The Anatomy Of A Stills Relapse, In My world

It’s been 2 years since my last actual “full on, big time, sound the alarm, Katie bar the door relapse”. And somehow, somehow, I have chosen to vaguely remember it, but my family has full details to recall it easily. I did relapse each year for quite a while, due my Rheumatologist pulling me off the meds as soon as I stablized, I kept asking myself, WHY? WHY? WHY? It would be like a cardiologist saying ” Well, Ma’am your blood pressure and your congestive heart failure are fine, and all is stable, now that you take meds! Lets take you off of them to see how you do!!”. I am fearful of flaring again. (sorry I went off on a tangent).

When I begin a flare, I usually find myself in denial. I know everybody is different, and my onset symptoms may be completely different than yours. My fatigue level is quicker, meaning my overall endurance is lower than usual. But I push myself blaming it on not sleeping well, the weather, emotional sitiations, stress levels, exhaustion, fatigue from daily life.

Next, I get a rash, about 5″ in diameter on my right upper chest area right below my collar bone. It always starts there. I try to imagine that its just due to working out, or an extra warm shower. But after a few days, it spreads to my neck area, within a week I get rash on my inner forearms and abdomen and side of my body and my thighs.

I have tried to take MTX at a higher dose to stop the progression, but there is no stopping this evil train, it has pulled out of the station and is hell-bent of pursuing its course. Next, I feel cold chills, get teeth chattering and swollen lymph nodes in my neck. This always comes on around 7pm. Next, I then get a high fever of about 102 or higher in the evening at 7pm (thats my flare hour).

This entire onset process takes about 4 days to a week. I am usually starting steroids by then, but it never really stops the next step that I cry throughout the night due to severe pain and can not work, lose all appetite, lose tremendous amount of weight, and then severe joint pain, frozen shoulders, where I can not even put on my own clothes or lift my arms to wash my face. My wrists bones get inflamed to the point I can not carry items. It always affects my right hip and my knees last. The knee pain is so severe that if I bend my knees at night to curl up under the covers due to shaking chills, teeth chatter and freezing from the 103 fever.

I’m cold, no matter how high the heater on. I can barely straighten out my legs and when I do the joints make a “cracking” noise. It is the same feeling that I imagine hell is. It brings me tears to write about this in detail and the sequence of the course when I flare. The scary thing is, since I have flared 2008, 2009, 2010, twice in 2011, I regret that I am in the 50% that flare ongoing, if not medically controlled. This makes me sad. But I can not, endure another flare, ever. My Rheumy told me that we he would never take me off the MTX, “that we would treat me homeopathically on a low level MTX ongoing”. BUT HE LIED!!! The last time I was there he said its time again to wean me off. He said, “your labs look good, I think its time to take you off MTX again!”

The last flare, I was suicidal. The pain and the repercussions are beyond what most people could even imagine. I am ashamed to write this, but it is true. I started this blog to try and keep a diary of this evil disease, but I am finding out how valuable it really is to make friends with others who have lived, are living and doing their best to live fully. .. I think the mind has a way of forgetting painful events to help us heal. But, with this diesase, it is important to remind ourselves that sometimes its best to mildly remember so that we do not get arrogant to forget what is lurking in the shadows.

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I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.

7 Comments Leave a comment

  1. Your symptoms sound exactly as my flare up start. It’s weird you start living a completely normal life. One question… You just know dont you when it’s a flare do u get a sore throat too? And how quickly do u start ur steroids and at what dose? I’m off methotrexate too.

  2. I 100% understand your frustration and your depression. The depth of the concept that I will likely be on these harsh drugs for the rest of my life has really sank in the last couple of months, and it has been difficult to lift the sadness that comes with that realization off my shoulders. But, having grown up a military brat, I am reminded of part of the Navy SEAL creed: I am NEVER out of the fight. And I do my best to remind myself that the outcome is not predetermined, I will never lose hope, and I am NEVER out of the fight against this disease.

    Stay well.

    • Erin, I hope you feel better soon. I hope that in a short time you will be able to wean down to a maintenance dose of meds that help you lead an active life. It took me 2 years of weaning down slowly from the MTX. Im now on only 2 MTX a week and stay active. A faint rash tells me when to back off or suffer. I always pay attention to this warning. Erin, I totally understand your ambitious active lifestyle ways and thinking, due to the Navy Seal creed you grew up with. Although, I was not raised in military family, I had the other mentality of never, ever stop doing your best to the max degree and be the best you can to help the family back home. Many of the family are back home and never made it here, the thought of wasting this precious gift to live in America was not tolerated. A “lazy person” in my family was doomed to suffer if time was frivolously spent. All my growing up years it was reinforced that “spare time is work time, no watching tv”. So, as your self, I pushed myself all of my life, every minute. (even in my early stages of this disease, with non-existent energy level, I had the drive to clean the oven, my husband put a stop to those crazy thoughts) Maybe that is how I ended up with this? It makes me wonder now, is it a disease of the immune system breaking down from exhaustion???? This is a very curious thought. I do not recall when you were diagnosed, but I wish you the ability to get back your strength soon and do not feel it is the end of the world. Please do not lose hope. Sometimes, I feel this disease has taught me how to pace myself. I don’t think I ever knew how… Stay well my friend. Claudine

  3. I cried when I read your “anatomy” and so appreciate your candor. I felt your pain as you relived these horrid events. As you said so well- “it is important to remind ourselves that sometimes its best to mildly remember so that we do not get arrogant to forget what is lurking in the shadow”. I really have no idea what to look for as “waring signs” since I ignored so much and your symptoms are similar to what I can piece together. I read back on the journal I kept during the pre-diagnosis days and it brought back those feelings in my mind’s eye. The other day I wanted to put some padding under the sheets on the bed until I get a new mattress and just couldn’t do it–reminded me of the padding my family put on the bed in the evenings anticipating the sweats after the chills/fever.

