I’m curious if anyone has similar symptoms?

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!!

@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

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?

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?

@susiesmith
Be very careful about having extensive spine surgery. The recovery is horrific and can make things even worse. I had T10 to S1 fused 2 years ago and I’ve still not recovered well enough to stand or walk more than 5 minutes.
Have you seen a neurologist for your symptoms? Neurosurgeons just want to cut.
Also, Physical Therapy over the long term can help. Be sure to be faithful about exercising between sessions.

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.

@bealillie - Try Kuru shoes. I have bone spurs in both my feet. I love Kuru shoes and I wear Birkenstock shoe too. Get some gel type heel inserts and I have some and it really helps to put them in my shoes. Have you seen a foot Dr. about it? Try a acupressure massage, that has helped me in the past. Try doing physical therapy, that has helped me. Try a Chiropractor, that might help the situation, as something may be off. There's also red light therapy, which might relieve some pain. I have some dizziness as well. I have CVID and also an autimmune disorder, Hashimoto's Thyroiditis. Physical Therapy can help with the balance issues/dizziness. Have you had an ENT Dr. look at your ears for the balance issues? You may have vertigo or Meineire's disease. Hope this helps you.

@calofmichigan I has spine surgery 6 months ago, nerves now a complete mess...injury after injury...cant recover either . Predominantly couch bound. Drs are poor at warning of risks sadly...

@anniesezu812
Yes, I’m 19 months post major spine surgery with two surgeries for SCI implant and removal in between. I’m just now starting to feel a little better: more mobile, less pain. Give yourself more time, say a year or two. I’m so sorry. I know it’s frustrating, but have hope and don’t give up yet. I don’t know how old you are ( I’m nearly 74) but with age, things take a lot longer to heal. I send you my prayers for a better life soon and acceptance of your new normal, whenever that occurs. You’re not there yet.