Recovering from years of coccyx pain

Nicolas, UK - palpycus@gmail.com

Posted 2016-10-09

A pain in the ass - literally and figuratively. This could summarize the last three years of my life. I have read enough stories on this website and suffered enough, physically and emotionally, not to think that this was all a bad dream. At last, some hope that I was not expecting anymore and that I will never take for granted.

This all started a long time ago – years of slumping on chairs. Bad for my back, they said - bad for my coccyx, I have experienced. Then came a period between jobs, slumping in a set square position on a sofa with arms. I started to notice some vague pain in the coccyx region, but it would disappear after a while. Until one day, it did not.

I have always been a back sleeper. And as you must already know as you read this post, this does not play well with coccyx pain. Except that at the early stage of this calamity, I did not know how hard I would, years later, have to tie my ankles to my bed, in order to sleep on my stomach and finally get some relief.

About 6 months after the first time I noticed the pain, I finally went to see my GP as the pain was unbearable. At that time, I thought that some magic pill or cream would do the trick. I was wrong. So was he. After a few weeks, he finally agreed to refer me to a spine specialist.

He scheduled an MRI that revealed some form of bursitis near the tip of the coccyx. Fortunately, nothing morbid. His diagnostic – a coccydonia. He could not really justify anatomically what triggered it, or what would maintain it. His solution: a caudal epidural injection with a sacrococcygeal block under anaesthesia. This should solve the problem with a 70% chance of success.

Luck was not on my side. The first month after the injection was like being almost back to normal, but some impetuous sharp pain gave me quickly the feeling that this would not last. I was in the bad 30% - another injection was required and a month later, the procedure took place again at the hospital. Seconds after waking up, I knew I was in for a long journey. The pain was still there, though diminished.

This false sensation of recovery led to what I now appreciate was a self-perpetuating circle: as soon as I would feel slightly better, I would let myself go, sit on a soft and comfy chair, or sleep on the back – consciously or unconsciously. Not fully appreciating back then that fighting this calamity would require a very strict lifestyle management.

A few weeks after the second injection, spine doctor told me to come back after three to six months if the pain was really back, as the drug needed some time to fully do its magic. I was already living for the past 9 months with my pain without really understanding it, or even how to avoid it properly. He did suggest me some cushions. Except they never really worked.

As humans, we are designed to sit on our bum - and the world is designed to welcome our bums. At work, at home, in the subway, in the car, in the plane. No, I am not dreaming… every single one of these places is calling for my bum to sit on one of their mostly guaranteed soft seats. With the injection hiding the pain, I did enjoy them from time to time but predictably, this was for a short time.

Naturally, one cannot try to avoid pain without consequences – months of compensating for the pain while sitting led to a natural and unconscious twist: I was seating bent towards my right side while trying to lift my left glut. Hence started my back pain.

Once again, I did not fully comprehend back then the cause of this pain. I met with a back pain specialist that did schedule an MRI. Verdict: L5 disc degeneration. His medical advice was to do some physio sessions. Unfortunately, they would not be very efficient, as I was still not sitting straight.

The pain in my coccyx finally came back a few months later - slowly but steadily. It is at that time that I started to wonder how the pain was triggered by my daily routine. During the following months, I started to experiment with different cushions, postures,... But what I also noticed is how my sleep was so poor because of shooting pain during the night. And no matter how hard I was trying not to sleep on my back, I always ended up on that position.

The only trick that finally worked was directly inspired by 50 shades of Grey... to restrain my ankles with a rope in order to force me to sleep on my stomach. This was a good position for my coccyx but not so much for my back. Weeks of experimentation and reading led me to add a cushion under my pelvis too.

But truth is: as soon as I would sit on a chair, even a hard one, the pain would come back. Quite desperate, I went to see back the spine specialist - according to him, inflammation was back - no explanation. He proposed to do 3 injections in a row, over the next few months. The outcome was that I was back in his office, 6 months later, discussing 'what now?' as it did not work. He admitted that he could not do more for me and told me that I should escalate to pain management. He implied a nerve could be twisted and irritated - but this was only a guess. Ironically, while he was referring me to one of his colleagues, I noticed he was twisting on his chair, a bit like me and of course, I had to ask him - he too was suffering from the same coccyx pain!