    I appreciate your suicidal thoughts. I have been fighting depression since February and in spite of the fact that the last rheumie visit was good, I came away feeling so down. It was the realization that indeed I have this disease and always will (somehow I thought he would say that I really don’t have this disease–misdiagnosis; you are really the person you were last year) and yes, I am doing well–but almost a year later, I am still (no pun) on steroids. It is the fear and knowledge that it “is lurking in the shadows”.

    I am trying to do many positive things for myself to get and then stay well and continue the journey down on the steroids (now on one mg prednisone daily). I haven’t been released for even part-time work yet and I know that is adding to my depression and sense of identity. I don’t want to get into the thinking that I have failed if I flare–too many other things I have no control over enter in.

    I am so angry/scared and want to run away, too. This mix of emotions is like the Kubler-Ross stages of grief. I wonder if I will ever get to acceptance????? I check each day to see if my wrists are swollen; are my aches and pains different today than yesterday; is that the rash or what? I don’t want to ever be as ill as I was. It took so much out of me and I felt so very bad. I spent my birthday in the hospital. I guess the best present was that I was diagnosed and treatment started and I was getting better.

    So in this spirit of the thanksgiving season, I am thankful for you and this blog. I feel like I really have someone who understands and has given me hope. You are an inspiration and courageous for sharing your story.

    Bless all of you. And bless our crazy rheumies

    • Patty, I have not had to take steroids for 2 years but I have a suggestion for you. You mentioned something that I completely forgot about. And I think it could help you, since it helped me so much. When I used to get the drenching sweats and was freezing cold, the only thing that helped was to purchase a 100% cotton long white robe. When I would drench sweat, I would change from my sleeping t-shirt and wrap up in this terry cloth robe. When I would get the sweat again. The cotton robe kept me very dry and very warm. I would actually sleep in it. Since they can be pricey when new, My family actually found 2 of them at a resale store in perfect brand new shape. Very inexpensive. Since they were only for comfort, not for beauty, these worked amazingly well to catch the breaking fever sweat. And since they are white and 100% cotton they can be bleached for cleanliness and peace of mind. Although I have not, knock on wood, flared in 2 years. I can not get rid of the big bulky cotton robe in the back of my closet. I hate to look at it. I can not wear it, even though it looks cozy on chilly mornings. It has bad memories in the fibers of the material. So I just wear sweat pants and sweat shirts to be comfortable instead. I hope this trick helps. Thinking of you. Sending get well vibes to you.

      • I wonder how everyone is doing and how getting through the holidays has gone? I have been released to light part time work early this New Year, after almost a year off work. I find this almost unbelievable. I too was the energizer bunny before my first flare early 2013 and am amazed and saddened that I may never see that person again. I wonder if anyone else continually is looking/checking for signs and symptoms of a flare almost every day? I find that as I anticipate finding a new position (my previous place of employment does not have a position that meets my restrictions) I am scared–for the first time in my life I just don’t know what I can and cannot do. What will be too stressful or too tiring. I guess I wonder if anyone else has these fears and doubts and any suggestions.

        It has been so very helpful to have this blog. I am just going through a rough time in my brain dealing with this disease and the realization of the impact on life. I go from acceptance at times to almost complete disbelief.

        Forgive me–I feel like I am rambling. I guess I just needed to check in and make sure you are all here and doing okay.

      • Dear Patty, Please do not despair. Believe me, I truly, truly know how you feel. It took a toll on me emotionally, physically, meantally, spiritually, and every other way imaginable. My first year of flare, september 2008 was a disastrous blow to my life, being married only 6 months. I was afraid to know what would happen to my new marriage. I had heard so many terrible things that can tear a new marriage apart. But I married a terrific man. I flared, terribly again in spring 2009, 2010, and twice back to back in 2011. Im very stable now, and feel back to normal. Im telling you this, not to brag, but to give you hope. Back then I could not see the light. Perhaps, I feel you, are feeling the same. But please know, I feel, you will get better. Stay on your meds, do what your rheumatologist tells you to do (unfortunately, my rheumatologist kept pulling me off the meds as soon as I would get stable which probably made my flares continuous, makes me angry looking back now…but no use crying over spilled methotrexate pills {a little stills humor}. I was wondering if you go on facebook? There is a community of AOSD sufferers that can be of some help at all hours of the days. Many of them are in different stages of the disease. I have just joined the Stills Disease Foundation group on Facebook. I used to be a member a few years ago, but left the group to write my blog. Sometimes I felt more empowered being pro-active and writing. I didn’t want to get discouraged. But I joined again today, just to see whats been going on… Join it? In the search bar on Facebook, enter the words Stills Disease and you will find the group. The group has about 500 members. Thinking of you. Please know I am sending you thoughts of good health on butterfly wings to you today.

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