Please help: Undiagnosed chronic pain of the limbs

@jenniferhunter
Thanks for all the good information on leg pain. I should have mentioned that my legs hurt when I sit, stand, walk, or turn over in bed, but not when I lay down. I guess only when I use them. My muscles are very weak in my midsection, and I have some muscle atrophy in my legs. Your information will be good to bring up with my doctors for further evaluation.

@kate22 I had MRIs of my cervical spine that showed the ruptured disc and bone spurs compressing my spine. Here is a video of a doctor explaining how to read the MRI. My imaging was similar to this. I recommend that you get a copy of your imaging on disc and a copy of the radiology report. The report has to say something. It usually lists each level and notes anything related to wear and tear, arthritis, disc height, spine alignment, etc. The problem I had was that 5 surgeons would not help me because they didn't understand my symptoms and how to connect them to the imaging, so I needed a better surgeon. That is why I came to Mayo. I looked for a specialist that had an area of interest in what I needed, and I read his papers. When I looked up a term in one of the papers, that search brought up medical journals with cases similar to mine. I contacted Mayo and asked to send my imaging in to that surgeon because his papers talked about leg pain that was caused by a spine problem in the neck. I wrote him a letter describing the problem and what tests I had done, and sent the medical literature in with my imaging. He offered me an appointment, and offered surgery right away. It had already been a few years of just getting worse while I searched for help. I didn't have to convince him, because he understood the problem that the others had missed. You just need the right doctor to view the MRI and recognize the problem. I don't know if you have good spine surgeons where you are. Patients do come to Mayo from around the world, but often they pay out of pocket for treatment. Spine surgery is very expensive and the Mayo website has an estimator you can find to show costs in US dollars. You might want to look for universities with medical schools to look for better surgeons. Look then up online. You can always ask one of your doctors to help you find a good surgeon. Look for one who has trained at a good school.

I used Arnica gel on my neck to deaden pain. My physical therapist kept aligning my vertebrae that were shifting because of muscle spasms. She also used a Dolphin Neurostimulator on me to block the pain signals at the nerve roots with an electric current, and did this every week or two. Spasms increased pain by essentially making the spinal canal smaller when vertebrae slipped and were offset. I also used heat wraps to try to relax the muscles and would have to lay down and try to lay with a straight spine because any bending produced pain. I even used my micro-bead neck heat wrap as a kind of cervical collar by tying a neck scarf around it. I did that when driving because I was afraid of getting hurt with a whiplash if there would be a traffic accident. Keeping my neck still helped reduce pain.

Ask for an MRI of your complete spine because you can have damage at any level that could cause problems and it would be missed if they only looked at one area. My problem was in cervical, but I also had a bulging lumbar disc, but that is not causing problems. My cervical surgery did fix all the pain I had. If your imaging is more than a year old, it needs to be done again as the problem could have gotten worse. Can you tell me what kind of injury you had and what were the symptoms right afterward? Are these same symptoms returning? You might want to ask for a physical therapy evaluation as they can help find problems, but they need to know about problems that show up on your imaging first. If you have instability, it can be dangerous to work on you, so they need to know. There are a lot of videos from the doctor explaining MRIs, so if yours is a different area, maybe you'll find what you need there too.

Thank you, I will ask for another opinion. About the injury, it happened something like two or three months before pain in leg started (it was summer, so I could have ignore something), I was racing in those little motocars (I do not know how to call it) and somebody hit me from behind, the seat hit my back very painfully and the pain did not go away for at least week. I had problem with moving because of it. But no other immediate symptoms, that I remembre.