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Linda
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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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