When I was a kid (around 11 years old) I used to get intense cramping in my legs. I would kneel on the sofa and jump off on to the floor, landing on my bent legs to shock the pain away. I remember thinking I wanted to grab the muscle inside my leg and pull it out to stop the pain.
I never saw a doctor about it.
In 2000, I was clubbing in Ibiza (at Space, if anyone remembers it?) and my legs gave way and I almost collapsed. Instant pain surged through my sciatic nerve – although I didn’t know what it was at the time. Back in Leeds, I went to see my GP who organised a course of physiotherapy. There was no scan taken and he said as I was only 21 years old, it was most likely superficial. The physio was rubbish. I’d turn up, he would show me some exercises to do at home, hand me a print out of the exercises and I’d leave. The following week, I would go back, he would ask if I’d exercised, once I said yes, he handed me another print out and send me on my way. This lasted all of six weeks and I walked away feeling it had achieved nothing.
The pain came back every now and again, but I was out on the clubbing scene every weekend and was rather fit, so I danced through the pain until eventually it passed.
Fast-forward to 2011. I was at the gym doing leg presses, when something shifted inside my lower back and pain instantly surged through my body. I couldn’t stand up straight. This lasted for two weeks. At work, people jokingly called me “Mrs Overall” from Acorn Antiques. My GP sent me for an X-Ray and I was told (incorrectly) I had a bent spine. I was given painkillers which helped, but I struggled constantly from that point.
A few months later, my then new GP sent me for an MRI. It was after this scan; I was told I had spinal stenosis. I remember that year vividly. I was in pain most of the time, but managed it the best I could. I started taking a lot of time off work, I wasn’t able to sleep and my friend bought me a wooden contraption called a Flexibak which I would lay on for at least an hour a day.
Nothing helped.
I was given more and more pain killers but nothing stopped the pain. Another MRI told me that the discs in my lumbar were leaking cartilage and bulging onto my sciatic nerve, which was causing the pain. At this point, I was signed off from work indefinitely.
It was now 2012. I couldn’t work, had very little money, my partner at the time and I split up and my best friend killed himself. I went through therapy, physio and was prescribed strong opioids and antidepressants.
Everybody told me that if I exercised more, it would reduce the effects.
In 2014, I lost a lot of weight, was more active and with the help of therapy, I stopped taking the strong opioids which were dulling my senses and brain functions.
In 2015 I met Ken and last year came off antidepressants.
Just before Christmas 2017, the sharp pain came back. I couldn’t stand up straight, but being so close to Christmas, I tried to exercise it out before going to my Mum’s house. It got worse, a lot worse and by January 2018 I was screaming in pain. I couldn’t sleep for more than an hour at a time. I saw a specialist, had another MRI and then two steroid injections over the course of the next few months. Hydrotherapy and physiotherapy seemed to help and by the summer, I was feeling a lot better, just in time for our wedding.
Ten months later, the pain returned, another MRI, another injection. Seven months later, the pain returned. A new doctor saw me, this time, a pain specialist. Another MRI, another injection and then a follow up appointment – yesterday.
It has been a month since my most recent injection and when I walked into his office, I was relatively pain free. We looked at my MRI scans and for the first time in 9 years, the first doctor talked me through the results.
Without getting too technical, I was born with a narrow spinal canal. It’s this that protects the spinal column from the outer back. Mine is thinner than the average person, by quite a bit. Without this protection, I was always going to have problems. The lumbar (lower back) is the place my pain comes from. As you can see on the scan, the two discs at the bottom (on the curve of the spine) have almost completely depleted of cartilage. The doctor told me this has been happening for decades, possibly my whole life, and now there is nothing they can do to stop it. In the next ten years, those discs will fuse together and restrict my mobility. By how much, we don’t know.
The disc space above that, is pushing out cartilage towards my spinal canal, pressing on to the sciatic nerve. This is the point of the acute pain which the injections dull for X number of months at a time. There is an operation I can have to remove the excess cartilage, but as I have no weakness in my legs and the injections work, he doesn’t advice having this yet. There are risks involved and the recovery time is 4-6 weeks. It also won’t stop the lower discs from fusing.
As positive and optimistic as I usually am, I asked what I could do myself to stop this from getting worse. Rolling around my head were the words of physiotherapists, doctors and friends who for years, have all told me that exercise will stop the pain.
Nothing. Nothing I can do can stop any of this from happening. Not exercise, not physio, not a chiropractor, not any kind of drug.
He still advised to keep exercising to stay fit and to build the muscles around the lumbar, but it won’t stop the discs bulging or my spine collapsing.
We even discussed experimental treatments including stem cells injected into the cartilage to build it back up, but there isn’t enough in my spine to work with.
This is genetic. If I had been born twenty years later, it probably would have been caught a lot sooner (maybe when I was 11) and perhaps something could have been done. But it’s unlikely. It wouldn’t change the fact my spinal canal isn’t big enough to offer the protection I need.
On my way home, I went through a rush of different emotions. I stopped by at the shop to pick up food for dinner and as I bent down to pick up some veg, my lower back shifted and made a grinding/crunching sound. I almost fell to my knees as pain surged through my body.
I made it back to the flat and burst into tears. The pain was so intense and I didn’t understand why. I only had an injection a month ago. I shouldn’t feel anything like this until next year.
My husband rushed home to look after me. I took a sleeping pill to get me to sleep, but I woke up, still in pain. We’re supposed to be flying to Singapore on Monday (in 3 days’ time) and now I don’t know if I can. (It’s a 14-hour flight.)
I’m now at home, feeling scared, in pain and not knowing what I do from here on in or what the future holds.
