Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Fiery Fury of Flare UPs

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.

Image result for complex regional pain syndrome

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.

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Comments on: "Fiery Fury of Flare UPs" (5)

  1. This makes me want to cry for you; I remember the 6 months of torment you had when you were 16. i always remember a consultant saying to me, ‘Imagine someone is holding your whole leg in a fire, that’s the sort of pain Rebecca is currently experiencing. Stay strong my darling girl xx

  2. Rebeccs\a I am so sorry. Can they give you something to overwhelm it even if it puts you out out a while?

  3. Danyce (pronounced Denise) said:

    Forgive my total ignorance. I’m a chronic pain sufferer because of two car accidents (neither my fault) and cancer. Throw in a little lymphedema, chronic infections, myelitis, etc…fun for everyone. But I know nothing of CRPS or EDS. I’ve followed Drs directions since 2009, and even have a spinal neurotransmitter implant, along with a few meds. Just wanted you to know I can relate to some degree.
    My question is this-has anyone ever suggested hypnosis? I wonder if it would work, given you’re already in the midst of a flare. But if there’s a warning…catching it in the nick of time, so to speak. I don’t know you’re locale either, so maybe it’s not even doable. Having read your post, it just popped into my head. When our usual meds don’t do the trick, what else is there? I’ll try anything once, ya know? I might have to look into it myself, as the aging process is kicking my rear….and I really don’t want to be wheelchair-bound, if I can help it.
    Sending you good vibes….💜

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