Chronic Pain Patients With Intractable Pain: Advocating for Yourself
If you have been considered a “chronic pain patient” for a long time and they tell you that you have intractable pain there may be something you can do. For over 15 years I’ve been that patient and all the doctors I’ve seen over the years have been telling me they don’t see anything on my MRI’s that would cause my pain. Come to find out all these years later that the issue showed up on my very first MRI. There are several incidental findings that show up on there that were never mentioned or even considered to be the cause until June 2018. I had to go through quite a few doctors and keep pushing and asking lots of questions to find out why those incidental findings have been ignored. I’ve never gotten a good answer but I did find a group of doctors that are getting things done for me. Just when you think all hope is lost keep fighting. I know, you’ve heard so many people tell you that but they don’t understand how the pain affects you both physically and mentally. If you are in that kind of pain then there IS something wrong. Your doctors need to start thinking outside the box and you need to be the one to push them to do it.
You need to first request ALL of your records from everywhere you’ve been seen. Read through every single page and highlight all the findings on your imaging/scans. If you don’t know what something is then Google it. Pay close attention to any “incidental findings”. For some reason doctors seem to only want to look for the most common ailments and quickly dismiss the possibility that those incidental findings could be the culprit. Don’t get me wrong, there are some great doctors out there that care deeply about helping their patients but so many others simply see you as a dollar sign. Many are more than comfortable keeping you as a pain patient. You pay for injections and other procedures as well as come in to have your medications filled once per month. You’re a profitable patient so why change anything? I apologize if I’m offending anyone but this is just what happened to me and my current doctors agree. It’s sad but so common. This is exactly why you need to start asking questions. Next, go through all of your highlighted items and if there is anything that your doctors haven’t addressed then start making a list of questions to ask. For instance… My MRI shows a perinerual cyst on my right S2 nerve root. I have most of the symptoms of what they can cause so why haven’t we considered it as a cause for my pain? If your doctor tells you that those cysts don’t cause any issues then you need to insist that sometimes they do and keep pushing.
If your doctor refuses to consider other causes for your pain/condition then that’s a red flag for you to move on. You are in control of your care and you need to remember that. Don’t settle for unanswered questions. You are your own best advocate! If this info. helps just one person I’ll be happy. I just think there has to be soooo many chronic pain patients out there with these “incidental findings” that are being ignored. If reading through your records yourself can raise some questions that may lead to the end of your suffering, why not go for it?
Take care and good luck to all!
Interested in more discussions like this? Go to the Chronic Pain Support Group.
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