“Pain is the curl and foam of a wave that does not break.”
– Dan Simmons, The Fall of Hyperion
We are all so lucky to walk. Even to sit. You don’t know how much you will miss relaxing on a comfortable couch, until you can’t any more.
My pain stopped me from sitting comfortably. This is not the worst curse of pain anyone has ever experienced, but it is a befuddling one. I want to write my experience with this, in case anyone else diagnosed with coccydynia can find anything useful in it.
Flavors of Pain
I fell on the ice 3 years ago this December. And I’ve been cursed with a weird, new flavor of pain ever since.
The first shock of falling felt familiar. We’ve all hit the ground hard, at a bad angle. But afterwards, this was different. It stuck with me, a malingering thing, and various activities would make it worsen over the coming months. Activities like heavy lifting, certain sexual positions, and sitting. Especially sitting.
After the initial fall, I had a few aftershocks of pain which were acute enough to cause my vision to tunnel inward. I felt ill, nauseous from the sheer amount of pain coming from such a central location in the X of my body. The heat of the pain radiated from my tailbone and beneath it, headed up my spine in a torrent. After the first week, things started to heal. And most of the time, if I wasn’t sitting, I didn’t even notice much wrong. Assuming the whole awful nonsense would fix itself down in my mysterious pelvis and tailbone regions, I did not go to a doctor.
I would grow to learn that even low-level pain diffuses out through your life and lowers your levels of motivation and happiness. Not fun times ahead.
The Social Awkwardness of Not Sitting
Although the acute pain went away, I was left with a sneaking strange pain that I can only describe as “squishy” in my nether regions, exacerbated mostly again by heavy lifting, pelvic exercises such as sex… and sitting.
After sitting for 5 minutes or so, a stitching, squishy sense of wrongness would creep into the area around my tailbone. Nerves and muscles I had never really thought much about began to complain in a really strange new language that I was unprepared to understand.
It began to worsen, reaching new heights of uncomfortable pain in shorter spans of seatedness.
And all the sitting of modern life made it worse. Sitting in meetings. Sitting in the brain imaging lab that I interned at, where standing was not a feasible option. Sitting at dinner with my partner, grinning and bearing it, thinking in some small way I was going crazy.
I tried not to complain too much, but I should have made a bigger deal out of it at the time. It just came on me like a shadow, growing slowly, and I did not know how bad it would get.
Eventually, sometimes even lying down and sleeping would make it worse, and I would wake up with that bizarre firey squishy sensation already triggered.
The only ways I found to feel better were painkillers like ibuprofen, and walking. So I walked a lot. Even more than before. (I’ve never owned a car, so when I say I walked a lot, you can take my word for it.)
But still it worsened, to the point where I could not sit on a couch for ten minutes without experiencing hours of mid-level pain and days of low-level soreness. Oddly, the more padded the seat, the more pain I would be in.
Pain in the Ass
Finally I grew worried enough to go in to a doctor, six months after the original injury. Sitting was important to me, and I hadn’t realized how its being taken away as an option would impact my life.
This was where I was first diagnosed with “coccydynia”, sometimes “coccygodynia”, which if you are familiar with Latin has the translation of “tailbone pain”. Or, quite literally, “pain in the ass.”
It is a very generic diagnosis, and a very mysterious set of symptoms. Sometimes it is acute pain, sometimes not. Sometimes it is caused by a fall, sometimes by childbirth, but in as many as a third of cases, there is no “known” cause. Your pain in the ass just starts up.
So this doctor told me it was common in childbirth, rarer in males for that reason, and she had not seen it in a man before. But I seemed healthy and active, so no worries… just keep doing what I was doing and staying active and it should heal.
This was terrible, unhelpful advice.
But I trusted that doctor and did not get a second opinion. I sat there, gritting my teeth, on the padded table, telling her that it hurt about a 3 or 4 on the pain scale but that if I sat there for longer it would get worse. She didn’t tell me to stand up. That should have been a signal.
So I went home. I told my partner and my family. I finally had a name for the curse that was upon me. I read about coccydynia on sites like coccyx.org, and tried to learn about methods of dealing with it. For many sufferers, it appears to be a permanent condition. This was not looking good, but I gritted my teeth and tried to get better through sheer force of will.
