There are millions of people living with chronic pain every day, and it presents itself in many different forms. For me, I was diagnosed with multilevel degenerative disc disease, complete with three prolapsed discs putting pressure on my spinal cord. Two of these discs are in the lumbar region that press on my sciatic nerves – left, and right side. Therefore, I frequently lose feeling, or have pins and needle-like sensations in my hands and feet, and aches and stabbing pains in my legs and spine. I was 24 when I had an MRI to confirm my condition – and this was after fighting doctors for a year for them to believe I was in any pain at all. I mean, after all, how can a 23 year old have chronic back pain? There was no accident or injury, I literally woke up one day with lower back pain and burning hot stabbing pains in my butt cheek.
So why did it happen? Overweight? Ok, I was never thin – but I played football and was pretty strong and active my whole life. Medication side effects? I was put on the contraceptive injection (DEPO) at the age of 15, alongside Roaccutane for bad acne. Both of which are linked to bone disease. Was it this? Who knows, all I know is that this absolutely floored me.
I took my friend to my hospital appointment for my MRI results – I’m glad she was there as I’m pretty sure no-one would’ve believed me. It wasn’t my normal orthopaedist, he had taken holidays. The new guy sat me down, and asked if I was comfortable – weird. Took a deep breath and said “Ok Toni, I’m going to be straight with you. It’s not great news.” – held my breath – “But it’s not the worst.” – still holding my breath. He continued to tell me about the multiple degeneration at various levels in my spine. Disc herniations between L3 and L4, and L4 and L5. But the bulging disc between T11 and T12 wasn’t as bad – I’d get another couple of years out of that before it got really bad. There’s also some degeneration in the cervical region in my neck – but no disc protrusion as yet. Not quite sure when I stopped holding my breath.
Ok doc – how do I fix it? “You can’t. You can take steps to prevent rapid degeneration from this point, such as keeping active, losing weight, and staying positive. But it will always get worse and without any intervention, the majority are wheelchair reliant in their 60’s”
I don’t know what I expected to feel. There was a small sense of achievement in that I knew I hadn’t been lying about the pain, I knew something was wrong. But this feeling was quickly abated by fear of what lay ahead.
From there I was referred to neurologists who informed me of an operation I can have to fuse the vertebrae. This will of course lead to limited flexibility and movement, and there’s a 50% chance the sciatic nerve will be damaged beyond repair – but still, an 80% chance the overall pain will subside.
I was 25 at the time when I was given this option – what would you do? It would be unlikely I would be able to play football, which is the biggest passion in my life and the only activity keeping me relatively sane. Limited movement and flexibility would mean yoga and pilates would be damn near impossible, or in any case, painful. Oh and the small fact that given the placement of my protruding discs, the surgeons would need to enter from the front of my body, and remove most of my organs, to safely reach the specific regions of my spine. Perfect. Or do I wait for the wonderful world of science to progress, when I already knew they were working on lab-grown disc implants…? I chose to wait. And hope.
That was 10 years ago. Ten years since I felt that first pang of pain – and I can honestly say there has not been a day gone past where I’m not in some sort of pain or discomfort. I have tried physiotherapy, acupuncture, massage, hot stone therapies, CBD oil, yoga, pilates, regular gym going, football and other physical activities. Nothing helps. Nothing. And it only gets worse, and more expensive. If I could go back to 24 year old me with the pain I had then, my god I would.
I struggled on through university studying marine and freshwater biology at Glasgow. The subject and course was fantastic but sitting in lectures had me in torture. I was given amitriptyline and strong cocodamol tablets to relieve any symptoms. In my second year, a certain female head of year advised me that I wouldn’t cope with university or a research career, after revealing my medical condition, and that I should probably just give up now. Cheers Maureen. But the Disability Services allocated me extra time during exams and were so helpful accommodating my needs to record lectures and such like – big shout out to Julie Summers. I managed a 2.1 degree – even after missing an exam due to confusing days whilst trying to get used to my strong painkillers. I literally didn’t know which day it was. I was a bit disappointed with the university’s decision to cap my resit B1 grade to a D3 because I missed the original exam – but hey, I got there.
I’m now a second year PhD student at Glasgow University trying to develop a molecular test to monitor diseases related to complex gill disease in aquaculture, using environmental DNA techniques. My research involves a lot of lab and field work, as well as computer work. But as we know the world has gone into lockdown during the COVID outbreak – meaning that working from home has become a necessity for most, especially those in research. And I for one, am struggling to adapt.
Usually it’s the sciatic pain that is constant – but lately this has been overtaken by an intense ache between my shoulder blades and at the base of my neck. It almost feels like my muscles are so tightly bound together that I can’t take a full breath and it feels like I need to concentrate on how to breathe properly. I have experienced this similar achy pain before but my painkillers would usually dull it and I could walk around and break up my day by alternating computer-based work, with lab work and other physical tasks. Not an option I have at the moment, or for the foreseeable. Now this pain is literally all I think about, I can feel every vertebrae screaming at me, then I realise I’m holding my breath with each intake to try and prevent the pain that comes with each exhale.
