The Myalgic Encephalomyelitis / Fibromyalgia Society of Alberta

This is a brief outline of my battle with the above diseases. I am a 65 year old woman, now a retired teacher. I was sent by my family doctor to a rheumatologist to determine what was wrong with me. He had been my family doctor for 30 years and couldn’t determine what was wrong with me. The rheumatologist did a lengthy verbal interview with me and it took about an hour and a half. She said that she was certain I had Fibromyalgia, but that until she had the results of some xrays, she could not be certain.

In my second visit, she said that I had Fibromyalgia. I had never heard about this disease. We determined that based on the symptoms I had that it could be traced back to when I was around 10 years old and at diagnosis time, I was then in my fifties.

I got manuals, books, internet info, etc and I was shocked to realize I had the majority of symptoms of fibromyalgia. I remembered my mother taking me to doctors when I was 10 yrs old because I had such pain in my arms and legs. I had horrific migraines, irritable bowel, that put me on the floor with pain, insomnia, anxiety attacks, and under stress, what I now know is labelled fibro fog. As a child, I had TMJ, and at age of 13-15, (I am not sure just when,) I dislocated my jaw yawning. It remained dislocated for over a week, and I couldn’t open my mouth any wider than to suck on a straw. My doctor said it was impossible to dislocate my jaw yawning, but that is what I did. I had to be put under ether and they finally got it back, and I am so very careful to this day, not to yawn very wide, and I chew very carefully. I cannot sleep on my sides, as the pressure on my jaws creates incredible pain in my jaws and in my teeth. I remember clearly, that I was always so incredibly tired, and any extreme exertion would leave me totally exhausted.

Sometimes I get unexplained pain on the skin of my arms and legs and it is sensitive to the gentlest touch. I have been treated for thyroid problems. When I quit a heavy smoking problem, within 2 weeks, I lost an enormous amount of weight, my legs swelled, I could clean my house, and all my neighbours homes, and still have energy left. My eyes bulged out, my hair was dry, and I could eat enormous amounts of food and still the weight dropped to 98 lbs. My family doctor said I had hyperthyroidism, (I was then 37 years old). I was put on medication and had to go for a blood test every week. After I year and no change in symptoms, I was sent to The Royal University Hospital for radioactive iodine. I had one drink of this and after several months, I started to slow down and feel “normal”. After several years, I developed hypothyroidism and have been on medication for this since I was about 40yrs. old. I have many allergies, sinus problems, sensitivity to smells, many that others don’t ever notice, especially chemical house hold cleaners, and cigarette smoke. Visually, I have many floaters, and my eyes are extremely dry. I have acid reflux and have to take meds every day for this. I cannot tolerate extreme cold, nor very hot weather. I have great difficulty with driving after dark, and this is something I also have had since I was a pre-teen. I have had bouts of tinnitis, and have frequent difficulty with swallowing.

I have ended up going to the hospital in an ambulance, for what they thought was a heart attack as I had extreme chest pains, and my blood pressure, which is usually normal had sky rocketed. I spent 5 hours in emergency, and they could find absolutely nothing wrong with me. I later learned that I have what is called chronic rib subluxations that cause pain in my chest and I have trouble breathing. My ribs slip out of place frequently and I have to go to a chiropractor and have them put back into place. The first time I went, I had 8 ribs out of place. This still happens, so when I feel a tightness in my chest and pain both back and front, I go for an adjustment. I find that my fatigue has increased, and I have to really pace myself. As a result, I have retired, even from the after school care I did, with only one student. I have osteoporosis, which was diagnosed in my 50’s.

One awesome gift I have been given, if Biofeedback. When I was 34 yrs old, I had three young children, and my migraines had escalated to the point of being weekly occurrences of 1-3 days in endurance. Someone mentioned to me (in 1977) that biofeedback was something that might help me. My family doctor was uncertain about just what it was, but sent me to a psychologist, who gave me about 8 sessions, hooked up to a machine that helped me understand the difference between tension and relaxation. She was amazing. It totally rid me of migraines, which had plagued me since I was 10 yrs old. I use it for relaxation when I find myself getting nervous and anxious. I am learning to pace myself, thanks Eleanor Stein for the emails, and since all my children are now grown and launched, I am able to do this. I am learning to take care of myself, which has been a most difficult thing to do.

It was a relief to learn that I actually had a disease, and while it seems that it is still not understood by many, it is not “just in my head”. I hope that my story is of use to others with these diseases and symptoms. Thank you.

Cathy H