Two of my sisters lost half of their hair, to the point where they had to wear wiglets, when they were fifteen years old. My mom also had an unusually thin head of hair compared to her sisters, and she suffered from major depression. But what was causing all this?
I went to nursing school and there one of the things that impressed me was how important family history was. I was teaching nursing in 1971 when I noticed that my mom had an unusual swelling in her legs and she would scratch her legs until they bled. Then she started wearing dark stockings. Six months later she suddenly had a lung problem and was dying. This occurred during flu season and she was sixty years old.
The hospital staff pulled back her sheets to show me her legs, and then took me out into the hall to ask me about the skin on her legs, where her skin was a deep brown and looked as though it had been burned. This was also on her thighs, and the upper portion looked reddish, as though someone had painted them with merthiolate. I was stunned that my mom had kept this from us. She died then, without her doctor really knowing what was wrong with her, and I became concerned that the same thing could happen to me in thirty years.
I got married, and was thirty-five years old and four months pregnant when I started having terrible stiffness and stabbing pains in my toes. My obstetrician did not comment on it when I told him about it. I delivered stillborn, and then within six weeks I came down with large ulcers on my nose and lips, severe joint pain, low grade fever, incapacitating fatigue, minor rashes, bone pain in my lower legs and the crest of my hips, and some swelling in my knees. All my test results were normal. I would stay in bed and get out to go for the lab work. It seemed the more rest I got, the more it subsided.
I started taking twenty-four aspirins a day. My eyes hurt and I could not stand sunlight. My teeth would turn purple and then this would go away. One time I did not urinate for three days and then I started passing huge amounts. My rheumatologists said I had fibromyalgia. I went through a lot of rheumatologists. I finally ended up at a major rheumatology clinic yet the doctors would only prescribe a nonsteroidal anti-inflammatory.
I stood up at a lupus meeting and told the group what I was going through and everyone there said that they had gone through the same thing. I had all their symptoms, but I had bone pain in addition to what they had. I went to other esteemed medical centers and they basically said I was probably depressed and if I just exercised I would feel better.
Finally, one time after I walked too much (since I did not want a friend to know I had difficulty walking), I had such a severe flare that I was in bed for three months. It hurt for me to breathe. The doctor did some tests and she said I had a connective tissue disorder, but she did not know which one. The C-reactive protein test was abnormal and some other test. She said she could not do anything more for me.
During this time my nine-year-old nephew was having severe joint pain and my one cousin was diagnosed with ankylosing spondylitis. We had blood work done and five of us that were complaining of joint pain were positive on the HLA-B 27 test.
I wrote to a world-renowned researcher immunologist who was president and director of Sloan-Kettering, where a friend of mine was being treated for myasthenia gravis (MG). He said our problems were related to HLA-B27 inheritance. He suggested some other rheumatologists.
My arthritis symptoms really eased up after menopause and I was able to work for ten years. My husband passed away and I have a fourteen-year-old son. This past year I noticed in the crack of my inner elbow it looked like I had like a spider bite; it was a red blotch that stayed there for a couple months. I also had some red blotches on the front of my legs. My local physician's assistant (PA) said I should be seen by a rheumatologist. I also have had severe reflux and heartburn. I take prilosec and thank goodness it is an over-the-counter drug, as I have to pay for most of my prescriptions.
I also noticed things seemed to be changing in my arms and it is sort of like my arms have swelled. I saw a new rheumatologist and he said that he did not see scleroderma. Since I last saw him I have developed swelling around my lower hand and now it looks like I have swelling and thickening around my ankle. It looks like I have an egg below my ankle on both sides.
I am now in the process of deciding whether to see either a new rheumatologist or last year's one or a dermatologist that specializes in scleroderma. I also have brown and white spots on my arms and face and a few hard bumps like warts that have popped up, and thinning hair on the top of my head.
Some things that have helped me with my hip and back pain are exercises. I lie down flat, bring one knee up to my chin and hold it for thirty seconds, release, and bring the other knee up to my chin, and then bring both knees up and hold it. I do this several times and then I do not have hip pain at night. I take various medications to help with my symptoms. I have fatigue and need to rest a lot. Currently I am not working.
Email: [email protected]
Story submitted 08-31-04
Story posted 09-15-04 SLE
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