing to green, in my mind, the light in front of me had changed to green. After a couple of times of doing this I developed much better systems of double checking when I was foggy.

I usually know now when I am foggy, but I am constantly monitoring for anything that does not make sense. If several anomalies pop up, I know I may have a problem. Here is an example. We have a shower with a glass door. At the end of the shower, I use a squeegee to get the water off of the door. But on one occasion, try as I might, I could not get the water off of the door. I would scrape and scrape and it was still just as wet. When strange things like this happen, I step back and realize it is fibrofog and try to look at it from a different angle. That allowed me to realize that instead of cleaning the glass at the end of the shower after the water had been turned off, that I had begun cleaning the glass when I first stepped into the shower with the water still running. Problem solved.

Losing track of proper sequences like this is not unusual. One adaption I use is to write a big H on the steamy glass door with my finger after I wash my hair. I then write a big B on the glass after I wash my body. This keeps me from washing my hair, then my body, then washing my hair again because I did not remember washing it, then washing my body again, and so on. I feel my face to know whether I have shaved, and then check to see whether there is a B or H on the glass to know what to do next. This is very helpful on foggy days.

Before getting Savella, for about a year the fibrofog devastated me. I could barely think. I was barely functional. I could do almost nothing. For someone who loved to work and constantly had creative projects, this was horrific.

I discovered two activities that I was still able to do. My years as a performer had developed my speaking skills, and I had done a lot of radio shows. I began doing the Jeff Booth Show, a weekly Internet radio show where I commented on sexuality and free speech issues. I even did interviews. I could prerecord it when I was more clear headed, and I could do it even when I was not in great shape, recording it from bed when moving about was not an option. On the show I could do character voices and be funny and it gave me a sense of accomplishment.

I also began work on an art restoration project that I was better at when I was foggy than when I was not. You can read about that and more about the experience of fibrofog in the Peering Through the Fog entry.

Falling Up

I have an unrelenting curiosity about this condition. I have become fascinated by neurology, and I sometimes read things in books on neurology that make me wonder about things. So I do experiments.

Sometimes these are not a good idea, and my wife yells at me about it. For example, when I experienced the fibrofog combined with a complete deadening of emotion, I wondered if hitting my hand with a hammer would elicit an emotional response and break me from the emotional disconnect that I experience. My wife quickly vetoed this notion, which while I now more clear headed, I see was clearly not a good idea.

I did read an account of a loss of proprioception, the ability of your body to know where it is in space, and how this works with other systems. Often those who experience this automatically compensate using their eyes without even realizing there is a problem.

When I am foggy, I have more difficulty getting up and walking. Why this is, I don't know. If feels as if I am having to find my legs and remember how to use them. Once I get walking I do pretty well, although sometimes I can be unsteady on my feet. It feels more like a weakness in my legs and I experience no sense of dizziness.

I wondered what would happen if I tried to get up with my eyes closed when I was foggy. I had not tried this before. What I found was that as I started to try and walk, all of a sudden I lost the sense of where up was. It was suddenly gone. Sitting down, I had no problem. Standing was no problem, because I could clearly orient up based on the equal pressure on my feet. Once I started walking, though, it was as if up just disappeared. Very interesting.

I tried this again when I was more clear headed, and had no difficulty walking with my eyes closed.

Is there a relationship between a loss of proprioception and my sometimes difficulty walking? Could it have any relationship to the common problem with people with FM falling? Usually it is just reported as a weakness in the legs, but what if it is actually a problem with finding the legs and giving them the right commands on how to move through space?

I have found my ability to orient my body in physical space severely compromised. There have been times when walking through a restaurant to get to the table is very difficult because I just can't seem to properly orient myself in space with the objects in the room. Even with my eyes open I can run into things. I found a little trick. If I tap my hand on objects in the room as I walk through it seems to reorient me and I have a better feel for where I am.

I have had my legs buckle underneath me, but usually I am able to catch myself. It is more likely the foggier I am. My legs are not weak, though. I walk regularly, and my legs are actually quite strong. So what is going on?

A recent study http://www.ncbi.nlm.nih.gov/pubmed/22230426 concluded that “women with fibromyalgia showed reduced functional performance and lower limb muscle strength, mostly explained by pain. There was a high prevalence of falls in this population, as explained by hip extensors rate of torque development, duration of fibromyalgia symptoms and pain.”

My problems, though, were made worse by fog, not pain. I do not have reduced lower limb muscle strength. My legs are strong. So maybe the falling issue is more complicated than it appears. Maybe there are other factors at play.

