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In reply to the discussion: Chronic Pain Sufferers are being screwed by the.. [View all]XenaAmazon
(37 posts)I'll try to summarize my experience briefly. I was diagnosed with an incurable and severe form of arthritis which has attacked my spine. Recently, I've developed a profound curvature which has added to the misery.
For about a decade, I've been managed with a fentanyl patch and breakthrough medication to take in between. Fortunately, I've read the writing on the wall and cut way back on my breakthrough meds.
My regular provider (for about 5 years) went on vaca this summer and was replaced without warning to any of her clients. They brought in an MD who was extremely conservative. Before even seeing her for the first time, she had decided to cut out my breakthrough meds. That's fine during the summer, but the cold weather brings on agony for me.
So, sure enough, during my intro appointment she told me she was going to "wean me off" of the oral meds. I told her I didn't need to be weaned since I only took it when I need it. So she stopped it right there.
It was only later that I began to panic about winter. So the next time I saw her, I brought up breakthrough pain. She promptly informed me that I "should not have" breakthrough pain with these patches. (So sue me, I do have breakthrough pain which can be significant).
Here's the rub. I can't make an issue of it because she'll just stop my patches and then I'll go in a downward spiral. The attitude is that if they don't get the "bang for the buck" they anticipate, they may as well not prescribe this stuff.
These patches have been miraculous. I went from not being able to walk from my bed to the bathroom unassisted to being able to ambulate with a cane most times. (Sometimes I need a walker, but I'm resistant since I'm young). I do have help 5x/week with my laundry, cooking, etc. I had to give up working completely. (I was a practicing lawyer). I can't predict from one day to the next if I'll be able to function without pain.
This is the other consideration. I lost my support group when I stopped working. For other reasons, I'm estranged from the one sibling who is still alive. So my life isn't great to begin with. If the only thing I can look forward to is uncontrolled pain - what's the point?
I live in a State where the legislature is going to take up a max daily opiate level (regardless of the patient's need). As I said, I've never asked for a dose increase and I've actually decreased the meds I take voluntarily. But I was under the incorrect assumption that human beings have a right to pain relief.
And yes, I tried all of the non-opiate alternatives. Pot doesn't touch this. (Plus, if they catch you with pot in your urine, they kick you from the clinic). And I nearly died from a hemorrhage thanks to NSAIDs so they are not an option. As the weather becomes increasingly cold, my life quality goes down. What am I supposed to do? Lie about it and tell this physician I'm just fine?