I was just released four days ago from the hospital in Rochester NY with the diagnosis of Stills Disease. In my effort to become informed about this condition I came across this site and have been amazed at the stories and the recurring themes that run throughout our common diagnosis.  I am a 53 year old professional with a happy and full life. I have not had any biological children.

As a child I had several flare ups which required hospitalization and each time it consisted of the spiking fevers to 106, sore throat and painful body aches and weakness. Doctors could not diagnose the cause.  By age 9 specialists at Stanford in Palo Alto diagnosed  me with JRA. After age ten I regained excellent health and was a normal highly active youth and young adult. I was a mountain climber and able to undergo very rigorous physical activities throughout my young adulthood. At times I experienced joint pain and fatigue but generally enjoyed excellent health.

My next episode occurred at about age 29 and at this time it occurred rapidly and suddenly: one morning awakening with sore throat, flulike systoms which over the course of a week or two resulted in being hospitalized with fever, abdominal pain, inability to move my muscles. Puzzled, the medical profession removed my appendics so in in addtion to the raging fever and other “stills” symptoms at the same time the body was trying to recover from the effects of surgery. This period of hospitalization lasted almost six weeks and the fevers and chills were so severe that I was submerged in ice blankets for 48 hours at a time. Specialists streamed into Strong Memorial Hospital to try to figure out what was going on. Like so many of the stories I have read at this site each specialist claimed I perhaps had any thing from lupus, to Mediterranean Fever, to lymphoma. Significant liver damage ooccurred  during this episode but once all the symptoms gradually subsided, after about three months I returned to work and slowly but surely returned to a fully functioning lifestyle without any apparent damage to joints, organs, etc. The diagnosis was that it probably was RA, but none of the millions of tests the ran were ever conclusive about anything.

In 1990, age 43, I was vacationing at Cape Cod, I ate a lot of shellfish, got sunburned, and one day went on a long bicycle ride. That evening I was very achy, feverish. The next morning awoke with that famous sore throat, and the body too painful to move. I  inititally thought it was a horrible virus. We drove back to Rochester that day with me in a raging fever, delirious actually. I went to the ER where I was treated as if I were having a heart attack:morphine and nitroglycererine were incorrectly   administered and within hours I was on a respirator unable to breather on my own. Simultaneously, the fever and chills raged and once again this went on for 4 to six weeks of hospitalization. Specialists at this time tested for Lymes, HIV, lupus and countless other diseases. Out of a process of elinimation they though it might be something called Stills. Although at times I  had some slight rash I never exhibited that rash which so many stills patients talk about or what the photos on this sight show. . I do get a burning feeling underneath my skin.  This recovery took about two months and I was back to work & leading a well-paced and full life within about 4 months.

About three weeks ago, after a very stressful and busy summer, I awoke with those same muscle pains & sore throat, thinking I had caught a flu. Within one day I realized “IT WAS BACK” that curious disease that I have continually denied having.   Hospitalization occurred immediately. I have the most wonderful Doctor in the world and she was very careful that no mistakes occurred this time. Many specialists again looked at me and many came in from the team from ten years ago.  This episode consisted of severe abdominal pain, vomiting at least once an hour, immobilizing muscle pain/weakness. But this time so far I have not had THAT FEVER. I have had the sweats, but no fever. The white counts, as in previous occurrences have skyrocketed, the high SED rate continues. I was fortunate to be taken on by a most wonderful Rheumatologist. There are only five left in Rochester  (a city of almost one million people)and none were accepting  new patients so I have been blessed to have this medical angel take me under her wing. Although some of the consulting physcians wanted to perform gallbladder surgery I convinced them to put me on predisone first to see if this might stem the symptoms  Originally I was adamently against steroids but after a few nights of unenduarable pain in the hospital I welcomed any relief. They agreed to hold off on surgery  and the turn around was miraclulous. Within two days the 80 g of prednisone my pain was significantly reduced. I was able to move & walk, still feeling very weak and dragged out but able to return home.  For the past few days I’ve been slowly improving & predisone reduced to 40. This a.m. I awoke   in great pain  as  at the onset; called my doc & she upped the predisone. I asked why the doc thought the fever didn’t occur this time, because that particular aspect of the disease is one of the most debilitating aspects.  She doesn’t know why the fever hasn’t been there, she speculated that it might be because of the ongoing Celebrex that I have taking, which up until a few weeks ago had reduced the wrist pain that I usually have.   I can get around the house, bathroom etc. but it’s painful. During each of the last episodes I also have had a bad case of thrush which I was told was from the antibacterial drugs.

 It will be interesting to see how this plays itself out.  

What I’m finding so fascinating about this site is everyone’s descriptions of the symptoms; it’s progression, intensity, etc.  It is really wonderful to hear about this rare disease from others who are going through it. While there are so many similarities, the illness also seems to manifest in many different ways and that each individual has a uniquely different slant and symptoms.  

I am especially interested in what triggers this, what we need to do to prevent/reduce symptoms from occurring.  I am also curious about our habits, lifestyles diets, family medical histories. Is there some commonality that we all share or is this just a disease that randomly attacks like most?    For example, during my young adult years I indulged in weekend recreational drug use along with all my “hippie” friends. Then during 30’s & 40’s I smoked and drank alcohol ( the drinking was social weekend/cocktail party type)  I was living that fast track  life style very common in the 1980’s, indulging in whatever felt good, regardless of the effects, like extensive traveling, sunbathing, eating very rich foods.. I have always worked , some say I am a workaholic.  Looking back I wonder if these unhealthy practices had an impact on this Stills disease?

Prior to my last episode in 1990 I had given up all smoking, drinking etc. and was practicing Tai Chi Chuan, meditation and a very healthful diet. After my recovery in 1990 I continued to practice yoga &  tcc, never have had another drink although I occassionally smoked although never more than 10 per day and mostly not smoking at all. And generally I consider myself to be enjoying a  love filled, serene, fairly self disciplined and extremely   contented life for the past ten years.

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