Hello Cheryl (@clghanimo) - welcome to Connect. I'm sorry you are in such pain. You have come to a great place for finding answers from others with similar health issues.

I'm tagging other Connect members @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus (EBV), and I'm hoping they will be able to offer some more insight.

Also the Mayo Clinic website has some information on EBV: http://mayocl.in/2iYRh3v

Have you had any other tests done to help you determine if there are other issues causing your pain?

John

Hi, Cheryl. I am oldkarl. I do not know if you are in the right group or not, but anyone who enters must be in the right place. All of us have been through some version of your problem, so you must be in the proper place. Here, you well receive a lot of suggestions of where to look for answers, and it is up to you and your docs to decide which fork you want to try next. Remember, it is your life. So let me make a suggestion which might point you toward a rather rare disorder. I have been diagnosed with everything you mention, and many more things. But the one which seems to be most likely to come to the top is some form of Amyloidosis (see https://amyloidosis.org) It is a disorder of protein breaking up, and then making chains which form fibrils (tubes) which get between normal cells in any body tissue; bone, nerve, muscle, hair, GI, cardiac or whatever. One of the things it does is to get into the spinal column, then begin to press these tiny fibrils against and between the nerves, muscles and bones of the spine and cause horrendous pain or even light pain. I have this form, and it can be traced back about 125 years in my family, and according to genealogists, back to the Vikings from Finland and Iceland. There are about 15 in my family I know of, including several with dementia, Multiple Myeloma, Crohns, etc.. Anyway, it is not an easy diagnosis and may take years to DX. However, the place to start is with a serum Free Light Chain assay and Urine protein assay. If there is any protein that shows up, you have some sign of it. However, you may not have enough of a show to cause you any problem. But Medicare will pay for these tests. It is always best to work with experienced labs, such as Mayo, MassGen, Stanford, etc. You can have blood and biopsy samples sent to Mayo, Stanford, others for anylysisis. Actually don't have it, as only about 10 out of 1,000,000 get diagnosed each year. But it is always fatal, so it is best to treat it if you can. Educate yourself with amyloidosis.org, Mayo, Sloan-Kettering, Stanford, Cleveland Clinic, MD Anderson, etc. We will try to help you in any way we can.

@clghanimo

Welcome, Cheryl. We all share one thing, that being chronic pain, wherever it happens to be. Most of my pain is from peripheral neuropathy, with another type of pain in my brain, which predates the neuropathy pain. So, I follow a few other groups, mental health, neuropathy, depression and suicide. My prayer for you is that you'll find the cause of and treatment for your own pain.

Jim

Have you seen a Rheumatologist to see if you might have Fibromyalgia? the roving pain is typical with Fibro. You might also do some research on Central Sensitization as there is a link with Chronic Pain. We hear you!