Lynn Paarmann firstname.lastname@example.org
I appreciate all of you who have sent in your personal experiences of Still's Disease. I had never heard of this disease prior to being diagnosed, and had never known of or communicated with anyone who had it, so it was wonderful to finally find the Still's Disease Home Page, thanks to Tom.
I have had Still's for almost 5 months. It started around the first of July, 1996, with a swollen gland in my neck. I am a 42 year old woman, have been fortunate enough to have enjoyed excellent health all of my life, and even rarely get colds or the flu. However, I started to worry because my swollen gland was lasting for about 2 weeks. My sister, a nurse, urged me to consult a doctor. I went to my primary care physician (who had technically been my doctor for about 4 or 5 years, but who I had only seen one or twice). He did a step test, which was negative, but prescribed an antibiotic anyway. I thought that was rather strange, but just assumed what I had would go away like every other minor illness I had ever had. Two days later I started developing the typical Still's symptoms we all know and hate - intense myalgias, arthralgias, and high fevers. At night my muscles would hurt so bad I could barely move, but I still thought whatever I had would just go away eventually. On Thursday (I had seen the doctor on Monday), I woke up with the typical Still's rash on my arms, and decided it was time to call the doc again. I talked to his nurse, who said I probably had the flu or a reaction to the medication, but to continue taking it any- way. I knew I didn't have the flu, and of course, antibiotics aren't effective with viruses, so I stopped the amoxil. I did feel a bit better that day, but of course the muscle pains started up intensely again at night. After spending a horrible Saturday night, I decided to consult another doctor. I belong to an HMO, but went to an "emergicenter" on Sunday because my insurance would pay for that. I tend, even now, to be much sicker during the late afternoon or evening than during the day, and the doctor told me I probably had some virus that would go away on its own - although he tossed out the possibility of polymyositis or some type of malignancy. He also told me I wasn't that sick. For someone who almost never sees doctors, I was getting very resentful of being made to feel like a hypochondriac. However, he did suggest I get a referral to an internist who could do some tests if I didn't feel better soon.
The next day I called my primary care physician's office at 8:00 a.m. and asked for a referral; the nurse returned my call at 5:30 p.m. only to be told they were seeing a lot of what I had and not to worry. At that point I decided they were incompetent idiots and decided I had to help myself because the people in that practice wouldn't. I called my insurance company and changed primary care to the emergicenter, figuring they would give me a referral. They did, thank goodness, after doing a complete blood count and finding that my white blood count was about 20,000. I was immediately sent to an wonderful internist, who is now my primary care physician. She told me she understood I had been getting the "run around" but that she would try and help me. I have never been so grateful to anyone in my life! After examining me and finding nothing, she tentatively diagnosed me with Lyme Disease, prescribed a 60 mg. of prednisone and also tetracycline. She also ordered a slew of blood tests to try to rule out things and come up with a more definite diagnosis. I felt better for 4 days, but as soon as I dropped to 40 mg. of prednisone, all of my symptoms returned full force. Also, every test except the ESR (which was 120) had come back negative. At that point, she decided to refer me to an excellent rheumatologist, who is currently treating me. I have to say that I was becoming rather suspicious of all doctors by then, but I was very lucky to have found 2 good physicians who took me seriously.
After more blood tests, an abdominal CT scan to rule out malignancies, and a consult with a dermatologist, my rheumatologist called to tell me he thought I had adult-onset Still's Disease. Of course, I had never heard of it, even though I had read my Merck Manual almost from cover to cover (I had skipped the pediatric section!). This was about the middle of August. At the time, I thought it took forever to diagnose me, but I now know I was very lucky to have gotten such a quick diagnosis. I was given a prescription for indomethacin by my internist. However, it did take the medication a long time to kick in - about 2 weeks. My sister told me it often takes NSAID's 2-4 weeks to have an anti-inflammatory effect. One morning, I actually got out of bed without excruciating pain in my muscles! I was still feeling bad, having joint pain, and high fevers up to 104 F. My rheum. told me to take Tylenol, and that did prevent the fevers. I would usually take Tylenol in the late afternoon when I would start to feel sick, with a sore throat, and I stopped getting high fevers. I still continued to feel bad, though, and decided to take a temporary medical leave. I am an educator - a reading specialist - who provides individual tutoring to young children but my main responsibility is to train teachers to work with children with reading problems. I was supposed to have a new class of teachers from several school districts, and knew if I started the year-long class, I would have to finish it, and it would be a full-time job. I was still in considerable pain, and having some central nervous system disturbances from the medicine, although I was convinced it was the disease.
Every 3-4 hours around the clock, I would start to feel sicker than usual, get dizzy, and generally feel confused. My muscles and joints also would hurt more. It felt like I was suddenly being poisoned, but I thought my body was poisoning itself. One night I even ended up in an ambulance and in the hospital in a sort of a stupor. I saw a neurologist and had a brain CT scan. At that point, the doctors suspected the medication. I remained on it a while longer, but was getting wackier and wackier, so we changed to Lodine. That same night I didn't have a "spell" for the first time in a while, and that marked the beginning of me getting better. The Lodine did work for awhile, but caused high blood pressure and didn't effectively control the joint pain, so we switched to Naproxen, which I am on now (500 mg. twice a day).
I am back at work now, and have been doing reasonably well since then. I still have considerable pain in my knees, hands/wrists, elbows, and shoulders/upper arms. I have been told I don't technically have arthritis, but suffer from "arthralgia." I am thankful for that, and feel I have been lucky in many ways, but am tired of things hurting and am hoping that one day soon I will be like I was before Still's. Even though I am no longer incapacitated, chronic pain takes the pleasure out of everything one does. I would be interested in knowing how other's remissions occured. Do the disease remissions tend to be as sudden as the initial onset? Does a remission mean all symptoms are gone, or just that they are lessened? Thanks again for all of your histories. I am sure they are helpful to all who suffer from this disease
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