My Adventure with Stills Disease
By Caroline J Robinson
I was 44 years old on August 8th of 2001. I had my first grandchild on August 1st and had the official diagnosis of Adult Stills disease on September 17, 2001. I am not really sure when the disease began, but I am positive about when it began severely disrupting my life. That total disruption and chaos began in full swing just about Thanksgiving of 2000, but let me lay some groundwork just in case it becomes significant to researchers later.
My jaw started popping for no apparent reason when I was 11 years old and my parents were divorcing. I guess we could call that a stressful situation. Since then, I have had bouts with my jaw being too “tired” too chew and it is now arthritic. At about 12 years old, I started having problems with my blood sugar levels and became officially diabetic at 32. I was diet controlled until December 2000, about a month after Stills started raging war on my life.
By the age of 20, I was in chronic pain and have been ever since. I also suffered waves of extreme fatigue which was blamed on stress and since my life was stressful, (who’s isn’t?) it sounded good to me. I tried to eliminate stress, which is, of course, impossible. There is virtually not a day that has gone by in 24 years that I was not in lots of pain one place or another. I took muscle relaxers, pain pills, anxiety drugs, and antidepressants, had osteopathic and cranial manipulations. I did aerobics, weight training and other physical activities. I was checked for Thyroid disorders, Lupus, rare arthritic conditions, and other things. Still I had pain every day and the diagnosis was muscle strain / sprain. The pain was tolerable on some days, other days not. Fatigue was like the ocean, sometimes high tide, sometimes low. When I woke up in the morning, I was stiff from my neck to my hips, like someone had stolen my spine and replaced it with steel bars. I had headaches, so severe my own breathing was too loud. More medications and exercise prescribed. Of course, being difficult to diagnose, I also saw a couple of “mental” doctors. While mental cleansing was helpful on some issues, it didn’t help a bit with pain, fatigue and so on.
I had a second baby at 26, got divorced and had so much pain, even knocked out on painkillers I still moaned in my sleep from pain. And it was then, as one might expect, my life took a pain detour. At 29, I was in a major auto accident with several broken bones and internal injuries. Chronic pain and fatigue sort of faded into the woodwork trying to recover from the car wreck.( I had a cast on my leg for over a year) For the next several years, every pain or fatigue complaint was blamed on the auto accident. I had progressed to the point that using my left arm to do anything, like dishes or cleaning would leave it dangling like Eor’s tail. It was attached to my body, but I could not make it move. If I did not “stress it out” I did okay.
I began water therapy, which did make me feel better, but I could not move my arm for a while after each session. My arm and my legs eventually began to feel weak for hours after the exercise so I quit. I decided that I needed to exercise, but this therapy seemed to be making parts of me worse, not to mention that we had discovered I was allergic to chlorine. (Oh joy!) I was told I had Sympathetic Reflex Dystrophy. I rode bikes, did low impact aerobics, walked and did weight training, My arm got better, but still experienced weakness, as did my legs, if I demanded too much. I am an A personality so I strive to be the best and give 150 % to every thing I do. I learned to “baby” my arm a little, and it helped, even though I am strong willed and determined by nature.
I had another child, my third, at 32 (1989), and was diagnosed with Type II Diabetes, which everyone had seen coming for quite a while. She is almost 12 and I would say I have had fatigue disrupting my life ever since, in addition to the joint and muscle pain, and the never-ending headaches. I have learned to live with pain so that unless pain is all I can think about, I can almost ignore it. (If I can’t ignore it, I must be knocked out to cope with it, it is that severe.) Fatigue is another story all together.
I was tired of complaining and not finding answers. My heart was beating too fast all the time, and sometimes felt like it was about to jump out of my chest. My husband could tell when my heart was acting up if he was holding my hand, as he does regularly. He could feel it jumping all over. Both of us were scared. I wore a heart monitor but it was decided that some people can feel their heart beat, and others can’t. ???? My heart issue was like a freckle on my heart. It made me mad! I told that doctor that if his heart was acting like mine, he would not settle for that answer.
