The Outstanding Quest

Back in 2009, I wrote the blog entry titled “Expect Frustration.”  Yesterday I got an email that “anonymous” had left a comment, which read “outstanding quest there.  What happened then?”

I looked up “quest” on dictionary.com and found the main two definitions of the word as a noun to be:

1.

A search or pursuit made in order to find or obtain something: a quest for uranium mines; a quest for knowledge.

2.

Medieval Romance . An adventurous expedition undertaken by a knight or knights to secure or achieve something: the quest of the Holy Grail.

Since my writings about Fibromyalgia just don’t fit into the medieval or romantic category, I will take the anonymous comment to just mean a search or pursuit.  And that certainly does fit.  I am undoubtedly on a search to learn how to live as free of pain as possible.  And I am passionately in pursuit of a cure.  That isn’t to say that there is a cure, or that I would be the one smart enough or lucky enough to find it, but I’m unquestionably passionate about pursuing it.

If you’ve never heard of Victor Frankl, you won’t completely understand my next train of thought, so allow me to digress a bit.   Victor Frankl was an Austrian neurologist and psychiatrist as well as a Holocaust survivor.  He spent time in a Nazi concentration camp, while his wife and parents were put to death.   After becoming free again, he founded the concept of logotherapy, a method of dealing with human psychological problems by attaching meaning to them.  I remember one story from his book, “Search for Meaning’ that illustrates it well. A man lost his wife, to whom he was incredibly close.  He became horribly depressed at her death and sought out Frankl in order to find some way to cope.  Frankl asked what his wife would have felt had the man died first.  “She would have had a very difficult time” the man answered.  Frankl then told the man that she had been spared of that.  His living on alone meant that his wife was not suffering alone without him.  Thinking about it that way gave meaning to his suffering, and allowed him to live on with a changed perspective.  

More than once I’ve attempted to put meaning to the pain I feel because of Fibromyalgia.  I began writing this blog in order to reach others and help reduce their pain.  It hasn’t been as successful as I would have liked, but it has had some benefits I didn’t anticipate.  And getting the anonymous comment after not writing for two years was certainly a neat surprise.  

The anonymous comment asked, “What happened then?”   Well, after my story about frustration, my life continued day after day.  It is much like an endless replay of the movie “Groundhog Day.”  I continue on “the quest” to end the pain of Fibromyalgia.  Many days are pain free.  Some days are a real struggle.  The quest continues.

The quest is not one of my choosing.  It is more like the quest undertaken by someone who finds themselves lost in the woods.  They have no choice about their next action; they need to find their way.  

I’d like to think that it is me that makes the quest outstanding, that somehow I am special or have found a unique road.  But I can clearly see that it is the Fibromyalgia that distinguishes this search.  

And so it is that today I have come to understand that just as all who are lost in the woods must take up the desperate search to find their way, all who are afflicted with Fibromyalgia must embark on the outstanding quest.    Few people know what this involves.  I know what it involves, and to those on the outstanding quest, I applaud your courage and your fortitude.

My rules for eating to decrease pain

I have 16 years of “experience” in fighting fibromyalgia, and I’m here to tell you that nothing makes more of a difference in my pain level than what I eat and what I do not eat. My rules have evolved over time. I don’t stick to them absolutely, but when I start to feel poorly, I can almost always make myself feel substantially better by getter stricter with these rules.

My rules for eating to feel good in spite of my fibromyalgia:

1. Every time I eat, I eat protein. I build every meal around it. If I am going to eat, I eat at least 6 grams of protein along with whatever else I eat.

2. Avoid sugar and sugar substitutes. If I find that my will power is weak and I decide to eat sugar in spite of the rule, I’ll lessen the impact by eating only the real stuff in the evening with at least 6 grams of protein.

