I'm in the hospital following a flare. I finally was able to get pain relief from Humira back in January. After 2.5 years of trial and error with DMARDS and Prednisone with no improvement, Humira truly felt like a God Send! I had thought my new normal, to look forward to, would be a life of pain and being nearly bed bound.
I feel like it had taken me so long to recognize symptoms of a flare coming on and what to do once it hits.
Over the weekend I detected a flare on the way. I felt flu-ish and I hurt everywhere.
Being that flares and rheumatologist appointments never managed to sync up together, I often feel inept at describing where most of my pain comes from and to the degree of which the pain had slammed me?
During my scheduled appointments, outside of flares, as my doctor presses on my finger knuckles and other joints and asks what degree of pain I may be experiencing, I feel almost pensive in answering him. I can answer what hurts me right then, but feel at a loss in being able to articulate the extent of my flares that I have experienced in the time between appointments. I almost feel like a bobble headed doll answering in the affirmative to almost every joint he asks about...and affirmatively to those he may skip over. It's almost like I want to give him every minute detail as if that detail may finally give him all the info he needs to give me a magic bullet that will provide an exact road map of what may lurk ahead with this chronic disease. I then wonder if he thinks my blanket affirmations appear almost psychosomatic.
Well, when my flare hit on Friday I experienced extreme diarrhea and vomiting (pardon the candor) along with my increasing rage of pain, not just in my joints, but throughout what feels like my entire skeletal system. Not 100% through every bone, but up and down my knees to my shins to the boney tops of my feet, from my shoulders through my elbows, wrists and fingers, through my hips and lower back. Does my rheumatologist understand the degree of pain that radiates through my body during a flare? Maybe he does understand, but I wish that he would have spent a little more time with me over these the past 3 years to help me identify these things. Maybe I have needed the blinders I do not like, to be able to reason this whole experience with Rheumatoid Arthritis. But, then there is the whole subject of feeling like others, doctors included, can't empathize because this disease doesn't appear on the outside. It hides beneath the surface where no one can see.
I am thankful you all are here, along with a number of Facebook groups that have helped to fill the gaps of knowledge and experience in this journey so far.
So to back track, Friday my flare hit, but this time I had all the diarrhea and vomiting. My pain was so bad the thought of getting up to take a quickie shower and endure the bright lights, and all that goes along with heading to the ER seemed impossible. So I just curled up in bed to try to wait this thing out. All weekend was miserable, so my next move had to involve a call to my rheumatologist first thing Monday morning. He was able to see me and directed me straight to the ER. Thank the Lord he called ahead for me. Once I arrived they got me right in to explore what the heck was going on. It turns out I have a bad case of Colitis (never have had this before) and Humira is the apparent culprit. I'm still in the hospital, on antibiotics and with much trial and mostly error, I have gotten ahead of both my belly pain and RA pain.
I'm not sure what will be next. Will I have to stop taking the Humira which finally seemed to help me? Will it take another year or two to figure out what I might be able to take to help with the RA pain without repressing my immune system so much? Will I end up being one of those patients described in the TV ads that experience potentially life threatening side effects included in the disclaimer parts of all the Biologic advertising? I know no one will have an iron clad answer to these questions. I am just trying to verbalize the thoughts and questions I have when curled up in the midst of any of my flares. Do you all ask yourselves these same questions? I imagine it will continue to take trial,error and prayer to figure this stuff out as we are all so different. I just wanted to throw it out there to see.
God's best blessings to you all. 😊
PAIN!!!!
(Warning: It's a bit long winded-sorry :-( )
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