I must keep moving!
These pain experiences are happening more frequently and sometimes are much longer. Last night Karen said my episode may have been 2 minutes. I can’t make an episode happen so I don’t know what is causing it. Most of the time it seems to be nerves in my tongue but the pain seems to start in the middle of my cheek. I have feelings of light pressure to pins and needles all over my right side of my face that radiates to most of my scalp. But I also have sensation on my left side, but it also includes random twinges that can be a second to 3 seconds long. The worst is the big flares that feel like someone has ripped my face open with a dull tool and set my face on fire. I can’t move my mouth when this happens. The pain is so extreme that my jaw falls open and tears and drool pool in my eyes and mouth. I can’t swallow so I lean forward and have to let the fluid fall out so I don’t drown. Pressure points make it worse. The tension works down to other parts of my body. When it is over all I can do is sob because I am so scared and feel violated. The adrenaline is extreme and I can feel it for hours but I am afraid to move in case it happens again. It leaves me exhausted but unable to sleep from all the twitching as my body eliminates the adrenaline. The twinges wake me up when I do fall asleep.
I have been eating much smaller bites in case it happens. If I am quick I can swallow for a second to clear my mouth in the very beginning but once it is full force I lose control. My episode I had last night, I had 1 peanut in my mouth. It is making it very hard to eat. I am hungry often because I am terrified to eat. This is not fun. I am not sure who to call, my primary or rheumy… I am not sure this is fibromyalgia or Psoriatic Arthritis or even MS…which one of my siblings has. Please pray for this situation….
So my primary ordered a ton of tests including: MS and Lupus…again…we did that in 2016 but a lot has changed since then. We are also checking my thyroid to make sure it is still working and my hemoglobin and kidneys for good measure…she is also referring me to a neurologist. I have thought this might be the next step. I have never seen a neurologist before…on the way home I got a Vital Peanut Butter Smoothie with a banana in it. Chewing is hard and I am hungry. Red Leaf makes them, very low sugar and high protein so it is a great option as a meal replacement. Don’t mind my bib…I don’t want to ruin my sweater…
Feel free to leave your comments below!
My name is Summer. That is how you can call me. I hope that I am a blessing to you. I am not perfect. I will fall again. But I am forgiven.
Do you know Jesus? Do want the Holy Spirit to fill you and give you understanding and salvation? Ask Him. Want someone to pray with you? Contact me.
If you would like to know Jesus as your friend, but want to make this amazing commitment by yourself please pray something like this:
Thank you Jesus that You are the Son of God, the God that created heaven and earth. Thank you Jesus that You came to earth in the form of a man so that You would be able to empathize with my humanity. Thank You that You did this in order to fulfill the promises You made at the foundation of the world.
I realize that I am a sinner and do things that hurt myself and keep myself away from you. Thank You that You died for my sins so that You could defeat death and bring me into Your life. Please forgive me.
I ask You to be Lord of my life. I ask you to heal my hurts and show me what my new life, empowered by You looks like. Thank You for Your mercy.
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