I was finishing school at the time, and doing even more computing than usual. So to avoid sitting I got a standing desk at home and at work. (Thanks Jeff and Doug!) While this helped my tailbone, I eventually did some semi-permanent damage to my hips from not moving around enough. (See the next section about compensation.)
My problem also may have been made somewhat unique due to the lanky frame I inherited from my mother: I’m quite tall and very skinny. So I don’t have much padding in the ass region, and my legs are very long. That all probably has something to do with how I damaged myself.
If you are tall, getting a working standing desk may be tricky. And standing in one place can be just as dangerous to the coccydynia-addled pelvic floor muscles as sitting. So I recommend using something like the open source application Workrave to remind yourself to take breaks, and really move around from time to time. I wish I had done this sooner.
There is one trick to it, though.
Do not just think about moving around, when it prompts you.
Actually move around.
In the process of recovering from coccydynia, you are going to learn about muscles and nerves you didn’t realize you had. The pelvic floor and all its interconnections is more complex than you imagine.
But you don’t have to be able to name them all, you just have to work to become more aware of all the different muscle groups and how they interact.
One simple concept about injuries I wish I had learned about sooner is compensation. This is the idea that if you damage muscles somewhere in your body, your posture and gait will adjust (subconsciously, mostly outside your awareness!) to protect the damaged area. I did not realize it at the time, but the pelvic muscles that were damaged seemed to be damaged worse on the right side than on the left.
So my left side, quietly, began to take up the slack. When I sat, I would (again, without noticing) put more weight on my left buttcheek. When I stood, more of my weight would go on my left leg, eventually inducing meralgia and other strange pinched nerve symptoms traveling down the outer and front sides of my left thigh.
Certain muscle groups began to overtighten. Mostly in my chest and left hip, but also in my pelvic floor and leg adductors.
Other muscles began to weaken. My balance muscles, especially in my left foot. And as my third PT would discover later, the muscle that connects to my knee on the inside of my right leg (but only on the right side!) became very weakened over time. But I didn’t notice, until she pointed it out.
Styles of Treatment
Wow, I was awful. Even after I knew sitting was terrible, I kept doing it.
Treatment Rating: Dumb as heck
The original doctor I talked to: I’m going to come out and say it. I’m pissed that she just sent me out with no referral to PT, assuming I would get better. This is a TERRIBLE PLAN. If you are suffering from tailbone or pelvis pain, GO TO A PHYSICAL THERAPIST.
Treatment Rating: FAILURE. ARRRGHHH
My first physical therapist was the only PT in the entire insurance network who knew how to treat men with coccydynia. Most of them focus on females. I had to borrow a car to get out to the suburbs for appointments, and she had a very set-in-stone idea in her mind of what kind of treatment would work. Although I learned a ton about my condition from her, the recommended treatments did not necessarily help.
She also seemed certain that internal stimulation of the pelvic floor muscles was needed. This may not always be a good idea. It’s not just that it’s awkward and invasive to have someone rolling their fingers around inside your anus. Your flavor of coccydynia may be like mine, and be made worse by that tension and torsion.
My main takeaway from her was that coccydynia is mysterious, but treatable. And that you had to kind of test the various exercises on yourself over long periods of time to see what actually helps you.
Treatment Rating: Better than Nothing
I am generally a believer in medical science. I don’t go in for homeopathy. However, my second PT pushed the boundary of what I would believe. Her knowledge of the human fascial tissue (the connective tissue just underneath the skin) was amazing, and she had an intuition (by touch) that was incredible to behold.
She was fairly certain I had damaged my upper chest muscles (both in back and in front), causing them to compensate for the pelvic floor and other muscles that were getting squishy. I did not really believe this, but kept doing the exercises she recommended: backwards water walking and the plow, primarily. And they helped. My body began to reset.
