*SENSITIVE & GRAPHIC MEDICAL CONTENT* – This blog post contains my personal journey with Chronic Pain, which some readers may find triggering/upsetting. It should NOT be substituted for seeking proper medical advice. Remember everyone and every circumstance is different.
When you research Muscular Dystrophy (a group of 60+ muscle wreaking and wasting conditions) and pain, medical extracts will tell you that they don’t or shouldn’t cause pain. What they fail to elaborate on is they mean the disease itself isn’t painful, though the symptoms associated can very well be. Therefore in my opinion and I’m sure many others with MD will agree, if the symptoms associated with muscle weakness and wasting cause pain and the disease is often degenerative (so it progresses to chronic pain the more muscle deteriorates), then people with Muscular Dystrophy Can and Do experience pain at some point in their lives to varying degrees.
The ‘S’ word
I developed Scoliosis (curvature of the spine) around 8 years old. It rapidly progressed unbeknowingly to my multi-disciplanary team over the course of a year, leaving no time for bracing, or traction with a halo, the only option was a FULL neck-into-pelvis Spinal Fusion. Major spinal surgery where they insert two metal rods paralell to the spine to support it, straighten the curve as much as possible (they can never safely get a scoliotic spine 100% straight without risking nerve damage) and secure the rods with screws into each vertebrate to stabilise.
The curve began to cause back pain sitting, as I leaned to one side to compensate and all my weight went through my left buttock, which in turn caused pins and needles down my leg and sciatica. I was put on a continuous regime of paracetamol and codeine by my consultant. I also used Deep Heat spray directly on the painful areas of my curve in school to get me through the day. Little did I know then that this was the beginning of a lifetime on pain killers.
Spinal Fusion Complications
Unfortunately due to lengthy NHS operation waiting lists here in the UK, despite being classed as ‘Urgent’ on my file with a rapidly progressive scoliotic curve, that was progressing as my back muscles weakened and wasted due to the underlying Muscular Dystrophy, I waited 4 YEARS for that major surgery. Ideally children with MD need to have this life-prolonging operation at their healthiest. My surgeon almost called off the operation during my pre-op assessment as my weight had plummeted to 5st because I could barely eat with my stomach being crushed, along with my heart and lungs by the curvature. My respiratory muscles were already compromised by the muscle disease, add in being crushed by Scoliosis, I nearly ended up having a tracheostomy as they struggled to get me off the ventilator during the marathon 12hr procedure at Pendlebury Children’s Hospital, Manchester. I’ll save the rest of that story for another blog…
Long story short, having the operation done when I wasn’t at my best meant my risk for severe long-term complications increased quite a bit!
I was bedridden for 2 years at 14 years old following the fusion. This had a direct impact on my education as I ended up medically exempt from completing my GCSE’s. Yes, I received adequate home tutition during this period but the amount of pain I was in and Dr’s reluctancy to give me anything stronger meant lessons had to be cut short. I could sit upright to study only 20 minutes a day and those were agonising to the point I couldn’t concentrate on anything and the need to lie flat on my back again for ANY degree of relief was all consuming. It was a devestating time to look back on, but I do not regret my parents decision on putting me through that operation. I wouldn’t be here writing this if they hadn’t.
Trial & Error with Pain Management
After 2 years in bed, I heard about new power wheelchairs that were coming out on the UK market that had a tilt and recline function. This was incredibly exciting because theoretically, if I could lie down by the touch of a button as needed, WITHOUT needing to get back in bed for the same relief, having one of these wheelchairs could be my ticket to freedom! Thankfully, I had the support of a Neuromuscular Specialist Nurse, who fundraised through Muscular Dystrophy UK and other children’s charities to get me one of these life changing power wheelchairs. The new wheelchair accompanied with a NSAID anti-inflammatory drug called Feldene gave me my quality of life back!
Fast forward a decade
One night out of nowhere, I felt an excruciating pain as if something had shifted in the metal work in my back. The pain was so sharp and blinding as I sat up in my profiling bed in the middle of the night. I was terrified to move! After a while, I knew I had to try and push past the pain and try and move my legs. My right leg was dead weight, I could barely wiggle my leg side to side. It felt incredibly tight too. At some point I blacked out and the next morning woke up thinking it must of been all a bad dream. My leg seemed fine again! So I carried on as normal.
Over the course of a fortnight, a numb patch developed on the side of my right leg, along with an uncomfortable tight feeling from my lower back, under my buttock and thigh and into my foot and toes. It was so tight, I found myself constantly reclining my powerchair every 2-5 minutes. It barely gave relief but it was better than sitting bolt upright. I went to the GP and explained these symptoms and thats when I got diagnosed with Sciatica (meaning the sciatic nerve, which runs from your lumber area down the back of your legs, was pinched/trapped somehow).