So in 1995, I became frustrated with “modern” medicine and turned to Homeopathic and Chinese medicine. I did indeed feel much better, and lived with much less pain, but still had degrees of fatigue, pain, headaches and such. 1996 brought with it several episodes of unexplained fevers of 105 degrees for a week or so at a time, sore throats and swollen glands (that to this day have never gone away), more fatigue and aches and pains and no diagnosis. I seemed to “crash” from exhaustion every 2-3 days. It would take 2-3 days to recover. My normal temp is 96.8 Ã 97.4. (I was checked for Wilson’s Disease but did not have it)
In 1997, my right knee ached so intolerably all the time, I ended up having surgery for a suspected torn meniscus. I did not have a tear, so a lateral release was done to put my kneecap in better alignment, just in case that was the cause. My knee still aches, only worse now since the surgery and the injury to the muscle from the lateral release. There was damage to the bone cartilage, but the orthopedic surgeon never mentioned anything about arthritis. Insurance did not cover alternative medicine, and it was expensive, so I gradually spaced my treatments out too far because of the cost, and decided to just live in pain and fatigue. It was all in my head anyway, right?
Soon, I was “crashed” and in bed more than I was out of bed. I worked 4 days a week and slept 2 Ã 6 hours every day after work. I would literally drag myself out of bed, (by whatever means necessary, even if it were sheer determination) to eat and try to visit with the children, then back to bed. I slept virtually every hour of my 3 days off in order to be able to work the next 4 days. I was told to exercise to build energy, but no jarring exercise of any kind, as it would injure my knee, and speed up the blindness being caused by my vision disorder. Nothing like asking for the world, and then tying your hands…but I tried.
In November 2000, I started having a daily fever up to 102. My whole body ached, everywhere. I had major migraine headaches daily. Talk about fatigue!!! I was given antibiotics and started on Diabetic medications. (I had been diet controlled until now) I was shopping one day in April and looked at my husband in the checkout line. “I don’t know how much longer I can keep putting one foot in front of the other” I said. “I literally can not lift my legs, or my armsÃ‰ my legs feel so weak that I am afraid they are going to collapse beneath me, and I will be perfectly happy to let them and just lay there. I think I am dying.”
He called my doctor the next day. We scheduled a complete physical. I usually prefer the physician’s assistant (female) to do the exam. (The doctor has known me since I was 23, and is a good friend. His female assistant just feels better for this sort of thing.) And so began the battery of testing.. I have seen many specialists. (They include but are not limited to Endocrinology, Hematology, Oncology, Rheumatology, Opthamology, Neurology, Dermatology, Gynecology, Orthopedic Surgeons, Infectious Disease, Physical Medicine, Rehab Specialists, Natuorpathic, Chinese Medicine, Acupuncture and others) I have had more blood drawn than you can imagine. We have done blood cultures again and Ã‰ 2 bottles per set, 2 sets and others labs as well, Sometimes 40+ cc’s in one sitting alone. I have had a Brain MRI, Chest and Abdomen CT’s, Comprehensive Metabolic Profiles, Thyroids, Lipid profiles, Stable A1C, Urinalysis, Hematology, Serology and Immunology profiles, Microbiology screenings, Mammography, Pap and Pelvic, Echocardiogram, Chest and Pelvic xrays, Bone marrow aspirations and HIV antibody tests. I have also been tested for T.B, Angiotension, Cytomeglavirus, Epstein Barr, Cat Scratch Fever, Lyme Disease, Lupus, and many others.
Since April of 2001, I have been diagnosed with Carpal Tunnel, Cytomeglovirus, Empty Sella Syndrome, Enlarged Spleen, Epicondilitis, Epstein Barr Syndrome, Fibromyalgia, and Tachacardia and Tendonitis. I was told these were not the cause of my fever, but could explain some of the pain and fatigue. I spent May 11 Ã July 2 flat on my back in bed. Too exhausted to do anything. A trip to the bathroom 15 feet from my bed exhausted me enough that I would sleep for 2 hours. I was too tired to feed myself, and reading a book expended way too much energy. (You must lift and hold the book and then, find energy to turn the pages, supposing you had enough stamina to read and retain what was on the page. I just could not do it. I rarely even had strength enough to watch television. )
I was asked to return to work for at least 4 hours a day, beginning July 2nd. Somehow, I managed to work 3 days a week, 4 hours a day. I have not been able to work more than that since, and 3 days a week is done with great effort. I came home and slept 2-6 hours after work each day. I slept all weekend. This is not a life! I was totally unable to do litterally anything other than drag myself to work, and rest… so I could drag myself to work again.
