← Return to Chronic Pain Patients With Intractable Pain: Advocating for Yourself

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Hi Colleen,

Thanks for adding "Advocating for Yourself". I'm sorry to sound so angry in my post but it's because I am. The doctor I found last year apologized to me at my first appointment for all of the doctors I've seen over the last 15 years. She said my case has been mishandled on so many levels and that I may want to consider a lawsuit! I just lost it and started crying. It felt so good to just have some justification after so many years. I had always been told they couldn't see anything that would cause my pain. She pointed out the Tarlov cysts on my MRI and referred me to someone that specializes in treating them. They are an "incidental finding" and all the doctors I had in the past ignored them. My family and I were robbed of our lives together. My husband and I never got to enjoy our marriage and we didn't get to raise our children the way we wanted to because of my health. Today my husband just works to pay all my medical bills we've acquired. My symptoms gradually got worse over the years and now they are so severe I'm pretty much bedridden. Since I've been sitting like this for so long we don't know what the extent of the nerve damage will be after surgery. Not sure if you know what cauda equina syndrome is but I have all the symptoms and then some. It's normally an emergency surgery but because the doctors ignored the cysts I've been sitting like this the whole time! This is why I'm so upset. Had they done the surgery years ago life would have been so much different.

I absolutely agree with you about making sure you understand what your doctor is telling you. It's soooo important! Your Mom sounds a lot like my husband when it comes to scoring their pain and "pushing through it". He minimizes everything! It's extremely important to try to make sure your doctor knows and understands all of your symptoms and how they affect you. I did run into an issue with this. So many doctors are pressed for time and are scheduled to see so many patients per day that they can't possibly sit down with each patient and get all the important information. I had to contact the office with my questions and I made sure to mention that the doctor was in & out of the room so quickly that I never even got to talk to him! He simply came in, took a look at my back, told the nurse to add a medication and then he walked out! That infuriated me. Patients are charged crazy amounts of money for these appointments so they should be allowed to have ample time with the doctor. Huge red flag if you are ever rushed through an appointment. Either say something and demand that you get your time with your doctor or just look for a new one. I think it's so sad because so many people, especially the elderly, leave not understanding their condition and most of whatt was said to them. My mother is one of them. If I am able to after my surgery, I'll be going with her from now on.

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Replies to "@colleenyoung Hi Colleen, Thanks for adding "Advocating for Yourself". I'm sorry to sound so angry in..."

Hello my name is Renee. I'm in the chronic pain group as well. I read your posts and I was horrified by your doctors just not listening!!!!!! I I was moved by your story I looked up your condition, I'm very sorry. I wish you had a chance to have the life you wanted. You sound like a strong woman! Keep it up! Please! I also have a rare condition called complex regional pain syndrome. It's a neurological condition where your pain sends pain signals to wherever it wants. It usually starts with an appendage, so basically it feels like something is burning or stabbing you, but there's nothing that shows it. There are five criteria you need to meet, but no actual test for the disorder. You feel like you're dying, but no one sees it. That's the worst part about it, people don't believe you. They think you're crazy , like who would want that,,,??? You have to see to see 2 psychiatrists before u see a neurologist, rheumatologist, and a pain specialist. I was very lucky… the disease was caught early. Or I would have lost my hand. It no curable and it's spread through my body in the 2 years I've been diagnosed. I have a spinal implant but will probably need another. I often can't leave the house because of the pain. I also have a husband that just doesn't get the extent of pain. My health has also deteriorated, I've been hospitalized 4 times and I'm only 45 years old. I am now living for me doing as much as I can….I will always listen if u want to talk.

You have a right to be angry, so don't apologize. You're stating facts in an appropriate manner, which is what my counselor would say. I am a medical professional, although not practicing and I'm so angry right now with my own issues and fighting for my health/lack of. I hope you find relief and a quality of life that you've not had before. Read about NAD therapy and it's benefits. I don't know if you're a candidate, but it can open up channels and pathways that have gone awry, which I am certain you have with this length of time and pain. Also, look into infrared sauna. It has many wonderful pain and healing benefits. Diet and gut microbiome health are also really important factors. There is much on the internet about it. About 70% of our immune system is in our gut…. Best wishes to you!