3. Avoid chemicals and additives. The best way to avoid chemicals is to eat whole foods. Eat apples, potatoes, beef, eggs, carrots, barley, etc. Avoid box cereal, hamburger helper, fruit roll ups and everything “processed.” Avoid anything with an ingredient list where you don’t know what one of the ingredients is (for me that eliminates most things with an ingredient list)

4. Use caffeine and alcohol in moderation, if at all.

5. Eat one serving of yogurt (with live, active cultures) every day.

I’ve found many people are not willing to make the huge lifestyle change to eat differently. I believe that if you try it, you’ll experience a real difference.

You can prove to yourself whether what you eat does or does not make a difference. And if food can control your pain level, don’t you want to control your food?

Is Fibromyalgia my enemy?

I’ve spent many years trying to have a better attitude, think positively, and maintain good feelings about others. Often when I write about fibromyalgia, I refer to “the war,” “the fight” or the strategies of “the enemy.” But my inner voice wants to know, “Is fibromyalgia really my enemy? Wouldn’t it be better to put a different spin on it?”

In my early years with fibromyalgia, I experienced a lot of anger toward my situation and the voice inside my head would sometimes chastise me for feeling that way.

You have heard it said that you should, “love your enemies.” But fibromyalgia is not a living being. You and I are under no moral obligation to love this particular enemy.

Yes, fibromyalgia is my enemy, but it isn’t intelligent. It follows prescribed methods just like gravity. If I drop a ball, gravity pulls it to the ground. If I try to sleep sitting up in a chair, fibromyalgia pulls my muscles into pain.

I could be angry with gravity for making me hit the ground if I trip and lose my balance, but there is no motive or malice on the part of gravity. Fibromyalgia is like that too. Whatever I might feel, my enemy has no emotions or intentions whatsoever.

Because my enemy is not a living being, I can badmouth it all I want. I can hate it or be angry with it if I choose, without committing any moral misstep. But if I choose to feel all these negative emotions, the feelings can actually do me damage. Stress and intensely negative feelings will actually increase my physical pain. So even though I’ve chosen to call fibromyalgia my enemy, I am careful about indulging in bad feelings about it.

I’m engaged in a war. I didn’t start it, and there is no end in sight. Because my enemy has no spirit, there can be no turning things around and making friends. My enemy will remain my enemy always unless someday it withdraws (and then it will simply be my former enemy).

Wars are easier when you understand your enemy and can predict their next move. Here are some of the characteristics of my war–

• My enemy’s weapon is pain.
• The weapon becomes more powerful when I direct anger and frustration at my foe.
• The weapon becomes weaker when I take meticulous care of my health and well-being
• The war will continue tomorrow. The enemy is always on the outskirts of my life. Whatever methods I use for today’s battle, the war will continue tomorrow. All of my weapons are temporary. The stretching I do today, helps today. The pills I take today, help me today. The chemicals I avoid & the nutritious things I eat only last until the next chemical exposure or the next meal.
• My enemy’s weapon is temporary too. The pain level changes. If I eat better tomorrow, stretch, avoid chemicals, and relax, chances are good I will feel better.
• Without a miracle, neither of us will ever “win the war.” In other words, fibromyalgia won’t kill me, but I won’t ever get rid of it either.

My own choice of weapons gets better when I keep these things in mind

• The enemy can’t think or plan. The path my enemy follows is like the behavior of gravity. If I can figure out the behavior, I can win many battles.
• Some strategies have undesirable ramifications. Since all “wins” are temporary, they aren’t worth great sacrifices. For me, this means that when I consider taking any new drug, I need to consider whether I’m willing to take it for the rest of my life. If it will only help while I take it and I’m not going to take it forever, should I take it at all? I need to ask what the side-effects are, and carefully consider the consequences.

Perhaps you have a different perspective on fibromyalgia. If so, I’d love to hear it. I know that I can learn a great deal from both my friends and my enemy. I am becoming stronger and better because I’ve fought this war. If you find yourself engaged in this same kind of struggle, I hope that you can gain something positive from it.

Temporary Treatments, Perpetual Health

After the last couple of posts, I’ve been doing a great deal of thinking about how all of the treatments for fibromyalgia are “temporary.”