In one shocking event, I was lying on her table and she was poking and prodding my chest. (She rarely worked directly on my hip or pelvic muscles at all, focusing on my chest and head.) And then she said, “Oof! There it is finally!” and pressed down super hard in a way that stunned me. But she was correct, which is the part that blew my mind. The nerves in my hips and around my burning tailbone suddenly flared once and then subsided, into a state of less pain than I had been in for quite some time. One of the strangest things I have felt in my life. Why would pushing on my ribcage so hard somehow reset my tailbone?
Unfortunately, that therapist semi-retired to run a holistic therapy office that was not covered by my insurance. And I felt I was ready for a new course of investigating that tackled the pelvic problems more directly, now that she had solved some of the compensating issues.
Between PT 2 and 3 I woke up one morning to discover that I had developed a shockingly strange-looking bruise below my tailbone, running down my butt and the backs and insides of my inner thighs. It’s still there, although somewhat less angry looking, over 6 months later.
No PT or doctor has been able to explain it, thus far…
Treatment Rating: Confusing, But Helpful
My third and current PT gels well with me, because as a writer and a programmer I find that my primary mode of attacking problems is as a “troubleshooter”. I like solving problems by understanding them in a holistic way. Picking them apart, matching up all the evidence. Whereas PT 2 could not always explain her intuitions (though they were often correct), PT 3 is an expert at explaining why certain things help and certain things hurt, and her explanations have aided me in understanding how to figure that out for myself.
She also figured out that external tailbone rotation and external activation of the ischeal tuberosity were much better than jamming a hand inside my ass for my current problems, like PT 1 always tried. I’m so very thankful for that.
PT 3 is also teaching me that posture and gait are very important. I am still learning to stand with shoulders back and apart, and not locking my knees. Screw your feet apart so arches come off the ground. Keep your head up and over the spine. Walk with your knees even with your middle toes. No frickin’ slouching, ever again.
Treatment Rating: Explicable and Helpful!
Although coccyx cushions MAY help with direct nerve pain, I strongly believe that a coccyx cutout pillow causes some kind of internal pelvic floor compensation and may make the problems worse. I used a coccyx cushion fairly religiously for the middle year of my symptoms, and started to feel better soon after I stopped using it.
You may want to investigate OT/PT “Sits” cushions, which are essentially two hard disks of foam that go under each side of your butt. That makes them more adjustable, you can move them around, and they are smaller – much more convenient to carry.
Strangely, something I discovered quite late in the process that makes a bigger difference than a cushion: Pants with less of a pronounced seam running over your tailbone. This aggravates the problem much less when you do have to sit. Unfortunately, this mostly includes styles of pants such as pajamas, sweatpants, or no pants at all. None of these options are very good for daily life if you rely on having pockets to remember things.
Sit/stand desks are definitely your friend.
Knee chairs did not work for me at all. (Kneeling did not either.)
Good posture and paying attention to where you balance your weight is hard, so definitely investigate something like Workrave that reminds you while you compute… especially so you don’t stand or sit in one position too long.
Lying in bed was sometimes better than sitting. So eventually I rigged up a monitor to hover above my pillow as I laid in bed, looking straight up at it while prone, and got a split keyboard (Ergodox EZ, represent!) so I could work and write while lying down. That helped some. Eventually when I got better, I can lie in bed sitting propped against pillows, and use a projector on the wall opposite as my screen.
By far the most frustrating thing about physical therapy is the fact that it is difficult to tell when you can STOP doing any of the exercises you are given.
To make things really work, you must stick to the exercises recommended. But thanks to how strangely coccydynia behaves in the body, certain things that work for some people may make your symptoms worse. This was definitely true for me.
Here I will go through a brief summary of each exercise that helped me, in the order of when it began helping me. In the hopes that it might help someone else.
But first, a few things that definitely did NOT help during the early phases, and may have made things worse.
These may all be doing more harm than good. Consider NOT doing these for some time, at the beginning of recovery, if you are a male whose symptoms are similar to what I’ve described.
I did not know to STOP doing core exercises that impacted my tailbone, so I was doing situps and probably making my problem worse for two years. it wasn’t until my second PT explicitly told me NO exercising outside what she recommended. that I stopped. The first PT had recommended the low squats and stairs. The squats always caused worse tailbone pain, but I just assumed you had to work through that to get the benefit. This is not always the case.
