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Janet Q: UTCD or MCTD

My life had turned into a nightmare.

Strawberry with Blossom by Shelley EnszI was sickly as a child, with one respiratory infection after another, and one penicillin shot after another. I missed up to sixty days of school every year. I was found to be anemic and was put on daily iron tablets. Adulthood came, and I was still as sick in adulthood as I was in my childhood. I struggled through college, with roommates laughing at me as the only young person they knew who had to sleep constantly during the day.

In 1984, I took my first full-time job, and found that in order to make it through an eight hour day, I had to skip lunch to go somewhere to take a nap. I was never able to make it through an evening after work; I had to lie down and sleep again for 2 to 3 hours before I had the energy to fix or eat dinner. I would be good for a couple of hours, then go to bed, only to wake up exhausted and start it all over again.

At that time, I felt something was wrong, and found an internist who found my thyroid to be low. I was put on synthetic thyroid, which did nothing to help. On the contrary, I felt worse than I did before. Along with the fatigue, I had extremely bad headaches which would not go away. I would take handfuls of over-the-counter medications daily. After a year of the synthetic thyroid, the internist lowered my dosage, to no avail. I gave it a good try and lasted one more year on the thyroid, before I finally gave up. I quit the medication on my own.

At this time, I found a general practitioner, and hoped that he could help me. I saw this practitioner for the next twenty years. Over the years, my fatigue grew worse. I also experienced new symptoms: joint pain, muscle aches, headaches, very painful carpal tunnel syndrome in both hands, back and neck pain, the list grew on and on. Over the course of the years, I would ask him for help, and he would run the routine blood tests. On every occasion, he would tell me that the tests were normal, and my symptoms were due to stress and lack of exercise.

My life had turned into a nightmare. I had never dreamed that adulthood could be so miserable. I had never had to cope with the struggle of making it through the bad days as a child, I simply stayed home and rested. As an adult, holding full-time jobs, I was never able to just rest when I needed it.

In 1996, I gave birth to my wonderful daughter. My pregnancy was the only time in my life in which I felt good. In 1998, I began working as a contractor in computer programming. Instead of making my life better, being able to set my own schedule and hours, it made my life worse. Contractors were expected to work sick, and instead of recovering after my constant bouts of upper respiratory infections, along with my other physical problems, I had to work through them. When my child started daycare, it also began a horrible cycle of getting every contagious viral or bacterial infection going around. I was constantly sick, and every infection turned into painful bronchitis! Year after year, from September through May, I was sick, with the longest period of time of wellness being two weeks.

During the years as a contractor, against my wishes, I was put on-call, and for a period of four years, had the beeper nightly. On top of this nightmare and the struggles with my health, I was a single mom, and single-handedly, supported and raised my child. Unfortunately, it was my child who suffered the most through this, with me unable to be the mother that I should have been, struggling with my health just to make it through each day. There were weeks that I got no more than five to seven hours of sleep total for the entire work week, some nights zero hours of sleep. I am sure that this, coupled with all of the other factors surrounding my work, contributed greatly to my physical problems.

There were weeks that I never smiled once, and it tore my heart out to hear my daughter exclaim excitedly one day, "Look Mommy! You smiled!" I can never forgive myself for putting her through these years. There were so many days that I would sit with tears running out of my eyes thinking to myself, "I'm not going to make it to the end of today." The only strength I found was the thought of making it through another day and getting to see my daughter at the end of it. She has been my light and my strength during these very bad years.

In October of 2007, the extreme stress of the IT field got to me and I quit, intending to take six months off to get my life in order. At this time, I was going through one of my 'bouts'. During the past six years, I had noticed that I would enter into these periods, phases or 'bouts' in which my mouth and eyes would dry out completely, and other symptoms would set in. I would be so extremely fatigued, my joints would ache badly, my muscles would feel like they were bruised when they were not. I was experiencing complete numbness in both hands, along with painful carpal tunnel syndrome in both hands. My back and neck were so painful that I could barely fall asleep at night. My headaches were endless, and I found that I was unable to think clearly. My memory worsened and worsened. I choked constantly on solids and liquids, and my entire digestive tract seemed to feel so 'rough' I could barely move, but had to force myself to get to work and make it through the days. I remember on several occasions, talking to co-workers/friends that I couldn't possibly feel this bad and not be dying. I would go through these phases which would last from one to two months, then they would be over. The fatigue was constant, but my dry eyes and mouth would go away, and I would seem to snap out of the very bad phases.

