• It sounds like your docs are already working you up for this, but you’ve obviously get a MAJOR problem with calcium metabolism. If you live close to a major university health center with an adult geneticist (these are rare–most geneticists focus on pediatric diseases), you need to get an appointment with them pronto.

  • Knowing my limits is one of my biggest problems. When I’m feeling good, I want to work and then go out and have dinner and hang out with friends. I wake up the next morning feeling like three people went at me with baseball bats during the night. I think I should be limiting myself to 4 hours a day of work, but that’s obviously really hard to do. I can get SOME work done on the couch with my laptop, but there’s a lot of things that you just need to be at work for.

  • I’ve seen this from both sides, as both a physician and a patient. On the physician side, I’m trained as a pediatrician and a geneticist. All of my work now is in genetics, so I never prescribe pain meds anymore (I leave that to the other specialists.), but when I worked with kids with cancer, I would occasionally hear, from both colleagues and parents, “We don’t want the child to get addicted to pain meds.” My response was always, “We can worry about that AFTER we’ve cured the cancer. The child is in obvious pain, and I’d rather deal with a child with cancer who is addicted to pain killers than one who’s in chronic pain.”

    On the patient side, I’ve had chronic back pain for years, with an acute “blowout” this June at a conference. After an ambulance ride to the ER and a LOT of IV pain meds, I was able to get back home to Houston, where an MRI showed that the lumbar L4/L5 disk was smashed. As a physician, I was ecstatic, because I knew that no one could argue with that MRI. As a patient, I knew that this would ultimately require surgery. My orthopedist prescribed Alleve and PT. Like you, I can work with pain in the 2-4 range, though it’s hard for me to really focus. If the pain hits 5, I go home and go to sleep on the couch. Like you, I was “hoarding” a bottle of Valium and hydrocodone from the ER visit and then from my PMD, who wrote the prescription when I got home before referring me to ortho. This went on for 3 months, before my boss, of all people, said that I needed to go see his neurosurgeon. I had a microdiskectomy the next week, which led to a dramatic change in the quality and location of the pain, but not the LEVEL of the pain. My neurosurgeon said that my disk was the worst he’d seen in someone my age (40 yo) in his 10,000 surgeries. I went home on Valium and Percocet, and was back in his office within 24 hours, saying that the Percocet was doing nothing for the pain (Tylenol #3 has almost no effect on me, either.). He wrote me a new prescription for hydrocodone, which he kept me on for 3 months. Then he wanted to switch to Tylenol #3, because–he was very open about this–hydrocodone requires a “triplicate”, and Tylenol #3 does not. I basically took a mixture of what was left of my hydrocodone and Tylenol #3 until the hydrocodone ran out, then switched to Tylenol #3, and got a severe flare-up in pain, as I expected. I was ultimately referred to a pain specialist, who put me back on hydrocodone. (I was pretty blunt with her. I told her, “I know you probably see a lot of patients who are drug-seeking, and I want do be very clear about this: I AM drug-seeking. I want hydrocodone. I have a smashed disk, you can see it on the MRI, and Tylenol #3 is less effective than M & Ms.) My personal policy is that I don’t take Valium or hydrocodone if I’m going to drive, work, or send work-related e-mails. (I’ve found that READING work-related e-mails while on Valium seems to make my job much less stressful.) More than 4 hours of work pretty much does me in, but I have a fairly understanding boss, since we have the same neurosurgeon, and I’ve given my neurosurgeon permission to discuss my case with him. (My boss had a near-miraculous response to his surgery, and I think he’s a bit guilty about the fact that mine didn’t go well. As a physician, I can tell you that I’m not really bothered by this at all–sometimes the situation is worse than it looks on imaging, and my case is obviously one of those.)

    So where to we go from here? Well, it looks like they want to wait at least 6 months from the initial surgery (3 months ago) before they’ll consider another surgery, so I’m pretty much stuck working half-days for at least that much time. I’m doing PT 4 times a week, which is good for maintaining my back musculature, but it’s not like it’s going to fix a smashed lumbar disk, so I’m looking at half-days at work for the next 3 months, plus a likely second surgery. My boss has suspended all of my clinical duties, so I’m now focused on lab work (I used to work with patients one day a week, and in a lab 4 days a week.), but it’s hard to do much in a lab in 4 hours a day with only one co-worker.

    The one really good thing that’s come out of this is that I’ve had chronic insomnia since being a teenager, and I have a fantastic shrink. Paxil keeps the depression at bay (I’m sure I would’ve committed suicide by now without it.), and my shrink has tried me on several anti-insomnia meds before finally hitting the “sweet spot” Rozerem did nothing, Ambien worked but not very well, and we’ve finally settled on Seroquel, which knocks me out for a good 8 hours. If you’re in chronic pain and having trouble sleeping, I’d strongly suggest working with someone on an anti-insomnia med, too. Your pain should be at its lowest at bedtime (when the side effects of the pain killers really don’t matter as much), and if you’re STILL having trouble sleeping, then you probably need to be on something else, too, to help you sleep.