Tips for working with your doctor to help pain

Posted by galesr @galesr, Oct 9, 2023

I'v been on pain meds all my life so I could have a life. In the last three years my doctor has taken off all pain meds. Life really sucks now. I'm back to not being able to do things I enjoy. And they wonder why from there we are depressed. No fun in life any more. Are real people with pain paying for the real dug addicts? Wish the doctors could feel our pain!

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@leeb123

I have told my provider, the pain i suff is nothing short of NOT HUMAN!
Yet the can gets kicked down the road.
I suffer from AS, spinal stenosis, kidney cancer and i get Gabapentin and epidural steroids, that minimally works.
Why are we allowed to suffer is the question.

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I know exactly what you mean about the can being kicked down the road, My situation has been going on for years (twenty years of Tramadol which does very little,) However, the light may be at the end of the tunnel. I have a nurse from the pain management dept who has prescribed Lyrica and it appears to be helping.But I still have a cynical altitude. Take care - this is not a pleasant journey.

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@frances007

in reply to @scottrl I read your post with great interest and could not agree with you more on anything that you have written. Not too long ago I told my PCP that I wanted to feel like I "mattered" to him and to Sutter. His response, "Do you want another doctor?" Last night I finally had a response from the liver specialist to whom I posed a question after a CT scan revealed a lesion on my liver, and in my question I told her that I was reminded of an earlier comment she made to me during a video visit, and with whom a friend was sitting next to me and taking very copious notes because I do not hear well, and the doctor is from India. During that appointment she said to me that the radiologist cannot make a diagnosis, only the doctor can make the diagnosis of whatever. So, I mentioned in my message to her that I was asking about the lesion because I had remembered what she had told me in the past about radiologists. She told me that she did not recall making the comment, or that I had "misinterpreted" the comment and that further questions should be addressed with my gastro doctor who I filed a grievance against over a year ago when he essentially threw me out of his office because I was asking too many questions. This has been been my experience over the past 3.5 years while my clinicians try to diagnose my problem, while in the meantime I have lost an enormous amount of weight, take pain pills like candy and well, just continue to put one foot in front of the other.

While watching 60 Minutes this past weekend, I was especially astonished by what the fellow who developed IA had to say about what he had built. While it all sounds very dangerous, perhaps in the future there is hope for many of us who suffer, as soon there will be robots diagnosing us, and it is anticipated that AI will know a lot more about us than those doctors who choose not to treat us.

Furthermore, the next time I have to fill out a form that asks how I sexually identify myself, I told a friend I will check "other" and write down the word "unicorn."

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No one, no one thing can know more about you - than you.

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Pain is a part of human existence. We need it to know when we are hurt (emotionally and physically) and when we do experience it managing it is the best thing. It is not simple, and it is something that involves engaging with your care team. Have the tough conversations, disagree, and be open to possible solutions.

I lost a parent due to a broken back caused by a kidney tumor. They treated her back pain with pain meds. That was not the answer. Be upset with the educated options but be a part of the process. In the long run you will be better off working towards a solution than being stuck and angry.

There should always be options. Mayo has a pain management clinic that has a three-week program where you engage and learn ways to overcome the challenges of pain management. You don't have to "like it all". Just participate and you might be pleasantly surprised.

There are several resources out there... There is a program called Mindfulness Based Stressed Reduction (MBSR) that is offered at some of the larger academic centers. If you don't have access to such a center, some providers, such as social workers can help facilitate your experience towards a positive one. If you are ok with learning from a book, "Full Catastrophe Living" authored by Jon Kabat-Zinn, is a good read but one you need to take your time through it. It will walk you through the MBSR and help you to "use the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness".
Best!

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@AlwaysHopeful

I know exactly what you mean about the can being kicked down the road, My situation has been going on for years (twenty years of Tramadol which does very little,) However, the light may be at the end of the tunnel. I have a nurse from the pain management dept who has prescribed Lyrica and it appears to be helping.But I still have a cynical altitude. Take care - this is not a pleasant journey.

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I have taken both Lyrica and Tramadol for FM. Neither helped the pain and both caused too many side effects. I would rather deal with pain than lie like a lump all day. Good luck if you have no allergic reactions.

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