chronic pain mgmt

  1. I'm a retired critical care RN. Retired due to a rare bone disease, fibrous dysplasia. At this point in time there is no cure for FD which stems from a GSA-protein mutation.
    The bone & muscle pain etiology: bone expands due to abnormal development-the bone marrow is replaced with a gritty fibrous tissue containing sharp needle-like fragments of bone instead of the normal soft organic material; uneven bone growth, bone cysts and tumors; brittle bones; micro-fractures, stress fx's, etc...which do not always show up on x-rays; scoliosis; shepherds crook; muscle atrophy; & when weight bearing bones are affected, like mine are, the muscles have to work harder to support the frame & muscles spasm.
    Currently what has helped is a combination of regular exercises, micro-currents & electrical stimulation utilizing acupoints, calcium-mg++-Vit.D-fosamax, massage, oxycontin c oxycodeine for breakthrough pain. However, these analgesics are no longer acceptable. I live in a small rural area & in 2003 a local physician was taken out of his office in handcuffs for prescribing these drugs. He was found not guilty but the local police continue to harass physicians who prescribe potent analgesics. My primary Dr quit last December and I could not find a Dr within a 60 mile radius to accept me because I'm a chronic pain patient. I also discovered that by law Dr's are limited to the number of chronic pain patients they can treat. Is this true everywhere? A pain clinic in nearby State told me they were down to one physician for the entire pain clinic. I've written our senators but have yet to recieve any response. What are my alternatives? Without these analgesics I cannot walk, am bedridden in tears due to the pain, my HR & BP dangerously elevate.
    Last edit by yoda on Jan 25, '05 : Reason: mis-spelled word
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  2. 16 Comments

  3. by   traumaRUs
    Sorry for all your pain. Have you looked on your states medical directory website? I know that our pain clinic here no longer prescribes narcotics. Their idea is to wean to lowest dose possible of narcs and then substitute methadone with the idea that that is then weaned also. Is there a support group for your disease?
  4. by   yoda
    Please clarify...I have an incurable disease and thus am suppose to be weaned off analgesics...to what purpose? Am I to be punished and suffer with severe bone and muscle pain because analgesics are not socially acceptable?
    Yes, there is a, non-medical, support group I belong to.

    Quote from traumaRUs
    Sorry for all your pain. Have you looked on your states medical directory website? I know that our pain clinic here no longer prescribes narcotics. Their idea is to wean to lowest dose possible of narcs and then substitute methadone with the idea that that is then weaned also. Is there a support group for your disease?
  5. by   traumaRUs
    Pease understand that I did not mean "wean off all analgesics." I interpreted your post to be asking for MDs that would be willing to provide the narcotics you listed. Another avenue might be your insurance case manager.
  6. by   yoda
    I'm new to this forum and still trying to learn how to navigate. I apologize for the time it is taking to relocate this dicussion.
    I agree my questions were not clear and I thank you for taking time to respond.
    You mentioned "our pain clinic no longer prescribes narcotic analgesics", why?
    My questions:
    1. Is there a legally enforced limit on the number of chronic pain patients a physician's office can treat all over the United States, or is this just in Colorado, where I live?
    2. Are there any other options to control my bone and muscle pain? This is why I detailed the potential etiologies of my pain to assist in Tx plan ideas.

    Have you heard of buprenorphine or suboxone being used to treat opioid addiction? I do not get out much but the Internet is extremely helpful in research matters. They are using this in Florida. Is it effective? My curiosity lies in the fact that I have been on the same high dose of opioids for the past two years. I do not experience a "high" as addicts do, but it subdues the pain and I am sure my body has developed a tolerance. Therefore, if there is another socially and legally acceptable option to control this pain I may have to be weaned off the opioids.

