Reading this over a year later I can see how much depression was affecting me. This took me over a month to write. All errors have been left in, so I can see how bad it was, and how far I have come since then.
June 15, 2008
Have you read or heard about someone you know that has Fibromyalgia? Has you first thought been, yeah..but what is it? What does that mean to me? Do you then go to the Internet to find out what it is? Do you then think you understand it?
According to Wikipedia:
Fibromyalgia (FM) is a human disorder classified by the presence of chronic widespread pain and tactile sensitivity. While the criteria for such an entity have not yet been thoroughly developed, the recognition that Fibromyalgia involves more than just pain has led to the frequent use of the term "fibromyalgia syndrome". It is not contagious, and recent studies suggest that people with fibromyalgia may be genetically predisposed. The disorder is not directly life-threatening. The degree of symptoms may vary greatly from day to day with periods of flares (severe worsening of symptoms) or remission; however, the disorder is generally perceived as non-progressive
No one knows what causes fibromyalgia, and there is no cure. There is really, as far as I can tell, nothing that will take the pain away. What I don't understand is how long it takes medically trained people to even think of fibromyalgia, if they ever do. It seems that most people especially in rural areas have never heard of fibromyalgia. After years of pain, I have finally found someone that not only listens, but hears what I am saying. This person is learning about fibromyalgia, so that she can help me cope. This is a blessing. I am not be told constantly to lose weight, and get more exercise, I am trying and she knows it.
There is only one FDA approved medication, however insurance companies want you to try other medications, that are all off label uses. These medications help...sort of, however they make you drowsy, which is bad. Driving while drowsy is a bad thing, so when I have to drive somewhere I do not take any medication, making the pain worse. So, what do you do to stave off drowsiness? I had stopped drinking coke, now I am drinking it again for the caffeine and sugar to help me have energy. I do not drink coffee so that source is out. Then some might suggest diet coke, but fake sugar is out according to the website about the medication I am now taking.
So you are still in pain, some days better than others, some really really bad. Depression is always with you, and on your worst days it can be overwhelming.
So besides almost constant pain, there is what is called fibro-fog. I have a hard time focusing on things I used to take for granted. I used to be able to read a book in a day or two, now I reread paragraphs, even sentences and have a hard time understanding it.
I like to cook, but standing in my kitchen is torture, and the concentration is sometimes just beyond my reach.
gardening was once a pride and a large source of joy to me, now it is very difficult. I am left wondering if I will ever be able to have a nice garden again.
One of my hobbies is beading, and especially bead weaving. Lately I have been able to get beyond the starting point, and if i get farther into the piece I may still end up ripping apart.
I find myself sitting in my chair, the only “sort of” comfortable place I have, not really seeing what is on my monitor/tv, tears running down my face and not really comprehending what I am seeing.
So what does fibromyalgia take from you? Most of the joy in life as far as I can see.
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