Joan recalls how she reacted when she learned she had fibromyalgia and describes how this chronic condition has affected her life.
Read the full transcript »
Back in ‘98, ‘99, I was seeing a doctor in Idaho and he had diagnosed me then with fibromyalgia. I got very upset because I said, “That’s a hypochondriac’s disease and no, I don’t have it.” He opened his medical book and he said, “You have 11 of the 16 points for fibromyalgia.” I take two drugs for that at night, basically to relax my muscles because when you sleep at night you are in one position for a long time and after you are there say for maybe an hour or even two hours, you wake up and your muscles are hurting so bad and you have to get up and walk around the house and try and shake it off and so that you can maybe lay down. So they gave me muscle relaxers for that and one of the things that I asked the doctor about was, “Could this be because it’s an autoimmune disease? Could this be one of the contributing factors?” They don’t know the answers to that question. There are so many questions that they don’t have the answers to, but they are investigating it and one of the questions on the 100-page form that they have you fill out is “Do you have acid reflux? Have you been treated for heartburn - severe heartburn?” And before I started taking antacid drug I would jump out of bed. My lungs would be hurting so bad and it was a very acidic, there was air, you would be coughing and choking, drinking water to get it out of your system and out of your mouth. And so then you take some more antacids and go to bed and you may be okay that night; you may not. If I know I am going out and having Mexican food, I know that I have to make sure that I take my medicine two hours before I eat anything or two hours afterwards. So if I am going out, I take it two hours so it will have time to work and that is just for the acid reflux. Cinnamon is another one. Apple pie will set acid reflux off but they believe that there is some correlation or some link between acid reflux and maybe IPF, and when I found out that I was diagnosed with fibromyalgia I was very upset. So I called and made an appointment with the doctor, a neurologist at the Mayo Clinic, and they went out, when I went out there they put me through a battery of test. One test right after another; blood test, x-rays, the whole nine yards, and this is all done through a resident doctor out there, I believe they call him a PA or Physician’s Assistant, and he does most of the interviewing with you. After he left the room that day and the testing was completed and I had gone back to get all of the results the doctor opened the door and he come and he said, “Joan, would you stand up just a moment,” and so I stood up and he reached out and he took hold of my arms right here and it immediately brought tears to my eyes because I was so sensitive. And, so then he apologized and he sat me down and he went over the symptoms that I have had through the years and looked over what I had been to with my primary doctor and he said, “You do have fibromyalgia,” and he said, “There is very little that we can do to treat it except just help with muscle relaxers, etc.” So that’s what I am doing with that. Is there a correlation though, between one autoimmune disease with another one? We don’t know. So we are at stopping point right there.