Monday, February 24, 2020

Comments by blueyemom

Showing 2 of 2 comments.

  • I am a chronic pain patient on opiods since 2010. I have never broken my contract with my pain management doctor. Never sold or bought my pills illegally, use only one pharmacy. Never tried other illegal substances.

    Suffice it to say that without sufficient control of my pain I would not be writing this reply today. I even spent 4 days in the ICU when my pain became impossible to be controlled any other way and I was afraid I might take my life out of desperation to end the pain.

    If those of us who depend on opiod pain management are not allowed to have opiods; a scenario that is not unimanginable anymore, I fear what might happen when my pain is at a level 10 and nothing works.

    I have nerve pain, neuropathy, Trigeminal and Occipital neuralgia all caused by toxic medications that permanently damaged my neurological system. There is no physical therapy, TENS units don’t work, psychotherapy will not make it go away, OTC meds are useless. Believe me, before my diagnosis, I tried every single thing I could out of desperation for relief. I ended up putting myself in a psychiatric unit before diagnosis because I thought I was going crazy. Turns out is was the Trigeminal Neuralgia.

    Opiods, taken in small doses, allow me to do more than I would without them. Still, I am permanently disabled but being able to cook a simple meal or sew or create my art are only possible when my pain is controlled by low dose opiods. I do not like taking them and do not want to take them but my other choice is to live in the ER or consider taking my life because I am in untreatable agony. Surgery is out of the question because I do not have a functional cause, just toxic damage.

    If the United States would make Medical Marijuana legal in all states for any chronic pain cause, some of the need for opiods could be lessened but there will never not be a need to treat chronic pain patients with opiod pain relievers. They give us quality of life, in fact for many, they keep us alive. Very few of us abuse them or misuse them or seek drugs illegally. We are the ones who are going to suffer if these new policies are implemented. The poor maligned addict will not suffer, they will always be able to find and buy illegal substances. Whereas most pain patients, including myself will not do this nor do many of us know how to buy illegal drugs. Many of us are afraid we would be arrested and end up in prison. So either way, take away our legal pain medications or make us learn how to buy them illegally, is not a choice for us. It is sad that we are being blamed for prescription drug deaths and inhuman that we even have to fear not having adequate treatement for our pain. I hope our drug czar and the CDC are listening.

  • Out of the blue my pain management doctor decided not to refill my opiod script till my next visit in June, it was nearly 3 weeks. I had to call and call just to get someone to answer my call. (lousy office management). They didn’t have or read my records and thought it was for breakthrough pain when it was the only medication I had for pain. Finally I got through to them and had to drive the hour and a half one way to pick up the script and go back home.

    I had to go to the ER the night before because my Occipital Neuralgia was out of control and I had no treatment to even lessen the pain, my second trip in as many weeks. Even the hand held scripts that have to be picked up versus letting the doctors call in the drugs like they used to can be a huge burden since many many people live in small towns and have to make long drives for pain management care. Being a pain patient is rife with problems that too easily cause our pain to become out of control requiring expensive ER visits when the doctors try to limit our opiods out of fear of the suggested guidelines for primary doctors, not for them, instead of doing what needs to be done to help prevent and not just treat our pain when it occurs. I have acute exacerbations of my types of pain, Trigeminal and Occipital Neuralgia. I was even put in the ICU when my pain became intractable from ineffective medications. The CDC needs to see the what it is like to be a pain patient and learn from us that we are not addicts. We don’t fit the DSMV criteria in any way. That we use our drugs correctly, except for a very very few. We should not be punished for what addicts do, they will always be able to get their drugs of choice. The rest of us have no idea how to do acquire illegal drugs and would not do it unless the CDC continues to push us further and further over the cliff. It will eventually be down to very few choices, live with unbearable pain, commit suicide, buy illegal drugs unless we are lucky enough to live in a state with legal medical marijuana and have a condition that is covered in the short lists of conditions allowed. (I am in Illinois). I don’t know how else I will be able to treat my pain if my access to effective treatments both opiods is limited. Other modalities can help but when they are not 100% effective, I, we often an opiod so we don’t suffer day in and day out. or live in near paralyzing fear of the next acute attack.