What I do or experience today has costs or benefits today. This is true for the drugs I take, the exercise I get, the stress I experience or avoid, the chemicals I am exposed to or elude, the massage or physical therapy I receive, the sleep I get or fail to get, and the food I eat.

At first, this seemed really depressing. I need to “treat” my fibromyalgia every day in order to have any benefit. The treatments are all temporary, and the relief is temporary.

But then I started to think about the nature of my life.

Eating is temporary. There is no “cure” for hunger. I eat today, and tomorrow I am hungry again. I am just as hungry & maybe more so.

Drinking is temporary. Even if I swallow all of the water I can possibly ingest, it wouldn't be many days before I would die of thirst if I don’t drink again.

Sleeping is temporary. There is no way to avoid that either. I sleep tonight and by the end of tomorrow, I need to sleep again.

Breathing is even more temporary. How long can I go without breathing? I can’t even go one hour without breathing.

So in a way, eating, drinking, sleeping, and breathing are all “temporary treatments" for keeping us alive. There is no "permanent cure” for sustaining our lives.

If you keep on breathing every minute, the air in your lungs is temporary, but it is also continuous. Because you breathe perpetually, you will never asphyxiate.

If you keep on treating your fibromyalgia every day, your health will also be perpetual.

Treating our fibromyalgia can become as habitual as anything else we regularly do to keep ourselves healthy and alive. Our regimen will be more extensive and require greater discipline than those whom we think of as “normal,” but we can attain an acceptable quality of life.

Rejoice in the day. Be happy that there are things you can choice to do that will make your pain subside. If you live in the present and make positive choices now, your future is bright.

Antibiotic Therapy

An anonymous comment on my last blog post referred me to http://www.roadback.org/ for information about antibiotic therapy for autoimmune diseases.

Here are some of my impressions after looking at the website:

• The general website appears to give very helpful information for those whose particular problems are related to rheumatoid arthritis and scleroderma. If I had either of those problems, I would most certainly try this therapy.
• I counted the diseases on all of the patient testimonials back to 2002. I only found two that were classified as “fibromyalgia” and both cases were young teen females.
• The site's educational article on Fibromyalgia is titled “Fibromyalgia- is there an infectious connection?” It poses the question, but it doesn’t answer it. www.roadback.org/index.cfm/fuseaction/studies.display/display_id/135.html

The web site says: “This therapy is not a cure; it is, however, a highly effective treatment.” My translation is, “Just like every other thing you do for your fibromyalgia from taking hot morning showers to swallowing any other medication, it lasts temporarily and does not cause you to get over your fibromyalgia.”

Further searches on the web revealed that “Drugs known to exacerbate lupus or increase the risk of allergic reactions in people with lupus, include some antibiotics (sulfa, tetracycline).” There were also a couple of speculative articles about the possibility that antibiotics had actually caused lupus in some cases.

So, the bottom line is that the road back website doesn’t even claim that antibiotics are the cure for fibromyalgia. It might be a valid treatment. I certainly can’t pronounce any real judgment on it without trying it.

However, based on my research I have decided not to try it.

My ability to cope with fibromyalgia is based on lifestyle choices that “line up” with each other. The pieces of my lifestyle are all pulling my health in the same direction, like the draw of a compass needle. Taking long-term antibiotics would run counter to the flow. Antibiotics could kill off all the good bacteria in my body and allow yeast to flourish.

I’m doing well with my lifestyle approach. For my situation, antibiotic therapy seems like a real risk for not much chance of gain.

Whatever therapy you consider for treating your fibromyalgia, I hope that you research it carefully and make the decisions that are best for you.

Will I ever get over fibromyalgia?

Everyone who is given the diagnosis “fibromyalgia” wants to know, “Is it curable? Will I ever get over it?”

