Share Your Story; Jan Marie Moore

After 15 years of suffering (docs cut a nerve in my c-spine during neck surgery), I have been diagnosed with CRPS. My spine is on fire 247. My body has atrophied terribly. I can barely walk or use my arms. Doc put me on Nucynta and a muscle relaxer. Its only helping a little. I’m 65 now, and frightened of the future. My head goes to dark places in the night. I saw 10 different doctors before this. All of whom called me “drug seeking” out of ignorance. The psychological damage they did to me is permanent, but for the sake of my family, I must press forward and try everything I can. I hope for all of our sake the medical community gets more savvy very soon! by JanMarieMoore

3 thoughts on “Share Your Story; Jan Marie Moore

  1. Vick in michigan

    I just recently found out I have this nightmare. It has been almost 8 yrs to get to this point !!! I now have started to have tremors , and twitching alsong with the extreme pain and swelling in the legs. I also have recently noticed I’ve lot balance a couple of times. When this flares up you can’t do anything I have a high tolerance to pain but never have I felt this type of pain before. I was happy to finally after so long to get a dx but then only to be told no cure and what the future has in store for me !!!

  2. I have had this horrific disease RSD/CRPS for 16 years. The workers compensation doctor’s all except one could have cared less. I was diagnosed early however, they did nothing but take me to a neurologist that wrote prescriptions and told me to learn to live with it. I have lost all my immediate family. They never once educated themselves, got involved with my doctor appointments, or any treatment modalities. My mother would always say when I was young, she was so glad that her mother was there for her. When I needed my mother the most she was no where to be found. Her advice. Put some make up on you will feel better. The judging by the doctors was tough, but that only made me seek out the best doctor. The threats by the pharmacist only made me fight for chronic pain patients to be treated with dignity and respect. The lies, stealing of my medical settlement money from my own brother. The numerous hospital stays alone. The fighting for my life through septic infection twice. Blood clots. Not once did any of my family come to see me. This was extremely difficult. The constant discarding by them as a drug addict. The final straw the youngest of my brothers was diagnosed with cancer, his words to me. I am really sick not like you. It was very difficult to remove from my life the toxic people that I had loved so much, had always been there for, my own family, But, they never tried to educate themselves, to understand. They had surgeries, pains, but, never did they understand the constant pain. All day, everyday. I was never more disappointed in them. I had to understand, they chose to be ignorant, judgemental, and more then anything, never there. Through these 16 years, my family never thought twice about calling on me. Moving my mother. Visiting her in the hospital everyday. My brothers weren’t there. But, I went in horrific pain. Hoping my mother would understand, be there, I guess just accept the person I had now become. My limitations, my grief for the things I could no longer do. How naive I was, she could have cared less. I heard the standard it can’t be that bad, it’s in your head, your just a drug addict. I fought long and hard for a functional life. Now I will fight long and hard to regain my medical treatment settlement money. I have come to terms that this just might mean putting my family behind bars. But, I will never come to terms with how a family member, much less my own mother could be so cruel, vindictive, and down right evil. As patients we must all stand together. We must be heard. We deserve to be treated with respect, dignity, understanding. But, we need to address to the world that research, education, and hopefully a cure is what we all should strive for. We can’t sit back and allow the chronic pain community to be punished, or stigmatized for the choices of the opioid abusers. We NEVER had a choice. We were forced to learn to live with a horrific, incurable disease. We take medication to function, to live somewhat of a normal life. I don’t see the numerous commercials offering us any help. Where is any compassion, understanding, or education for us?

  3. This is all our stories. I share this with reporters, all stories we can comment on, our government agencies etc…. we need to be heard loud and clear.

    This war on “opioids” is actually a war on chronic incurable diseases. A war on chronic pain disease patients who benefit from opioid medications. Medications that enable millions of Americans relief of chronic debilitating pain associated with these diseases.
    100 million Americans have one or more chronic incurable pain Disease. As the CDC, DEA, FDA, Medicaid and Medicare, and numerous other government agencies, are blaming Doctors for the over prescribing of opioid medication. NOBODY, is looking at or reading the statistics from chronic pain disease patients. How about NOT addressing these drugs as dangerous and addictive. When all else fails: physical therapy, exercise, over the counter medications and numerous injections etc, we chronic pain disease patients, are left with one option to help us cope, opioid pain medication. Lets address this medication as lifesaving and medically necessary for the million of Americans with chronic diseases. Chronic pain is a disease. Chronic pain disease patients are now the epidemic. The addiction rate of chronic pain disease patients is .02-.6 %. We do not misuse or abuse our medications.
    No other disease medication is scrutinized. We, as patients, are being denied, dismissed, overlooked and discriminated against, by our physicians, due to all the scrutiny associated with treating chronic pain disease with opioid medications. Our Dr’s are afraid to treat us humanely and adequately. We have a disease that medication is readily accessible to us and we are being denied. We, pain patients, are being discriminated against, due to people who abuse illegal heroin, illegal fentanyl and/or misuse opioid medication and place the blame on everyone but themselves. This is a direct hunt for Doctors who prescribe life saving medication, for pain disease patients, that benefit from them. We have our privacy invaded, we no longer are able to have doctor/patient confidentiality. We now have insurance agencies, pharmacists, and other government agencies in our physicians offices. Monitoring and policing our physicians.
    Though the statistics show a reduction in, medically needed, opioid medications, death rates of overdoses from illegal opioids is rising. This system and laws are obviously not working.
    The specific causes of deaths also needs to be closely investigated. The opioid in the person’s system needs to be specified. Was it an illegal opioid, was it opioid medication specifically for that person, was there other drugs or alcohol involved. All these questions need answers.
    We have a chronic disease. We want to be able to take care of our homes, our children, our selves, as much as possible, but without access to these life saving medications, we are unable to do so. We want to live, not just exist in pain 24/7.
    We need the government agencies to look at the real statistics, not the hand picked. These agencies are not physicians. They are trying to doctor us, patients, without a medical license. They are also trying to police our physicians. This is a war on a disease, medications, physicians and patients.
    The statistics do not differentiate what opioid drug attribute to a fatal overdose or misuse of medication. Was is an illegal drug, heroin, illegal fentanyl, carfentynal, was that person’s legitimate medication? All these questions need answers. The information needs to be addressed.
    We need help. All the headlines, topics and stories on how opioids are bad and how people are abusing, misusing, overdosing, becoming addicted or dying from them. We need to look at the good they do and how they help our disease of chronic pain and the million of Americans who use them for some relief.
    The government needs to put the focus on illegal drugs coming into, being manufactured and distributed in this country, illegal fentanyl, illegal heroin, methamphetamine, cocaine and all other ILLEGAL DRUGS. People who abuse and misuse medication, not prescribed to them, illegal drugs, alcohol, sex, whatever it may be, will always find a way. Put the focus on that. Not the legally and medically necessary medications we patients need. We chronic pain disease patients need help, but we are helpless due to the government and government agencies. There is stigma, scrutiny and discrimination against us due to a category of medications we desperately need and benefit from.

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