Storytelling – Part Three.

A month before I turned 22, I woke up one morning in pain. I had never had back pain before beyond sore muscles and stiffness. This was something else; searing pain in my back, buttock, and leg that made it difficult to move, to think, to not scream every second. I knew exactly what it was, thanks to my exposure to my family’s issues. A CT confirmed that I had bulging discs at L4/L5 and L5/S1. MRIs over the last four and a half years have documented the worsening of the discs, as they lost fluid and height and revealed tears. I was diagnosed with Degenerative Disc Disease, a catch-all description of sub-par discs that is diagnosed in most people as they get older, but usually in individuals more than twice my age. I still get asked constantly by medical professionals if an injury or accident precipitated my problems, but have discovered through my own investigations that research suggests genetics plays a larger part in disc degeneration. That is certainly true in my case.

It would also appear I have an autoimmune disease; probably limited systemic sclerosis (also known as CREST syndrome or scleroderma), or mixed connective tissue disease, which can include symptoms of lupus, rheumatoid arthritis, and systemic sclerosis. My brother and mother likely have the same condition (it can be difficult to test for these things conclusively). There’s not really any way to tell if the autoimmune disease caused the back problems or they just coexist, and it probably doesn’t matter that much anyway, although some days I desperately want a concrete diagnosis to give the people who treat me like a hypochondriac.

I have spent the past four and a half years on Panadeine, then Panadeine Forte, then Tramadol, then buprenorphine patches, then back to Tramadol, then Endone (from 5mg up to 20mg). I have had 17 injections of steroids and local anaesthetic into my discs, nerve roots, and facet joints. In June 2012, aged 25, I had my first surgery; plastic butterfly-shaped Impala implants which were inserted between my vertebrae at two levels to act as car-jacks and stop the bones impacting on each other when my discs fail in their job completely. It is unlikely to be my last surgery. On the day of the surgery, from the time the orderlies picked me up to when I was wheeled back into my room, six different medical personnel commented on how young I was to be having spinal surgery; two more have done so since. I know. Stop reminding me. The surgery helped with the disc pain, but I am still having facet joint and nerve issues.

This is my story. Written down all together, it seems a little ‘woe is me, my life is awful’, which it isn’t. I have a pretty great life in and around the pain; sometimes it’s been terrible, but that’s true for everyone. I’ve had several stretches of up to three months at a time pain-free, thanks to surgery and injections (and once gonging, but that’s a story for another time). I have a wonderful team consisting of a GP, neurosurgeon, and pain management specialist. I am not describing my history in a bid for pity, or with the intention of inciting a ‘my-pain-is-worse-than-your-pain’ war. I’m telling you this to say; this is how I got where I am. This is the lens through which I view the world. This set of circumstances dictates where I am coming from and how I deal with things, and what I will attempt and what I will tolerate and for what I advocate.

This is me, and now that you know me, we can begin.

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4 thoughts on “Storytelling – Part Three.

  1. ashsappley

    Some of your story is similar to mine – I’m also 25 with degenerative disc disease and a spinal surgery in my books. It took numerous doctors before I was taken seriously, and because of that, I also have nerve damage to my sciatic nerve. The surgery helped me regain feeling in my legs and take away at least some of the pain, as I’m able to walk almost normally again, so that’s a plus. I’ve had chronic pain for at least 8 years now (you lost count after a while, and it does become a normalcy). Thank you for sharing your story. It does help to learn about others that have been through something similar and understand the weight of chronic pain.

    Reply
    1. jezzybel Post author

      Thanks for commenting! I always find it so helpful to connect with people with similar experiences around my age who can actually comprehend what it’s like. A lot of my friends just can’t wrap their heads around it. And it’s so frustrating to be dismissed by doctors because you’re young. Can I ask what type of surgery you had?

      Reply
      1. ashsappley

        I know the feeling! The only people I’ve been able to connect with who understand what this is like at my age have all been online.
        My orthopedic doctor refused to do anything but steroid injections and to tell me to take ibuprofen. I finally went to a neurosurgeon, who understood the toll the bulging discs were having on the sciatic nerve (my right leg would barely respond to reflex tests, for example). I had a microdiscectomy, as the nerve pain and nerve damage were my main issues (the bulged discs were actually not that bad at the time as far as bulged discs go). Now I’m seeing a pain management specialist, as well.

      2. jezzybel Post author

        I’m glad you eventually got a good team, it makes a big difference.
        I’m grateful that at least I’m in the best time in history to be a sick/injured young person; I can’t imagine how much more difficult it would have been before the internet was widely available, when people were isolated and had nothing to entertain them! Online support and time-wasting when I’m bedbound is all that keeps me moderately sane 🙂 It also makes a big difference to be able to do your own research, and not have your diagnosis, treatment, or pracitioner choices dependant on the first suggestions made to you.

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