It was so gradual, it was like a pine tree growing, you could not see how it grew from day to day, but you noticed at different intervals that growth had occurred.
The most intense emotion that I remember feeling was the fear. I had no idea what was wrong. There were so many symptoms. I want to say the first really scary symptom was my stomach. I began to feel discomfort on a daily basis. It seemed like no matter what I ate there was no getting away with anything because my stomach was going to hurt. I was constantly nauseated. I finally ended up in the emergency room and from there to the gastroenterologist. It was a journey of fear and doubt. Was my body betraying me, was I finally getting old, did I deserve a terminal diagnosis?
During this time my body aches are getting worse and worse. Most of the time the pain is chronic, but often it would become acute. I remember talking with the orthopaedic doctor and being told that there was nothing that could be done about the pain in my hand. He gave me a horrid cream to measure and then rub on twice daily. I found no relief and was nauseated by the smell. When I went to the follow up appointment, he announced that the cream had no smell.
The usual pain in my neck, knee and lower back came and went, but mostly came. I began to feel all kinds of pain more acutely; a small bump became a debilitating incident. I remember crying over a small injury and being mystified by the level of pain.
Again, it was the fear that was the most exhausting. What is wrong with me, why am I hurting so often, why am I tired, why is it difficult to move around after a lot of activity?
After an endoscopy, I found out that the amount of ibuprofen I was taking was burning holes in my stomach. I had lots of painful ulcers and a hiatal hernia. I was elated to learn: no celiac disease and no h. pylori. However, ibuprofen was the only magic to work fighting my pain.
From my hand, to my neck, to my back and my knee, everything was measurably worse. The new hand doctor started with cortisone shots, he was somewhat cruel in the application so that doctor did not last long. In the meantime, I had to go to a different doctor for the rest of my body. This was a daunting task. No pain relief and now my chores and errands have doubled. I had to have x-rays and MRIs and all sorts of other evaluations and sometimes the doctors themselves became the problem (like the cruel one).
The medication to help cure my ulcers was an unfortunate mix of help and hindrance. While the medication reduced acid in my stomach and my unrelenting nausea was slowly receding, my body became unable to properly absorb necessary nutrients: an old diagnosis of anemia reared its ugly head again.
Months and months go by and it seems endless, I find a pain management doctor who performs several procedures. Her choice of medication for me makes me faint and dizzy, so once again I am without even a hint of pain relief. Lying down on the bed becomes agonizing as the muscles refuse to respond to pain relief. The procedures help, but cortisone is dangerous to the body.
Now I have to change my primary care doctor, the new medications confuse my hormones and now, my thyroid is not operating correctly (again). Does the madness ever end? Then I remember that I am basically okay. I can still work, see, feel and hear. I am not able to walk as much anymore, but I AM STILL WALKING. No more sissy-baby for me, I had to get myself through it.
Eventually, the right medication begins to work. It takes months to get the correct dosage and finally, I feel as if I can maintain. It’s been over a year since that trip to the emergency room. I am finally at the point that I understand the disease and I have accepted it. My fear has somewhat abated. I am not looking for the worst anymore. Fibromyalgia has become manageable.
Several people have blamed the fibromyalgia diagnosis on stress and over extension of my energy. I don’t know how it started, but I sure wish I knew how to make it end.
While I was in it, I wasn’t me. I wasn’t the person that I used to be, I’m still not that person. Reconciling the new me with the old has been a difficult task. I judged that old me as better, after all, she was younger, prettier and she had more energy. I know that who I am now is good and good enough, broken and bent do not mean spent.