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Hello @colorbug, welcome to Connect. You most definitely have come to the right place for community support, experience, and encouragement.
I'm very sorry to hear that you have pain throughout your body. I encourage you to advocate for yourself and not quit until a neurologist, rheumatologist, or any other Dr sees you. It's important to rule out diagnoses to get to the bottom of what creates your pain. This way you understand how to treat, or manage your symptoms in a more productive way.
Do you have a larger medical hospital or medical college that you can get to? Have you specifically asked your general doctor to refer you to a specialist?
I'm no Dr. and can't diagnose, but it sounds as if you have nerve pain, perhaps from neuropathy. A neurologist can evaluate an rule out different types of neuropathy via tests or skin biopsy.
The fact that you mention discomforts since childhood, brings me to Central Sensitization Syndrome (CSS). This is a chronic pain syndrome that can play unexplainable havoc throughout your body. Hence IBS, anxiety, nerve, joint, muscle pain, sensory issues. I have attached a video from the Mayo Clinic's Dr. Sletten explaining CSS:
https://youtu.be/8defN4iIbho
Will you please let me know your thoughts on the video? Please feel free to add more info about yourself so other members can offer their help.
Replies to "Hello @colorbug, welcome to Connect. You most definitely have come to the right place for community..."
WOW-thank you for this video. I have full body-pain-stinging-burning-parathesias-fasciculations-cramping-Multiple tests-MRI’s-skin biopsy-50 tubes of blood later-still no answers?? No surgeries-no impressive back issues-no diabetes. Only symptom is low IGM 35 and my mom had neuralgia. I have a wonderful GP-but his suggestion (after many tests)is-you can spend the rest of your life looking for an answer or let me treat your pain.
So I see a counselor- take 900mg of gabapentin and 30 mg of Nortripline. I question the gabapentins effectiveness. I tiered down from 1800mg.to 900mg. The Nortripline helps me sleep and cuts the pain a little. Trying to explain this to my family is so hard. I feel the constant need to tell them about my pain. They must be so tired of hearing it but they love me.This video is priceless-thank you.I am “Tired”-of hearing -“But you look so good”- When I don’t even recognize this body with all its wires crossed.
Just learned this: you must see a nerve specialists because neurosurgeons only know bones and nothing about nerves. Try Stanford or Mayo for this speciality.
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This was very helpful. Have not heard of this but it sure does hit the nail on the head. I do have an appointment late November to have a nerve test done. Thank you for the information.