Not new to the CRPS pain but this… this is very new.

Posted by indigostar1201 @indigostar1201, Oct 21, 2023

I was recently diagnosed with CRPS after having it for 5 to 6 years. Two nights ago a small plastic container containing my loop earbuds fell on my thigh from about a foot away. The pain was immediately immense. It continued for about 30 minutes. After which I noticed, I was slowly losing my ability to move my good leg and arms. This spread to my neck. I asked my partner to move my legs and arms to a comfortable position and asked for half of my leftover pain medication from a tooth extraction I had 10 days ago on the 10th. He had to put the medicine in my mouth as well as pour the liquid into my mouth. I was able to swallow it on my own. After which I asked my partner to lean me back into a comfortable position in my computer chair. After a bit, I noticed I was sinking into my chair and couldn’t move at all, and was having involuntary light jerking of my legs. I tried to say something to my partner behind me, but I couldn’t open my mouth or eyes and I could only make hardly audible sounds of light groaning. This went on for about 30 to 40 minutes of me, trying to speak and move but to no avail, other than quiet, groans, and involuntary light jerking. Finally at about 40 minutes my body jerked forward, and I had about 30 seconds where I slowly lowered my self to the desk and my head stayed there until the light jerky became more pronounced. I was now sliding off the desk, unable to alert my partner gaming behind me. I hit the floor knocking over the fan as the involuntary movements became more violent. They asked if I was okay, I couldn’t speak and occasionally I couldn’t take a breath in as if my body forgot how to do so. I couldn’t move other than the unwanted muscle contractions, which would contort my arms and back upward until the muscle stopped contracting and I would fall back down limp. This continued for 20 minutes until the paramedics arrived. I could hear them, but still unable to move or speak to answer any of their questions. My pain sensitization (heightened) became worse and spread to my entire body. The muscle contractions worsened. At one point a paramedic placed his hand behind my head to stop any damage from my head jerking and hitting into something. The muscle contractions had spread to my neck. I felt them move me onto a bag and carry me downstairs. The air was cold outside. I could tell it was daylight. Inside the ambulance my body reacted to the pain of the blood pressure cuff, tensing and contorting to the pain. Intermittently I would feel the inability to breathe in, and after a while of feeling the pressure in my lungs, my body would gasp out for air. Once in triage a couple doctors noted they were going to talk to me as they heard for unresponsive patients the last thing to go was their hearing. They were right. One doctor tried to open my eyes and shine a flashlight into my right eye. I felt myself yell out in pain, my eyes automatically squeezing shut hard. Eventually after having hooked me up to monitors I was left with my partner as my body continued contorting with muscle contractions and involuntarily crying out in pain. This went on for a hour before my body would finally let me open my eyes, and even longer before I could speak. Even after I could move on my own if I tried to push through the pain, my eyes would close my jaw wouldn’t open, I wouldn’t be able to speak, and the muscle contractions would return. Eventually, I would be able to regain control of my own movement but in a very weakened state, and any touch was excruciating. After an hour, my body seemed to relinquish control back to me and my CRPS returned to only my right leg for the most part. Some pains were still heightened, such as IVs and medication‘s going through them felt very excruciating and like fire.

I am scheduling with PCP as soon as my strength returns and plan to see Pain medicine and rehabilitation very soon as well as have scheduled an appointment with my neurologist within the next month.

I don’t know what happened… I know I wrote a lot but if you read this far, has anyone experienced this? Any of this?

~Indigo

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You are not alone. Have you looked into functional movement disorder which is a type of functional neurological disorder?
I have been there. This sounds like a non epileptic seizure similar to what I experience. I am not a doctor but I do have fibromyalgia, migraine associated vertigo, and FMD.
Best of luck to you.
Kat

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