Adaptation, Little Girls, and the Spirit World

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

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

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

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

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

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

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

Hope and Despair

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

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

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

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

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

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

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

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

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

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

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

A Challenging Diet

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

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

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

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

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

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

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

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

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

No Sweat

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

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

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

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

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

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

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

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

Death

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

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

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

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

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

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

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

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

Cannabis

Cannabis

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

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

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

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

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

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

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

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

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

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

It's Not Your Fault

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

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

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

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

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

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

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

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

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

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

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

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

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

Riding it Out

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

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

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