The first few days were ok – isolating with my also football crazy flatmate meant that we could go to a quiet area to play football and keep relatively active. For years now, I wake up each morning in a lot of pain and take a good 20 minutes to get out of bed, slowly regaining feeling in my legs and feet before hobbling to the shower where the warm water would ease the stiffness. But regardless, I retrieved my stand-up desk and other helpful equipment from work – and felt satisfied that I could work without excessive pain. But 5 days ago, something changed.
I woke up with my chest feeling heavy, covid? No cough or other symptoms, and been in isolation for 3 weeks. No, this pain was radiating from my spine between my shoulder blades, and base of my neck. It felt like there was a heavy, spiked ball inside my chest – right at the back. I sit down, it’s there. I stand, it’s there. I lay down, it’s there – but slightly less intense. For 5 days straight. I would never usually take my strong painkillers, except in the evening if the pain was bad. But now I’m waking up and within an hour or two, I need pain relief. My tablets have stopped working. Probably due to building up some sort of tolerance from taking them more regularly – even though I refuse to take them more than twice a day. Co-codamol are highly addictive, thankfully I don’t have an addictive personality for anything much more than chocolate and whisky.
During the lockdown I’m trying to do some data analyses at my computer but it doesn’t matter whether I stand or sit, I cannot for the life of me concentrate on anything other than the pain. My flat is colder than my office at work, so my hands are seizing up as the arthritis spreads to other areas of my body. The doctors say the next step is to give me morphine-based painkillers – I can’t imagine my bioinformatics analysis going very well if I start necking them once or twice a day. No thanks doc.
So here I am – at breaking point. I have done zero work the last 4 days and even as I write this, I cannot wait to be horizontal, to be able to breathe normally for a while. I’m exhausted, physically and mentally drained – and if I feel like this, then I dread to think what others with more severe diagnoses are like. I feel for every single one of you during this time. Research into this area is still ongoing but a huge development at the University of Pennsylvania has given me some hope. Scientists at Penn Med have bioengineered discs made from a robust polymer and human cells. The discs were transplanted into the necks of goats and after 2 months, the discs had employed an almost natural range of motion and durability. The research team intend to further test on more goats for 2 years before moving on to human trials. You can find out more about this research here.
I will continue to keep trying different methods of pain relief and exercises – but right now, I’m not feeling great about myself or my PhD. I’m not one for crying, far from it – I prefer my tough exterior to be maintained at all times. But many tears have been shed at my absolute lack of being able to do anything of late.
Fortunately, I have an amazingly understanding supervisor – who’s response to me apologising for me being a sh*t show at the minute was: “YOU ARE NOT. You are a wonderful human bean.” – yes, he wrote bean, and yes I followed it with this picture. Let me take this opportunity to say thank you for understanding Martin, you are also a wonderful human bean.
I realise that some people may not be as lucky as me, and I’m sending some positivity your way. If you’re struggling right now too, here’s a few things that have helped me deal with the pain lately:
- Water – drink at least 2-3L per day and I swear it will make you feel so much better. Muscles become tight and achy when even slightly dehydrated.
- Yoga and exercising – you will feel like your body is ripping apart for the first week or so but stick with it and eventually it will get easier. You’ll still have good days and bad days but less of the bad is always better.
- Metafit gym class – this class specifically uses your own body weight and compliments yoga workouts nicely. Even after one class of twisting and turning and using my own weight, my spine felt more flexible.
- Get a decent pillow – if your neck and thoracic regions are in torture, a good pillow will keep your neck alignment correct through the night and will save you a lot of pain. Ditch the multiple pillows – and stop looking down at your phone as much.
- Typing gloves! If your hands are stiff and seizing up with the cold then a pair of these will help – good for playing the guitar or other instruments too. You can even get ones that plug into your computer to heat your nimble fingers.
- Ladies – accept that when your time of the month comes along, you will lose between 1-3 days of your life. Every 28 days my back radiates so much pain, coupled with immense period pain – so much so that I simply cannot get out of bed. No amount of painkillers will prevent it. It is what it is.
- Laugh. Make other people laugh. Laugh at yourself. When you can’t get out of bed because your feet haven’t regained full function – laugh. When you’ve been engrossed on your computer or sofa for too long in the same position and it feels like moving will literally break you in half – laugh. In those moments, embrace that inner 90 year old! It will keep you sane.
- Don’t be afraid to tell people. For years I was embarrassed about my diagnosis, I didn’t want people feeling sorry for me when I couldn’t do simple tasks. I used to work through the pain, continue to lift heavy objects and try to carry on like it wouldn’t affect me later that evening. It’s not impressive, it’s plain stupid – and you will injure yourself further. People that matter, will understand.
Finally and most importantly, remember that you can get through this, one day at a time. So please everyone, stay safe, and stay home – even when it hurts.