Elimination diet helped, but solved by removing contraceptive implant

Maryland lawyer, USA

Posted 2014-04-06

In 2004, my coccyx was somehow damaged while I was in labor with my son. Sitting down was painful. Sitting in a car was especially uncomfortable. A cushion with a U-shaped cutout was very helpful in reducing pain when I had to sit. As the mom of a newborn, I was not called on to travel much of anywhere, and within a couple of months the pain vanished and did not come back.

In November of 2013, I again began to experience pain while sitting at my keyboard typing. I usually sat on an exercise ball, and had allowed it to become somewhat deflated and softer than usual. At first, the pain was intermittent. After a time, the pain became chronic and more severe. Sitting in a car was especially painful. As a passenger, I could control the pain by sitting tipped to one side, but that isn't an option while driving. Wearing snug clothing such as jeans was also painful. After a while, I could not sit at all; luckily my husband has a standing desk that I can use to work. I now wear only skirts (since I am the sort of female who only owns one skirt, this has greatly simplified getting dressed).

Things that didn't work: At first, I kept to my usual exercise routine (running, squats, lunges and light free-weights). Either running or my running tights increased my discomfort, so I decided to experiment with less exercise. I reduced my activity to short walks, then to nothing. The pain was neither worse nor better; I lost muscle tone.

I have tried three different cushions-with-tailbone-cutouts. The first two didn't help much. The third, a stiff, thick cushion, rather hard, is the best. With this cushion I can tolerate driving (barely). For longer drives, I put an ice pack into the cutout, and this seems to help. For the most part, I try to avoid driving as much as possible.

For a week I tried ice during the day, ibuprofen at night, on the theory that inflammation might be interfering with some kind of healing. This reduced the pain somewhat, but it would always come back.

My GP was not much help.

What is working so far: I read a lot and ranked success stories in order of how extreme the remedy is, as follows: Normal exercise (walking, swimming) & meditation; special exercises and stretches (including a thing called "somatics"); acupuncture; deep tissue massage & manipulation (sometimes harmful); injections (sometimes harmful); surgery (sometimes harmful). The plan was to start at the front of the list and work my way through it.

To my astonishment, walking an hour a day is working well! Short slow walks are absolutely not enough. It must be an hour. The first day, I was mostly pain free while walking and for about an hour afterwards. The second day, the pain stayed away for the rest of the day, until I got into my car without the cushion, which brought it back. The third day, the car ride was less painful (I didn't forget the cushion) and the pain was nearly gone at the end of the day. As a precaution, I have noticed that while wearing my slippers I tend to tense up the muscles in my legs to keep them from falling off; I'm going to discontinue wearing those on the theory that this can't be helping.

This suggests that my problem was muscular, which is interesting because it didn't *feel* like a muscle issue or a cramp.

I am still not able to sit or to wear trousers, but as long as I can walk, stand, and wear a skirt the pain is reduced enough that it is not constantly affecting my mood and ability to focus.

I hope this is helpful to some of my fellow sufferers.

Update 2015-02-22

This episode of tailbone pain began in fall of 2013, triggered by sitting on an exercise ball that had not been pumped up properly. This was not a severe or traumatic injury, but it would not heal. My life began to shut down... I could not bend or lift without pain; I gave up my sculpture class, restricted my working hours, and stopped wearing pants. I had to avoid travel, even driving, whenever possible. I could not sit in a chair. After 3 pm, my day was basically over... I was in too much pain to think clearly.

My GP told me that my tailbone might heal on its own, given 8 weeks. Nope. Sitting on a cushion with a coccyx cutout did not help (tried several). Using a standing desk did not help. My own home-made exercise program, mostly walking, brought only temporary partial relief. A visit to a sports medicine doctor was a dead end; he referred me to an orthopedist. This chap gave me an anti-inflammatory lotion with appalling side effects, which provided only temporary relief. Another dead end. My ob-gyn tried six weeks of prescription strength ibuprofen... while the temporary partial relief was welcome, no real healing took place. He referred me to a pain center... I didn't care for the idea of spending the rest of my life on painkillers, so I did not try this.

I tried an osteopath. I'd give this chap a solid B. He seemed to have a better understanding of the anatomy involved than any of the other doctors. He said it was actually my sacrum, not the coccyx, that was the problem (clues to this included the failure of the standing desk and the cushions to provide much relief). The stretches he recommended gave me about 40% relief from the pain for a few days afterwards. At first, I was hopeful that this would result in real healing once and for all. But it didn't. The pain kept coming back. The osteopath noticed that I also seemed to have some inflammation and stiffness in my shoulders and knees, though they did not hurt other than the occasional twinge from old injuries. This turns out to be an important clue, but at the time, I thought it was unrelated. He suggested various reasons that I might have more inflammation than usual... I was skeptical of most of these theories.