Words for Snow- The Amazing Variety of FM Pain

FM pain makes me think and the old belief that Eskimos have a huge number of words to describe the different types of snow. That actually is not true. What is true, though, is that the English language is inadequate when it comes to describing the many different types of FM pain.

In order to deal with what was going on and describe it to my wife and doctors, I had to come up with my own vocabulary. I will use that here to describe the various types of pain I experience, but keep in mind these are my own names for them.

FM pain is strange and diverse. The singular distinction is that it is always changing. You can not always differentiate FM pain from real pain, since it so closely mimicks real pain. There is one certain tell. FM pain does not usually resolve itself in terms of lessening over time. In real pain, as the problem heals, the pain diminishes. For most fibropain, it turns off like a light switch. You can be in incredible agony one minute, and fine the next. If it has been going on for awhile you'll probably have sore muscles from tensing up from the pain, but one second you can be in so much pain you can't move, and the next second it is completely gone with no residual pain or soreness.

I should mention here that most of my pain issues are better using Savella. While I have pain every day, it is more tolerable and less intense in general. There are fewer days when the pain is so bad I can not get out of bed. It can still get bad, can still be debilitating, but overall, I am less debilitated by the pain than I was before taking Savella.

Like all my symptoms, none of the pain sensations are constant. They come and go of their own accord. They may last seconds, they may last days. On rare occasions I will get multiple types of pain at the same time, but usually they took their turn.

Here are some of the more unusual pain types I get and the names I use for them:

Stabbies- Stabbies are what they sound like- the sensation of being stabbed. They are surprisingly vivid, in that I know exactly the diameter of what I am feeling a stabbing sensation of. There is the bee sting. The needle. The toothpick. The skewer.

These were some of the most common pains I felt before going on Savella. I still have them, but they are very much decreased in frequency and severity. Whether that is the changing nature of the syndrome or a result of the Savella, I can't be sure.

The stabbing sensation can happen anywhere, and it can be singular or in a cluster in different places. Sometimes it repeats in the same place, such as the sensation of being stabbed in the thumb with a toothpick over and over again. This can last for several minutes. You learn over time to not react to these pain sensations, otherwise you become twitchy.

The main difference for me between really being penetrated by a foreign object and the FM version of it is that there is no resolution of the sensation. I feel the penetration only, but then it is gone. There is no sense of there being something still there. No continuing sense of pain. I get the stabbing sensation and then it is gone, as if nothing had happened.

Touch Pain- This is one of the worst symptoms of all, even though it is difficult to describe it as pain exactly. This and the stabbies are the two pains that seem to have been most reduced by Savella for me.

Touch pain is less pain in the normal sense than it feels as if your brain is being overloaded. When my wife touched me, it was profoundly unpleasant. That sensation of being touched flooded my brain, overwhelmed me, was too much. It is difficult to even find words to properly describe it. A hug was unbearable. How do you tell your wife you can't stand for her to hug you?

Clothing could touch my body and that was okay. The pressure of my body against a chair or the bed was fine. Try to hold my hand or put your arms around me and I was overwhelmed by a flood of sensation that was more than I could handle.

Burnies- Just what you might imagine- a random area of skin feels as if it has been burned. This is not the sensation of being burned, but the hypersensitive feeling burned skin has to being touched. This area of skin, usually just a few inches wide, has a very low level sensation of discomfort that is greatly magnified when it comes in contact with anything.

The Blob- This is just a large area of pain. I primarily feel it in my torso. It is just a blob of pain, not analogous to joints of muscle groups. It probably takes up about 30 percent of the torso area. It also moves, or drifts slowly. I may initially notice it on one side and it will drift to the other side, or move up to encompass the entire shoulder area. It is one of the most common types of pain for me now- annoying but not disabling. It seems like a living thing inside me moving about.

Big Indigestion- The burning unpleasant sensations of really bad heart burn, but often encompassing almost my entire torso. It moves in an unusual way in that it seems to fluctuate in size, getting bigger and smaller over time in the area that hurts.

These last two are the ones that put me out of commission. They are the most intense pain, and you pretty much do not get out of bed.

The Rack- It feels like I am being stretched out on a rack. The pain is continuous, and unlike in the final entry below, laying still offers no relief. The entire body hurts. Moving does make it much worse, though. I don't get a lot of sleep when I have the rack. It usually lasts days, and like the Vortex below, it is thankfully not very frequent.

