Coccyx Pain: How It All Began
I’ve had chronic coccyx pain and a sitting disability since 2012. This simply means that I am in pain when I sit down. The thing with coccyx pain is that in the early days it is left to heal on its own, as there is no plaster cast or bandage or anything that can be put on it. I remember being at my very first appointment with the nurse practitioner, who said that even if it was broken, there was nothing they could do except give it time to heal by itself.
I gave it time to heal, but several months later I returned to my GP in exactly the same amount of pain. I had an MRI and a sit down/stand-up x-ray, and I got various opinions about a diagnosis – from “it looks normal” to “it could be fractured.”
Over the next year or so I saw numerous specialists and tried all kinds of treatment – physiotherapy, exercises, chiropractic treatment – as well as numerous types of medication and painkillers. But nothing seemed to fix the problem or stop my pain. I saw an orthopaedic surgeon who gave me a diagnosis that my coccyx was dislocated in two places. He tried some more treatment, which didn’t work, and said the last resort was to have my coccyx removed. I had the surgery in February 2015.
A Major Surgical Decision
Despite the high risk of infection because of the location of the surgery, six months recovery afterwards, the two years before I would know if the surgery had worked, and the high chance that having my coccyx removed wouldn’t solve the problem, I wanted to give it a go. I couldn’t carry on as I was. I was miserable, I’d put my life on hold, I was saying no to doing stuff with my family and friends, and I was becoming a person who I didn’t like.
In early 2017, two years after my coccyx was removed, I knew the operation hadn’t worked. I knew this much earlier in my post-op recovery, but there was always that little glimmer of hope that kept saying I needed to wait the full two years.
Since having the operation, I now suffer from neck pain, too. For a while I was convinced that the surgery had caused another problem, but my physiotherapist says this pain is caused by my many years of abnormal sitting, which has caused damage to my spine. Literally, by avoiding one pain I have caused another.
The Challenges of My Pain
A sitting disability is a very challenging pain to have as we do so much sitting down: eat meals, watch TV, relax, drive, work, the list goes on. I had years of frustration and anger, as no one seemed to take me seriously.
Having an invisible health condition or disability can be difficult for others to understand when there is nothing physical to see. You feel you have to justify yourself all the time, and explain the pain and why you’re doing something different to how others do things. For example, when I’m the only one standing and everyone is sitting, or why I’m sitting on a special cushion.
I find it embarrassing to explain things to people who don’t know about my pain. It’s often easier to try and hide my pain, not make a fuss, and try and carry on without having to explain myself all the time. I often worry what people think and if they actually believe me.
I have also found that my anxiety has got worse since having chronic pain. A big part of this was the amount of time I spent at home as part of my recovery after my surgery. Since I wrote a blog post about chronic pain and anxiety, I’ve learnt it’s a natural symptom due to the body being in a constant fight or flight mode.
My chronic pain affected my work, too. Unfortunately I had to step down from a team leader role, which was very difficult to accept. I had worked hard to progress my career and step up the ladder, and it was even harder to take a pay cut. But I knew I was lucky to have the support of my employer, and was extremely lucky to still have a job.
How I’ve Overcome Some of my Struggles
The turning point for me was changing my mindset. I knew I had to accept my pain, stop fighting for more tests and a diagnosis, and just focus on getting my life back and doing the things I enjoy as best I could. So that’s what I did. It was easier than I thought. I knew all along that if the operation didn’t work, there was nothing more they could do, which meant there was nothing more I could do. I read a book called Beyond Pain: Conquer Your Pain, Reclaim Your Life by Anjelo Ratnachandra and it really changed my way of thinking. My attitude became: I’d rather be in pain doing the things I enjoy, than be in pain doing nothing and be miserable.
Focusing My Energy on the Right Things
I also learnt to focus my energy on the right things. Chronic pain is mentally draining – I was constantly thinking about the pain, how to avoid the pain, and how to manage the pain. This took a lot up a lot of my energy and added to the physical fatigue, which is a natural symptom of chronic pain.
