There is absolutely no doubt in my mind that there is a lot of misinformation out in the pain community. I hear it in phone calls, emails, and see it on social media posts. Last week I was speaking to a woman who helped start a new fb group. She wanted me and International Pain Foundation to help support their upcoming survey after telling me it was just like the one the iPain and Pain News Network did together a few months back, but different. She asked if she could cite our results in the meantime to help get a legislative bill blocked. She said much more. I let her know as long as she cites our survey she could use our results. She went on to tell me that opioids had been made illegal in multiple states for everyone except palliative care patients. Knowing that this was not true, I asked which states. She named Virginia and New York as two of the examples. There is no such law that makes opioids illegal for all but palliative care patients in any state. I record most of my phone calls and when this one was done, I couldn’t believe what I had heard her say so I went back and listened again and again. Where does this misinformation come from? Its not helping.

One thought on “Really?

  1. I think people are taking the new CDC Guidelines as law. I’ve had RSD for almost 20 years. Despite the additional medical ailments that came my way such as multiple kidney stones and chronic back pain, I counted myself lucky because my pain was treated well. I was able to get married, continue writing and traveling, and raise my little boy. He’s 7 now and my world just changed because of these guidelines.

    2 months ago, I went to my PM doctor for my monthly appointment. I was told that because of the CDC Guidelines, all of his patients were going to have to be tapered down. Despite the fact that I haven’t had to increase my opiods in 19 years, my meds were cut. Then, last month, I was handed a letter from my insurance company, stating that Chronic Pain shouldn’t be treated with opiods and benzodiazepines. The letter stated that there is NO protocol for that combination and that patients who ask for that combination are addicts.

    Now, I have RSD in my left foot & leg. 19 years ago, my doctor prescribed a muscle relaxant for my back, because limping was already taking its toll, and most importantly, for the inhuman and odd spasms I have in my RSD leg. It feels as if there is a snake in that leg, coiling and uncoiling, causing incredible distress. I never requested that medication, it is what I was prescribed. It worked.

    Now, the insurance company has threatened my physician. This is what the NP told me. He must take all patients off of benzodiazepines or they’ll no longer have him as a provider. If a patient tests for benzodiazepines, he will lose BC/BS of MI. The doctor apologized profusely to me, and he seemed so upset. He knows I’ve always been a good patient, submitting to urine tests whenever asked, never requesting stronger meds or more meds. For 5 years, I’ve been an easy patient. Now, in the span of two months, I’ve gone from living my life with as much gusto as I can garner, to a sad woman, clinging to the walls in order to walk. In May, I was thrilled to go to Greece, as my number one bucket list item. Now, I’m just so glad that I went while I could still walk.

    I thought tapering opiods was very difficult, but now I’m dealing with tapering the muscle relaxant. In 10 days, I haven’t slept more than 4 hours. The first 4 days I didn’t sleep at all. I blacked out at my son’s Open House at school. The doctor has said that he and other PM docs in the area were working on the CDC Guideline fallout. Then, this letter arrived. And another one from Humana, I’m told.

    Forgive me for getting off-topic. My point was to say that CP patients everywhere are confused about the CDC Guidelines. On one message board, I’ve heard of doctors reacting to the guidelines as if it were a law. God only knows what they’re telling their patients. As CP patients, we need to be smart. We need to check our state’s laws and know what our insurance companies are doing.

    I’m more involved than ever. I’m only sorry it took giving up a large portion of my life to see what was going on.

    Keep up the fantastic work!

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