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I replied to a question 'Senate Bill 453 Pain patients Bill of Rights' was told the thread was old. I hope I'm reposting properly-Having a rough go of it at the moment. This is my current situation.

I have Ehlers-Danlos Syndrome, and have been maintained on 50mg Fentanyl for TEN years. The original scrip was written by an official pain clinic after failing more conservative treatments over a period of 15 years.

I was told to find a family physician near me that would write my scrip, which I did. Last Monday I went for a checkup/refill, and out of the blue was handed a paper with paragraphs put together from various sites: New Federal Law says take non-cancer chronic pain patients off narcotics, New Canadian studies show they aren't useful long-term.

I had a relatively normal life for ten years. I thought I had a good doctor/patient relationship. I asked him what 'long-term' meant; doesn't ten years qualify?

Came home, searched internet, made phonecalls. There is NO new law, NO new studies. Actually, there are studies showing the exact opposite. I feel betrayed, angry and anxious (which doesn't help my situation)

Doctor wrote scrip for 25mg patches, am to return Thursday for 12mg. After that, he will make a referral to a pain clinic for evaluation.I argue that it is backwards for a doctor who is not a pain specialist to think he can titrate my meds; that is the job of a pain clinic. I argued this with the office manager who still didn't get it.

I came home, went to State Medical Board site. After reviewing my right to adequate pain control "a doctor is required to continue current treatment until patient can be seen elsewhere" "a doctor who no longer wishes to treat a patient, must 'fire' the patient by U.S. mail, and provide 30 days of treatment in the interim". He didn't 'fire' me, as he says I can come to him for all other health concerns. Called Medical Board, talked to investigator, and was told I have a course of action against this doctor.

That is fine, but does not help me at the moment. The Pain Clinic (who btw wrote the original scrip ten years ago) is booked until end of Sept. I have called every doctor within 100 miles since Friday with no help in sight.

I began the 25mg Friday afternoon. Cannot sit long, fatigue, rebound pain at multiple sites, unable to use can opener, utensils, definitely can't drive. Trying to comply, because I have no choice.

Any and all suggestions welcome.


  • There is no federal law , that was a recommendation to ensure that patients had the right to be evaluated and treated for pain. States have different "patients bills of rights" and those vary from state to state. However, those bills of rights do not ensure that a patient has a right to obtain or be maintained on opiates. Doctors still have the discretion to use whatever medications they feel are best suited for their patient.
    10 years ago, primary doctors did manage chronic pain patients but due to the explosion of prescription opiate abuse, misuse and doctor shopping, most primary doctors won't manage chronic pain patients any longer and it sounds like your has made the decision to not continue to manage pain patients any longer. He is entitled to make that determination for his practice.
    Your best options are to ask your primary to contact a new pm office and see if he can send a referral and your records and see about getting you into this new doctor sooner , rather than later., or you can find a specialist who specializes iny our specfic condition and make an appointment to be seen and evaluated there.
    Once you do get into a new pm's office, he may or may not continue you on the fentanyl. No doctor has to continue a treatment plan started by another doctor.
  • SpineAZSpineAZ WiscPosts: 1,084
    edited 08/17/2014 - 1:12 PM
    These days, with all the problems with narcotics, primary care physicians aren't likely to manage pain long term. The key is a good Pain Management physician.

    I had a great PM doc in AZ. But we recently moved to WI, I did research and made appointments with 3 different PM doctors. The first one turned out to be good. In AZ I had to see PM weekly, here only every 10 wk.

    The theory is I have either Benign Joint Hypermobility Syndrome or mild Ehlers Danlos. In addition to 3 lumbar fusions and 3 cervical spine surgeries I've also had numerous hand, foot and knee surgeries (including knee replacement 3 yr ago at 45)
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
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