The Vortex- This one is the most disabling, fortunately the most infrequent, and the most difficult to describe. Unfortunately it tends to stay for a few days. That is a problem as it is unbelievably, indescribably painful, the worst I have ever felt including when I had severe pericarditis. The slightest movement of my body is agonizing. I can barely breathe, taking in only slow shallow breaths.

Doing anything is impossible. My greatest desire was to get up and go pee. The other options I found unpleasant and a bit humiliating. So I tried. I forced myself to get up. The pain was so bad that I lost consciousness and fell down again. I had to give up on that hope.

There is some rather undignified screaming involved, so we have to make sure the house is shut up tight so the neighbors do not think a murder is taking place. The pain just elicits an animalistic response, a scream that seems to come from the most primitive part of the brain.

The only way to describe it is to think of a two foot sized hole in my back. When I move, it is if pain swirls through my body and is sucked down that vortex taking everything with it. It feels as if my very essence is being pulled into that vortex of pain. My entire world, my very existence, becomes all about that pain. When I stop moving the vortex slows and the pain lessens. At the time, it feels as if I may lose myself in the pain. It is the most horrifying thing I have ever experienced.

Pain in the Brain

Fibromylagia pain is bizarre, unrelenting, widespread, and I sometimes think of it as a living thing inside my body. While science does not fully understand it, so far all the research points to a problem in the brain and the way interprets signals from the body, misinterpreting normal signals as pain. There is nothing at all wrong with any of the areas of the body that feel pain.

The worst part of FM pain is that painkillers are ineffective. Whatever pain you have, you just have to ride out. Why this is so is not completely understood, like just about everything else concerning fibromyalgia.

A 2007 study  from the University of Michigan Health System found that patients with fibromyalgia had reduced binding ability of a type of receptor in the brain that is the target of opioid painkiller drugs such as morphine. A 2011 study  published in the American Journal of Medicine showed little benefit from opioids for those diagnosed with fibromyalgia, while there are many possible negative consequences. The study does point out that opioids are frequently prescribed to FM patients, though. It is just that the current science shows that they probably do more harm than good.

Ironically, since it is misinterpretation by the brain that causes these sensations of pain, some types of pain are intense enough to give me a headache. Take that, you misintepreting brain! The headache is real pain. I can take Acetaminophen, and it will help my headache, but do nothing at all for any of the other pain. No pain medication I have tried, including Vicodin, seem to have any effect.

The usual suspects may not work, and popping a pill when you have pain is probably not an option. What does seem to help are drugs that you take on a continuous basis. For me, milnacipran (Savella) has clearly reduced my pain levels. It has also done a lot more for me, as you can read in my Return from the Abyss entry. Others report reduced pain using pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran (Savella), and the more narcotic-like painkiller tramadol (Ultram). For some, over time, the pain reduction effects of these drugs seem to be reduced, which is why a strategy of switching them around every so often works for some people.

The only opiod approved by the FDA for fibromyalgia is Tramadol (Ultracet), a combination of the synthetic opioid tramadol and acetaminophen. That might help my pain and my headache, although I have yet to try it. In reading the review boards where people describe their own experiences, it seems to be, like all FM drugs, very hit and miss. It helps a little for some, much more for some others, and does nothing for many. It can keep you awake at night, which is counter productive, and the long term effects are not clear. It can also be addictive, but when you have what is basically permanent pain with no cure, this is the least of your concerns if it works.

I have found that exercise helps. It is really really hard to exercise when you are in pain, and you can not do intense exercise. That can be a pain trigger. Even when I hurt, I try to walk regularly. It seems to help me, and the science so far seems to indicate that it is generally helpful to FM patients in reducing pain.

Many FM sufferers have sleep problems, and I do notice that I have more pain when I do not get enough sleep. It is sort of a vicious circle, as when I have the rack pain I toss and turn all night unable to get comfortable and waking frequently. This might be why this sort of pain tends to last so long, as I have to get to the point of utter exhaustion before I really sleep.

There is acupuncture, but the reports are mixed. It does seem to relieve pain in some, but is not a long lasting solution, providing only temporary relief. My pain is constantly changing, and I can never predict when it will be mildly annoying or truly disabling. There is no way to schedule a treatment fro when I might really need it. For those who have constant disabling pain, a short period of relief might make sense. There is a second reason this has so little appeal to me. So much of my pain has been the stabbies (see my Words for Snow entry) where I feel like I am being stabbed. While at this point I could care less about the pin prick of shots or having blood drawn, I don't want to be stabbed for real to deal with my pain. Psychologically, this just has no appeal at all. It also almost seems like a homoepathic “like heals like” approach, and I detest homeopathy, and you'll learn why in upcoming entries about quack medicine.

