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Does anyone have experience with Palliative Care?

Chronic Pain | Last Active: Jul 29 9:27am | Replies (154)

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@philipsnowdon

Hello,
I am 69 years old turning 70 this August. I’ve been severely disabled for over 33 years from CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION.
I was totally home confined and bed ridden for the better part of 20-25 years during this time span. Too many symptoms to describe but painful enough and severe enough to alter my ability to function anywhere near normal or minimally functional on any kind of a mental, physical, cognitive, psychological or emotional basis. Of course, some periods of time are better and or worse than others. Succinctly stated, I haven’t been able to work or participate on any level of employment if earn a living since so was age 37. Fortunately, I had adequate disability insurance income protection which provided my economic security and prevented me from becoming homeless. Without that incredibly important insurance protection I would have become homeless within a 3 to 5 year period of time. I was so debilitated that I could not care or provide for myself. Thankfully, my beloved wife for almost 15 years was my full time nurse for the first 1- years of my total disability. I won’t discuss my personal life any further than that at this time as I will try to address your question regarding PALLIATIVE CARE. In addition to all of the areas in my life that I am severely debilitated etc, I’ve concurrently had to manage extreme levels of acute-chronic pain and exhaustion, The only successful treatment I’ve found to manage all of the above is utilizing opioids. Unfortunately, due to the horrific mismanagement of opioids by our government and its ridiculously unsuccessful “War on Drugs,” they are punishing the wrong people and placing legitimate pain patients and their physicians in a very precarious and life threatening position. Legitimate chronic pain patients are not the ones dying from overdoses. To be clear, the overdose deaths are being caused by illegal and illegitimate street drugs containing poisonous Fetanyl! However, these statistical deaths are included in the same category as responsible patients like myself and the responsible physicians who have treated me the past 33 years. It’s really embarrassing and dangerous to have our government take and make such irresponsible and reckless decisions with the lives of patients and their doctors. It amounts to nothing less than “government sponsored murder!” Firstly, Chronic Pain patients do not experience any kind of “HIGH or EURPHORIC” feeling when taking their doctor prescribed opioids. They simply “MANAGE” and reduce the levels of severe pain from a level of 10 down to a 6 or something close to that. Neither opioids or any other pain management system gets rid of all of the severe pain. It simply reduces unmanageable pain down to levels where people can still manage their lives to some degree and don’t have to consider or commit suicide as the only viable escape from the unbearable pain if they are denied their pain medication. Can you believe that our country and government are more concerned with withholding legitimately controlled and managed pain meds from patients and would rather see and or let people cruelly suffer and commit suicide than have live through the continued access of their to their pain meds! Keep in mind that the medical community and the government have not and do not provide any “VIABLE” Pain management alternatives. This is nothing short of the systematic murdering of its citizens. They are more concerned about trying to stop the drug related murders on the street, (which they can’t) as being more important than preventing the deaths by suicide, (which are absolutely preventable). We live in one screwed up country when it comes to providing adequate and humane health care for the elderly and seriously debilitated people in our society. To answered your question. I sought out PALLIATIVE CARE so if my current doctors who prescribe me opioids etc were to retire, move away, or no longer be able to practice medicine for any reason etc, my Palliative Care Physician could immediately step in and provide me with the prescriptions I require to manage my severe pain and debilitation. Palliative Care also provides an “UMBRELLA” of medical, mental and health care services to assist you with the overall care and management of your severe health care needs and concerns. You have a team of physicians managing your wellbeing directed by your palliative care physician. I am grateful and appreciative to have and utilize my Palliative Care Team. You can research “PALLIATIVE CARE” in the area you live in and start to put together some level of Palliative Care and or team for yourself. It has definitely improved my overall health and well-being,
Best wishes and good luck,
Phil

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Replies to "Hello, I am 69 years old turning 70 this August. I’ve been severely disabled for over..."

@philipsnowdon I wish I could rate that response 1,000%. Glad you still have meds.

My mother finally was able to get morphine (sublingual) when she went on hospice services. I am glad to hear your palliative care team sees the need.