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9-2-08

01 Oct

My life changed on Sept 2nd 2008.  I work in various hospitals. I am an occupational therapist. My endurance has changed ever since I almost died of this mystery illness. On Sept 2nd, 2008, while working in the ICU, I began to feel cold, really cold. After working with a patient, 3 hours later, I had chills. But figured it was the flu coming on. Within a few hours, I had developed a huge lump under my right arm-pit that hurt like hell.  It was  about the size of apricot, sticking out from under my skin. I had trouble keeping my arm down. I was cold, very cold. I kept working but decided to leave a bit early, after my boss saw me and said it was best If I got some rest at home. It was 112 degrees outside. I walked through the parking lot to my car, shivering, freezing, my teeth chattering, muscles shaking as I walked through the Arizona blistering heat to my car. It must have been about 120 degrees when I got into my car, but I still turned the heater all the way up. I drove home, teeth chattering, frozen cold… That  night I awoke, the lymph node under my arm, in searing pain, teeth chattering, and a fever like I had never known before in my life, 103.2

I couldn’t raise my arms due to pain in my shoulder joints. They were somehow becoming frozen, red, inflamed, swollen. Every movement made me scream in pain. I could not lift my arms to drink a glass of water. When the fevers broke, drenching sweats followed with the feeling of ice water being poured over me.

I figured I had the flu. But 3 days later, temperatures still to 103, chills, body aches, muscles shaking and body aching, teeth chattering so hard I thought I would crack them. An Arizona summer, 114 degrees outside, and I would sit on the patio with a sweater, wool coat and a blanket around me. Swollen neck glands so tender I could not swallow. Tylenol gave me a 3 hour window of temporary relief around the clock. And as soon as it wore off,everything started all over again, day after day, night after night.

My abdomen was getting swollen, painful. I would push on this area to try and stop the pain. I would sit on the floor facing the sofa and push my abdomen into the couch cushions to try and find some relief for my abdomen. It never occurred to me to think of my liver.

1st visit at Mayo Clinic, both physicians who saw me felt I needed a strong antibiotic, Levaquin. So far, blood showed a normal white limit. I did as I was advised, I took the medication.

The pills gave me extreme diarrhea ,vomiting and dehydration to the point of delirium and hallucinations. Still nothing had changed. Spiking fevers, drenching sweats when the fever broke, 3 hours of  relief and then temperature went right back up again. The next day my husband took me to Mayo emergency room again, with a very swollen, tender abdomen. MD thought it was due to my diarrhea and vomiting from the levaquin. He gave me I.V. for fluids, then sent me home.

3rd emergency room visit a couple days later at 11pm to Shea Hospital. The ER doctor palpated my liver area, and I almost jumped to the ceiling as I cried out and screamed. I was admitted this night.

Tests followed for the next 10 days, along with checking for 53 different and viruses. CT scans done at 1:30 am, X-rays at 3am , blood cultures ever 4 hours, both arms,  lumbar punctures, specimens taken every few hours. Blood chemistry labs revealed that my liver enzymes were dangerously high. My Ferritan level was at the worst time 14,000. 103.2 Fevers, shaking, chills, diarrhea, drenching sweats when the fever broke every several hours and a rash was developing. I looked like a raspberry.

Dry heaving and vomiting constantly. It was 8 days without solid food so far. I was on a liquid diet. All the blood vessels in my eyes, and around my eye sockets were bloody from broken blood vessels. It looked like blood would spill from my eyes if I leaned forward.

On the 7th day in the hospital, my veins collapsed. A PICC line  was placed in my left arm to my heart. This made things easier. At least no more having puncture my arms to have labs drawn at 1am and 4am. I could not tolerate any light. My eyes were so sensitive. I felt hopeless. At points suicidal. One painful day blended into the other. My rash appeared in the evening at 7pm with all of the symptoms, but would mysteriously disappear by morning. The MD in the evening would document a rash covering my body, but the morning MD would not see it. They were puzzled.

On the 10th day I was released in a wheelchair. I could not walk more than 15 feet.I went to recuperate in another city with my parents since I could not stand for more than 2 minutes or walk more than 10 feet. They came to get me and drove me. Nothing had changed. In fact I was now worse than when I went into the hospital.  I slept 18 hours a day for weeks. I had lost so much weight, down to 99 Lbs from 130.

No diagnosis or explanation of what was wrong with me . The infectious disease doctor simply said “sometimes we just never know why some people get so sick, I wish you luck” as he wrote my discharge papers. It was September 9 when I was admitted and September 21 when I was released from the hospital.

