It was hard for me to get through the school day. Even during recess when other kids were running and playing, I remember just sluggishly walking around until recess would be over and I looked forward to sitting at my desk and laying my head down. My mom took me to the doctors quite a bit because of shortness of breath, allergies, and pleurisy. The doctors were never able to find anything definitive.
I ended up going to college but it was very difficult. I do not know how I made it through because when I was not in class I was sleeping and never had the energy to study. I did not think anything was wrong with me, except that maybe I was extremely lazy.
After college I got married and got pregnant on my honeymoon. It was a horrible pregnancy. I was very sick my entire pregnancy and could not even get out of bed. I went into preterm labor at thirty weeks. With the use of medications, the doctors held off the birth until I was thirty-six weeks along.
Two years later I got pregnant again. This time I started having regular contractions at sixteen weeks. I probably would have miscarried but my doctor put me on medicines that they normally would not use unless the baby was at a viable age. However, the doctors kept changing the medicines because I kept having adverse reactions to them. Fortunately, my daughter was not born until thirty-six weeks and she was okay. She is now eight years old and I have been infertile ever since.
Right after this baby's birth is when I really started experiencing weird symptoms. I was very fatigued and my muscles were so weak that I could not even function. I would rest on the couch for most of the day and I could hardly lift my arms and legs. Simple tasks would utterly exhaust me. I would also had numbness and dizziness, and at times I came close to fainting. By then I realized that this could not be all in my head and I began to go to the doctors and undergo tests. I had an anti-nuclear antibody (ANA) test which was elevated, so I was referred to a rheumatologist. However, the rheumatologist did not find anything and said maybe I had fibromyalgia. I did not feel that he took me very seriously.
Several years later we moved. It exhausted me and left me unable to function for months, so I went to see a family practitioner. He found that my ANA was 1:320 with a speckled pattern and told me I had Undifferentiated Mixed Connective Tissue (UCTD) disease. He referred me to a rheumatologist. She did tests and this time my ANA was only 1:80. She said that was not very impressive and if it was still at 1:320 she would have been concerned. Then she said asthma can cause an elevated ANA as well. The only problem was that I did not have asthma symptoms, and this did not explain the speckled pattern. Anyway, for the next year I felt almost normal, so I did not go back to the doctors and I thought I was getting better.
However, in the last three months the illness has been attacking me with a vengeance! I have had debilitating fatigue, muscle weakness, joint pain, aches all over, irritable bowel, numbness in my extremities at times (which I am discovering is Raynaud's because just before they go numb my hands and wrists turn blue, then red and blotchy), and other strange symptoms.
I went back to the doctor and my ANA is now 1:640 and for the first time my RA is also positive. I have an appointment with a new rheumatologist on May tenth. Hopefully I will get some answers.
Email: [email protected]
Story posted 05-04-04 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Pregnancy and Scleroderma
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: