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.
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.