|(Title Image incorporating black and white, side profile of me looking weary)|
Disclaimer: This blog post contains sensitive content some readers may find upsetting. I’m merely sharing my personal experience on this complex topic, therefore it should NOT be a substitute for seeking proper medical advice. Remember everyone and every circumstance is different.
When you research Neuromuscular Disease (NMD) and pain, medical extracts will tell you that they don’t or shouldn’t cause pain. What they fail to mention is that they mean the disease itself isn’t painful, though the symptoms associated can very well be. Without the symptoms you can’t have a Neuromuscular Disease as they clinically present with muscle weakness and wasting that is often progressive in nature as the main signs for clinical diagnosis, along side the genetic mutation to pinpoint the “form” of which there are over 60! Therefore in my opinion and I’m sure many others with NMDs 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 it is plain to see that Neuromuscular Diseases Can and Do cause chronic pain…
A pain in the legs…
|(IMAGE: Childs feet in portable foot spa)|
Now that argument can be laid to rest, now that’s all out my system we’re going to take a little trip down memory lane. Way back to the age of 3/4 years old. My first recollections of pain that other children didn’t experience were agonising leg cramps that would progress as the day went on. The pain consisted of an agonisingly, dull ache that extended down my legs and burned into the soles of my feet. My Mum often had a bucket of cool water ready for me as soon as I came in from nursery/school as it became a daily occurrence. At nursery age, I’d wail and whimper for relief, as grew accustomed to the consistancy (and seeing how upset and worried it made my parents) around 6 years old I learnt to hold my emotions in to protect my family from seeing me suffering. Only bursting into tears if it’d lasted into the night with no let up, that’s when I couldn’t hold it together anymore.
My first taste of long term pain killers
I developed Scoliosis (curvature of the spine) around 10 years old. When it was fairly advanced and I was on the waiting list for the Spinal Fusion surgery. Which for anyone who’s unaware is major spinal surgery where they insert two metal rods paralell to the spine, 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
|(IMAGE: Diagram of a Scoliotoic spine and how it’s corrected with steel rolls and bone grafts to fuse)|
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 continued to weakened and waste from my Neuromuscular Disease, I waited 4 YEARS for that major surgery. Ideally a person with a NMD needs to have this life-prolonging at their healthiest. My surgeon almost called off the operation during my pre-op assessment. As my weight had plummeted to 5st as I could barely eat with my stomach being crushed, along with my heart and lungs. My respiratory muscles were already compromised by the NMD, add in being crushed by Scoliosis, I nearly ended up having a Tracheostomy as they struggled to get me off the ventilator afterwards. 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 age 14 after surgery. This had a direct impact on my education as I ended up needing to be medically exempt from doing my GCSE’s along with my peers. 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 would 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 but how much pain I was in and the need to lie flat on my back again for ANY degree of relief. 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
|(IMAGE: A rear wheel drive powered wheelchair with tilt and recline functions, image showing how it can recline the user almost lying completely flat)|
After 2 years, 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 every 20mins or as needed WITHOUT needing to get back in bed for the same relief, having one of these wheelchairs could be my ticket to freedom again! 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 with the ability to change your own position and shift your weight. The new wheelchair accompanied with a NSAID anti-inflammatory drug called Feldene gave me my quality of life back!
10 Years Later
Suddenly 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.
|(IMAGE: Diagram of the sciatic nerve that runs from the lumbar spine down the back of either leg, right to the toes)|
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 was growing. I went back for a second opinion. He ordered a back x-ray and an MRI. Only with all the metal work and fusion, it was obscuring the image results on both 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 (yet 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 not to go ahead with this as my NMD rendered me now too weak respiratory and overall health 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 combined cause of my fusion at a young age along with my underlying NMD. They discovered I had Osteoarthritis of the spine, Ankylosing-spondylitis, both rare long term complications of Spinal Fusion surgery that can arise years down the line. Although it is still thought the sciatica to be the root cause of the painful nerve sensations that consumed me.
Getting the ‘Cocktail’ just Right
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 have little quality of life, then things must be really 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 dreamed of going to College to try and get the GCSE’s pain robbed from me, to travel volunteering and advocating for disability rights, 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 recently from Cancer, I associated morphine with him and end of life care. My GP tried to explain to me that morphine wasn’t just for people who were dying, that it was used by people like me who are suffering everyday from chronic pain, and that because we’ve run out of options to pinpoint exactly where its coming from (nerve wise) for any possibility of fixing it, all we can do is try and control the pain.
I thought about what he said long and hard. Spent a week mulling it over in my head. My options were..
1. Stay like this
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.
|(IMAGE: Stock photos of MST, Pregablin and Amitryltaline)|
Yes, I’m rattling but these drugs have given me back my quality of life! I am able to go do the things I want to do in life again. Ok, I’m still in pain but it’s manageable now and it only puts me back in bed once or twice a week. The rest of the time it is well controlled with this particular cocktail. It’s now 6 years later and they are still what keeps me an active wheelchair user with a muscle wasting condition.
Where Am I Now?
My nerve issues associated with the spinal fusion continued to progress to where I’ve lost all sensation and use of my right leg sadly. 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.’ 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. I’ve had several hospital admissions for other things that meant I couldn’t take or keep down these medications I need to take everyday just to be normal. These times remind me of how I’m blessed to have access to these drugs as its a reminder of how life would be if I’d of refused strong opiates. I’m in discussions about moving onto some form of pain patch so i can still have pain relief when ill. Opiates are frowned upon in general for patients with Neuromuscular Diseases as it surpresses breathing. Though at the end of the day its my choice to take that risk and stay semi-comfortable and active vs bedridden and in agony ‘just incase’ it made my breathing worse. At the end of the day it’s about quality over quantity of life.
Accepting and tailoring this combination of strong pain medications was the best decision I ever made for my wellbeing. If it wasn’t for finding the right combination I wouldn’t of become an active disability campaigner, be traveling up and down the country and be raising two young children right now. It gave me a new lease on life and I don’t intend on wasting it!