Chronic Pain Patients With Intractable Pain: Advocating for Yourself

@qball2019, I hope you don't mind, but I added "Advocating for Yourself" as a subtitle to your original title to describe the gist of your message. It is so true that we have to take part in our own care. The patient is not merely the subject, but rather a part of the care team. Getting a copy of your records, understanding the terms, and asking questions are certainly advisable steps to take to be an active member in one's care. I would also add these:

1. Repeat back what you understood the doctor to have said. This can help the doctor see how you have interpreted the information and correct any misunderstandings. So often a doctor may explain something in terms that they think are easily understood. Only when you repeat it back to them, do they realize how their words can be misinterpreted.
2. Be descriptive when describing symptoms and give them context. This is especially subjective symptoms like pain and fatigue. My mom suffers from extreme fatigue. She is a really strong person and pushes through it. When she mentioned to the doctor that she was often tired and told them how much she did during the day, he understandably attributed it to aging. She was being stoic for the doctor. Once I accompanied her and gave the doctor more background on her attitude towards pushing through pain and fatigue. What is a 7 for some people, my mom would describe as a 4. I also rephrased tired to be extreme fatigue. Then additional tests were ordered and an underlying blood disorder was discovered.

@colleenyoung

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.

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.

@rsnowflake
I'm so sorry to hear about your CRPS and your struggles with it. I totally understand. You sound so much like me! I'm 44 and for years nobody believed me. My husband also started doubting me and just didn't understand that enduring this kind of pain is so physically, mentally, and emotionally exhausting. He thought it was just a back ache and I should just push through it. Even if you do nothing but lay in bed all day you're exhausted. I only leave the house to go to Dr. appts. I have similar nerve pain as you too. Just yesterday I was told that they think I have a low pressure headache so I'll be going in for testing. She also told me I have both hyperalgesia and allodyniam not sure if you know what those are;. One is where things like a pinch should hurt a little bit but your nerves overreact to it and the other is when something that shouldn't hurt lights your nerves up. That would be like a blanket touching you or if a pillow touches you. It's all miserable no matter what kind of nerve pain you have as you are well aware. A couple weeks ago another doctor mentioned that peripheral neuropathy is setting in. I have this on my right side from my lower back, butt cheek, down my leg, and into my foot. It's starting to spread over to the left side as well. We also received notice that my insurance is denying my surgery saying it's experimental and there's lack of medical evidence. I have a huge pile of evidence! Just in the last year they sent me for every test you can imagine trying to prove that it's the cysts that are the cause of my issues. I can't afford to have it without insurance and if I don't have it my condition will just continue to get worse.

Have you ever tried lidocaine patches or Arnicare gel/cream? I've been experimenting with the patches and they seem to help a little bist. The Arnicare gel works great for arthritis and has been helping with the nerve pain. You rub it in and within 10-15 minutes you feel a little relief. You can find it on Amazon in the larger tube for $10-$12.

Just having someone to talk to that understands the pain really helps a lot. You are welcome to private message me if you like.

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!

@qball2019 Hi, I enjoyed your post and am wondering where I can get some more info on pro biotic/gut issues. Thanks !!!!.....Karen

@rsnowflake

I'm very sorry to hear about your condition. Your symptoms sound way too familiar! I understand the ..."feeling like you're dying" cuz I feel like that every day and have for a long time. Every day is just trying to endure the pain. I am absolutely open to talking any time so don't hesitate to message me on here or private message me. It helps a lot to have someone else that understands what you're going through to talk to. I haven't gotten to a neurologist yet to have all the nerve stuff diagnosed. I have pain from the T10-T12 and down through my lower back and into everything down below. All of the Tarlov/perineural cysts are by my tailbone so I'm sure you can imagine. I was already diagnosed with peripheral neuropathy, allodynia, and hyperalgesia but there is more coming I'm sure. I have nerve pain going through my butt cheek, down my leg, and into my foot. I have internal itching that accompanies the nerve pain as well and I can't sit on my right butt cheek at all. I can barely step on my foot and have to keep a wool sock on it at all times. Any little bit of a cool breeze lights it up. My doctors believe I'm having low pressure headaches as well. Fingers crossed hoping the neurologist can help me out. I'm going in on Thurs. to see if there is a blood clot in my calf. There's more but I don't want to ramble.

I hope to hear from you! Take care!

@terri72

Thank you for the ideas & for understanding my state of mind. Do you have any more info. for the NAD therapy? All I've found it that it's for drug addicts and their recovery. I do take probiotics for the gut health and am eating as healthy as I can. I will be checking out the infrared sauna! That's sounds great!!

@karen00
Your gut health controls so many functions and is so important. Be careful when deciding which ones to buy. The one I use has 50 billion organisms and 19 strains. I read that the higher number of each, the better for you. You can find them here: https://www.amazon.com/gp/product/B01ISXH62U/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1

Also, here is one of the articles I read that covers the bases: https://www.humnutrition.com/blog/the-guide-to-choosing-the-best-probiotic-for-you/

Hope this helps you! Take care!

@qball2019 Hi qball, thanks for the links!