    Quote from traumaRUs
    Pease understand that I did not mean "wean off all analgesics." I interpreted your post to be asking for MDs that would be willing to provide the narcotics you listed. Another avenue might be your insurance case manager.
  7. by   traumaRUs
    Yoda - I sincerely am sorry you are having chronic pain. My position is from an ER RN case manager point - I refer people to our one and only pain clinic which is run by anesthesiologists and neurologists. I do know (at least in Illinois) there is NO limit to the number of patients they can have and they do prescribe narcotics as a last resort for people. I have not heard of the meds you talk about but certainly can understand the tolerance you can build up while taking narcotics. Have you tried your hospice locally? Sometimes they are good resources for pain management. What kind of doctor takes care of fibrous dysplasia - orthopedics, neurologist, rheumatologist? Perhaps talking with one of their nurses?
  8. by   yoda
    I appreciate your advice. Fibrous dysplasia is incurable but not life threatening and is very rare. Calling Hospice for advice is a very good suggestion. I live in a remote area pop less than 2,000 it was a true miracle I found a general practice MD to take me on. Ideally orthopedic surgeon or oncology Docs are best, so they say, but I've had to educate every doctor I've seen. They just don't see this every day. I am thankful to know they haven't limited the number of chronic patients physicians can care for everywhere. I've got a lot of typing/educating to do for the senators of our State. There should be some place our physicians can go for protection also. I've written the AMA and Colorado medical board about the local police harassment with no response from them either. My OWCP case manager I wrote last December for assistance and have had no reply. It has taken over a year along with State Senators involvement in order to get any responses to questions from my worker's comp case worker. Believe me you do not want to get ill in this area.
  9. by   yoda
    I forgot to add that I agree that narcotic analgesics should be a last resort in treating chronic pain. I've been through the expensive herbal remedies, accupuncture, TENS, microcurrents, physical therapy etc... I was also in denial, unable to accept that I am disabled, and the fact that herbs and such cannot change a genetic mutation took awhile to sink in. My focus is to maintain and do what I can help. The analgesics keep my pain under enough control so I can do regular exercises to prevent further muscle atrophy. The electro-stimulation utilizing acupoints seems to give me more energy...etc...

    Quote from traumaRUs
    Yoda - I sincerely am sorry you are having chronic pain. My position is from an ER RN case manager point - I refer people to our one and only pain clinic which is run by anesthesiologists and neurologists. I do know (at least in Illinois) there is NO limit to the number of patients they can have and they do prescribe narcotics as a last resort for people. I have not heard of the meds you talk about but certainly can understand the tolerance you can build up while taking narcotics. Have you tried your hospice locally? Sometimes they are good resources for pain management. What kind of doctor takes care of fibrous dysplasia - orthopedics, neurologist, rheumatologist? Perhaps talking with one of their nurses?
  10. by   freedom4u2
    admin note: post removed and user banned for soliciting business
    Last edit by brian on Feb 5, '05
  11. by   yoda
    Please explain. Is this something you are selling?

    Quote from freedom4u2
    I am so sorry to hear about your situation. I do know of several people that have had good results with some unique technology that is non invasive, non chemical and for many, offers hope for a better quality of life. I don't know what it would do for you, but let me know if you want more information. Gotta run for now.Best wishes to you.
  12. by   yoda
    Again this sounds like an evassive sales pitch, one I've heard so many times before preying upon the deperate. I detailed the potential etiology of my pain which is structural & mechanical damage due to a genetic mutation...a GSA-protein mutation to be more precise. Now if you are selling something like stem cells that have a real potential of repairing a gentetic mutation but I'm not wasting my time or buying into any fantasies of expensive herbs being able to change and repair a genetic mutation. Something that fantastic would have gotten world wide news coverage. Nor will I buy into the idea that this is a secret being suppressed by the media because a cure would have meant drug companies losing too much money. I have friends who are doing research in genetic engineering and they are sincerely doing their best to come up with solutions. When I was in my denial phase of accepting the fact the fact that I am handicapped you may have made a sale. If there is nothing they can do about my symptoms then I want my symptoms masked.
    The side effects of the narcotic analgesics that I am on cannot be worse than the side effects of uncontrolled pain which affects are cardiovascular, respiratory, GI, GU, neuroendocrine, metabolic, musculoskelatal, Immunological, and yes even psychological. In looking at the whole picture from my perspective the scales weigh in favor of accepting the side effects of a narcotic analgesic.

    Quote from freedom4u2
    Edited to remove advertising.
    Last edit by Jay-Jay on Feb 5, '05
  13. by   freedom4u2
    admin note: post removed and user banned for soliciting business
    Last edit by brian on Feb 5, '05
  14. by   alintanurse
    yoda, I'm sorry to hear of all the pain you're having, I also would suggest that you contact Hospice as they deal with chronic pain issues constantly. Our local Hospice has a "pain MD" on staff. Did your previous MD ever order a Duragesic(fentanyl) patch for you, I have seen this ordered many times in the home health patients who also had chronic pain issues. Many stated good relief and the patch dose can be increased/decreased as needed,usually an oral pain med is ordered along with the patch for breakthrough pain. The patch location is changed every 3 days. I hope this is helpful.

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