The way I found my diagnosis was with the only energy I could muster. For 9 weeks, with blankets and frozen joints, 103 fevers, drenching sweats, a salmon colored rash that covered my entire body and came about at 7pm each night (one of the hallmarks of this disease), teeth chattering, swollen lymph nodes through my body, elevated liver enzymes. I had enough energy to search the internet only 1 hour a day. I typed the same symptoms in the computer every day. One day the diagnosis Adult Onset Stills Disease appeared. I made copies of this information and eventually, shameful, humiliating experience with another physician, I begged and pleaded for a referral. I finally found my way to a Rheumatologist, Dr. H. who has been seeing me ever since December 18, 2008.

To learn more, please read my pages:
My Diagnosis Didn’t Come Easy
What Is Adult Onset Stills Disease.
Evil Visitors

Thank you for taking time to read my journal. Maybe somehow it can help another person.

Stay healthy my friends.

 
16 Comments

Posted by on October 1, 2008 in What is Stills Disese?

 

16 responses to “9-2-08

  1. Chun EVans

    June 11, 2019 at 1:35 am

    Hello, thank you for your blog. My mother was just diagnosed with the Still’s disease. It is fortunate to read your blog and gaining knowledge with the diet. Thank you.

     
    • stillsdiseaseblog

      June 12, 2019 at 3:31 am

      Best wishes to your mother to feel better soon and not flare. It’s a tough road. It can be an exhausting journey. But, with very close attention to her energy and endurance and medication, I hope she feels better soon.
      Sending light and comfort thoughts yours and her way.

      Claudine

       
  2. Kathleen Muthig

    November 14, 2014 at 10:06 pm

    I don’t know if this page is stil active or not. When I gave birth to my only daughter in 1987 I had diarrhea and vomiting all day on the morning of her birth. She was born at 7:01 PM and my temp. following her birth was 103.. I had chest pain, a bright red rash, and very painful joints. My daughter developed a fever when she was 48 hours old and was transferred to a hospital with a NICU and intermediate care nursery to be monitored. The pediatrician who transferred her said her lab values were compared to mine, hers were fine, mine were extremely “messy”, I didn’t ask her to elaborate because I was watching my baby being wheeled away to a waiting ambulance, blaming myself, and in terrible pain and fever. And the rash! The nurses asked me if I had an intense sunburn.Following discharge I would go to the other nursery where my daughter was being monitored and I was so sick I a could barely stand up. That fever, joint pain, sore throat, and rash persisted for about two weeks after she was born.The fever would come on in the afternoon. This was what I call the acute phase of my illness. I had an extremely high SED rate, but I don’t know if anyone checked my ferritin levels or not. The arthritis was at its worst for the first five years of my daughter’s life (this is how I calculate the timing) culminating in Rocephin treatment for Lyme disease, which was likely uneccessary, and two rounds of Medrol, which worked. However, every time I’m ill, no matter what I’m ill with, a milder version of that rash appears on my trunk. I have joint pain on and off to this day. I am now 56, and I have Hashimoto’s Disease, Osteoporosis, and possible Celiac disease. All of my rheumatic panels have been negative except for that one terribly high SED rate so long ago. I never had another child because of my childbirth experience. My daughter after every test known to man was, at that time, perfectly healthy. She now has SLE. I myself have never had a firm diagnosis of AOSD, but I don’t think it takes a genius to figure out what was going on. My problem now is it’s strictly anecdotal on my part, I have no idea where my records are stored. My Primary tends to dismiss me as “anxious”, and I believe I’m going to find a new primary. My GI wants me to see a rheumatologist, preferably at NYU or Columbia Presbyterian in NYC, and she pretty much laughed him off. I showed her pictures of the rash I get and she just shrugged and called it ” non specific”. Then, when it came back following antibiotic treatment for a sinus infection, she called it a “drug rash”, even though it didn’t itch. She looked at two hot joints that I currently have and again, shrugged and called it non specific arthritis. I guess at this point I’m just looking for a little support from people who have been in this position, and some advice would be great, too. I am sorry for everyone who has either written this page or responded to it.

     
    • stillsdiseaseblog

      November 15, 2014 at 3:40 pm

      Hello Kathleen, It sounds like you are still suffering since you had that first flare long ago. You may want to visit a rheumatologist. I was wondering if you get fevers still? I have a page on this blog that has the symptom list of the criteria for AOSD. You may have them? Please see a rheumatologist soon. I hope you do not suffer much longer dear. Take care. Please keep me updated. Wishing you good health.

