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Please help: Undiagnosed chronic pain of the limbs

Chronic Pain | Last Active: Dec 13, 2018 | Replies (36)

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@jenniferhunter

@kate22 Hi Kate. I'm a Mayo spine surgery patient and I had compression of the spinal cord in my neck likely due to an injury 20 years earlier. The way you describe your symptoms as starting with a sharp stabbing pain and increasing in frequency, and the weakness that you now have suggests a possible nerve compression problem. When my symptoms started, it was a sharp pain in my ankle that was on and off and my symptoms increased over 3 years until I had pain all over my body, and it all came from a spine problem in my neck. There can be other areas in the body where nerves can get compressed too. A neurologist would look for the problems and do tests to confirm if the nerves are sending signals correctly. Weakness can come from compressed nerves, and I lost part of my muscle from this before I had surgery. I would suggest keep a journal and map your pain on a diagram of the body. If you search for "dermatome map" online, you'll find a diagram that shows areas for specific nerves that come out of the spine. Also note if your pain is worse or better with different positions like standing, sitting, lying down, and if there is anything you do that makes it worse. It sounds like your doctors ruled out a lot of inflammatory disease that causes nerve pain. If you had an injury, it's possible that could be related. Some people have congenital problems too since they are born with the issues. Diseases and infections can also cause pain and weakness like Lyme Disease that is caused by the bite of an infected tick. My dog had that, and he got spastic and progressive weaker until he could hardly walk. Look for a neurologist who is an expert in spine problems, and if they find something with the spine or spinal nerves, you would then be referred to a spine surgeon. If you have compression of the spinal cord like I did, the pain can be everywhere and changing places depending on just which part of the cord is squished. If you have compression of a nerve root that exits the spine, it follows the dermatome map and is specific to where that nerve path goes in the body. There can also be alignment problems of your shoulders or pelvis that cause limb pain, and physical therapy can help. I also have Thoracic Outlet Syndrome which is a shoulder alignment problem and I'm working on that in physical therapy. John's question about medications is a good one. Look up any medications you use to see if there are side effects that might explain your symptoms. I hope this gives you a starting place to ask questions of your doctors and will help them help you. Only a trained medical professional can evaluate and diagnose the problems. Sometimes they miss things too, so it's good to ask these kinds of questions. Thoracic outlet syndrome does cause clumsiness in the hands and spine problems can cause that too and I have experienced that. TOS can be a postural problem and working on a computer with bad posture will aggravate it. Here are some links for information. These are links to other links about various causes of pain and you can read about them including diseases and other problems that might cause similar symptoms.
https://www.mayoclinic.org/symptoms/shoulder-pain/basics/causes/sym-20050696
https://www.mayoclinic.org/symptoms/arm-pain/basics/causes/sym-20050870
https://www.mayoclinic.org/symptoms/numbness-in-hands/basics/causes/sym-20050842

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Replies to "@kate22 Hi Kate. I'm a Mayo spine surgery patient and I had compression of the spinal..."

Oh, this is an interesting fact. Because when I think back a few months before this started I had a little injury of my back. When I asked my doctor about it she send me to MRI, but that came back negative (even on scoliosis, which I know I have and that was a bit strange). Two or three (I do not even remember) neurologist did not even try to do more tests. Please can I ask you what helped you relieve pain and how did you persuade doctors to do something?