Eleven years ago I was in a car accident that resulted in a severe whiplash. I recovered from this but started to feel really bad over the next few months. After suffering for three years, I was diagnosed with fibromyalgia.
I ache from head to toe, am cold all the time, feel like I am in a fog, in general just am not up to par. I also have really high blood pressure. I am on three different blood pressure medications, but my pressure is still 180/110. My regular doctor never seems too concerned about this. I also take medications for muscle spasm and for chronic pain.
Not related to the fibromyalgia, I also started having a choking problem. My doctor actually laughed and said, "Gee don't you think you are over reacting a bit? You can't be choking as bad as you claim. Look at you, you're not losing any weight." Actually I had lost seventy-nine pounds over the last three years, which goes to show you how much he paid attention.
So I had my throat stretched twice, but after the last one, I am still having choking issues. My gastroenterologist (GI) doctor had me take a motility study so that I could have surgery to fix a hiatal hernia that they thought was giving me my problems. This seemed like it was going to be a quick hospital stay, just two days and no more heartburn.
The day of the surgery I got a call from my regular primary care doctor who informed me that my surgery was cancelled. I was kind of ticked off about it because I really did not understand why they would decide suddenly not to do it.
I went to see the surgeon that day and she said, "Well we can fix the hernia, but you have scleroderma." I said, "Okay, what is that?" She said, "You don't know?" She then told me that I have no L.E.S. and only ten percent of my esophagus is functioning.
I went to see a rheumatologist and he said that all my blood tests were fine, but that my I have all five of the signs of CREST. He prescribed something for heartburn and said, "There, that should fix the problem." After reading about CREST, I do not think that just an antacid will do it.
Now after everything else that has happened in the last three months, I have had to change my primary care doctor, because after treating me for ten plus years he suddenly decides that I do not have a reason for all the pain I am in and he will no longer give me pain medication. I am quite perplexed by this.. he told me that other people with scleroderma don't have the pain that I do, so he thinks I need physical therapy instead. I said, "So because I have scleroderma, my fibromyalgia pain isn't real?" He just shook his head and said he believed that I just thought that I was having pain.
I have tried therapy (both mental and physical), anti-seizure medications, and anti-depressants as well. Nothing works except duragesic patches or heavy doses of oral pain killers, and that is just for a little while.
I still hold down two jobs, but I do not know how much longer I can hang on. I am about to lose my medical coverage because my divorce is almost final. It hurts to walk, it hurts to breathe. Sleeping is a chore as well. I would love to give up one of my jobs, but I am raising a sixteen-year-old and I have to pay bills and afford medications.
Maybe if I could slow down long enough I could look into disability, but I am really afraid to slow down for that long. I understand what "no cure" means and I am trying to outrun it.
New email address needed 08-01-06 SLE
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Story edited 04-30-05
Story posted 05-04-05 SLE
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