I have a thought about accupuncture, completely unsupported by any science whatsoever, and not based on any direct personal experience with it. So take it for what it is worth. Sometimes I have small areas of pain. I have discovered that by pushing down on these areas very hard, enough to induce a real pain response, it can sometimes seem to reset the pain. It might be that the real pain resets the fake pain signal. It might also be why the Tens system (transcutaneous electrical nerve stimulation), which provides a continuing electrical tingle, seems to work for some, although it did not work for me. It does not seem to work when I have larger areas of pain, or more intense pain. I just wonder if there is any similar underlying root effect between my pressure technique and accupuncture.

Crashing Down to Earth

I had made miraculous progress after starting on Savella. From being barely functional, I could start writing again. My head was clearer. The pain was less. And I felt more like myself than I had in years. Friends told me that it was as if the old Jeff had gone away and now he was back.

My doctor was amazed at the progress. He had never heard of anyone coming as far on this drug as I had.

Then I began to notice problems. I was quickly out of breath when walking. Sleeping was becoming more difficult. This seemed to be primarily because my heart was racing. And it got worse. It felt like I was constantly running a marathon.

I had read that this could be a side effect, and so I went and read some more. Many people were quitting the drug because they were unable to get their hearts under control.

Watchdog group Public Citizen petitioned the FDA to pull Savella from the market. They claimed it was dangerous. They claimed that it was ineffective. I knew better on that later part. It worked very well for me. I got my life back. If I gave up Savella, my only real choice would be Lyrica, and that did nothing for fibrofog, my most serious symptom, the one that robbed my of my identity and made me completely unable to function in any useful way. I was not willing to give it up without a fight.

I did more research and learned that Public Citizen was also telling people not to use Lyrica because its risks also outweighed its benefits. Perhaps they need people on their committees who have these diseases before they decide these things. I was less concerned about risk than function. If my options were between a few years of clear headedness, or a long life of confusion, disorientation, horrible pain, and a feeling of utter uselessness, it would not take me a millisecond to decide. Suicide is the number one cause of death for people with fibromyalgia, and I absolutely understand. When your symptoms reach a certain threshold of misery, life is unbearable. If I experienced the pain of the rack or the vortex (See Words for Snow entry) constantly with no hope of relief, I would not hesitate to do the same.

I went back to see my doctor. They hooked me up to the EKG. He looked at the results and turned a little white. I had significant tachycardia.

I was lucky in that I had the right doctor. He said that normally he would pull me off this drug immediately. In light of the amazing transformation it had accomplished for me, though, he was willing to work with me to find something that would lower my heart rate. I made it very clear I had no interest in going back to the way I had been. I was willing to take any risk.

After some trial and error what we came up with was 100 mg of Metropolol twice a day. We had tried a once a day slow release version but it petered out too early and my heart would start racing by night time.

My heart still races from time to time, especially if I am late taking the second dose. I have been on Savella for over two years, and the improvement I had has been maintained. It is not a cure. What it did change was me being in bad shape most of the time to me being in bad shape some of the time. That is a huge difference, because before I could not get anything done. Now I am moving forward with some pretty big personal projects that I hope will put me back on the road to actually making money again.

Working at a normal job with fixed hours would still not be possible. Sometimes, either from fog or pain, I am unable to drive. The fatigue hits me and I am down for the count. Some days I just have to stay in bed. But overall, I am able to do so much more than I was. I feel like myself most of the time, and I feel like I have a life. That is huge.

Back from the Abyss

Things were desperate. I was unable to work. I could barely think most of the time. I was constantly fatigued. I was in pain almost all of the time. My personality was altered- I felt as if I had lost the core of myself. I had no hope, no sense of a future. It was no way to live.

I had prided myself all my life on my ability to think myself out of any problem, and now here I was with this most essential ability fully compromised. What I could not do, though, was give up. I had to find an answer.

On one of my clearer days, I hit the Internet. I would keep searching until I found an answer. Finding an answer would be my full time occupation.

I checked out hundreds of sites and postings, and began to see a pattern of comments from people who were having very good results with a very recently approved FDA drug. It was called Savella.

Reading people's actual experiences with a drug was enormously helpful. While I wanted some relief from the pain, the most important goal for me was to clear my head, to be able to think clearly again. Savella seemed to offer help with both.