When I quit my contracting job, the 'bout' I was in at the time lasted for two months. After that time, I had two months of relief. In February of 2008, however, I entered another one of my 'bouts' and instead of bouncing out of it, it lasted. It was so bad during this time that I was unable to get out of bed on most days. I was so extremely tired. I would sleep and wake up feeling worse. I was shaky and experiencing horrible daily headaches. I also had joint pains, muscle aches, muscle weakness, pain in my breastbone, complete numbness in my hands, painful carpal tunnel, the horrible dry mouth and eyes. I could not understand what it was or how this could be normal.

I kept going through each day like this, feeling so desperately ill, until I finally went to my general practitioner again and asked for blood tests. Once again, he agreed to the tests, and I was barely able to get out of bed to make it to his office. He ran the same routine tests, and said, once again, that they were normal and my symptoms were due to stress and lack of exercise. I cried. I could not believe that there was nothing wrong! I felt like, for the first time in my life, I had a summer to spend with my daughter, and it was going to come and go with me not being able to get out of bed! In desperation, after talking to friends and having some of them suggest it might be low thyroid, I ordered thyroid medication through the internet. I began taking the thyroid on my own, in a low dose of 15 mgs. daily. For the first time during the whole summer, I felt well enough for two weeks to get out of bed and have fun! My daughter and I made the most of these two weeks!

The period of wellness did not last. In September, again in desperation, I asked friends and acquaintances for referrals to any good internists they knew. One name kept coming up, and I made an appointment with her. After finding my thyroid still low, she doubled the dose, but had me wait the required six weeks to see if there was a difference in the way I felt. After this time, with no difference and with my symptoms getting worse, she ordered several more blood tests. It was after this second set of tests that she found the elevated ANA and referred me to a rheumatologist. Since seeing the rheumatologist, I have been through two solid months of various tests, and after having him find an abnormal dsDNA, along with the elevated ANA, the diagnosis of undifferentiated connective tissue disease (UCTD) has been given to me by the physician's assistant at the rheumatologist's office, although the dermatologist I saw diagnosed me with mixed connective tissue disease (MCTD), and my internist has told me that they are pretty much the same.

I have now been on six weeks of medications for the UCTD, and various medications for the acid reflux, which do not seem to help, plus thyroid medication. I am still not well. During the six weeks, the physician's assistant at the rheumatologist's office cut one medication in half. During this time, my joint aches and pains, muscle aches and horrible headaches came back. I saw her again, and she put me on the full dose of medication. My joint aches and muscle aches have lessened, although my neck and back pains have increased. The headaches are still constant and daily. My skin has changed during the past six weeks. The skin on the underside of my fingers have thickened and turned a yellow/orange. My knuckles are extremely red, dry and cracked, and my skin seems to be losing its sensitivity all over my body. I have a band of shiny skin across my forehead that seems to have no feeling, and my nose has turned extremely shiny. I do not know if these new symptoms are of any concern, since I received no feedback from the physician's assistant after bringing them up.

I have so many questions, but still no answers.

I have been terribly depressed. My family feels that the medications should have been helping by now. They constantly ask, "When are you going to get better and get back to work?" I have to constantly explain that the medication takes from four to twelve weeks before you see any difference. As for whether or not I will see a difference after that time, I cannot predict what will happen.

I always thought that I was all alone all of these years. Reading the various stories on your web site has helped me a great deal. I got used to disregarding all of my symptoms, since I was told so many times that it was nothing but stress and lack of exercise. I hope that there is some way that my story will help others.

Thank you for creating this web site full of warmth and compassion. My heart goes out to all of those with these horrible diseases.

To Contact the Author

Janet Q,
Email: [email protected]
Story edited 02-04-09 JTD
Story posted 03-06-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Janice: Daughter of Scleroderma Patient

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