I want you to get to know me a bit better so in this blog post I talk in more detail about what my chronic pains are. As I mention in my About page, I suffer from different types of chronic pain, and they’re all invisible disabilities. Last week was Invisible Disabilities Week (in the USA – it’s a pity we don’t have something similar in the U.K.) so I wanted to post this blog now to be a part of the conversations.
I have a sitting disability and my main symptom is coccyx pain (coccydynia) or as I sometimes say, chronic lower back pain, as I no longer have a coccyx. This means that I am in pain when I sit down. My initial diagnosis was a dislocated coccyx, but my pain is still the same despite having an operation to have my coccyx removed (coccygectomy). I will talk about this more in a future blog post.
The pain always gets worse the more I sit down. This often means that my pain is worst in the evenings. It’s hard to live life without sitting, but if I don’t sit much during the day, then my pain sometimes doesn’t kick in until later on. Pain management is crucial for me to make sure that I can carry on doing day to day tasks and the things I enjoy.
My pain feels more like bone pain than anything else. It definitely isn’t muscle pain. It’s as though I am sat on something extremely hard and uncomfortable.
I am learning to cope more with the pain, but a lot of the time I cannot sit normally because it is so bad. Instead, I have to lean forward or to the side, or whenever I can, I lie down.
My long-term worry is that the abnormal sitting is causing damage to my spine. My gym instructor even said my left shoulder is higher than my right, and this could be because I lean to my left more and often support myself by puttting the pressure on my elbow.
Since my coccygectomy surgery I have suffered from neck pain. My theory was that it is either caused by long-term abnormal sitting. Or it is linked specifically to my surgery.
I’ve recently done some research on this and Dr Patrick Foye (Tailbone Doctor) states on his website and in his YouTube video about neck pain and tailbone pain, that it can be caused by scar tissue after the coccygectomy, or as a result of sitting forward or to one side.
This pain is getting more and more difficult to manage and recently I’ve reluctantly had to take time off work because of it.
I am due to see a physio next week about my neck pain and will be writing a blog post about what happens.
Other aches and pains caused by my sitting disability
Due to all the standing that I do to avoid pain when sitting, especially using my stand up desk in work, I often suffer knee pain, aching legs and sore feet. The knee pain is the one I have to manage and think about the most. When I first started standing to work I wasn’t wearing the right shoes and this meant that my knees were in the wrong position which caused additional pain.
I now wear running shoes most of the time, especially when I work. In general this stops the knee pain. Occasionally I have knee pain so I make sure I move about and lie down much more to help manage this.
I have stage 4 endo and have suffered since I was in my teens. This mainly consists of chronic abdominal pain. This won’t be the main focus of my blog but I will write about it when it affects me as it impacts on my ability to manage my sitting pain.
I’m currently on some treatment for 6 months which is reducing my pain. Finally, after nearly 20 years!
IBS (Irritable bowel syndrome)
I don’t suffer with this much these days. I do have abdominal pain from time to time, and am often bloated. Stress can cause the pain and the bloating could be caused by any number of things, including my endo treatment.
This pain is excruciating when I have it. It’s like someone is standing on my diaphragm with a stiletto heel. I don’t have it very often thankfully, but when I do, I get the pain when I am lying down. As you can imagine, this makes my sitting disability pain even harder to manage.
If you suffer from any of these pains I’d love to hear how you cope. Please get in touch or comment below.
In my next blog post I shall talk about my Top 10 ways to cope with chronic pain.