In the beginning, I saw a rheumatologist who told me that I didn’t necessarily have fibromyalgia. The onset of my pain occurred many months after a car accident, and so he thought it possible that I had “post-traumatic myofascial pain syndrome.” He recommended physical therapy and said there was a chance it would make me well. If not, my condition would probably “turn into” fibromyalgia. Looking back, I think he gave me that diagnosis to keep me hopeful. I don’t think there was much difference in his mind between fibromyalgia and myofascial pain (expect that people more often recover completely from post-traumatic pain). I think he believed that if I were going to have a chance of getting better, I would need hope. The physical therapy helped with the pain temporarily, but it didn’t make me well. Still, I continue to hope.

The same rheumatologist told me that sometimes we can “get used to” pain. He said “At first it is difficult to bear, but after awhile we just go on about our routine and if we don’t focus on it, it doesn’t bother us much.” I remember thinking that the level of pain I was in at that time would always be unbearable. I knew what he meant because small pains like a paper cut or a slight headache can be ignored. But I knew with all my heart that the severity of the pain I felt at that time could never be ignored.

Prior to the pain and the diagnosis, I drank about six cups of coffee a day, I ate whatever I wanted, I didn’t pay attention to how much sleep I got, and I drank alcohol in occasional binge amounts. I did what I wanted, and all of my negative behavior never affected how I felt. But now that I have fibromyalgia, unless I experience a miracle or someone discovers a cure, I will never again be living that kind of lifestyle and be free of pain.

Fibromyalgia is not black and white. It is shades of gray which vary from day to day, and year to year. It is a little like the 1 – 10 question they ask you in the medical facilities in the United States. How bad is your pain on a scale of 1 to 10? Think of 1 as being very mild pain, and 10 being the worst pain you have ever experienced. Today my pain is a 2, but fifteen years ago when I had the conversation with the rheumatologist, it was a 9.

In the early years after being diagnosed, I didn’t understand the huge difference that lifestyle can make. It didn’t seem like anything I did made a difference. It seemed like the fibromyalgia pain came and went on its own time schedule. I suffered a lot during those years.

Today I know that how I live makes a huge difference. I can influence whether my pain is going to be a 9 or a 2. I can make the difference. I can live well with a pain level of 2. I can continue to work full time and live a full life.

But will I ever get over my fibromyalgia?

I am allergic to cats. Will I ever get over my allergy? I admit that it is possible. There is always hope. How should I proceed then? Should I buy a cat and hope that it doesn’t kill me? Wouldn’t it be better to avoid cats altogether. If I avoid cats, I won’t suffer from this allergy. I won’t be aware of it at all unless I am around cats. So even though I might never get over my allergy to cats, it is possible to live without any allergy symptoms.

But will I ever get over my fibromyalgia? Do you believe in miracles? I do, and therefore yes, I could get over my fibromyalgia. And yes, you could get over yours. There will always be hope.

While I pray for the miracle that will free us all, I will continue to do the things that decrease my symptoms. Taking guaifensen and following good lifestyle behaviors have brought me to the point where my pain is so mild that most of the time I can actually forgot about it. I have some pain-free days. Most of the time, my pain is very mild.

My advice to you is to do everything you can to keep yourself as healthy as possible. Sleep well, make good choices about what you eat, avoid everything that causes you discomfort, stretch your muscles daily, keep your stress level low, and don’t lose hope.

My advice is to you is to hope and believe that you will someday be free of fibromyalgia, but make all of your lifestyle decisions as if you will have it forever.

My lifestyle list - The things that make me feel better, worse

Things that make me feel better -
• Eating protein with every meal
• Avoiding sweets, aspartame, and airborne chemicals
• Getting enough sleep
• Taking guaifenisen
• Stretching every day
• Moderate exercise
• Taking flexeril when necessary

Things that make me feel worse –
• Stress
• Eating sweets
• Eating aspartame
• Being around airborne chemicals
• Not stretching every day
• Not getting enough sleep
• Wearing uncomfortable or too-tight clothing
• Not getting enough exercise
• Getting too much exercise
• Catching a cold, flu or other virus