For those of you who have been following my blog about the mission trips I have been on, I will be blogging for a time about my journey with chronic pain and illness. I am planning to return to Nicaragua in January 2011, this time it will be a very special trip. I will talk about that more after next week:
National Invisible Chronic Illness Awareness Week September 13-19 2010
My journey with invisible illness started in April 0f 1999. I woke up on a Sunday morning with numbness on the right side of my face. After my boss who is a chiropractor examined me, he suggested this would be one time where he would ask me to make an appointment with my personal physician.
My doctor felt that the numbness could be from a sinus infection and prescribed me some antibiotics and decongestant. I was instructed to call him on Friday whether or not I was feeling better.
Long story short, on the second visit concerning the right side of my face being numb, he referred me to my first neurology doctor.
For several weeks, the neurologist treated me with a anti-seizure medication called Neurontin. In the time between my next appointment I was to have an MRI of my brain and spine to look for any abnormalities. All other tests I went through to determine if I had some other neurological disorder or MS came back negative. Meaning...my body was not showing any signs of MS or any other disease.
The neurologist suggested I continue taking the medication and asking me to follow up every month. Eventually I wanted more answers than what he was giving me. By this point, I was taking 900mg of Neurontin several times a day.
Eventually, I went for a second opinion. In the appointment the neurologist was very kind and looked my history over and decided not to switch my medication yet, as the medication was helping and he didn't want for me to suffer. He mentioned to me that the other doctor's impression was that I was stressed emotionally. He then stated, stress does not cause this to happen, this is not in your head Tammie, you are ill, I am not sure with what but I will figure it out. He did explain that MS does take time to show up in the body and it might be years before we would find anything, so in the mean time he would continue to treat me with the medication I was taking.
I was very relieved the second neurologist confirmed my thinking about stress, and MS, neither was a contributor to what was going on with me, but I was indeed ill. With what we weren't sure. He did perform an emg and suggested by the way my body was reacting that possibly I had fibromyalgia.
All along, I am worried, I was facing living a life with some unknown illness and the doctors weren't ever going to figure it out! I worried about what it would mean for me as a mom, was I going to be able to be a mom, what does this mean for me as a wife, and other roles I had in my life.
I continued to take the medications I was on for another couple years. Along with visiting the neurologist. Every few months I'd slowly go off the medication for a month to see if the symptoms persisted. Finally, the symptoms did go away.
I continued to have difficulties with depression and high blood pressure. I had to have regular labwork to keep track of my liver enzymes and other important organ functions. Along the way the dr. did discuss with me that I may have fibromyalgia as I was starting to have pain and aches throughout my body. But yet he did no follow up work from the neurology lab work I had previously because those had resulted in negative results for Lyme disease, and a host of other diseases. My rheumatoid factor did come back high at this point, my liver enzymes also came back elevated. His thought on the liver enzymes being elevated were that I was taking medication was making them elevated. He did not check any further.
In 2006, to switch doctors. My daughter had needed to find a doctor who treats adults. I decided at her visit I would make an appointment and ask some questions that still plagued me about my health as I was not feeling any better even though the numbness was gone.
In my first visit with my current family doctor, he took blood work, urinalysis, and asked many questions about my health and the medications I was taking. In the time he spent with me he told me he felt I had fibromyalgia and that the only way to diagnose it was to do tests to exclude every disease that would be similar to fibromyalgia. I was to return in two weeks for a visit to discuss the results from the labwork.
Two weeks later, I find out my liver enzymes and rheumatoid factor were elevated again. The doctor was quite concerned about my liver showing signs of damage. He wanted to make very certain something other than medication and being overweight being my problem. I was to have an ultrasound, which showed I had a fatty liver and gall stones! I was immediately referred to a surgeon and had my gall bladder removed and had a liver biopsy to determine how damaged my liver was. My liver enzymes continue to be elevated but not as much as it was when I had my gall bladder. Slowly I am losing weight.
I did eventually go to a rheumatologist was diagnosed with fibromyalgia and rheumatoid arthritis and put on medications for both.
Now I am living a life in the "know" instead of the "unknown". I am no longer sitting and wondering what the mysterious illness that is taking over my life and body.
I am learning that fibromyalgia and rheumatoid arthritis touches every part of my life. Sometimes the two hit so hard I can hardly move, other times like today I am able to get through the day without thoughts of being in bed. I also deal with depression and anxiety. I have dealt with them since I was in high school, back in 1979.
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