My grandmother died when I was about three or four years old. It was understood she had rheumatoid arthritis. Her hands and legs were not deformed but she was wheelchair bound and in extreme pain. Her legs were swollen like tree trunks. She had ulcer-like sores on her legs. She died of kidney and heart failure.
My mother told stories about a relative whose "tongue turned to stone." (I do not remember whether it was my grandmother, her great-grandmother or an aunt.) However, the phrase haunted my mind as I watched my mother die, for she too had what could be called "a tongue of stone."
My mother used to come and help me out when I had problems with my muscles and hands. It was hard for her to understand what was wrong with me since she was always in excellent health. She died less than a year after giving me heck for not trying harder to get well. She died from progressive systemic scleroderma. She had a fall, and three months later she was dead from kidney and heart failure.
My mother's diagnosis of scleroderma came from an internal medicine physician in Windsor and was later confirmed by doctors at McMaster's. My symptoms in the mid 1980's were extreme muscular tiredness, and severe pain along my arms and legs that followed the bones.
My fingers would swell—especially the fingertips—and during that time I would spread the fingers apart to keep them from touching each other, and my fingers would curl because they were in less pain, I think, in that position.
I would keep my arms above my chest and away from the sheets because although sheets are light they were too heavy for my arms. Around 1985 and 1986 my sensitivity to the cold was so bad that I bought an electric blanket. I wore longjohns and socks and pajamas. Under the blanket I would rotate my body because the part of my body facing the electric blanket would warm up while the other part absorbed the coldness of the sheets on the bed. It was horrendous. I kept my head and hands covered.
The air inside my shower was such an extreme temperature difference to the water that I would literally race through washing myself within a minute or two so I could get bundled up. My blood pressure was low low…69 over 140, but it fluctuated all the time. Low to 129, never high. My mother had this low to mid bouncing blood pressure as her first symptom. The high came with the kidney and heart failure which was just a couple of months before she died.
My temperature was 94°. My chest would hurt with each heartbeat. In 1986, I had tests. Nothing conclusive. An ultrasound showed a slight inflammation to the right side of my heart.
Then one day it all left. The sensitivity to the cold…the extreme cold hands, the blood pressure returned to normal 120 over 80, the temperature back to normal, the pain in my fingers which caused the curling were gone. (My mother separated her fingers and had sores around her beefy red swollen fingertips.)
But now it was gone. Tiredness, fatigue, muscle weakness, the pain down the arms and legs that I interpreted to be bone pain, but still I am not sure what it was. Life was wonderful again. And I was walking and running again, just not as fast as I used to, but I was energetic.
Then in 1998, after some heavy product fell forward onto my arms and body at work, it started all over again, but SLOWLY. My tired right arm was diagnosed as tendonitis. That was in September. By October my body felt sore all over. By December, pain was from the ankle up the leg about 10 inches. To me it was bone pain. My fingers started to hurt and curl by January. My doctor did not have any answer but to take it easy.
The problem persisted. My work required me to pick and move hundreds of pounds. The exhaustion now made me cry at the end of the day. The pain was so unbearable in my arms, legs and hands that I finally quit and switched jobs, even though it meant losing the insurance.
My doctor had referred me to a rheumatologist but she took no tests. My rheumatoid arthritis test was positive but she did not believe that arthritis was my problem. I have high inflammatory counts. My bouncy blood pressure came back as well except this time it bounces from the 90's to 159 (taken at the hospital.) I am presently trying to control my blood pressure and stabilize it by diet. It now bounces only to 129 maybe 136. I do not take it very often.
How am I today? In extreme pain. My arms are rigid. The skin is extremely painful on my arms. The skin looks tight and feels tight, with a reddish hue. My fingers are slightly swollen and curled and the ends especially are very painful and of course, they are kept separated.
It hurts for me to rest my palms or wrists down when I type or sit in a chair, so I keep them up and if I have to, I rest them on my elbow. The good news is that my ankles are not swollen except for the Achilles heel on my right foot. As all the other symptoms increase the pain from it does too.
The only other odd thing is that I have a red dot on my face which has been there for the last couple of years but it has developed an irregular diamond-like slightly white patch around it. The patch is outlined with a slight red color and there are broken veins next to the patch. My mother had veins broken all over her face and especially the scalp—but then again that was just maybe 3 or 4 months before she died. However, her arms were soft and white with virtually no broken veins nor redness, nothing unusual.
Right now I am trying to find a name of an internal medicine physician. So I am on a quest. I can't track down the one that treated my mother at McMaster Hospital in Hamilton, but I think I might be able to trace the physician who initially diagnosed her in Windsor.
But I have questions that maybe someone out there maybe able to answer. Is there any one out there who sleeps with their arms up with their elbows supporting them? (Not behind the head or back over the head on a pillow.) Is there anyone whose skin on the arms hurts when moving the arms as in walking etc.?
Is there anyone who has rigidity of the legs from the ankle, up about 10" up the leg that makes walking difficult, but whose legs are even more inflexible when trying to lift them when they try running even a short distance? (My mother's legs were very, very heavy before she died.)
Is there anyone else who feels that their family has a history of scleroderma ?
What does tapering of the bone mean in the fingers, and can the bones in the legs taper too? That is my main concern.
I am a very happy person. I plan to be happy for a long time. It is difficult for me to be sad for long. I keep telling myself little jokes. I find life around me too beautiful to avoid.
I know if I behave myself that whatever happened before to make me go into remission from whatever I have may happen again. And if not, I am at peace with the good Lord.
Story posted 6-14-2001
Story Artist: Shelley Ensz
Causes of Scleroderma: Genetics
Types of Scleroderma
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
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Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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