Surviving The Inflamed Burning Bonanza

Dear Audy,

My, oh my. I have been ridiculously sore for the past three days. Ridiculous even for somebody who lives with CRPS and is accustomed to chronic pain. It’s weird though, I haven’t gotten upset at all. I don’t even feel the need to add a “yet” to the end of that sentence.

Perhaps I am still flying high on all of the lovely messages of support that I have received regarding my successful Sydney adventure… thanks so much for understanding how big of an achievement this was in my world!

Perhaps I am still sliding low on the pain of recovering from such an adventure. But… I don’t think so, not entirely.

By the end of last week, I was feeling much better. Much better than I’d felt at the start of the week and much better than I’d expected to feel a few days after being on an aeroplane. I felt capable of a little driving, grocery shopping and cooking, which are all great signposts on the way back from a flare. My hands were still giving me some visible grief, but no longer to a degree that I couldn’t work with.

On Friday, I had a Scenar session that actually made me feel a lot better. I’d also had a Feldenkrais session that day and was feeling super connected and back on my way to physical functioning. The Scenar session brought down the pain in my hands, considerably. A couple, if not a few pain points down. It was great! I was able to function for the rest of the day and cook and feel wonderful.

Saturday, however… Saturday was mean. I woke up in massive amounts of pain. Just…massive. Predominantly in my knees, then my hands, then my ankles, feet and elbows. My knees felt bizarre.

I’m very aware of what inflamed knees feel like. When I was about 15yo, I had a kind of “bout” of chronic pain in the form of knee issues. My knee caps didn’t fit into their grooves properly and my feet were rolling all wrong when I walked and the result was a lot of pain and swelling. This issue was eventually resolved over about 12mths through wearing orthotics and various physical therapies.

Did this prime my system for developing chronic pain later on? Maybe. Jury is still out on that one, but it theoretically makes sense to me…

Anyhoo…knee pain and me, we’re old frenemies.

This Saturday morning pain, this week, was like waking up with the ghost of those old knee issues. An angry ghost. A spiteful ghost. A ghost who has figured out that my system is primed for neuropathic pain now and mightn’t it just play with that a little while it’s in town…

The result of this is a sensation that feels like I have gigantic, swollen knees. Like, the size of volleyballs, that’s how big they feel. Like, a hundred times the size of female beach volleyball player’s uniforms, that’s how big.

It doesn’t feel like regular inflammation. It feels like burning inflammation. Hyper, hyper sensitive, burning inflammation. I can wiggle my fingers in the air around my knees and I swear I can feel them touching me. Touching me enough to hurt.

“My knees are super heroes!” I exclaimed, to my Prince, last night, “This is a super power, right? The most useless super power ever, but…still…super.”

Super, but kind of hard to stand on. This double whammy of a sensation that calls itself Inflamed Burning Bonanza is echoing in my ankles and those little joints in my feet. Also through my hands and elbows.

Whilst I am still recovering from my trip, in some ways, I am also thinking that this sudden onset, weird sensation flaring is probably also being influenced by the Scenar. It almost feels like my body just decided to overreact this time, as though it’s tired of the Scenar messing with it and just needs to throw a tantrum.

I don’t think this flare is a particularly good or bad sign, just a sign that things are happening and that my body currently interprets all change as an assault. I am still very hopeful that eventually my nervous system will recognise that Scenar is trying to help it and start to interpret the treatment in more helpful ways. After all, my system interpreted the treatment positively before reverting to its old habits, it can learn to do that for longer.

In the meantime though, I feel a little weird and lost. I have things to work on and I’ve been doing that slowly. I can concentrate a bit, but it’s not easy at this pain level, which is still ridiculously high but not at the worst it has been in the last 72 hours. I still have my pain management techniques; I’ve been practising Feldenkrais, stretching and soaking a lot to get through this time. My methods are less effective than they are at some other times, but still help a little to keep me grounded, focused and reduce the pain a smidgen, for a few moments.

This isn’t easy pain to manage, it bites my coping skills at every turn. I try not to bite back.

I’ve been keeping calm, reading a lot and reminding myself that this is temporary. Inconvenient, but temporary. Incredibly painful, but temporary.

I mustn’t forget, I used to be this incapacitated all of the time. Every day. For years. I’ve come a long way, I’m not about to give up yet.

Love & Patience,
Caf

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  • 2 thoughts on “Surviving The Inflamed Burning Bonanza

    1. Ross

      So sorry that you’ve been in so much pain as of late! That makes two of us as I’ve been trying to get through all my intense pain while we are away on holiday. Ever since developing the infection where they went back into my back things haven’t been right. I hope that you find relief very soon and that you can get back to some form of normal!

      1. Hayley Cafarella Post author

        I am so sorry to hear that your pain was such a bugger about your holiday, I hope that it settles down quickly. Sending lots of hope that happier days are just around the corner xx

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