Blah To You, Hip Hiccup

Dear Audy,

I’m am doing my darndest to keep my chin up, however my body has been beating me up a little lately!

I feel like I’m taking a rollercoaster, first was down, then up, then I went down again with a another flare mid-week, followed by a brief recovery before I put my hip out the day before yesterday. Stupid hip. It can be hard to keep my head on straight with things changing all the time.

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It’s partly my fault. I decided to stop taking Lyrica, on account of I’ve been on it far too long to truly know if it is making any difference or not. I know that an extra cap helps if I am having a burning flare, however I’m not convinced that I need to be on a regular daily dose.

I am stepping down the dosage by 25mg every three days, a tiny amount but they are necessary steps as Central Neural Sensitisation means that my body overreacts to just about everything. All of these flares are making it hard to tell if the lowered dose is at all an instigator; there have been alternative triggers for each one. Although the medication change is making me a little groggy and grumpy, I don’t think it is to blame for my pain.

In regards to having my hip out, I supposed that I can take solace in the fact that I have had a longer period of respite from this particular affliction than I had experienced in years. The little bugger just doesn’t seem to like its rightful place. I am learning to manage its rebellion using Feldenkrais, however this is a slow process and a few little poppy-outies are still to be expected.

They certainly don’t encourage my happiness though, not at all. I keep resting and doing (mostly imaginary) Feldenkrais movements to try and coax my back into its happier alignment, however this everyday task has been feeling draining and frustratingly slow. That’s not really a surprise, healing is frustratingly slow. I am still wavering between being able to accept that and enjoy the present regardless, and feeling grouchy and stilted.

Being in increased pain is a real mood dampener. I am able to recognise the useless anxious and depressive thoughts that attempt to permeate my mind, a skill that helps me to separate from them. The problem is that when the pain keeps pounding and pounding, there are more and more of these thoughts to need to let go of. I can spend hours on these days just trying to watch that my body doesn’t tip my mind over the edge.

I am trying to view the situation positively. Excess pain is a new challenge and new challenges lead to growth. I am increasing my ability to exist mindfully and be emotionally stable, powered by the pure need to do so. Developing this skill will help me for the rest of my life, however in the meantime, I can still get rather bored.

I go through the motions of distraction (books, TV, movies) and sometimes I’m successful, but it’s been harder than usual to enter the state of mental escape that provides the only vacation from physical pain that I currently know.

I’ll get better at coping, the medication will cease and desist its body upheaval, life will go on. This isn’t the first time I’ve gone through a stage of blah and it probably won’t be the last. I shall just keep at this coping thing, just keep trying to find ways to lower and escape from my pain and keep searching for ways to be happy, content and grateful again.

Love & A Little Blah,

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  • 4 thoughts on “Blah To You, Hip Hiccup

    1. Cindy

      Wow, you just put words to my thoughts, my life. I use the comparison of a roller coaster often in trying to describe to people what it is like to live with RSD. (I’m still more used to that term over CRPS.) I am in search of a doctor to oversee my care. My current doctor doesn’t return my calls, which is bad because I’m having an adverse reaction to Oxycontin, and don’t know what to do. The Hydrocodone wasn’t helping as much anymore… So what do I do now?? I also am on Lyrica, don’t know if it’s helping much, but know it’s tricky to get off of that one too. I admire so much how you are trying to look at the positives. There sure is a whole mind/body connection. I am starting to learn Qigong; my massage therapist uses it when I go there. Thankfully I have an appointment tomorrow. Hope you are having a better day today!

      1. Hayley Cafarella Post author

        I think it’s hard to think of life with chronic pain as anything but a rollercoaster ride! I’m always hoping to increase the up slopes and decrease the down, I think if I didn’t have that hope I’d be headed straight to depressionville and I’ve been there, it’s no fun ;P Finding a doctor that understands this condition is tough, I have been through several in the past few years. It’s terrible that you can’t get in contact with them regarding such an important thing as medication reactions! That sounds infuriating, are you in a situation where you can trial another doctor? It’s always frustrating starting again, but not as frustrating as an unhelpful practitioner. I have avoided opiates for most of my time with RSD/CRPS so I don’t have any advice regarding those, but I do hope that you can get in touch with someone to help. The pharmacist might have advice in the absence of your doctor? It’s hard to keep looking at the positives, but always worth it. I haven’t heard of Qigong before – is it a type of massage? Wishing you much luck with it! The most effective therapy that I have tried is Feldenkrais, which is also considered “alternative”, so I have a lot of faith for lesser known therapies! x

    2. Cindy

      Hi Hayley! Thank you so much for writing. I am so grateful to have found a kindred spirit in you, one waging the same battle as myself… I came back to this entry to respond…
      I finally got an answer from my doctor’s office, but not before I got a nurse advocate involved. (She was provided by our insurance co.) She and I did a 3-way call to his office. The receptionist who answered the phone first replied to this advocate “We have never heard of that person”, not knowing that “that person” was also on the line. I confronted her with my existence, giving dates of app’ts and calls and procedures done at that clinic. She did not even look me up first; she couldn’t be bothered. Unbelievable. She back peddled fast at that point and finally helped me. End result: I finally got the OK to stop the OxyContin. I hadn’t known if it was safe to stop cold-turkey, or I would have just stopped on my own. Today, I made the decision to leave that clinic. I will send a letter to that doctor and his staff, essentially firing them. I am also going to compose a thoughtful, not angry, letter to the CEO of that large Orthopedic Center. She needs to know about the lack of care I received. I was in such a dark place on that med, that I was becoming suicidal. I felt l had no recourse, no options, no hope. That nurse advocate, named Stephanie, was my angel that day. There is light in my world again, and I have fire in my belly again. I will now be my own advocate and hopefully an advocate for others that might be suffering at the hands of that doctor and his staff.
      Tomorrow, I am starting with a new physical therapist that does Cranial Sacral Therapy. (You can see some demonstrations on YouTube) I don’t know a lot about it, but some have found success, and at least it can’t do any harm. I will write more later, but right now, I better get to bed to get some rest. Tomorrow is a new day, one with hope and possibilities…. Cindy

      1. Hayley Cafarella Post author

        Oh my goodness! It’s amazing the sort of rubbish some medical “professionals” will put patients through!! The spy phone call was a fabulous plan, it must have been a bit fun to speak up when they were claiming you didn’t exist?! I’m glad you are able to stop the Oxy, I hope you don’t have to struggle through any sort of withdrawal. Wishing you luck in the search for a new medical team!! I have never heard of Cranial Sacral Therapy, I shall have to look that up :) xx

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