I’m curious if anyone has similar symptoms?

mathqueen, this is a blind guess https://connect.mayoclinic.org/discussion/living-with-fibromyalgia-introduce-yourself-meet-others/ It does really sound strange and terrible. I hope there will be relief for you.

@mathqueen @gently
I'm sorry to hear what you've been through, and also with no way to understand or treat these disabling symptoms.
I'm glad you checked back with this support group.
I was thinking fibromyalgia too.

I have lived with other chronic autoimmune illnesses, I'm a cancer survivor. But the pain and discomfort of living with fibromyalgia cannot be believed. Add to that the confusion and denial by providers, especially pain providers, makes it truly challenging.

I'm told there is more understanding and treatment than there was years ago. It's worth looking into. As for nothing helps: there were years that the only thing that helped me was to rest in bed. The other things that have always helped me cope: creativity and whatever spirituality you have.

Please let us know how you are doing!

I don't know, but it sounds very similar to what I've been experiencing and I'm now 69 and was OK until about two years ago when I had started having some tendinitis in my ankle, but I now also have developed swelling in my ankles and pain all over the my body nerve pain and muscle pain and bone pain so much that kind of had to give up most of my daily activities. I was also had numerous injuries that keep happening to me, stumbles and trips, and that hurt me. I was also very fit and active. in the the recent week. I almost can't walk anymore and pain in my heels. My feet are hurting me so much and would be strange to suddenly have full plantar fasciitis on both feet. I do not like my shoes but still does not seem to account for burning and pain and eligibility to actually tolerate much of any position. I've also had only minimal finding that would explain any of this. I have some arthritis and I have some tendinitis related things and I have about their process but no doctors really been able to explain why I have this chronic pain and for me a lot of things make me dizzy a lot of medication that is recommended. I also get dizziness at times.
I'm also kind of looking for other others to see how they managed with these kind of strange conditions. I pray for both of us.

I also have nerve pain over my body. It started 2 years ago. I've had many tests from a Neurologist, and many more things, but no answers.
I had lumbar decompression surgery last November which left me worse than before. Now they are saying I need that 2 day 12 hour lumbar spine surgery. I am desperate and have tried everything else. I'm also tole the surgery would only correct my lower body if at all. When I asked the surgeon about the nerve pain in my upper body (tongue, chest, stomach, hands, etc.) he just shrugged his shoulders. I'm glad to see a thread about total body nerve pain. I take hydrocodone several times a day that just takes the edge off.
I'm in bed a lot and my quality of life is low. Any help?

Prayers to you all!! I had back surgeries because of spinal cord being saved in on and the pain was extremely bad and I got so I couldn't walk. It helped a lot!!I have chronic pain in many areas on my body and also many autoimmune diseases plus Fibromyalgia for more than 30 plus years.. several mild ischemic strokes as I have Connective Tissue Disease too. Life is a struggle for sure!!

So we have nerve pain, all kinds of pain affecting quality of life. @taylor05 "Life is a struggle for sure!" Thinking of all of you. I hope there are many more comments with some who can shed light on what you're going through.

THANK YOU and You and everyone else!!

What a story—so sorry for your suffering and pray you get relief ! Have you considered acupuncture ? It can help when other things haven’t worked…beware of too many different meds, or unproven supplements..also, an osteopath might provide help. Best of luck to you and this whole group seeking and seeking to solve painful problems .

Thanks for all the supportive comments! I have tried three acupuncturists and work with an osteopath every week. The osteopath is stumped.
I have an appointment in a month with the Complex Neurological Symptoms group at the university of California, San Francisco (UCSF) medical center. Has anyone had any experiences there? (It’s impossible to get an appointment but a neighbor pulled some strings)

@nycmusic
Yes and was told they would never help me having my whole body just about in pain. Crazy. I tried it anyway. Nothing!!
Thank you