Back to the doc.

After an unsuccessful week of spinal taps and blood patches during which I could not receive anything beyond 800 mg ibuprofen for pain due to my recent withdrawal, I'm sort of back in the swing of things.

I had a rather lovely appointment with my pain management doc yesterday and, for once, I'm not being sarcastic.

He actually listened while we talked openly about current treatments, their side effects, which side effects were acceptable for the time being but unacceptable in the long term (like my loss of sex drive - with the shape I'm in, sex hasn't really been on the table for some months, much to my fiancee's dismay), and where we were going with this. He even got excited about the pain management aspects of yoga that I told him about and took some notes - he seems to be planning to contact my yoga instructor for more information. I'll take that as a win for the day.

I told him that, eventually, I don't want to be on any meds at all. And he told me he supports that 100%.

Of course, there is the meantime.

The meantime is that I'm still on 150 mg of Lyrica twice per day, 60 mg of Cymbalta per day, 2 to 4 mg of Zanaflex per day, and I've now added about 375 mg of Ultracet to the mix to manage momentary pain spikes. It's somewhat amusing to me that I think I've taken every medication that online pharmacies try to pitch via spam comments on blog entries.

The net result is less pain relief than I received from vicoprofen but, supposedly, without habituation. Everyone says I sound like I'm doing better, but I don't FEEL like I'm doing better. I feel more lucid - perhaps people mistake a lack of slurred speech for improvement in my condition - but there's a substantial difference between lucidity and improvement. Just because I can think and speak more clearly doesn't mean I'm in less pain or in better shape. In fact, the opposite is true.

Where vicoprofen allowed me to spend an hour or two at the computer to check news and read my normal bookmark list of blogs, I can now spend about 15 to 30 minutes. The same goes for things like sitting up to eat. My pain management doc's response was to use cognitive behavioral therapy. Do what you can, then go rest. If you can only drive for two hours but you have to go to Boston, drive for two hours, stop and then start the drive again. You'll be in the same pain when you get there as you are at home. It's good advice. The catch is that riding across town hurts. Sitting up for any extended period of time hurts. The solution I have at my disposal now is bed rest for 2 to 3 times the length of time I was sitting up. That really doesn't allow me to, you know, WORK.

Right now, I'm pinning my hopes on yoga and bio-feedback therapy, maybe some self-hypnosis, to manage the pain while we work toward a diagnosis. The yoga helps tremendously for flexibility and temporary pain relief. As a result of the yoga, my physical therapist and I switched up PT to focus more on stretching and flexibility with some trigger point activation massage at the end which also turned out to offer temporary pain relief.

Perhaps the best thing about how the PT and yoga routines have helped is that they do not require any sort of mobility - the PT is done on a bench with an athletic trainer stretching my legs for me. The yoga, when I'm in shape to do, is partly done standing up, but is mostly done laying down. The last time my instructor came over, I laid on my back for the first 20 to 30 minutes and she worked my legs and arms through the routine to get me limber enough to stand up. All of these things can be done, even to a limited extent, by someone who is even bed-ridden because of pain and they offer at least a temporary endorphin release and - for me anyway - feeling like I'm an agent in my own treatment, like I am not subject to the latest miracle drug spawned by Big Pharma.

I'm not sure how many patients need to feel that way, but recovery is NOT merely a matter of allowing doctors to do things to you. At some point, you have to stand up for yourself and get involved. After all, it is your body and all those medications do have side effects and some of those side effects can be permanently harmful if not deadly. Call me crazy, but I'll take yoga and breathing exercises over that any day.

And who knows? Perhaps yesterday's discussion will spark a brand new avenue of treatment options for my pain management doctor's patients. Perhaps they'll find that, regardless of their mobility, they can participate in yoga to some degree and find some amount of pain relief in it. Perhaps that in turn will lead to my doctor publishing a journal article with some amount of clinical and anecdotal evidence so that this idea can spread and benefit others. That's one of the good things about working with a doctor who is also a researcher and constantly looking for new advances - they tend to be a little more open about things.

So basically, I'm a little worse off that I was when I started this whole thing. My back is really starting to hurt now, so I'm back to bed for a couple of hours. Thank heavens for DVRs and DVD box sets.

Stumble It!