Then in December of 2014 a kind relation returned from Europe bearing gifts of fancy chocolate, the sort that someone has made lovingly on a marble slab using only the best whatever. I am partial to chocolate, so I had myself a little chocolate feast. Within a couple of hours, my pain levels went through the roof. I felt like someone had smashed my tailbone with a mallet. I had to go to bed for a day and a half. Where I started to wonder... maybe I had some sort of reaction to the chocolate? Was it possible that injuries that refuse to heal and/or persistent pain could be a food reaction? What if I was reacting not only to chocolate (which I rarely eat) but also to some other thing that I ate more regularly?

I looked it up. It turns out that there is some research using elimination diets to treat persistent joint pain, such as rheumatoid arthritis. (In case you have not been hanging out in "food sensitivity" circles, these diets first eliminate all foods likely to cause reactions in most people; reactive foods are then reintroduced slowly, one by one, to see which one if any causes a reaction). While I did not have a diagnosis of RA, some of the case histories sounded sort of familiar. I always thought that if one had RA, one felt sore all over, but apparently for some people, the pain will settle in one place, such as hands, knees, feet, or at the site of an injury. Sadly, none of my treating physicians seems to have been aware of this.

Having absolutely nothing to lose, I decided to try one of the elimination diets. The rule of thumb is that if one does not notice improvement after a week on the elimination diet, then the problem is probably *not* caused by diet, so if eating only boring things wasn't going to work, I would know soon enough. I didn't fancy either the water-only four-day fast or the two-week vegetable broth only diet (ugh) in some of the studies. So I settled on an elimination diet that allows one to eat solid food, though the list of "permitted" foods to start with is short. Within three days of starting the diet, my pain was reduced by 40%. By the end of the week it was down 80%, and I got most of my life back. I've now been on the diet for about three months, slowly, one item at a time, introducing new foods (this week it was buckwheat. "Tailbone, meet Buckwheat. Buckwheat, this is Tailbone. So, are you two going to get along?"). My pain is down to about 95% of what it once was. It is possible that the inflammation has done some sort of permanent damage, and I will never be back to 100%... but this is good enough. (In case anyone is curious, the elimination diet I chose is a vegetarian diet, Dr. McDougall's aptly named "Diet for the Desperate" (described in detail on his web site www.drmcdougall.com, which is a whole subculture unto itself)).

To prevent the pain from coming back, I'll probably be on some version of this diet for the rest of my life, which is a big change. But I am so glad to be free of the pain that it does not seem that hard to stick to. There have been some other benefits... I've lost the extra ten pounds I've been trying to get rid of forever, my sense of smell has come back, and my hair is thicker and shinier and doesn't fall out so easily. But I will miss chocolate. Maybe I can have one piece, once a year, or something like that.

I wish others the best of luck in their battles with pain, confusion, and delay.

Update 2017-12-17

My tailbone pain began in 2013. Originally, I thought that sitting on an exercise ball to type had irritated my tailbone. I now suspect that this theory was wrong, and the real story is that the tailbone pain began without any injury at all.

I went to many doctors without success. Finally, I managed to reduce the pain significantly by observing a strict anti-inflammatory diet (originally developed to treat rheumatoid arthritis and other auto-immune diseases). The diet worked well for me at first. However, over time, the diet seemed to become less effective. This was odd, because usually patients on this diet find that it becomes more effective over time. Something was still wrong. More doctors. No answers.

By sheer coincidence, as I was lawyering one day, I happened across an FDA proceeding concerning the contraceptive implant (similar to an IUD) that I was using. I thought, "Oh, huh, I wonder what's up?" I'd had the implant installed in 2007, and hadn't thought about it since. Turns out some women had been having problems with these implants, particularly if they are sensitive to metal. Hmmm. I am sensitive to metal; I investigated further. Symptoms of those reacting to the implant include (but are not limited to) autoimmune disease, chronic pain, particularly in the pelvic joints, and in some cases, chronic tailbone pain.

My contraceptive implant was surgically removed in the spring of 2017, along with a chunk of my innards. The week after, the pain in my elbows and knees receded, my chronic fatigue ended, other symptoms began to fade away, and over the next few months, my tailbone healed. Today, my tailbone pain is gone.

So, for other patients, something to check... do you have something (contraceptive device? surgical mesh or staples? an artificial hip?) implanted in your body that you might be reacting to? These reactions can include tailbone pain; this is something that doctors might not think of (or be willing to admit to).

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