I understand all to well,,, I know the type of situation you're in & I feel for you. I'd be in the ER screaming & crying in pain had my problem gotten that severe, which I suspect is what happened to you. I bet you were sent home on a number of occasions with a useless referral to yet another psychiatrist. That's all well & good except for the fact that psychiatrists can't treat severe physical pain w/o messing with your mind in doing so.
While it's true that rheumatologists generally test for lupus, it's also true that almost all specialists can refer you to another in order to get you a specific test/s, then have the results sent to themselves, keeping you in their care. My new & amazing endocrinologist did just that & because he took on the roll of my orthopedic specialist, I was finally diagnosed with the rare genetic bone disease called, "osteogenesis imperfecta". I'm not saying you have my rare disease but rather the amount of options you have & probably do not know. I've been having problems with my health for over a decade & am on Medicaid which makes things even worse, so believe me when I say I'm familiar with the games doctors & hospitals play. My favorite doctor who was my general practitioner for a decade told me that a lot of doctors/hospitals will only do so much & go so far for Medicaid patients. They see Medicaid patients as a drain on their income & therefore refuse to do what needs to be done because of the cost. Course they would never acknowledge it, which is why Medicaid patients get tossed around, sent back & forth between doctors who "can't help" or "don't know" or "think it's in your head" or "need to send you to a doctor who specializes in that area" just to get you out & away from their office & care.
That being said, my suggestion to you is this:
* get a second opinion from a new specialist in a new office & make sure NOT to tell them you want a second opinion. When doctors hear about the first opinion, they more often than not, repeat what the first doctor said or at least read the original report & it influences their judgment & you end up with the same or similar result.
* make a list of questions & symptoms to give to your new doctor at first visit. keep a copy for yourself.
* write a journal for a month if not longer. Write down the date & time of any symptoms, both physical & mental. Bring it to your doctor appointment.
* politely insist that your needs be met & demand if needs be. You must be relentless in your pursuit.
* I believe you have a nerve or spinal problem. Again, I'd see a neurosurgeon for it.
REMEMBER, when you go to get your second, third, or tenth opinion, do not reveal any of your previous test results or doctors you've been to. It may be tedious going through all those tests again, but it'll be worth it. Pretend your problem is brand new & then when your new doctor comes to some kind of conclusion or diagnosis, you can reveal your history.
GOOD LUCK!!
Sounds like what I have except mine comes in invisible patches 10in long & 2in wide that feel so cold, numb & like they're on fire. It's extremely painful. They would stay for days, sometimes weeks but would eventually go away. Opioids were the only med to help with the pain, until they started to contribute to it. I was also diagnosed with neuropathy. It started a year ago or so after my car accident. My nerves were spazzing out due to what I believe was my seatbelt. I took Gabapentin for it & that didn't work. Eventually they stopped, for the most part. I find they are worse during the cold, winter months. Like you, I also have fibromyalgia. Have faith, your nerves are spazzing out like crazy... it's not mental. If you've injured yourself anywhere on your body, it may have touched the right nerve which is connected to so many others. Stress, lack of sleep, malnutrition & cold weather can make it worse. I'd try a med for anxiety or melatonin with L-theanine, however I'm not a doctor. Hope this helps or at least gives you comfort. You are not alone my friend. Best wishes!