The perspective of someone numbing a bunch of nerves at the bottom of your back was not something that seemed appropriate or even acceptable without at least understanding what was triggering the pain - and a so called self sustaining inflammation or a pinched nerve seemed like a loose explanation.

I waited a few more months - back pain and coccyx pain poisoning my daily life. At some point, I got too miserable and desperate. I decided to perhaps give a chance to the pain management, but not without another opinion first. I met with another spine specialist that organized yet another MRI. The whole coccyx region was so inflamed he got really suspicious and indicated this could be an auto immune problem, and referred me to a rheumatologist, not before ruling out the idea of removing my coccyx (he was particularly against the idea in the first place, as there is usually no guarantee of success but there is a very likely 30% chance of anal incontinence...).

The rheumatologist organized some blood work and a SPECT CT in order to check whether the inflammation was more global. The result surprised him - there was nothing wrong.

God bless the day I heard about coccyx.org. It was actually during the time I was consulting the second spine doctor. Someone else did refer it to me, as one of her relative had the same issue. I started to read many stories and recommendations.

Living in London, I considered my options among the doctors recommended by the website. A quick search on each one of them led me to take an appointment with Michael Durtnall (see Doctors and specialists in the UK, London). Michael is a busy practitioner, so I had to wait a few weeks.

During my first appointment with him, he X-rayed me and after some manipulation of the zone, gave me his conclusions: the top joint of my coccyx is not mobile, hence I seat on a part of the coccyx tip, hence the inflammation, hence the pain. That was a first - no one else ever gave me a medical or anatomical reason for my coccyx pain.

The other more than valuable lesson from that day was that he taught me how to sit properly in order to decrease the pressure on my bum, along with making me aware of the fact I must not twist otherwise this would generate back pain.

I did not know back then if his diagnostic was correct or not - it seemed to make sense considering anyone can clearly see that my coccyx was doing a 90 degrees angle on the Xray. But if it was so obvious, why did no one else mention this during the past 3 years?

I met again the rheumatologist around the same time and shared with him the conclusions of Michael 'the chiropractor'. He almost laughed and politely ignored. Ironically, he had no explanation to give me and he was still quite puzzled by my case.

During the following week I started to notice that Michael's advice in term of sitting posture had a positive effect - at least, there was a bit less pressure on the coccyx during long working hours. Again, this was a small victory that led me to believe him - but truth was, no one else had an alternative diagnostic to offer.

Michael made it clear though that it would take quite some time and many chiropractic sessions to improve the situation, and that after so many years, there was only a slim chance to achieve full recovery. He also told me to take appointments with one of the physio of his clinic, Karolina Krzaczek. During the following weeks and months, she would eventually try to release all the tension and stiffness in the muscles surrounding the coccyx.

For 3 months, I met Michael or one of his chiropractor colleagues (George Ioannidis) on a weekly basis. And during 3 months, after an initial improvement, nothing really changed. Each time I would question him whether the diagnostic was correct, or whether the problem could be at the tip of the coccyx rather than at the top joint, he would invariably reassure me and confirm his diagnostic. It was not necessarily that I did not trust him, but being in pain for so many years, and the perspective of suffering from this problem for another 50 years tends to make you feel depressed.

I kept going to both chiropractic and physio sessions - starting to think that this was going nowhere. After all, multiple specialists were unsuccessful at solving my problem.

Until one day, the pain almost disappeared. Yes, almost gone. I noticed it first after standing up from a sitting position. This would usually leave me some pain in the coccyx region - but not that day. Nor the following day. I could not believe it and did not want to jinx it. But by palpating my coccyx, I could feel it: the top joint was mobile - not that I could have ever told that it was stuck before! But by comparison, something was different.

The next time I met Michael for a session, I shook his hand and thanked him. He was right all along, and by getting the top joint of my coccyx finally mobile, I was not applying pressure on it anymore.

To this day, the pain is not entirely gone - and there is still room for improvement. The region around the sacrum is still painful at times, and I still get pain when I sit too long on a soft chair. But clearly, it seems like 3 years of nightmare are now almost gone.

I will keep seeing him and Karolina until necessary.

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