I read recently that three-quarters of people with fibromyalgia also suffer from TMJ disorder, or TMD. Wikipedia’s simple definition of TMD is: “Temporomandibular joint disorder, TMJD (in the medical literature TMD), or TMJ syndrome, is an umbrella term covering acute or chronic pain, especially in the muscles of mastication and/or inflammation of the temporomandibular joint, which connects the mandible to the skull. he disorder and resultant dysfunction can result in significant pain, which is the most common TMD symptom, combined with impairment of function.” I believe that TMD is the underlying chronic health problem that kicked me into full-blown fibromyalgia. I am likely genetically predisposed to it, as many of us are, but the TMD led to the fibromyalgia, I think. The pain wasn’t always all over my body. It used to be tied to my jaw, neck and head mostly.
Many of us suffer from TMD, but I think that my story of how I got it is rather unique. I was born with an asymmetry of the jaw. Most of us are, mine was just worst than most. When I was 15, I was at the beach with my family. Those were the days where a good tan was very important to a teenage girl, so I spent the week working on my tan. The last full day we had at the beach, I laid out in the sun too long and didn’t drink enough fluids. The only thing I had that day was a Dr. Pepper. I suddenly felt light-headed and nauseous, so I headed back to our room. I made it to the shower area where you could hose off the sand before going into the resort. I had to stop and lean against the fence because I was so light-headed. The next thing I remember is waking up on the ground with an old man leaning over me, lightly smacking my cheeks to wake me up, asking me “Are you okay, little lady?” I had passed out from heat stroke and hit a fence post on my way down to the ground. I had whiplash and problems with my jaw from the impact. My parents took me to an orthodontist who worked with TMD patients, but he wasn’t very good. Back then, they didn’t know as much about TMD as they do now, so I didn’t get the proper treatment. He made me a splint, which helped, but I just had to eat soft foods and let myself heal. After months of pain, my parents took me to a physical therapist, and that made a difference. I started to get better, but my jaw was never right again. I lived on french fries, jello, and pudding that summer. Being 15 and eating a soft food diet for a whole summer was challenging and not fun. I had to give up chewing bubble gum too, which I loved. I wore my splint every night until college, and the splint stabilized my jaw for a while. The pain mostly went away. My jaw was easily aggravated and as I’d always suffered from migraines, those just became more frequent.
In college, I guess I finished growing, and the splint didn’t work anymore. One day, I had stabbing pain in my right leg. I hadn’t hurt myself so I had no idea what that pain was. I went to multiple doctors who just threw different narcotic medicines at me. I couldn’t take most of them and still go to class, so I just dealt with the pain. I started seeing my acupuncturist three times a week and that helped but wasn’t a cure. I tried seeing a chiropractor. That helped for a while, but wasn’t a long-term fix. The pain spread from my leg to both legs, my hips, and back and then my neck. One doctor told me my right leg was shorter than the other and that was causing the pain. He had me wear a lift for a while. That didn’t help. (I found at later that my legs are the same length, my right hip was so tight from all my alignment issues that the muscles had actually pulled the bone closer to the hip and made it seem as though one leg was shorter than the other.)
It took me I don’t know how many doctors and nearly 2 years of pain for a doctor to figure out that my pain was tied to my jaw. That my jaw was out of alignment which was throwing my neck and back out of alignment, which messed up my hips, which caused the leg pain. So I saw another orthodontist who really does specialize in TMD. He made me knew retainers, called ALFS, that look like paper clips shaped to fit your teeth. What was nice about them is they helped stabilize my jaw, but no one could see I was wearing them. After 6 months or so, the pain grew worse again and he told me the ALFS weren’t working fast enough and I needed braces. So I got braces for the second time in my life. I was in those for 2 years. My orthodontist has my jaw nearly symmetrical now. When I first saw him, my jaw would open on a 45 degree angle. My mouth wouldn’t open straight, it pulled to the left very badly. My jaw pain is better, but full-blown fibromyalgia has taken over and I hurt everywhere, all day, every day.
At least I know what’s wrong with me now. There’s comfort in that. For years I was going from one doctor’s theory to another before they finally figured out it was my jaw causing the problems and then that the pain had become widespread enough that they put me in the fibromyalgia category. My jaw, headaches, and even GI problems all lined up under symptoms of fibromyalgia. For the first time, I had a diagnosis that made sense. Fibromyalgia sucks and I hate it, but at least I know what’s wrong with me. Not knowing and being tested for all these other horrible diseases and wondering which one you have is worse than knowing you have fibro. At least now I know the right doctors to see and have assembled a team of great doctors to help me. My rheumatologist coordinates with my GP on all my meds and treatment for fibro. My osteopath coordinates with my orthodontist to work on the mechanical side effects of my TMD and other alignment issues that help feed the pain. I trust them, which I can’t say for many of the other doctors I saw who weren’t able to help me.
This has turned into a longer story than I thought it would. I thought I’d share more of my story and the symptoms I suffer from though. I hope that maybe my story will give insight to someone else.