Kris - firstname.lastname@example.org
I've been trying to find out what is wrong with my tailbone for about a year. I've always suffered from back pain and severe headaches since I can remember all my adult years. This pain is rope-like spasms which generally travel all the way up one side of my body causing severe migraines, sinus pain, cramping in my neck, collar bone and jaw, in between my thumb and fore finger, my back, my calf, and to the arch of my foot. I've described this kind of pain to doctors for years with not so much as a raised eyebrow. This pain (sometimes I even have a fever and vomiting) also lasts for days and prevents me from going to work or doing anything. The pain persists and is not alleviated by any traditional method and goes away when it decides to.
In the past few years I started having tailbone pain which I thought was caused by sleeping on a crappy bed since we moved and had to leave our awesome old one behind. I don't have any problems sitting, but mostly laying down on my back and side. I really started getting worried that something more severe was wrong with me when the pain would bother me and throb during the day while I was standing up at work. I got a better bed (one that I could afford) and put egg crate foam on the top and eventually started sleeping with an inflatable neck roll under my butt cheeks so I could sleep on my back at all. I then thought maybe because I spent an hour a day commuting to work going down rural roads was the cause, so I got one of those wedge seats with the cut out at the tailbone to see if that would help. The pain was not alleviated by any of these things and just continued to get worse.
Upon feeling a "bump" that was excruciatingly painful when pushed down on, my doctor had me do a don-dye pelvic CT scan to rule out any kind of spinal damage or tumors. After me waiting over a month to find out the results, after calling and leaving numerous messages (20 or so calls made by me, my husband, and my mother!) to PLEASE let me know what the results were, I was finally called by an aide and told to sit on a donut cushion!!!! At that moment I resolved to find a different doctor that would possibly help me and to get a second opinion on the CT results.
My new doctor went over the results with me and explained that there was nothing unusual about the results but that I had underdeveloped tissue. Meaning I have a small butt! When he examined my tailbone he saw inflammation and redness and determined that I had an infection and initially seemed to think that I had a neural tube defect which was an incompletion of the tissue and skin to form around the spine thus leaving an opening to the coccyx itself. I've always had a weird kind of indention there but it has never caused me problems so I assumed it was just a normal thing that some people have since my parents and no doctors have commented on it till then. I've never been able to see it so I forget about that it's even there! Of course some boyfriends and my husband definitely noticed but I just told them it's always been that way and no I never had a tail removed or anything! Anyway he prescribed some antibiotics, hydrocodone, and naprosyn. The NSAIDs and narcotics only lessen the horrible muscle spasms and headaches.
After I took the course of antibiotics, which worked and lessened the excruciating pain, my doctor then referred me to a spinal neuro surgeon. That was a very disappointing waste of time. The neuro surgeon asked me: "not to be disrespectful or rude but why are you here?" He had me walk around the room for about 30 seconds, looked at my tailbone while I stood and then bent over and that was that. He said that I just had a "dimple" on my tailbone which was very common and told me the complicated name for (which I have since forgotten) and as for the pain, that would call for plastic surgery which would not be considered clinical but cosmetic so my insurance would unlikely cover such a procedure and that he doesn't do that kind of thing anyway! At this point I was ready to cry because I just wanted some solutions or new info, a referral to a pain management clinic, any kind of relief, besides more pills and no answers.
That's when I came to this website because I was fed up. After exploring your site and reading lots of the personal stories, I found your link to myofascial pain and said: "wow that's it! Nail on the head!". The next doctor visit (NOT neuro surgeon) I explained that my tailbone must be really 'loose' and pressing against groups of muscles causing the myofascial pain. He agreed to treat the pain as such and prescribed muscle relaxants and physical therapy. I was very excited at the new possibility of help in site. On my very first visit with the physical therapist she listened to my story and looked at my pelvic bones and determined that my pelvis was out of alignment. She said this is very common in women who have had children and sometimes it just doesn't go back into place on it's own. My son is almost 6! The funny thing is that my mom and I were looking at the x-rays and said that we thought that my pelvis looked out of whack and that the pictures of the cross section didn't match up. We just thought "what the hell do we know about reading x-rays!". I told my physical therapist about this and she said that she wasn't qualified to read an x-ray anyway so she couldn't determine this by the CT scan if I had brought it in to show her.
Soooo she aligned my pelvis and had me wear a special belt that holds the hips together in place and I started my electric treatment combined with heating pad laying down on my back and an exercise program at the gym there and a list to do at home. I immediately felt the shift of my back pain and the pressure was off my tailbone!!! I was able to sleep on my back without the butt pillow for the first time in forever. That was a week ago and since then I have learned that I have a hypermobile pelvis and that it will always be this way and I'll have to wear the belt and continue the exercises to keep the muscles strong. They've had to realign my pelvis every other visit and I have had subsequent tailbone pain occasionally since. Hopefully my bones will learn where they're supposed to be with the muscle strengthening. Most of the exercises are basically Pilates tube and band stretches for the upper body and hips and glutes, I do glute iso's (butt squeezes) laying down on my stomach and sitting down, some 'Thigh Masterish' reps, laying down board squats with a ball squeezed between my knees (can't do this at home since it's special gym equipment), then I lay on a compressed foam cylinder on my back with my knees up. This feels really good and aligns the spine.
I'm considering getting a compressed foam cylinder to lay on at home and an ergo seat that cradles the pelvis properly and keeps it where its supposed to be when sitting. I'm really tall so it's hard to sit properly in a regular chair made for a regular sized person. I'm so relieved to finally come to a point of solution even though it will always be 'management' and not a cure.
Hopefully this will help all of you who haven't had your pelvis looked at or even thought about by a professional. I hope you can convince them to check it out- or at least to get you a physical therapy prescription!