       
  3. stillsdiseaseblog

    January 7, 2014 at 5:23 pm

    Hi Alice, No, I have not experienced the symptoms you are having of swelling. However, during an active flare I would get tremendous searing pain in my large joints (hips, knees, shoulders, not so much in my hands or feet, although one flare i did have left wrist huge wrist bone flaring and enlarging). Sounds like a good idea to get blood work done to see whats going on. I have not had a flare since March 2011. I have been holding very steady on 2 MTX tabs a week. I am going to taper down soon. My initial thought when you said you flared really bad in 2 months reminded me of each time at around 6-7 weeks after stopping all meds, I would go into a flare. Have you kept a strict journal trying to see when how long it takes for your body to recognize there are no more meds in your system? This is what has helped me. Now, Im a little scared of stopping all meds when I get to the last pill after I stop completely…We will see…and the weeks will be counted very very closely to see if it happens again. Hoping & praying it wont ever rear its ugly head again..

     
  4. Alice Bardsley

    November 7, 2013 at 8:38 pm

    I am newly diagnosed with Stills. I am 37 and started having the fevers in July of this year. I have had moderate RA now for almost 9 years and about a year ago, my Rheumy switched me from Actemra ( which worked great –until it didn’t ANYMORE!) to Rituxan and Arava. BIG mistake! I was on Rituxan from about Nov 2012 until she had to put me back on Actemra , September 19 of this year. Took them a little while to rule out the other possibilities before coming to the conclusion that it is stills. I have NEVER experienced anything like this in my life. I have been hoping to awaken from this nightmare. The fevers are just awful and the chills and the pain in my legs. Right in the groin area. Now, my flare ups seem to be different than when I had flares pre-stills disease. My joints feel like they are on fire. It is an intense burning pain. Especially in my wrists and my shoulders. The pain in my shoulders seems to radiate down to the very core of my shoulder sockets. It’s hard to explain. This is the first post that I written concerning our disease. I don’t know anyone else with this disease. It is a very lonely condition. And it gets old having to cancel out on things because “the fever” is back again!!! Ugh!!!!!! My question…how are your flares compared to before stills? Are they different? I have been in denial about having this disease and just when I shift out of acceptance and think it has “gone away”… It rears it’s ugly head yet AGAIN!!

    Love,
    Alice

     
    • stillsdiseaseblog

      November 8, 2013 at 4:52 am

      Hello Alice, I am so sorry that you are suffering with the chills and fevers. Currently, if you had a chance to read further through my journal, i am now stable (knock on wood). I had never experienced any symptoms before I got Stills. I did have relapses, but it was only when my Rheumy would try to take me off the MTX. The only thing that gets my flares under control is steroids (Medrol not prednisone) and then tapering down on the MTX. My health took a turn for the better also when I started following the anti-inflammatory diet. It isn’t much fun, but changed my life. I found that many of the foods kept me inflamed. I have a section devoted to this topic in my blog. So far, so good and the flares are not bad, just teeth chattering, fever but no ongoing rash and all the other things. I am so sorry you keep flaring. I hope your rheumy finds a combination that works for you. Thinking of you. Wishing you better health my friend.

       
      • student

        June 2, 2014 at 7:44 pm

        Hi Alice,

        Im so sorry to hear about this. I am a student working at a company to find drugs for this disease. Do you mind telling me which medications you have been on and what you currently are on? Thanks!

         
      • stillsdiseaseblog

        June 18, 2014 at 3:27 pm

        Hello Researcher, Thank you for finding my blog. I hope that you have had some time to read through my posts and find some information that can help your research. I am currently on 2.5 mg of Methotrxate 1 time a week. During a flare I begin with Medrol high dosage then taper to Methotrexate after several weeks. Thank you for contacting me. I hope your research leads to a break though of what causes this horrible disease. If you do find interesting information, could you please share it? I would love to learn more of what is being researched. Please check back in and keep me posted! Take Care, Claudine

         
      • student

        June 2, 2014 at 7:45 pm

        Oops, didnt mean to write Alice*

         
  5. Ahmed, MBBS

    January 1, 2013 at 9:14 am

    I am sorry to hear that you had to suffer all these months b4 you were diagnosed, but your story is missing some very important parts to me as a doctor, what led the doctors to your diagnosis? Was it something you told them or was it a finding while examining you? What lab studies did they order? At which hospital was the dx made? Who suggested that u r to be referred to a rheumarologist?