I was prescribed Tramadol and told it usually subsides in a few weeks. Only it didn’t, it got worse and that numb spot, worryingly,began to grow. I went back for a second opinion. Prof Williamson who led my fusion surgery, ordered a spinal x-ray and an MRI. Only with all the metal work and fusion, it was obscuring the image results to see where exactly the pinched nerve was. I was 24 at this point and as it got to the point I couldn’t tolerate the pain and tightness, now accompanied by electric shooting, stabbing, throbbing and pins and needles down my right leg, right into my toes to where I couldn’t even tolerate sitting in my powered wheelchair AT ALL.
Now bedridden (again), and still in a great deal of pain, the only option then was exploratory spinal surgery to find out the ‘root’ cause. See what I did there 😉. My Neuromuscular Specialist advised against it as now my progressed MD rendered me now too weak respiratory wise to undergo such major spinal surgery again, that may or may not find the answer. I appreciated his concern and turned down exploratory surgery. X-rays and my symptoms did uncover some further spinal conditions I’d developed as a result of having my spine fusion before my body was done growing. I’d gone on to develop Osteoarthritis of the spine and Ankylosing-spondylitis, both rare long term complications of Spinal Fusion surgery that can arise years down the line. It still remains a mystery to this day as to what’s pinched the nerve that has been causing me a lot of suffering.
Creating a ‘Cocktail’
After a heart to heart with my GP over how being in so much pain and being bedridden again was affecting my mental health. How I truly felt I had very little quality of life at this point. He knew me well medically and had been my GP since I was a young child. He knew everything I’d been through and most importantly knew that if I am saying I felt I had very little quality of life, then things must be really bad as I have a HIGH pain threshold and throughout all I’ve been through, remained positive and upbeat. I was raised to believe that there’s always someone worse off than you, so count your blessings and don’t waste time feeling sorry for yourself. Life is an amazing gift and I wanted to grab it by the horns and live it!
I told him how I wanted to return to education and finally obtain the GCSE’s pain robbed of me, to travel volunteering and advocating, go shopping, out with friends or even to get up and stay up long enough in my wheelchair to go have tea with my family. All that was stopping me, was chronic pain.
That’s when my GP said, “How do you feel about trying a slow release morphine?”
I was taken aback. My Dad had passed away from Cancer only a month prior so I associated morphine with him and end of life care. My GP clarified that morphine wasn’t just for people who were dying, it was in fact used by individuals, like me, who are battling everyday with chronic pain, and that because we’ve run out of options to pinpoint exactly where its coming from in my back, for any possibility of fixing it, all that’s left to do is make me comfortable by managing it the best we can with the wonders of modern medicine.
I spent the following week mulling it over in my head, but in reality my only 2 options were..
1. Continue to suffer
2. Try morphine in hopes of giving me some relief
You’re probably thinking that’s a no brainer, but I had to get that negative association out my head about it being used at the end of life. Eventually I told myself I was being stupid and took that leap of faith.
Over the next 6 months, my GP worked with me on getting the dosage right and combining it with two other drugs. In the end we found that Morphine slow release 20mg 2x daily, Pregablin 100mg – a nerve pain depresser and Amitryltaline 20mg – good for pain at night for a more restful sleep, turned out to be the tailored cocktail of meds that got me up and out of bed again.
Yes, I’m rattling but these drugs have given me back my quality of life!
How am I now?
The nerve damage associated with the spinal fusion continued to progress to where sadly, I lost all sensation and movement in my right leg. Some of the numbness has spread further into my groin area and Drs cannot guarantee that my left leg won’t become affected at some point aswell, as the nerve damage continues to progress. I’m still in pain but the majority of the time it’s managable with the Morphine ‘cocktail.’ In 2019 my pain did escalated again to where we tweeked the Pregablin to 200mg x2 daily and went back on Oramorph for break-through pain management. Though I still have bad days where I am forced to go lay flat in bed and morphine and nerve surpressers don’t touch it. The next plan of action is to switch to Fentalyn patches, if my pain gets uncontrollable again. It’s good to know there’s another medication option that could help, but I am very reluctantly to climb the ladder more.
Keeping the mindset that I’m blessed to have access to these drugs, a good medical team who put my comfort, well being and quality of life at the forefront, is paramount as it I can’t fathom how my life would of panned out otherwise. I’m so grateful for our NHS.
Accepting controlled drugs was the best decision I ever made for myself. I wouldn’t of achieved near half of what I have in the past decade, such as travelling up and down the country for conferences, campaign meetings and exhibitions, or even contemplated starting a family. There is SO much negativity around opiate use, this is a positive story of how opiates saved my life. Bringing me back from the brink of merely existing, in too much pain to partake in it. Enabling me to actually live it. For that I’ll be forever grateful…