I'm not doing well--I'll just say that right off. I had a few great months with a new med combo, but maybe six weeks ago, it stopped being effective, and my headaches are as bad as they've ever been. I have a bunch of treatments etc. to report, but first I want to say that something in me has to change. I am fighting this so hard. I'm in a constant state of obsessive panic, and it's not helping at all.
Turns out chronic pain is its own disease. We get an injury, illness, and if the pain from that doesn't go away in a normal time frame, it becomes chronic, which is a pain signal/nervous problem now, not whatever initially caused it. It's not an emergency, it's not the body signalling disaster, and it's not going away anytime soon (a good friend with a much healthier attitude about her own pain taught me this).
But still, when the meds stopped being so effective, I freaked out. I began to see my seventh physical therapist, who told me that things would get worse before they got better, that I'd given up on PT too soon with the previous six. I've been seeing her for six weeks now. At this point, I hate it. It's not helping. Often it's flaring everything up worse, and I find that humiliating. I've had two super successful experiences with physical therapy, both for sudden conditions (knee and hip). I worked hard and I got better, and the pain was completely gone. That's always been my dream for my headaches, but it's not happening. In addition to lots of neck and mid-back strengthening exercises, I see a vestibular therapist there who treats me for inner ear imbalance (which I do not think is an element in my headaches at all, but whatever). These exercises involve a lot of eye things, laser headlamps on targets etc.
I appreciate the therapists' efforts. I know a patient with chronic pain has to be a huge pain in the ass. At my one-month check-in, I reported no improvement, and my therapist didn't didn't believe me. It's my fault. When I come in in the morning, I walk into the public area where people are doing all kinds of exercises and all the PT's are lined up on their laptops. My PT asks me how I'm doing, and I feel like I have to be cheerful, so I say I'm fine. And in the morning, I usually am. But chances are, the day before was a roller coaster of pain spikes with maybe three hours of relief total. I never talk about that. Physical therapy is such a positive place, and I don't want to be a drag, especially in front of all those people.
But at this one-month meeting, I broke down. I was furious that she was questioning me, and also just so frustrated that a month in, I saw no improvement. She replied that a month was very little time, and I should give it at least another month. So I'm doing it, and I'm hating it.
That prompted another full-court press of new doctors' appointment, as I do every six months or so. At this point, my regular spine doctor just prescribes, and the fancy spine doctor who I saw for my second failed rhyzotomy is out of the picture. He wanted me to come in when school is out and have another rhyzotomy further down my neck. There's no way in hell I'm doing that. I've come to believe that those procedures have ultimately left me in more pain, and it's sharper and more intense.
New neurologist has switched up my meds, and has me in three times for steroid infusions to lessen the inflammation around my neck joints. I did the first one Thursday (two hour IV), and that night took my first dose of Baclofen (a stronger muscle relaxer). Monday morning I had the worse stomach sickness that I can ever remember ( I very rarely get sick to my stomach). It's the first time ever that I've called out sick for anything headache-related, but I literally could not stop throwing up. The neurologist's office was closed for Good Friday, so my primary care doc called in an anti nausea, which saved me. He thinks it might have just been a stomach bug, but I've read that Baclofen can cause intense nausea So I'll call the neurologist Monday and try to figure out what happened, but I'm in no hurry to repeat either the IV or the Baclofen.
She did swap out my arthritis med meloxicam for Indocin, a stronger NSAID. There are certain headaches for which Indocin is the only cure, and it's weird that no one's ever tried it on me before. It's actually helping a good bit. It's not taking all the pain away, but it's lessened.
I also saw a rheumatologist last week to see if any of the is Lyme damage/increasingly degenerative arthritis. I liked her a lot. She said a major piece of this is that I have bad forward-neck posture and I have to fix it. So I've been trying to keep my head back, particularly in class. It helps if I lean against the wall. When I'm walking, I try to thrust my chest up, which makes me feel like some boastful, busty high school girl. She ordered a ton of blood work, and I see her in two months.
But the main thing I want to do is get my head on straight. I'm waiting on a referral for a cognitive behavioral therapist specializing in chronic pain. I just don't know how to manage this mentally. I'm doing a horrible job, in fact. I am alternately furious and filled with self-pity. I am completely self-absorbed, and veer on the brink of real depression much of the time. This isn't going to work for the long haul. I try to be objective about how fucking great my life is: fulfilling career, great marriage, sweet house, great family, darling dog etc. But when the pain's bad, it's all I can see. Much of the time I feel like my life is collapsing into itself, a sandy sinkhole.
Then there's this guy I've been reading, John Sarno. His theory is that chronic, untreatable pain is actually psychosomatic, the mind's way of distracting us from a great amount of anger or anxiety that we don't want to look at. The mind creates muscle tension, which results in this awful pain. He goes through all sorts of physical conditions, including bone spurs impinging nerves like I have, and points out that many people have these same conditions and don't have pain. The conditions are unremarkable. My spine doc always told me that back/neck pain was like that--some people with a ton of arthritis have no pain, while others with just a little have lots. I'm open minded to Sarno. Supposedly, when you "get" that this is true for you, the pain just disappears. 20/20 did an episode on it years ago. I've been paging around one of his books, but there are actual writing tasks I am supposed to do to get to the heart of it. And it's not like you have to actually get rid of the anger or anxiety. You just have to get clued in to the fact that your body is tricking you. I'm actually of two minds about this: when I do start CBT, I want to check this out. But it's also kind of insulting, like my pain isn't real, and I'm kind of a nut. Truthfully, I've never been that kind of person, feeling sick when I don't want to do something etc.
But I'm no longer the person I was. I think sometimes I idealize that person as super cheerful and always energetic, and maybe I was much of the time, but I'm not any more. I don't like who I've become at all.