     
    • stillsdiseaseblog

      January 2, 2013 at 6:14 pm

      My diagnosis was a slow, painful process that I probably should write an entire blog section on. It is actually quite disappointing from a patients perpective. I have not written about for several reasons. One being that there is a medical ethical issue involved and the taking advantage of a very ill and weakened person. It brings too many painful memories. I was sent home from the hospital after 10 days, as you have probably read in my blog, without a diagnosis. The following 3 months were the same if not worse than my actual hospital stay. I went to recover at my mother’s home since I was too weak to walk to the toilet by myself, or even bathe. I was down to 101 pounds from a healthy 129 Lbs. I mustered the strength once a day to bundle myself with quilts while I had drenching sweats and chattering teeth and vomiting to sit at the computer for 30 minutes and keep typing in the same symptoms over and over, praying for an illness that matched mine. I know, I know, trying something over and over that does not change is the definition of insanity, but this one day, it worked after 12 weeks. The diagnosis of Adult Onset Stills Disease matched my criterium exactly. I phoned a primary care physician. I was so debilitated, so extremely weak, that I could not hold my urine due to constant coughing. I begged him for a referral to a rheumatologist. This was the only type of physician I could think of that would treat Adult Onset Stills Disease. He declined to refer me due to his explanation, “that disease is so rare, it would impossible for you to have it”. I called his office, begged him again the next day. Please, I begged, I know this is what I have. He asked me to come to the office. He asked me to disrobe so that he could due an “inspection” of my body. I did as ordered and he gave me the referral. I cried for 2 days afterwards due to shame and anger. I arrived at the Rheumatologists office, he had 3 residents with him. He asked me not to say the disease I had out loud so that his residents could try and figure out what I had by my labs which the positive ones were: ferritin level pf 14,000 however iron was low. ALT 734, SGOT 53, fluticasone 157, H&H 9.7 & 20.0, C-Reactive Protein 12.7, persistent diarrhea, full body welts/rash, severe lymphadenopathy, extreme joint swelling, vomiting, drenching sweats with shaking chills and rigors. All other labs negative for RA, Lupus, etc. Including 53 viruses checked from malaria, Epstien Barr, dengue fever, Que fever, AIDS, Hepatitis, etc, etc. His residents failed to pin-point my disease. And he said ”take a good mental picture of this, you will maybe only see this 1 more time in your career, she has Adult Onset Stills Disease”. Then, I was sent for oncology to review lymphadenopathy results, negative. I was started on high does of Medrol and tapered down to to Methotrexate. This is the short version of being diagnosed with Adult Onset Stills. The dilemma is that it is a disease of exclusion and finally narrowing down to the diagnosis. Thank goodness for the internet and a tiny bit of my medical savviness. I just wonder how many have suffered and are still suffering without a diagnosis. I have witnessed 1 other case in the hospital since then and pointed it out to the MD that maybe its Stills??. I found out a few days later the patient did have AOSD, he took the credit, of course

       
  6. Michelle

    December 11, 2012 at 1:27 am

    OMG! My older sister is suffering through this right now. She vomits just about everyday. Has extreme fatigue. Sleeps a lot. Has been in and out if the hospital. She was finally diagnosed in October. We unfortunately haven’t found a doctor as she hasn’t been able to work and doesn’t have insurance. I am fearful for her and just need help trying to figure out how to help her stop vomiting at least until I find her help. Does anyone have an answer? Please help.

     
    • stillsdiseaseblog

      December 11, 2012 at 4:37 pm

      I am so sorry your sister is suffering. I am not sure why your sister is vomiting, my situation was due to many, many lymph nodes enlarged and my liver enzymes, from what the MD’s told me. Was your sister diagnosed with Adult Onset Stills Disease? I am hoping that the doctors gave her some medication to stop the fevers. Does she also have all of the symptoms of rash, chills, joint swelling, etc, etc. If she is having all of these horrible symptoms, please find an MD who will give her a prescription for her inflammation? I am not a doctor. I just know what my MD has given me. I hope she can feel better soon. Through out my journal I have kept track of what has worked for me. I am so sorry your sister is suffering 😦

       
  7. Erin N.

    April 12, 2012 at 2:07 am

    Reading this brought tears to my eyes from the bad memories… the exact same thing happened to me after having been told time and again by a rheumatologist that there was nothing wrong with me — that I “maybe” had rheumatoid arthritis and I was just battling a virus and I needed to wait it out. By the time my family doctor intervened I was spiking at 103-104 degree fevers 6 or 7 times a day. After a week in the hospital, I spent six weeks in bed sleeping 15-18 hours a day. Finally, I was diagnosed and put on kineret + methotrexate, which has thankfully brought me a great deal of relief. Thanks for sharing your story. I hope that you are doing well.

     
  8. rachal

    February 11, 2009 at 3:56 am

    Wow, I am so surprised by this entry—it is so much like what my father went through. The same thing, extreme fevers where he was shaking, chattering his teeth, sweating profusely, he also had a rash all over, his joints were literally inflammed and red. It was so hard on him that after a few days, he was unable to walk at all. He tried to sleep but the pain was unbearable. He went in and out of the ER/doctor’s office but no one could put their finger on it. His tests came out pretty much normal. Then, after spending a week in the hospital, he slowly began getting better. His recovery took months. Finally someone said it was Stills Disease but there is no real way to diagnose that….it was all so terrifying. I hope you are well and I hope you or anyone never has to go through what you and my father already have.

     

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