Wednesday, August 7, 2019

August Update

Hello August! 

We rechecked my Creatine Kinase (CK) levels last week and it has continued to rise.

My rheumatologist is not ready to put me on additional medications quite yet, and I'm 100% on board with that. The gradually elevating counts could be due to increased exercise and my doctor does not feel that I am at a level that could warn of permanent tissue damage at this point. 

I know that my muscle tissue is different than others and that I need to take great care to not over-exert or exhaust it. Planning for a couple days between exercise to recover is really important, too.
I think that I've found this perfect balance with Pilates. I am finally feeling like I'm getting a good workout in without being wiped out for a week afterward.

An elevated CK indicates there is muscle tissue inflammation or damage occurring in the body. It's also important to note that an elevated CK can mean absolutely nothing!
 I need that reminder, myself.
This is the first time that I have ever had an elevated CK level outside of one test that I had after being treated for Lyme Disease in 2014. I have been incredibly sick in the past with a perfectly normal CK. 
The CK level can be a great tool to track muscle damage in some patients, however it can be absent or useless in others:

CK levels are often used to evaluate the progress of disease after treatment. This is not a reliable measure of disease activity, however, and normal enzyme levels do not completely rule out the possibility of muscle inflammation. Myositis patients sometimes wonder why they feel better or worse than their CK levels indicate. Levels may lag behind the improvement or worsening of the disease, and they may be affected by activity or other factors.  Additionally, in advanced disease, serum muscle enzyme levels can be persistently low in the setting of major muscle weakness.
I'm tired, but I have also been busy and active; I can easily understand or explain why I might be a little more wiped out. I haven't felt any extra weakness in my legs or arms, either, which is huge. 

I'm hoping that at some point my CK will either plateau or go back down into the "normal" range. 
Sooner than later would be great, thanks *wink*. 

This was just going to be a quick update, but most of you know that I can't make any story "quick". Haha!

Enjoy these fleeting warm months 🌞

Will update when we retest in 8 weeks!