Reply To: What would you say to providers about your pain

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I would like them to:

1) take my increased pain report seriously. When I state it’s getting worse it—is—getting worse. Just because I am not acting any differently does not mean I am not physically any worse

2) I need them to look for the cause and not assume I need meds for my pain. I have gone months with increased pain levels and i had a CT scsn for a different procedure and they find out Heyyy. My thoracic lumbar snd heck my whole spine is a mess. I looked at the scan and there is obvious cervical stenosis at the site of my fusion. My neck is just getting worse and worse. This stresses me. To no end. I listen to my body it screams something is wrong—thank goodness I had a CT because they were just going to do radio frequency ablation on my nerve or cryo. Kill the darn nerves screaming something is wrong. They never really thought the degeneration could be that fast after a great MRI not so long ago. But my body told me something was wrong. No matter what I said there was no—further studies. Status quo. No more diagnostic. We are not all the same. But it’s really a mess. I can tell that just by the scans. If they say not I will have to get a 2nd opinion. And I know I’d be right.

3) think outside the box. When pain patients tell you meds do not work—perhaps genetic testing is a good idea. It was determined that I do not process many medications the way others do. Instead of thinking a patient who tells you meds don’t work for very long has just built up a tolerance–perhaps they cannot metabolize them correctly!! When a patient offers hair follicle, UA’s at any time and gets your concern because they were a substance abuse counselor for 10 years. I flipping hate this and wish they’d just hear me.

Just enough.