Connect
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Chronic Pain Support Group.
Connect
Find a good acupuncturist. MD. Use massage therapy. Traditional medicine isn’t the only way. Some insurance companies cover. Accupuncture
Thanks for your response. Much appreciated. I contacted an acupuncturist a few years ago. After listening to all my symptoms, she said that acupuncture would not, in all probability, be of any help. I did try dry needling, several sessions. Did not help.
The only thing that has helped me is SCS. Unfortunately, the unit stopped functioning about three and a half years ago. They told me the paddle had developed issues. That’s why I’m going for a trial of one that has major improvements since the old one was implanted years ago.
Blessings to you!
-
Like -
Helpful -
Hug
2 ReactionsI absolutely love this! I am 40 years old and have been in pain management for 10 years now with chronic back pain. At the time, I was living in Ohio. I had moved back to NC about 3 years ago and have great doctors down here who care and are determined to find out what’s wrong with me. For years I was told there was nothing to concerning on MRIs or X-rays and I now finally have an appointment with a rheumatologist because I tested positive for the Hla-B27 gene. Which could be a key factor for an autoimmune disease. For years I have thought I was crazy, I questioned myself… “was this normal”. I have been so fatigued that my son is missing a lot of school, enough to have the law involved. I am so thankful that I have the best doctor and he does take the time to listen and he refers me to every specialist that he sees appropriate.
-
Like -
Helpful -
Hug
6 ReactionsI have seen so many of you here on Connect saying that you have finally found an empathetic and caring doctor. One who has been willing to spend the time in order to find the cause of your issues. I had such a doctor years ago back in PA. When we moved to Delaware almost three years ago, I had to find a new pain management doc who could manage my pain pump. There is exactly ONE such person here. Empathetic, no. Caring, no. Willing to dig deeper, no. It's ten minutes in and then, "Here's your hat, what's your hurry". No willingness to do much of anything beyond adjusting the pain pump... which has not given me any pain relief after three years.
I'm afraid that if I become a little more demanding of better treatment, he will ask(tell) me to take(tell) me to take a hike and look for another pain management guy. It's a conundrum. Any advice. Thank you all.
-
Like -
Helpful -
Hug
2 ReactionsThank you!! I live in a small town just south of the Canadian Border. Many specialists leave; the reason being their school loans get paid off for a 5 year commitment to small town medicine.
So, I have to travel 200 miles to see a PA who showed me my X-rays; I wa flabbergasted! I knew I have disc diseasse; I didn't know how that disc diseasse could twist and turn my spine like it has. T11 has fused to L3. How could all the deformaties be missed especially since I had a broken femur that break refused to heal so I had five surgeries with many hands and eyes all up in my leg. How could the curves in my back go unseen for 5 surgeries in 5 years?! The curvature of my spine shows as I walk, my curves shows how crooked my shoulders sit on my frame and yet my statement of pain wasn't attended to.
I got lucky: my physical therapist pointed me to a neurosurgeon, aka Dr. B.,After two meetings he layed out a game plan, Dr. B wanted me to do a minimum of 3 doses of Avenity first so he could count on my bones being strong enough to hold the hardware he will be putting in. On February 12 I will have the first of 3 surgeries in a weeks time. Advocate for your self, push all the buttons you need to get some medical person that will actually see you and listens to you with attention and interest. I'm no author so I hope this juggling mess of words get to the person or persons who it needs to see.