However, another exercise the first PT gave me was helpful all the way through the process. She had me do a glute/hip stretch that stretches the muscles that connect your pelvic floor to your sit bones and hips. Stand facing a chair. Keep one leg straight on the ground, put the other elevated on the chair. (At first you may want to try something even lower than a chair, like a curb.) Turn at the hips, away from the lifted leg, gently stretching the muscle bands that stretch laterally across your butt. Repeat on both sides until loose.
My second PT recommended water walking backwards, which is a surprisingly useful way to reset your pelvic floor and back muscles by basically confusing the crap out of them.
Then, in quick succession: Hip stretch lying on a table with legs hanging off. Pull one knee to chest, or as far as you can go, through the pinching, while leaving the other leg hanging. Bend the hanging leg for a further stretch.
Sitting down crosslegged, arms crossed and braced on knees. Curve spine, head down, rest 30 seconds. Rise up slowly. Or do 5 second butterfly stretch, and alternate with the inverse where you arch your back.
The PLOW. This stretch helped unlock my stiff-as-a-board thoracic spine. Sit right next to a wall, and then swivel your legs so you climb the wall and flip them over behind you, crunching your neck in an impossible-seeming posture with a chair or something behind you to hold the legs up. (I eventually started doing this for 5 minutes at a time. It was surprisingly useful to stretch my spine out.)
Low and high cobra stretch.
Deep squats, after all that has started to reset the pelvic floor.
Tumpline exercises. Tie a whole load of books in a bag to a theraband. Put it around your forehead, and bend your head forward. Now walk around looking like a complete idiot for 5 minutes. Work up from 10 pounds to 40 or more. This is another neck/thoracic spine stretch that was useful.
Vibration butterfly stretch.
Third PT started adding in some weird stuff. The thing that helped most was direct pressure (externally) on pelvic floor muscles. Lie down on something comfortable. Press on the ischial tuberosity with your leg up in the air. Sweep your calf and foot left and right while you do this to ensure not scraping the nerves too badly. Repeat on the other side. This helped me a lot, although it is VERY easy to overdo.
Head pressure point thing with 2 tennis balls tied together in a sock, pressed against the back of your head to encourage your spinal fluid flow or something. Odd, but feels kind of good. Not sure if this actually helped.
Side clamshell: lie down on your side, with a pillow under your head. Angle your legs so your knees are bent, but your head and spine are in a line with your pelvis and feet. Exhale, while tensing the bottom leg like you are about to lift it. Then lift the top leg while keeping the bottom leg tensed. Relax, inhale, and repeat. This works on the muscles at the inside of your thighs, above your knees especially.
Crossing over X: Knot a theraband and put it in the bottom of a closed door somewhere you can grab it while lying down. Lie down on your back with your head pointing towards the door, bring your knees up with your feet on the floor, and put a pillow between the knees. Grab the band, and while you exhale, do two things: tighten your knees around the pillow and swing your arm from above your head towards the opposite hip. Hold a few seconds, fully exhaling to engage the core. Repeat a few times on one side, then switch to the other.
Standing lunge X: Just as above, instead you put the theraband in the top of a door. Stand with your back to the door, holding the band in one hand outstretched above your head. Exhale, step forward into a high lunge with the opposite foot from the band hand (heh), and pull the band across your body towards the hip of the leg that is out. Try to ensure you are lunging straight out and your knee is directly above your heel, not forward of it.
Lunge walking: just what it sounds like. Try to be John Cleese. Step forward slowly but super far, into a high lunge. Hold that position. Keep your pelvis straight both left-right (by pulling it back on the forward leg side and forward on the back leg) and make sure it is not tilting forward or back. Now step, step, step. By the time you get to work, the neighborhood will be amused AND your legs and pelvic muscles will get a nice workout.
Today, three years on, I am happy to say that it feels like I am finally making progress in the last year or so. Slowly getting better, instead of worse.
If I sit on a couch, I still get an unpleasant squishy sensation that develops slowly over time.
But I can sit longer and longer.
Some days, I don’t even notice anything wrong with my tailbone at all.
It’s an amazing feeling, having your body work right. Even mostly right…