Chronic Nerve Pain No Known Cause

[Purplegirl2]

I'm new here.

I've had chronic nerve pain in my legs since birth. I do not know the cause or any specific diagnosis. I get it randomly (sometimes every day, once a week, or even once a month, frequency changes). The pain is a deep burning, sharp, severe pain from my mid thighs to my Achilles heel but sometimes it stays around my knee area. It gets worse with hormone fluctuations, standing a lot, or when I'm ill but I cannot predict it. It can either be in both legs or one or the other. The pain can either stay mild/moderate or it can quickly become severe in a short time. It normally lasts for hours or even days if I don't make the pain go away with ibuprofen.

Does anyone have any advice on which tests I should request in order to find out the cause of the pain?

My doctors aren't super helpful but will usually order any tests that I request.

My neurologist ordered a brain MRI (his idea) but other than that I haven't had any other tests. I've already done the "treat the symptoms because treatment will probably be the same regardless of the cause" thing but the Lyrica I was on gave me bad side effects so I had to stop my 2 year course of that.

Maybe my treatment will still be the same (ibuprofen as sparingly as I can) but I've always wanted to know the cause.

I suspect it might originate from my back but I don't know.

Any advice is appreciated thanks.

[etheral]

An EMG may be helpful to determine any actual abnormalities in nerve conduction. CT of the lumbar spine might show areas of disc narrowing or other conditions that may result in nerve impingement. If present, this could be followed by a MRI to further delineate the problem. A full blood panel including a CRP and Sed rate as well as electrolytes and glucose would help to rule out systemic diseases. A pain clinic referral would seem to be appropriate. Best of luck in sorting out and getting some relief from your pain.

[Purplegirl2 in reply to etheral]

Thank you so much! I’ll talk to my neurologist about it.

[cyberbarn]

There are other conditions that don't show up in blood tests or imagining and that is connective tissue disorders like Ehlers-Danlos syndrome. So it might be an idea to have a look at the RCGP EDS toolkit and if you feel you have some of the symptoms to share it with your doctors. rcgp.org.uk/clinical-and-re...

[Purplegirl2 in reply to cyberbarn]

Thank you for the resources. I’ll take a look and mention it to my dr.

[Catr12]

I’m the same had nerve pain for more than 10 Years. Legs and ankles and my legs feel like lead. I’ve had 3 mri scans all clear. Tried a lot of nerve pain meds which haven’t worked. Hope you find something for yours

[Konagirl60]

I live with painful neuropathy in my ileum. It hurts to sit, lie down and lift anything.I couldn’t tolerate pain meds. All they did was sedate me.

I’ve found that natural supplements like Boswellia, Magnesium glycinate , Passionflower and Curcumin help along with Advil/ Ibuprofen.

I’ve never found full relief of my neuritis,

I hope you find answers.