I did learn that many people quit before they really got started. When you begin titration, slowly increasing the dosage up to the full dose, many people reported that it was very unpleasant. Many people give up, because starting on this drug makes you very sick. Knowing that going in was very helpful. I would have quit had I not known. It was certainly nothing my doctor or pharmacist warned me about, but to be fair, the drug was so new, neither of them had dealt with it before.

After reading countless personal experiences, this drug seemed to offer me the best hope. I went to my doctor and told him I wanted to try it. Fortunately, just a few days earlier, a drug rep had come in touting this new drug. He had not gone over the materials yet, but he agreed to, and ultimately prescribed it for me.

I have never felt as sick in my life as when I started this drug. The nausea was incredible. The headaches intense. I alternated between pouring sweat and freezing. I was miserable, but I would not give up. It brings to mind the scene inside the sea cave in Harry Potter and the Half Blood Prince where Dumbledore insists that Harry keep giving him the green liquid even though it makes him increasingly sick. It was kind of like that. I felt like I was poisoning myself.

By the time I was up to a full dose I was beginning to tolerate it. Some of the side effects lasted longer, but for the most part it was tolerable. In a few more weeks, though, it began to work. My mind was clearer. My pain levels were down considerably. I had more energy. It was miraculous.

Most people do not get the same level of relief from this drug that I got. I was unusual. It was not a cure, but it was enough to allow me to function again. I could build a life. I could have hope.

Introduction

This site contains my musings on and research about one of the strangest conditions I have ever heard of- Fibromyalgia. It is also a condition I happen to be afflicted with.

For me, it is nothing like the commercial for Lyrica, where the woman walks around perfectly normal after popping her pill. I know of few cases of that much recovery. It is a much more devastating and debilitating condition than that. I hate this commercial because it makes FM sound like it is just about a little nerve pain, when it fact, it is a huge constellation of symptoms that can be completely devastating and debilitating. Widespread pain, brain fog, fatigue, disorientation, and a whole bunch of other symptoms make normal life impossible.

Not only is it little understood by the public, almost nothing certain is known about it by medical science. We know it disproportionally strikes women, by some 9 to 1, and we know it seems to be triggered by some type of physical trauma in some people. There is now a lot more evidence for actual organic changes in the brain. What we don't know is what it is exactly, what causes it, and even how to diagnose it. It is not a disease, it is a syndrome- essentially a collection of symptoms.

In fact, a few doctors are fibromyalgia deniers, claiming the condition does not even exist. Some claim it is just depression. Some claim it is a psychiatric condition. Go to the comments on web sites about FM and you'll see tons of people chiming in about how FM sufferers are just whiners, looking for attention, it is all in their head, and other cruelties.

To make things even worse, even when completely debilitated and unable to work, fibromyalgia sufferers are often denied disability. Because it so disproportionally strikes women, they are told it is all in their head.

I do believe it is all in our heads, because I believe that it is a neurological problem. That is becoming the generally accepted notion. The symptoms are too bizarre, too random, too classically neurological for anything else to make sense. Sure, the term my be too inclusive, pulling in a wide range of conditions that are not yet understood. It is mysterious and strange. You cycle through symptoms seemingly at random. But those who have it are really suffering. That part is very real.

Pain is only a small part of my problem. Originally, it was my main problem, and doctors focused on that in trying to diagnose me, but as more and more strange symptoms began to appear, it became quite clear to me that this was neurological, not rheumatological as was the original focus in treating me.

Any casual student of neurology and its history and classic cases will immediately understand just how much about the brain we don't know, and how difficult it is to figure out what is going wrong. That is why this syndrome is so difficult to get a handle on. My guess is that it has many causes.

Since having read a bit more about neurology, what sets this apart to me and makes it so bizarre is that the symptoms step in and out like actors on a stage, each one having a little time in the spotlight before retreating to the darkness of the wings. Many of the symptoms are suffered more long term by others with better known and defined neurological conditions, but they do not come and go seemingly at random. For fibromyalgia sufferers it is if we are trapped in a Costco, with nice young women forcing upon us random samples of  neurological difficulties, and as soon as we finish with that we stumble into another young woman with another different sample we are forced to try.

Fibromyalgia is very individualistic. The way I have experienced this, and what works for me, may be very different for others. I am now on Savella which took me from almost no functionality to having some semblance of a life- albeit with limitations. It does not work for everyone- no treatment seems to, and according to my doctor my response and improvement was much greater than what most experience. I consider myself lucky in that regard.

Because I have been hit with such a wide array of symptoms, my goal on this site is to chronicle and exam them, and try to put them in some neurological perspective as part of my own goal to better understand what is going on.