Living With Fibromyalgia

Fibromyalgia, that’s what he called it. My doctor gave me a brochure that described my condition. The relief and joy of knowing this wretched thing finally had a name quickly dissipated as I conducted my own research into this disease. It seems that, although this is a non-degenerative condition, many in the medical field dismiss it as nothing or a product of depression, and this is incorrectly based on the fact, that there is no specific test for the detection of Fibromyalgia. Still many others are ignorant to the diagnoses and treatment of Fibromyalgia patients. In fact, many people, who you thought would understand, do not because the mainstream perception is, if you look fine, you must be fine. You soon discover that very few people are willing to believe that you are sick. Not many friends understand that you can’t do the same things you used to do. Some family members become indifferent to your complaints. You suddenly find yourself in a very alone situation with no one to turn to. The responsibilities and tasks you once handled with ease are now nearly impossible to complete. Mental tasks once completed with speed and accuracy are now cumbersome, and not so accurate. Decisions are extremely difficult to manage, even little ones. Verbal expression, once done with a quick wit and large vocabulary has been regulated to a slow demeaning process in which you struggle to recall the word you were about to say. You can hardly express to anyone what is going on with your mind and body. Every event, every emotion, every thought, every action, every sensory input and every stimulus becomes extreme. Your identity, the very core of your being, is now transforming without your permission. Yet, these things are not the worst part of the disease. From my perspective, the worst part of this begins to show its self when you realize the expectations from those around you, of you, are still the same. You are expected to shoulder all the responsibility, and all the working capacity that you had before. This is not only frustrating for you; it is impossible for you. Try as you may, you will only end up in a worse condition, when you try to comply with the expectations of others. The only thing you can do now is relearn what your body is telling you about what you can and cannot do.

Very little can be done to eliminate the symptoms, but some experimenting with different medications can provide a small reduction of the pain levels. The symptoms seem to run in cycles, good days followed with some bad days, they can be affected by many different things in good ways and bad ways, but sometimes it doesn’t matter what you do, you can still have what is called a “flare”. The flare is an acute acceleration and escalation of symptoms. The flare can last any length of time, from a day, to months, or even years. Most people who are diagnosed with Fibromyalgia are women. Many people with this illness have become disabled to the point where they can no longer provide for their families or even make any contribution their family.

After I was diagnosed, my doctor sent me to local “fibro clinic”. I was fortunate enough to meet some people there, who not only believed this is real, but also understood the reality of what was happening to me. There I learned to reevaluate what was going to be important, and to direct my energies to that. I also learned that to make the most of my energy, I needed to exercise (which seemed impossible at first), and try different kinds of therapy to see which might be ones that helped my symptoms. Exercise, which must be maintained, and must be low-impact, is one of the most important things in dealing with Fibromyalgia. What pain medications are just as important. An open mind to these two things will be what makes the difference in your ability to co-exist with Fibromyalgia. Living, learning, and dealing with my Fibromyalgia had become the most important thing in my life. When you wake up in pain, and shower and change in pain, and go to work in pain, and come home in pain, it is very difficult to think of any thing else. When your movements are stiff and your mind is slow, all you think about is what you can’t do now.

Everything changes, from your work, to your recreation, to your relationships. Nothing remains the same as it was before. You have no idea if what you are feeling is the Fibromyalgia, or a reaction to your medication, or you caught a cold. Symptoms just happen when and wherever they want. Trying to make things up on days when you feel better only serve to create a flare, and make you stay in it longer. Its a vicious circle where the pain drives the fatigue and the fatigue drives the pain, talk about perpetual motion.

My beach ball world was now the size of a marble. Everything not considered absolutely necessary was eliminated from my activities. Some days all I could do was go to work, come home and go to bed until it was time to get up the next morning. Sports had to go, hobbies fell by wayside, church and social activities were abandon, and relationships were left on hold. I no longer could assist anyone at doing anything, and I had been the kind of person that would stop and help just about anybody do whatever needed to be done. Yard work and house maintenance was only attempted on special occasions. Vacation days from work were used as recovery days or catch up days until they were used up. There were too many things I could no longer do and not enough things that I could do; it was a very depressing time. Places that required interaction with large numbers of people left me wiped out for days. Loud places required so much concentration that I felt as if I had run a marathon after only a few minutes of being there. Work became a big issue, and after several months of discussing things, some of the more physical things were shared with others at my work place, and I became more administrative. It is not a perfect world there, but at least they are working with me so far. I know that my family is wondering what happen to person they used to know, and I wish I could give them that person back, but I can’t. The best I can do about that is to be who I am now without deceiving them about the old me returning. I can only hope that who I am now is enough for them. I’m sure they are as confused about what’s been happening as I am, and I try not to forget that they need understanding too. They have to adjust to someone they did not know before, just as I have to adjust to the new me I didn’t know before. There were too many changes that I didn’t want to make. There were so many things that I had to give up. Adventures I couldn’t take. Dreams that died too hard. I was alive, but my life was dead.

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I can still recall, in my mind, the events of the year 2001. It was the year I became someone else. This was not something I had planned, or even foresaw, it just happened.

At a certain point early that year, my wife knew that something was not quite right. I had come home early from work, and by the time she got home, I had already made an appointment to see my doctor. I had experienced some strange aches and pains in the fall of the previous year, but just dismissed them as a product of just growing older. It soon became evident that this was not the case, the strange pains were no longer small and random, they had become focused and intense. As time passed and doctor visits became more numerous, extreme fatigue had become a willing partner to complement the aches and pains, which had now spread to most of my body. Other symptoms began to accompany the pain and fatigue, headaches, cramps, memory loss, inability to concentrate, difficulty in making decisions, even anxiety and irritability. Tests after tests revealed nothing but negative or inconclusive, for any possible disease or condition. No cause was determined, no micro- biological enemy; no chemical agents, no genetic flaw, no imbalance of hormones, and zero explanations for this nearly unbearable state. As perplexing as it seems is the fact that any attempt to subdue the pain and fatigue yielded almost no results. Many different drugs and combinations of drugs were tried to no avail. After several months, I decided I would conduct some research on this myself. I became adept at scanning any medically related articles for my symptoms. I spent countless hours researching web sites for possible conditions or solutions. I became determined to fix this myself, after all, I was known, by my family and friends, as someone who could fix just about anything. After several weeks of research I found enough information and acquired enough understanding to know that I should seek more specialized care than a general practitioner is equipped to give, so I did.

After several more months of seeing more tests with the result of negative or inconclusive it was determined, by process of elimination and some specific physical examinations, I had Fibromyalgia, a chronic illness. A chronic illness, what does that mean?
Chronic, continual, constant, unceasing, unending, persistent, unremitting, never-ending, ever-present, oh just pick one; it all means the same thing… it does not go away.
Illness, sickness, disease, ill health, poor health, not well, infirmity, weakness, unable, inefficient………I had never heard a more depressing thing in all of my life. The most unbelievable thing about this situation was that I appeared, to most everyone else, to be in perfect health. This fact just overwhelmed me to the point that I could not even admit this to myself. How could I, a perfectly healthy guy in his mid thirties be sick? I had even quit smoking a few years ago, and now played basketball and softball on a regular basis. I was now even an active leader in my church, one who was there almost anytime the doors were open. After so many years of observing life, I was finally becoming a participant, and now I am sick when I look perfectly fine. Somebody get a new calculator, because this just does not add up.

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