Please help: Undiagnosed chronic pain of the limbs

Hello @kate22, welcome to Mayo Clinic Connect. You are not alone. There are many other members with similar health conditions. There is another similar discussion that I think we should move your post to for more visibility so that you can connect with other members with similar health conditions. I'm tagging @kanaazpereira to see if we should move your post to the following discussion:

Groups > Autoimmune Diseases > Undiagnosed and don’t know where to go next
-- https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

@kate22 are you currently on any medications?

John

@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

Thank you, I would be glad to join more people to discuss my problem. And yes I am on some medications, but sadly I know that they do not have any side effects of this kind. I take hormonal anticonception (because of big problems with menstruation), some medication for my hearth and now I take L carnitine and some vitamins. I hope this information will help.

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?

Hi @kate22,

You'll notice that I modified the title of your discussion to match your concerns and the questions you’ve been asking.
I added this discussion to the Chronic Pain group as well https://connect.mayoclinic.org/group/pain/ – I thought you might be able to connect with other members talking about similar symptoms. One of the features of Connect is that discussions can be a part of several groups, simultaneously. And so, this conversation will also continue to be a part of the Autoimmune Diseases group. https://connect.mayoclinic.org/group/autoimmune-diseases/

@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.

I have four bulging disks in my lower back along with some scoliosis. This causes the nerves along my lower spine to be irritated. All this causes terrible leg pain. The surgeons decided not to do surgery at this time. I receive caudal epidural injections for the leg pain. This really helps. Surprisingly I only have lower back pain when I lay on my back for awhile. The doctors don't understand why I don' have more back pain. With the leg pain I can hardly walk. Thus the injections. They will again consider doing surgery if the back pain increases. Thank you for the suggestion to have tests repeated.

Thank you for following my post. I also have arthritis in my back, right hip, and knees. I am having total right hip replacement in six weeks. I have bursitis in that hip which I feel in my groin. That pain is horrible. I complained about it for a year and not one doctor listened until the hip pain started. After an orthpedic surgeon looked at my xrays and MRI, he spotted the enlarged cyst immediately. If you feel pain and no one listens because you have chronic pain, don't give up until you find a doctor who will listen to you. I suffer needlessly, but it will finally be relieved with my surgery. Thanks to you who listen.

@cak11555 Another cause of leg pain can be if your pelvis is out of alignment or it twists. That causes a nerve compression between major muscles where the nerves pass to your legs through that area. Some people get issues with the SI joints being unstable when muscles don't hold everything in place. I've had my pelvis shift and cause leg pain mostly when I was laying on my back. I've worked on my core strength and stretching what needs to stretch, and it solved that problem. You could get a physical therapy evaluation for your body alignment and see if that also happens to you. Also when you are changing positions, if you have vertebrae that slip (like backward when you lay on your back), that could also explain pain if it happens at the levels of those specific spinal nerves. Sometimes an MRI is completely different standing vs. laying down. I don't know if the doctor will pay attention to a muscular alignment issue when he's looking for disc problems, but you could bring it up and ask.

@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.