A Lifetime Of Pain

Posted on October 22, 2011 by Tracy Seekins

In 1998, when I was finally diagnosed with fibromyalgia, I was relieved and grateful to have some sort of explanation for the pain and illness that had been disrupting my life.

It had been a little over a year since I had finally had to stop working due to this previously unexplained illness. I had been poked, prodded, scanned, and tested for an extended period of time. I had been told by at least one doctor that this was in my head and I should just learn to handle my own stress better. I had been made to feel like I was lazy, crazy, and pretty much worthless by doctors and even some supposed friends.

So when the diagnosis finally came I was somewhat relieved. At least there was a name for what was affecting me. At least I wasn’t crazy, though these encounters with many not so nice doctors had almost driven me there anyway.

The doctor who diagnosed me was a Rheumatologist. He said I had one of the worst cases of Fibromyalgia that he had seen. Then he informed me there was very little that could be done for it. He put me on an anti-depressant cocktail of sorts that had in the past had some positive effect upon people with my condition.

I didn’t understand how anti-depressants could assist me with the pain and illness that I had been experiencing, but I tried to trust these “medical professionals” and began the course of action they suggested.

At home I began doing some research on this condition, which I had never even heard of. I looked it up online and found that this actually explained far more than I realized. I was looking at symptoms that I had lived with for much of my life.

At my next doctors visit I asked if this could explain certain things in my childhood, like my knees and jaw popping all the time, but she explained to me that Fibromyalgia was not a childhood disease and that I was even very young at 26 to be displaying it so dramatically within my entire system. This was my second moment of doubt of the capabilities of these “medical professionals”.

I continued to research and learned that Fibromyalgia was not widely understood and that many doctors still denied its existence. I began to realize that even with this diagnosis my life was not going to be any easier and the hope that the diagnosis had given me began to fade.

It wasn’t long before it was apparent that these medicines they had given me did in fact help with some of the pain but not nearly all of it and the side effects were almost worse than taking nothing at all.

It was at this time that the doctor I had been seeing left the practice she was at and returned to her home, out of state. What I hadn’t realized was that she was a visiting doctor and in reality I was quite fortunate to have her for the time that I did because without her I might have gone quite a bit longer without any diagnosis or even the start of finding any real answers.

However, this left me in a difficult position. I didn’t like the other doctor at that practice and so I needed to change doctors. After a few days I did finally settle on a new doctor and got an appointment. This new doctor had only a small understanding of Fibromyalgia but at least with the diagnosis it seemed that he took me more seriously.

They took me off the medicines that were causing me even worse side effects. They began prescribing pain medications and muscle relaxants. Finally, I thought, some relief. Little did I know that I would not appreciate this relief much at all. The side effects of the pain medicine was nausea and drowsiness. The side effects of the muscle relaxant was dry mouth and basically they knocked me out for 10 to 12 hours at a time.

I decided that this was better than nothing but I would only use them on really awful days. Thus I began my journey.

Over the years, few doctors have accepted my Fibromyalgia and understood my pain and illness flare ups and others still have treated me like I was crazy or some kind of criminal. I avoided doctors when at all possible because of the ill-treatment and the fact that over the years there has still been very little any of them could do for me.

I have gone months or years at a time with no medications because I have tried to learn to handle the pain and illness on my own. I have been outraged at the way these “medical professionals” treat people who are suffering through their lives.

One doctor, who I did see for some time, told me that nobody should have to suffer every day with pain, when modern medicine is capable of easing that. She however eventually had her own medical issues and I lost the best doctor I had ever had.

There are many symptoms of the Fibromyalgia that I just have to live with. The worst for me is actually the ever increasing brain fog. It is quite like early onset dementia at times. I lose words, I forget important conversations, I struggle sometimes just to express myself. It’s difficult when you have spent your whole life writing and expressing and in love with words themselves to simply have them disappear from your mind just at the moment you need them.

The pain and illness that sometimes puts me down for months at a time, has become just another part of my life. It’s not a part that I enjoy or like but I accept it. In the beginning that was not easy but then I realized that I had very little choice.

The worst part of Fibromyalgia isn’t the fog, the pain, or even the illnesses that seem to strike out of nowhere. The worst part is being treated like you are crazy or like you are a liar. The worst part of that is that it is more often than not the doctors who treat me this way.

Now I find myself, 13 years after receiving my diagnosis, still struggling to find a doctor that will treat me with respect and listen to me. I find myself still looking at a medical community that argues about the very existence of Fibromyalgia itself. Many Doctors still do not treat Fibromyalgia patients with any respect or care. And the words I hear far too often are “It’s just a part of your Fibromyalgia. You are going to have to learn to deal with it.”