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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!
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@qball2019 Try this site... .https://www.springfieldwellnesscenter.com It's not just for drug addicts. Call the number on the site and talk to them. They are wonderful people. This is the longest running treatment center of it's kind and they perfected the treatment. Family atmosphere of caring people and a God send miracle for all kinds of things. Call them. You won't be sorry!
@terri672 Thank you, I'll check it out!
It just breaks my soul, listening to all of you who have been ignored or misdiagnosed. I, too, had fairly bad pain after a ski fall eight years ago. With meds and a SCS, I managed to bring it under decent control until 2021 when the pain came flooding back. I had a pain pump implanted in 2023. It has never given me any relief. In the past eight months. severe pain has been invading every part of my body below the waist... lower back, buttocks, back of thighs and knees, ankles, feet, right out to the tips of my toes.
I practically begged my pain specialist who is managing my pain to look at other avenues of treatment or reach out to colleagues for other options. I guess his pride won't allow him to do that. I finally sought out a new pain specialist about three months ago. He gave a few options. The idea of a new, different spinal cord stimulator had not crossed my mind. Apparently the technology has changed sifnificantly since my last one.
I received approval from insurance for the trial of the stimulator in August. I have been able to reach some only one at the four or five offices regarding when my trial will be scheduled. She said she was looking at the schedule to see about getting me on it. That was three weeks ago. All calls to several of the offices go to voicemail now with no call backs. I am sitting here in severe pain and don't know what to do at this point. ANY SUGGESTIONS? I am beginning to feel deperate. The reviews for this practice are sketchy with most reviewers complaining about the same issue of poor or no servive. HELP ME! please.
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2 ReactionsI have long recommended that people get and thoroughly read all their test reports and research what words mean and what sounds out of the ordinary. Many health care professionals simply look at the flagged blood test results or the “impressions “ on radiology tests and never read the descriptions. I know 2 people who had leukemia that was missed for years because monocytes on a CBC have no established reference range, therefore never get flagged even when abnormal. I have a bone tumor in my femur that wasn’t mentioned for a decade (I found it) and although benign has potential for becoming malignant. You must be your own detective and advocate. It’s getting worse because so many health workers left the industry because of Covid and everyone is short staffed and has no time to delve into things for their patients. Sad but true.
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3 ReactionsGood advice, since my experience is that perhaps one in three “health professionals” even glance at patient records.
Anecdotally, in my attempt to find better Pain Management the offices I contacted managed patient contact through Physicians Assistants, and all offered the same limited treatment strategy with no attempt at diagnosis. The telling difference between the visited Pain Management offices and the one I depend on that mine is nearest to home.
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1 ReactionI agree completely. If I had listened to two ortho docs 8 years ago, who told me that there was nothing that could be done for my lower back pain, I would likely be in a nursing home. I learned pretty quickly that I had to be my own best advocate, Yes, docs and staff are often overworked...or, thay just don't want to get vested in a more complex problem. Right not the pain doc who is managing my pain pump (which has done nothing to mitigate my pain) has done nothing to explore other avenues of treatment to help address my increasing, severe, chronic pain. I had to go to another pain doc to get other treatment options. Now I am being scheduled for a trial of a spinal cord stimulator. Four years of searching, mostly on my own.
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3 ReactionsIt is easier now, because, at least in my case, my test reports are published on line.
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1 ReactionYes with patient portals you can see your reports and even view your images. I am so sorry you have suffered for 4 years and been burdened by self research, etc. I do hope your spine stimulator works well!
At Mayo I believe that all referrals are initially handled by an assistant. Hopefully your referral got to right specialist for your needs. From my experience your initial contact will almost always be with an assistant before you see the "Big Guy" or "Big Gal".
The only times I've seen the principal in years have been on the few occasions I've received a procedure (injection). So far none have made any difference. Pain Management has been Pill Management.
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