I have a sitting disability. Oh and a few other chronic pains

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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.

Sitting disability

Sitting disability - keep calm and don?t sit down

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.

Neck pain

An image of Dr Patrick Foye (The Tailbone Doctor) from his Twitter Page

Dr Patrick Foye (Tailbone Doctor) is a fountain of knowledge on all things to do with coccyx/tailbone pain

 

Since my coccygectomy surgery I have suffered from neck pain, which also causes headaches. 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.

Endometriosis

An image from the website www.endometriosis-uk.org describing how endometriosis affects 1 in 10 women in the UK

This image is from the website www.endometriosis-uk.org

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.

Hiatus Hernia

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.

13 thoughts on “I have a sitting disability. Oh and a few other chronic pains

  1. Christy B says:

    You have a lot to take on and I thank you for sharing it with us. Hopefully by doing so you can find those who share their own stories with you and build connections. Wishing you a day of less pain and hopefully a few smiles 🙂

    • Alice says:

      Thank you Christy. My blogging so far has really been helping me. It?s great to connect with other people and learn from them too. Have a good day ?

  2. Claire says:

    Thanks for sharing on the SundayBlogshare ? I have shared a link to your great post on PainPals regular feature Monday Magic ? Inspiring Blogs for You, and followed you. Very pleased to connect Claire

    • Alice says:

      Thanks Claire – this is brilliant! I did wonder how my blog was on the PainPals Monday Magic feature but I was delighted to see it! And thank you for following me. It?s great to connect with you too ?

  3. Josy A says:

    Goodness that is a lot to cope with! It is nice to “meet” you through the big up your blog group.

    I really hope blogging about it helps you. We’ll all do our best to support you. 🙂

    • Alice says:

      Thank you for your kind words and offer of support 🙂

      Writing about my pain definitely helps and it gives me something to focus on.

      It?s also really helpful getting to know other people. Not just those who also have chronic pain, but the wider blogging community in general 🙂

  4. Anindya Rakshit says:

    Its unfortunate to read about your ailments…..that really needs lots of exercises, proper treatment and guidance…..and I sincerely hope your pain becomes less and less…….it was a very researched and absorbing read….

  5. Lorna says:

    I have CP and I’m a wheelchair-user so I um, sit a lot. I know it’s not the same, but my tailbone and hip pain is eased by sports massage/deep tissue massage ( for maintenance, not relaxation, though I do find it relaxing.)

    And do wedged cushions/gel seating help you at all?

    Lorna

    • Alice says:

      Hi Lorna. Thank you for reading my blog!
      I’ve tried all types of treatment, but sports massage is one type I haven’t tried. I’ve tried other types of massages, but nothing works unfortunately. The thought of too much pressure in my coccyx area makes me go all funny, if I’m honest – I don’t think I can cope with the pain.
      I’ve tried several types of cushions as well. The one that works the best is the Putnam’s coccyx cut-out cushion, although I still suffer pain; it just means I can sometimes sit longer before the pain kicks in.

  6. Angela Noel says:

    This does sound like a lot. The thing we do to cope with pain, relieving the issue of the moment, but causing more issues down the road, is a topic I’m interested in. Everything is connected, in life and especially with our bodies. It’s a topic I want to know more about.

    I am so sorry you have so much to deal with. I hope you find relief–and answers.

  7. Parul says:

    Sorry to hear about your conditions. What makes me feel good is that you are sharing about it here and making friends with Sunday Blog Share. I have a back trouble too and I manage it with a lot of physical activity. That helps me keep my weight in check too.

    • Alice says:

      Hello Parul. Thank you for taking the time to read my blog and commenting. I?m very new to blogging – it?s great to make new friends. I?m sorry to hear you have back trouble too. One thing I hope to do more of is exercise. I agree, it?s good for keeping weight down and for our mental health too ?? have a good day.

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