Chronic myofascial pain, also known as Myofascial Pain Syndrome (they keep changing the name), is basically a diagnosis of exclusion. You go to every doctor possible in the dictionary of doctors, wait for all of them to give you every test imaginable (and some not so imaginable), and then weep endlessly when they tell you nothing is wrong with you. Because things hurt. And the doctors don’t know what the hell to tell you, so they give you a name to go with your symptoms. But the name is a generic term that means nothing to the medical community…and is nothing and everything to you. Because you have nothing else.
You’re thinking, hey, I got stuff that hurts, too.
I’m sure you do. But this kind of hurt is different. It’s something deep inside your muscles and it’s like someone is strangling the muscle. Technically, the pain comes from the fascia that surrounds the muscle. It becomes stiff and hard and does strangle the muscle it is sheathing. It feels achy and hard and hot and painful and deep and unending. It doesn’t respond to painkillers, and it doesn’t go away. It doesn’t ease up. Stretching makes it worse. Moving is difficult because the muscles feel short and tight and there’s no give. Muscles should be soft and pliant, move easily, and support the rest of your body. Yeah, I don’t have that. Forget exercising because it is like you are tearing the muscle into a million pieces, and then it takes weeks or months to repair enough to use the muscle again. If this is happening in your leg muscles, it could mean not being able to walk for days or weeks or longer.
For me specifically, my issues started mainly with my arms, my elbows, my shoulders, my neck, the ribs under my left breast, and my back. The arms, shoulders and neck were the worst. It came to a point where I couldn’t pick things up heavier than a dinner plate because my arms hurt so much. Some short time later, my fingers and hands became affected. Years later, my knees started giving me trouble–at some point leaving me walking on crutches because putting weight on either knee was impossible. Sometime in between those two points, my hips offered up their own special brand of pain, mostly at night which made sleeping an uncomfortable experience.
But let’s start at the top…my neck. Sometimes it felt like it couldn’t hold my head up. Especially if I’d spent the day before reading a book. Because reading a book meant holding my neck in one position for a period of time. That strained the muscles back there, which left me hardly able to move my neck or hold my head upright. Forget writing, which required me to look down at what I was writing for any period of time, because I ended up with the same issue. Bending my arm for any period of time–like to hold a book or a pen–left those muscles around my elbow squeezed and in pain. It was like they locked in that position and straightening felt nearly unthinkable. My shoulders always ached, so sitting or moving or lifting things hurt.
Cut to the core, any movement hurt. Not moving hurt. And the doctors had no clue what the hell to do with me or for me. At the time, fibromyalgia was up-and-coming, still very much unknown. Myofascial Pain Syndrome was pretty much unheard of. I was lucky enough to finally stumble on a doctor who specialized in Fibro and Chronic Fatigue Syndrome. We thought–having read the minimal amounts of information online–that Fibro was the closest explanation to what I was feeling. The major exception? Fibro is whole body, and my pain was very consistently on the upper half of my body. Fibro was balanced all over the body–both sides equally–and my pain was consistently worse on my left side. The neurologist I saw agreed with me, it wasn’t Fibro…and he was the one who gave me a name.
But as I said earlier, the diagnosis was of exclusion. Nothing else fit, despite test after test and doctor after doctor. So the neurologist put me on B12 and iron supplements (both of which were desperately low) and prescribed physical therapy for me. I was in therapy for eight months, all of which was manual (massage) therapy, because anything else would have been devastating for my muscles.
That was over twelve years ago. The myofascial pain syndrome has migrated, changed somewhat, varied in intensity, but has never left. It follows me everywhere, it reminds me of who I am every day. I’ve been in and out of physical therapy, I’ve spent months living on a heating pad, I’ve been on and off supplements, and I’ve been in and out of more doctor’s offices. When my knees went bad, I wasn’t sure it was related. I went to orthopedic doctors and I had MRIs, but they never found anything. I think it was sparked off an adverse reaction to anti-biotics, but I can’t be sure. Either way, I’m fairly confident at this point it is the myofascial pain syndrome spreading and changing. It sucks.
I can tell you quite clearly, it sucks.
No one can see the pain I carry with me every day. Most people don’t understand why I limp, or can’t pick up a grocery bag, or can’t put dishes away in an upper cabinet. They don’t understand why I can’t read for an hour, or write for an hour, or sit in one position for an hour. They don’t understand why I need to be in physical therapy, or why I get depressed over my health. They don’t see an illness, so they don’t understand. They don’t know the term “myofascial pain syndrome” so they don’t know what it’s like to live it. They don’t understand a hurt that goes so deep and won’t go away no matter what I do. Even going to physical therapy for three months, two times a week, did not resolve the pain in my shoulder. It made it feel better for a couple of weeks, but now that I’ve been out of PT for a month, I’m feeling the same pain all over again…like it never got better.
There’s no resolving this pain, there is just the hope that something I do will make it less intense for any period of time. Even an hour is welcome. Even ten minutes is welcome.
You can read about CMP (or MPS) online. There is a lot more information available now than when I was diagnosed. You can read about trigger points and myofascial release, and better description of symptoms, I’m sure. I’ve learned what I need to know to survive living with this in the way that I can. My experience is long, but your mileage may vary.
If you have questions, please leave them in the comments section for me. I’m more than willing to share my knowledge and experience, such as it is.