Monday, February 11, 2008

I'm not looking for drugs, really!

I'm not a good patient. I know this. I have an insanely rare, genetic, congential disorder. It's not curable. It brings along a whole host of secondary conditions, most of them degenerative. I have chronic pain. I'm young enough that joint replacement surgery is a bad idea, I've got enough problems that surgery is it's own problem, and yet my joints are mostly destroyed. But still, finding a doctor shouldn't be this hard.

I stopped seeing doctors regularly about a year and a half ago. I was frustrated, depressed, and they weren't helping, so I just stopped going. Then I got pregnant, and I went to my ob/gyn for that, but wasn't doing anything for my own problems. But now I'm finding that I won't be able to continue to function if I don't take care of my own health, so I'm in the market for a doctor who can help me manage my joint issues, my chronic pain, and whatever else happens to pop up.

I'm finding though that doctors are falling into one of three camps. The first won't see me because I'm too complicated. The second only wants to prescribe the drug du jour, regardless of it's efficacy. The third kind assumes I'm just a drug seeker because I'm in pain and would like to manage that pain.

I don't have unrealistic expectations. I don't expect to be pain free. I haven't been pain free since I was 12, I wouldn't know what it felt like. But I don't think I fit the profile of a drug seeker - I've not taken any prescription drugs in over a year, I voluntarily quit methadone and oxycontin because of the side effects, I've never gone doctor shopping to get more drugs, etc.

Beyond all that, though, my experience is that people who will decide that I'm drug-seeking before ever meeting me demonstrate a worse problem. In my last visit, the doctor informs me the minute I walk in that she doesn't believe in drugs for pain. I'm fine with that, if she can offer me non-pharmacological relief, that's fantastic. She repeats this several times throughout the visit. At the end of it...she writes me out two prescriptions. One is for an extremely mild narcotic, one is for a drug that won't address my real problem and is a drug I've already taken before and had a bad reaction to (and I discussed this with her!) So for all her self-congratulating speech on not using drugs for pain, her only solution is for drugs that won't do anything for me. Great. I paid $495 for that visit. I didn't even bother to fill the prescriptions.

I have an appointment with another doctor on the 13th. Maybe eventually I'll find one. In the meantime, I'll take those prescription forms to the new offices, invite them to call the prescribing doctor, and hope they'll believe that I'm not looking for more pills. I just want help.


  1. Hi - I found you through WhiteCoat Rants blog.

    I am sorry that you have been enduring pain for so long. You must be a strong person for being able to cope as well as you have.

    I look forward to reading your posts and maybe I can learn something about getting out of debt here. Of course going back to work will do it and then I figure I will be working for free for about a year depending upon how aggressive I get in pursuing hours.

    I wish you well in your search for a skilled and compassionate doctor. They are out there. And sometimes they just need to get to know you and then once you have established a bond they will be proactive for you. Just a shame that it has too be so hard sometimes.

    There ARE good ones out there. :)

  2. I feel for you on this post. Sadly, it isn't the good doctors' faults. It's the abusers that have caused this situation between patient and doctor. Their abuse of the system has caused a them and us mentality. It isn't right.No doctor wants to feel the fool. I agree with the poster above. A doctor needs to get to know who you are to best help you. There are good ones out there. Please don't give up. Even the post I found, along with you...I feel strongly this is a good and decent physician caught in the fray of what his experiences have taught him. He still acted prudently - under the circumstances. It is hard to understand their plight, when you are the patient suffering for real. I do wish you the best of luck finding a good physician, and I hope relief from what you suffer daily.

  3. Good luck in finding a doc- I will be praying for you.

  4. I also found your blog from Whitecoat's. My children are also in the same boat. As they have a connective tissue disorder, and there is not a single doctor for all their problems. Good luck in your search for pain relief, there are some resources out there, let me know if you need help finding them:)

  5. I'm sorry for what you're enduring and I hope you find a good doctor soon.I look forward to reading your blog entries(I found you through Whitecoat rants).
    Best of luck!

  6. Hello,

    I am intrigued by your situation and insights. I find your situation to be sad but I can't wait to read about how you conquer all these challenges. I believe you will.

    I am a first year medical student and I feel I can learn a lot by following you so I will be checking up! Best wishes and luck.