Adamant About Taming The Agony & Adjustment Beast

Dear Audy,

As so often happens to people living with chronic pain, I was knocked off my progression horse this week. His name is Pierre the Palomino (the metaphorical horse) and sometimes he can be a right prick about bucking around psychotically when I am trying to get back on him.


I am kind of still recovering from the big weekend that I mentioned over a week ago. My body hasn’t been playing very nice since then, despite my best efforts to whip it back into line. I managed to calm my system down enough to go out to a BBQ birthday backyard movie screening, which was a wonderful break from solitude, however the hypersensitive owies were peaking again by the time I woke up the following morning.

This flare and, more notably, the failure of it to abate after so many days coincides with my total liberation from Lyrica. I still feel trapped in a perpetual state of medicinal hangover. I am not sleeping soundly and continue to awake to an unbelievable amount of pain lingering through my limbs. My arms have been especially uncomfortable; they seem to believe that even the slightest bend in a elbow or wrist is akin to cutting off the blood supply with a rubber band.

I’ve had excessive pain and stiffness plaguing my shoulders, neck and jaw. I have been working with my Feldenkrais practitioner to increase my awareness of movement and tension in this area at a deeper level than I have previously. Any sort of step up in treatment has a ramification and I’m not surprised that my shoulders and neck are causing me grief whilst they adjust to no longer being able to glide along being sore below my internal radar.

Along with the excessive pain, I have been dragged down by fatigue. I feel like I am tired all the time, even after I have had 6-7 hours sleep. Concentration has been elusive and thus too my ability to distract and entertain myself. Fatigue combined with pain is a classic recipe for depressive thoughts and I’ve been fending those off, fastidiously trying to catch them and free them before they can play tricks on my mental wellbeing.

Setbacks are always to be expected and I have to keep ploughing on through this rough patch until healing momentum builds once more. I have been doing close to two hours of Feldenkrais everyday and, along with some meditation, this helps to ease the pain. I have spent a lot of time soaking in the bath, which also eases the pain by helping my angry muscles let go of their tension. I am almost constantly trying to regulate my breath and focusing on simple breathing to help avoid over-thinking and keep that depression at bay.

To keep entertained, I have been watching old episodes of Gilmore Girls. Ah, life is so simple and dreamy in Star’s Hollow. It’s nice revisiting some old friends and all, but I am missing new episodes of my more current fictional favourites. The return of United States Of Tara has me fairly excited but, let’s face it, pretty much every television viewing minute is simply filling in time until there are more new episodes of Parks And Recreation. Man, that show leaves me in fits. The good kind of fits.

I’ve been reading my usual concoction of trash and genius. The trash is hardly worth mentioning, however I am looking forward to having the brain power to share some reviews of the quality reading that I have enjoyed. In truth, I am simply looking forward to having more brain power in general so that I can ponder properly again, rather than just absorbing the information.

I have to keep my faith that remaining level-headed, continuing to practise a lot of Feldenkrais, continuing my relaxation methods and moving at a sustainable pace will get me through this adjustment period. Giving into my frustration about the situation will only cause me anguish, so that’s not on my to-do list for today.

I have gotten through much, much worse than this before. Every flare that I beat is one flare closer to the day when I’ll beat this chronic pain right out of my life. The battle gets boring sometimes, but at least I have an action plan and some past proof that sticking to its regiment will improve my condition.

Has life been spraying you with lemon juice lately? Perhaps (I hope) it’s been kinder and hit you with the sugar water?

Love & Endurance,

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  • 6 thoughts on “Adamant About Taming The Agony & Adjustment Beast

    1. Cindy

      I had a similar reaction when I tried to cut down on Lyrica too quickly. I am uneasy with the fact that I am on what used to be considered the max dose/day: 600 mg. Now, they don’t recommend going above 300mg. So, I have a ways to go just to get there. Were you on a very low dose when you stopped? Maybe you could take a small dose every few days to let your body adjust? Perhaps you were there already… I hate the fact that I am tethered to this drug too, so I understand your wanting to be free. If I can get stabilized, I am going to try to get down to the new max anyway. You do so well at battling the discouragement that is often lurking around the corner. Right now, I am battling a severe sore throat and sinus infection, so am on antibiotics and resting. I have two dogs that are happy to keep me company when those days hit, and I live on my couch. It’s hard to even be distracted by TV today. So… lemon juice here too. Wishing you well, and hope you will gain some traction soon in your quest for a healthy productive life.

      1. Hayley Cafarella Post author

        I am sorry to hear that the lemon juice got you too!! It is such awful, stinging stuff. I was only on 150mg a day to begin with, sometimes an extra 75mg on bad flare days. I dropped the dose by just 25mg a day for 3 days at a time. I haven’t had any for about a week and a half…I think…the weeks are all blurring! I’ve been tempted to just go back on it, but trying to be strong and remember why I wanted off it in the first place. Everything is sore and haywire at the moment, it kind of reminds me of back when the pain started spreading and a new area would get really sore and not stop. Each spread completely knocked me around and left me feeling a bit hopeless. I’m not hopeless with this, though, I’m hopeful because I managed to get through all of those spreads and setbacks and they were worse than this is. This is mostly frustrating as I was doing so well for a while there that some days I could pretend I was almost healthy ;P Here’s hoping the sugar water gets to us soon!! xx

    2. Della

      It’s way too easy for me to forget that when I have a “big weekend,” or anything extra, I WILL pay for it later. I need to be more mindful of that fact so that it doesn’t keep taking me by surprise. I mean… how slow can I be, to keep forgetting that?! Maybe it’s just that I want so much to forget the rough moments when I’m enjoying something. I went to a Christian singles retreat last weekend and left it just floating on a cloud of peace and joy, then about Wednesday, or Thursday I crashed, and was kind of crushed. Now I’m finally leveling out and have much of the peace and joy back. It’s a crazy life with RSD!! Now on to preparing to move… again… what joy.. heh! lol

      I hope you’re doing as well as possible!

      1. Hayley Cafarella Post author

        It’s so hard to get used to having to have a big downswing for every upswing, I totally understand what you mean! Even when I have tried to pace things out, I still get taken by surprise sometimes. I’m getting better though, I try to plan time to recover from things and expect that I could have a massive flare up, but also I try not to convince myself that I will have a massive flare up…that’s a fine line too! I so glad that the peace & joy returned, not so glad that you have to move again!! Wishing you luck though, you must be a total pro at that by now 😉 xx

    3. Tracey

      I wish for you lots of sound and relaxing sleep.

      PS. I love Parks and Recreation too … it’s only recently been knocked off the top of my favourite show list by ‘Community’ – do you watch that too? :)

      1. Hayley Cafarella Post author

        Thanks, lovely! Ya, I watch Community but don’t like it more than Parks & Rec, it’s a bit more hit and miss with the funnies…I did nearly wet myself at Abed being The Cape though!! 😀 xx

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