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Palliative Care for Chronic Pain: What are your experiences?
In 1989 I had my first surgery and it was on my lower back. Not sure why but I was blessed with a body that constantly kept breaking down, most major joints, multiple cervical fusions (C3-T1), lumbar (L4-S1). I have passed the 50 surgery April ‘24 and went an entire 12 without any surgery, first time in more than 25 Two weeks later diagnosed with bladder cancer and in June ‘23 died in a 60mph head on collision but got a little better with multiple pelvic fractures and every rib except 2 were broken. Two life flight helicopter rides, 3 months medically induced coma and a 6 week coma after the accident. So I have my share of chronic pain, due to the opiate issues in the past a reverse total shoulder replacement replacement in 2020 I was prescribed 5mg oxycodone. My Medicare insurance company set me up with an NP who specializes in Palliative Care (similar to hospice but to make daily quality of better). Palliative care has been expanded to include chronic pain management and for the first time in my 36 years of surgeries I have pain management that is actually giving me some relief.
I met with the NP just two weeks ago so I’m just in the infancy of the program for my issues but medical professionals make recommendations and treatments through my PCP. It’s all covered by Medicare and I’m really hoping that palliative care reduces my suffering. Can’t give a lot of specifics on it as I’m still new with the program but I’d recommend chatting with your PCP, insurance and do some research. Good luck, my fingers are crossed.
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I believe I may have mentioned this previously but over the years I have become a chronic pain professional fighting every day to fight off all the mental anguish we all suffer from and can’t seem to beat. I live in Massachusetts, I am disabled and I am on Medicare and Medicaid. I hate it…BUT I, through my government insurance plan am now involved with palliative care on the recommendation of the the insurance companies. It’s kinda like hospice but the palliative care medical person works with your PCP to help find ways to help you with your issues and find solutions to help. There is no charge to the patient, covered by the insurance company and has really been a huge benefit to me. Doesn’t hurt to ask your insurance company about palliative care, I got lucky with mine, maybe someone out there could benefit from that program as well.
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9 ReactionsHello @bobt8,
I combined your newest discussion on palliative care for chronic pain with your first discussion and updated the title:
"Palliative Care for Chronic Pain: What are your experiences?"
- https://connect.mayoclinic.org/discussion/how-to-care-for-chronic-pain/
I'd like to invite @philipsnowdon and @carlaz who talked about palliative care for chronic pain as well.
@bobt8, how is your current pain management going now that some time has passed and you have a bit more experience with the management plan?
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2 Reactions@JustinMcClanahan Thank you for combining my responses.
I think we will all agree that the chances of being totally pain free will probably never happen but with the changes in my meds I’m in less pain than 6 months ago which is a good sign. I could probably raise my meds for more relief but I’m still concerned about opioids and addiction.
Having palliative care and my PCP working together is a home run!
Bob
@bobt8 Thanks for sharing. I’m in Massachusetts too, and lucky to see good doctors at Boston's major hospitals. My spine spontaneously started breaking down 11 years ago. I’m now in the chronic pain category after 2 major rebuilds, and a third recommended. Not sections. Increasingly long lengths because hardware fails. Most recently a titanium rod actually broke. In between each surgery about 2 years of healing occurred then… failure. My bones are healthy. Pain is awful. My PCP recently suggested palliative care because for other unknown reasons my body has been rapidly getting sicker. I need lots of help to try to manage my health well. And there seems to be no good answer for “curing” it all. My PCP could not get the palliative care agencies to accept me because, they said, none of my multiple diagnoses were intimately terminal. Yes we were applying for palliative, not hospice, but they could not get me in. I’m interested to know more about how you were accepted for chronic pain. I’m currently, by the way, finishing. a unique 3-week long Chronic Pain Rehabilitation program at the Mayo Clinic. Most of what they teach is how our nervous systems get sensitized, and then spark off other forms of illness and suffering from the cells being overcharged. The illnesses and losses of function can seem unrelated because they are very different from one another. The theory is that similar to seizures, brain cell activity can spread. So can pain and other problems stemming from our over sensitized brains. Nothing about it is our fault. But, the only solution, basically, is to ignore it. Hopefully the pain signals give up their attempts intensify and spread. We will never go back to our pre-pain selves but it may improve. I’ll find out. Meanwhile, I’ll soon return home. Soo, for the many of us with chronic pain, can you share more information about gaining palliative care? I believe that kind of approach will help me live a much better life from here forward. There is not going to be a magic solution, and I’m tired of all my time spent on unproductive doctor visits. I also have Medicare and Medicaid. Good luck and God Bless.
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