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Chronic Pain Patients With Intractable Pain: Advocating for Yourself
Chronic Pain | Last Active: Sep 17 5:48pm | Replies (22)Comment receiving replies
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.
Replies to "Hello my name is Renee. I'm in the chronic pain group as well. I read your..."
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!
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@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.