This led to me focusing on what I can do, and not on what I can’t. Yes, I have to do some things differently, or I use aids to help me when I sit down. But these help to take away the barriers and allow me to say “yes” to doing stuff as often as possible. I have learnt to be innovative in my thinking about how I can carry on doing the things that I enjoy. For example, I love going to the cinema with my partner, so I go to a cinema that has recliner seats or sofas. I’m never completely pain free, but if it means I can spend quality time doing something I love, with the love of my life, then I’ll give it a go.
Doing What I Enjoy
I’ve learnt a lot about endorphins since reading Anjelo’s book. When we do things that we enjoy or that make us happy, our body releases endorphins and these are a natural pain relief. This has really motivated me to carry on doing stuff that I enjoy. Again, I’m never pain-free, but I’d much rather be doing an activity or task that makes me happy and can help distract me from my pain. I write regular blog posts about the things I’m so glad I’ve done to show that you can do the things you enjoy despite having chronic pain. Everyone’s challenges are different, and it can take time to get to this point in your chronic pain journey.
There is no treatment or medication that can take my pain away. It’s simply a case of managing my pain as best I can. I use heat packs, physio tape, and do lots of walking and different exercises to help stretch my muscles. I’ve also learnt to manage my anxiety and stress levels so they don’t have any further impacts on my pain. Stress and anxiety naturally make me feel tense and cause tightness or knots in my muscles which cause additional problems and pain. Since September 2017, I have been seeing a physiotherapist to help with treating my neck pain. I’ve spent hundreds of pounds, but I am finally at a point where I only have to go every 6-8 weeks for maintenance treatment. My abnormal sitting has caused issues that cannot be reversed, so I have to make sure that I keep on top of this to stop things from getting any worse.
Setting Goals and Challenging Myself
I like to challenge myself as this gives me something to work towards and focus on. I set myself different goals to try and push myself out of my comfort zone to build on my confidence and help tackle my anxiety. Some examples include: trying to hit 10,000 steps a day, leading web conferences at work, and setting up and writing my blog. I’ve found this has turned something negative into something positive, and I love that I am able to help others think differently and learn to cope better and live a more positive life with their pain.
In work, I was fortunate to be offered another job as a workplace adjustment under the Equality Act. It was certainly a worrying and difficult journey to go through, but I had several workplace adjustments and am able to still work full-time.
The Things I Still Struggle With
I don’t think I’ll ever fully cope with everything my pain throws at me. I’ve come a long way, and have challenged myself to change my mindset and ways of thinking alongside doing things differently, either with or without support and adjustments. I know there are still some areas of my chronic pain life that are difficult to cope with or accept. Like anyone with chronic pain or a chronic illness, I still have bad days and struggle to cope, and I still find it embarrassing to explain my pain to others.
Bad pain days are difficult to cope with both physically and mentally. Getting comfy is the most challenging thing for me, and by avoiding one pain I often make another pain worse.
On these days I just have to accept that I won’t be as productive, motivated, or happy as usual. I make sure I distract myself and keep my mind busy as much as I can so I don’t overthink and dwell on things too much.
I especially struggle when I have other pains on top of my coccyx and neck pain. I also have endometriosis, and struggle with the symptoms of this as well as additional fatigue. I’m the same when I have a cold or bad headache, as everything just gets so much more difficult to manage.
I find it hard when my pain affects other people. If my pain is bad and I can’t do something with my partner, I find it very upsetting and hard to accept. My partner is brilliant, and she will never pressure me to do something that she knows I will struggle doing. It doesn’t stop me feeling guilty, though.
Another thing I struggle with is trying not to overdo things on good days. I keep pushing myself to carry on because I get a sense of achievement or I’m simply enjoying myself or having fun. But I know this often affects me the next day and I can feel exhausted. Sometimes this isn’t always a bad thing, as I’m making the most of being productive and having a good pain day. But it’s much more sensible to balance and pace my energy and not burn myself out.
Despite all of my challenges, I still believe in fate. I’ve been on a journey that has taught me a lot and I believe I am meant to be where I am in life right now. I’m doing a job that suits me and my skills better than my last job, and I’m writing a blog that will hopefully help and inspire others to cope with their chronic pain better.
About the Author:
Alice lives in the north west of England with her partner and her two Westies.
Her blog Notebooks and Glasses is about living a positive life with chronic pain: her words and observations. She gives real advice and tips and shares experiences of staying positive despite having chronic pain, and encourage people to carry on doing the things they enjoy.