From November 2000 to July 2001 I saw every doctor imaginable. Without a diagnosis, and at the end of my energy rope and patience, I again turned to Chinese medicine for relief towards the end of July 2001. And this time, my insurance decided they would pay for it, since it seemed to be the only thing doing me any good. (Any wonder that I at times pondered if I was depressed, or just frustrated?) Acupuncture and Chinese herbal teas (made especially for me each week by the doctor) proved to be a lifesaver. Still experiencing fevers, headaches, extreme fatigue and pain, but less than before. I continued seeing specialists in allopathic medicine for a diagnosis. I had received many diagnosis’s of various things wrong with me, but none that explained the continuing, daily fevers. In Sept 2001, my Rheumatologist said I had Adult Stills Disease. I was given Trazadone to help with sleeping problems and pain. We tried many others, but found the Relefin was best tolerated by my chemically sensitive body, and managed quite a bit of the painÃ‰ but not all. I attempted to take Plaquinil for the remaining pain and fatigue, but it made me too ill. I am still mixing Chinese and Modern medicine with acupuncture and massage. Still trying to find the right medicine cocktail that will help me function, and balance my life. I was laid off December 1, 2001 and have gotten some much-needed rest. I spend most of my time lying down, but find as time goes by, some days I can actually get up a little here and there, and maybe even do something.
I consider myself fortunate that I have not ended up in the hospital more. I think it is because I started having to listen to my body when I was very young and having blood sugar problems. Maybe my strict diet for years due to chemical sensitivities has helped my organs stay healthy longer. Possibly the alternative medical treatments have helped more than I realize. Then again, maybe all of the above. I still struggle daily with fevers over 100 degrees. I still face major fatigue every day, and some pain somewhere, but most days, the pain is tolerable. I may be stiff, and achy, but I still know how to smile, and find good in my life. Maybe soon, I will be in remission.
Yahoo ID: blacklionent
AOL IM ID: (my husbands, he will reply too) jrobin1962
Location: Medford OR
Birth date: August 8, 1957
Date of Onset: Diagnosed finally with ASOD late October 2001, but suspected onset is much eartlier
Other Health Conditions:
MAJOR: Adult Stills Disease, Diabetes, Diverticuli disease, Fibromyalgia, Krukenburg Spindle Syndrome, Migraines, Necrobiosis Lipoidica, Neuropathy, Empty Cella Syndrome, Splenomengaly, Uterine Fibroids, Valvular Heart Disease
MINOR: Astigmatism, Carpal Tunnel Syndrome, Cat Scratch Fever (resolved), Cytomeglavirus, Disbiosis, Epicondilitis (Tennis Elbow), Epstein Barr Syndrome (Resolved) Fibrocystic Breast Disease, Hyatal Hernia, Kidney / Liver stress, Tendonitis, TMJ.
Persisting Symptoms: Chronic Fatigue, Fevers over 100* daily, daily major headaches, muscle joint and body pain, swollen glands (5 years and counting), difficulty sleeping, crashing endocrine system, and acute environmental sensitivities.
(Boy! THAT was depressing!!! Majority of illnesses diagnosed this year, and in alphabetical order)
Current Medications: Avandia, Prandin, Trazadone, Salsalate, Prednisone, Methotrexate, Homocysteine Balance (which includes B vitamins and 1MG of Folic Acid), Cal Mag Citrate, Vitamin D, and lots of Chinese Medicinal Herbs most would not identify with, but email me and I will give you more information.
Occupation: By trade- Internet Administrator and Marketing Research. Currently unemployed (as of 12/01/01)
Family: Married 02/14/87 to James J Robinson, a wonderful, kind, supportive man. I have 3 birth children. Amber LaShondra – Born 05/04/1977, Evan Gabriel – Born 03/30/84 and Kamari AnNisha – Born 12/29/89. Amber made us Grandparents on 08/01/01 to a baby girl – Macy Jay. She was named after her father, Matthew Jay. (Macy means “from Matthews Estate”) I have had 3 foster children in addition to my own, Eric, Amanda and Matthew (different Matthew than the son in law) I have 13 siblings, most of which live in the Eastern part of the country. I was born in WV and raised all over the USA.
Favorite Activities: I like writing, arts and crafts, a good movie or book, music, family time and helping others. I also like photography, and am a makeup artist. (I do faces! *Smile*) I am building a web site called…(oops! Can’t tell you, its not ready yet!)