Being chronically means I live with the knowledge that at some point, someday I will have a flare of one or more of my conditions. I could go months without one and then have several back to back, or they could be fairly regular. Flare ups are unpredictable, sometimes it’s obvious as to what caused them, and other times there seems to be no rhyme or reason to them. Managing them is a joke. Other than knocking back the muscle relaxants and painkillers the only thing to do is try and ride it out.
I’m currently in the middle of an Ehlers Danlos Syndrome Type 3 and Complex Regional Pain Syndrome flare up. Agony is not a strong enough word to describe the sheer amount of pain that I am in. I knew my EDS flare up was coming, my pain had been getting dramatically worse over 72 hours and it felt like I had battered every inch of my body. What I wasn’t prepared for however was my CRPS to act up.
It’s hard to communicate to people who don’t have CRPS exactly what type of hellish pain it is. The only way I can think to describe is this. Imagine you have several vegetable peelers the width of your leg, someone is dragging all of them down every millimetre of your leg with excruciating slowness. Digging the blade in to the point it reaches your bones. This evil being has a partner in crime, who is simultaneously pouring vinegar into your open wounds whilst dropping lit matches on to you. On top of all of this is Benedict the Dystonia Alien who is rejoicing in contorting your leg in every position imaginable heightening the pain further.
This pain is constant. Its at the point were it feels like a miracle if I manage 5 minutes without crying. My oramorph only makes a slightly dent in the pain. Sleep is a distant memory as my leg is ravaged with mind boggling pain. All I can do is hope and pray that this flare up ends soon and does not once again become a fixture in my day to day life.
Terror. That one word sums up how I felt for 7 hours last night. My face had not been good for most the day, and by the evening my tongue didn’t want to stay inside my mouth and my jaw was slightly deviating. This eventually became rather painful so we resorted to Oramorph and I tried to take a nap in the hope of sleeping the spasm off. However the symptoms I woke up to terrified me to the point of tears.
My brain had disconnected from the lower half of my face leaving me functionally paralysed. This meant I could not open my mouth, talk, eat, drink, swallow, take meds etc. I could do nothing, and I could feel nothing. I was terrified. Now I’ve had a similar thing happen to my legs before but whilst that unnerved me I could deal with it as I could communicate what was going on and they always came back fairly quickly. However this time it took 7 hours to come back and with each passing hour I grew more and more scared. I had no idea what to do.
Doctors have no idea why this happens hence the term functional put in front. My neurologist thinks that for me this is my body’s way of coping with pain. When the pain triggers a response from my flight or fight system, my body chooses to flee by shutting itself down. I have no control over this and it scares me. The medication that can help with it I am unable to take as it interacts with other medications that I rely on.
Last nights 7 hours of facial functional paralysis was a new level of fear. I had no idea what to do. I could not communicate my fear. I tried my best to sleep, in the hope that relaxing and resting would help. However I found it very hard to relax and get to sleep. I managed some sleep but it was very on and off, every time I woke up to discover that it was still paralysed I became more unsettled. Thankfully at 3am my brain reconnected and I quickly took all the pain meds I could and went back to sleep.
This morning everything seems to be working, however I am on the weary side of it all, and still rather nervous. I am only eating very soft foods and trying not to talk to much to try to avoid triggering anything else off. Luckily I have an appointment coming up on the 8th with my neurologist so I can discuss this incident with him and get an idea of what to do should this happen again – hopefully it won’t.
I hope that I shall never experience this disturbing symptom again.