I will be thirty years old in April. All my life, I was a thin, active, and popular girl. After the birth of my second child in 1995, I began to gain weight, ballooning up to two hundred and forty pounds within a year. I developed pneumonia on May 1, 1998, and after a chest x-ray, I was told to see my doctor immediately.
My doctor informed me that I had a very large tumor on my thyroid. After a month of tests, the decision was made to operate. I was sent to a thoracic surgeon who scheduled me for surgery two days later. My entire sternum had to be opened to get this thing. When I woke up, he told me he had remove three-quarters of my thyroid and that I would have thyroid problems for life.
Let's fast-forward to 2001. My doctor took me off of thyroid medication in January because the dose caused hypothyroidism. Nobody really knows how one-quarter of a thyroid can produce so many hormones on its own.
One night in March, I was at work when, about 2 A.M., my pants suddenly felt tight. I went in the bathroom, pulled them down and was shocked to see my legs swollen to twice their normal size. I told my boss I was going to the emergency room and called my boyfriend (now husband) to come get me. In the emergency room, the doctor on duty thought I had a blood clot and started me on injections and blood thinners until I could have a venous angioscopy three days later. That test showed nothing.
My doctor then decided I had probably pulled a muscle in my back so he put me on steroids, which made my skin clearer, but did not do anything else. My left leg was tingly as if it had fallen asleep and had not woken up. I continued working a very physically demanding job in a rice mill. As time went on, I began to be in constant pain. My feet would hurt, but it hurt worse to massage them. I could not even shave some parts of my legs, because they hurt too badly.
I was falling apart, but being a divorced mother of two, I pressed on. My entire body hurt all the time. I became angry and irritable. My children were sometimes afraid to talk to me. My boyfriend was very supportive and together with my loving grandmother, they convinced me to see a local orthopedist. He ran every test imaginable from bone scans to an MRI, blood work, and an EMG (a neuromuscular test) from which it took me a week to recover. Everything was negative.I became depressed and started thinking it was all in my head.
My family doctor sent me to a rheumatologist who finally diagnosed fibromyalgia. I was relieved to have a name for my problem. Although my family doctor had taken me off work on short-term disability two months earlier, the rheumatologist released me to go back full time with no restrictions. He said fibromyalgia is just pain and if I could not handle my job, I should quit. After discussing this with my kids and fiance, I went to my boss. We both agreed it would be better for me to resign than to get fired for not being able to do my job.
I still have a lot of problems including chronic pain, exhaustion, and inability to sleep. I have irritable bowel syndrome (IBS), headaches, and my leg is still asleep. I know that with time I will improve. I go back to my doctor soon, and due to what I have learned about fibromyalgia and thyroid problems, I am going to request some more tests.
Both sides of my family have a history of various autoimmune diseases, including my Aunt Cindy, whose story is also in this book. I hope one day to lead a normal life, a life free of pain, with the energy to play with my children. For now, I will take one day at a time, counting on my faith to get me through.
My fiance and I married on January 26th! I saw my family doctor last week. He did another thyroid study. My thyroid-stimulating hormone (TSH) was 1.77 and T was.71. He says both of these are normal and I should not worry. I have decided to refer myself to an endocrinologist. My doctor also sent me to see a local cardiologist/pulmonologist (CP) for evaluation. He did not seem to be concerned about my leg swelling. He thinks it is probably hormonal, because I have a history of endometriosis and uterine fibroids. He referred me back to my gynecologist for that.
The CP scheduled me for a sleep study this month. He thinks I may have restless leg syndrome (RLS). My husband says I frequently stop breathing and gasp for air in my sleep. The CP doubts I have sleep apnea, because I do not have a lot of fat on my neck. He looked in my nose and noticed several nasal polyps, which could be affecting my ability to breathe while I sleep. He recommended removal of the polyps.
I got the results of my sleep study today. The doctor said there were no significant findings, but he made the diagnosis of restless leg syndrome (RLS) because he said I fit the diagnostic criteria. I showed the doctor my hands, which were a purple, mottled color. He asked me to remove my shoes and socks. I had purple, mottled toes!
He quickly said, "Young lady, you have Raynaud's." He prescribed a medication for the RLS and gave me some tips for avoiding Raynaud's phenomenon flares. He told me to keep gloves in my purse and wear them if I go down the meat aisle at the supermarket. He also suggested oven mitts when retrieving things from the freezer. I go to see him again in two weeks. I also made an appointment in May with an endocrinologist to check my thyroid. It is going to take some getting used to, but I have learned to adapt to some new symptom on a seemingly weekly basis. Maybe I am back on the road to better health!
On May 2 I had an appointment with an endocrinologist. He was very thorough, doing fasting lab and a chest x-ray. He then spent quite a bit of time reviewing my history and doing a thorough physical exam. During the exam, he felt for my residual thyroid in my throat. He said he thought he felt something there, so took me for an ultrasound. Sure enough, there is another nodule on my thyroid. He started me on Levoxyl, 100 mcg per day to start. He said it's not anything that I need immediate surgery for, but we need to keep an eye on it. When the results of my lab came back, all the thyroid tests were in the normal range. This just goes to show that sometimes a number on a piece of paper can't tell you what's really going on inside.
My advice to anyone reading this is to pay attention to your body. If doctors keep telling you nothing's wrong, but they really do not do enough to find out, find another doctor. I took a picture from the ultrasound back to my family doc who had been saying nothing's wrong. He took one look at it and his face turned red. I politely left the room so he could have some time to think!
New email address needed 05-01-08 SLE
Old Email Prefix: glorybound29
Story posted 2-23-02
Story update posted 3-11-02
Story update posted 4-18-02
Story update posted 6-22-02
Story edited VH1: JTD 9-9-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Irritable Bowel Syndrome
Peripheral Neuropathy (leg asleep)
Restless Leg Syndrome (RLS)
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. 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: