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Burning pain, skin on legs

My pain started gradually. One shin, then both,thighs, tops of feet, and buttocks. It's agonizing to bathe, dress, sit etc. I've been to several neurologists, rheumatologists, it's been diagnosed as neuropathy /fibromyalgia. I've had a lupus test, had positive a and a but told nothing to worry about. Had a mri to look for ms, they found nothing in the scan. I'm not diabetic. I also have essential tremors, and waves of numbness and tingling through my body, dizziness, migraines, muscle spasms, hypereflexia.. The last neurologist I saw suggested its a mental health issue and there's no treatment.I found it dismissive and insulting. The pain is very much real. I've been looking for answers for years. If anyone has any advice, please help. Thank you.
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Avatar universal
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!
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I forgot to mention that I too had a positive lupus test. They ruled it out. It may be worth while to get another lupus test if you find nothing to ease your pain. A neurosurgeon would be the specialist to see for that. Good luck!
I've been to several neurologists. They said that only a rheumatologist can diagnose lupus and the two I've seen ruled it out. It wasn't so bad at first but after the years it has spread and hurts every day. I take it anxiety meds. I've also been on gabapentin, Lyrica, nortriptyline. Nothing helps. I get frustrated because all the doctors and specialists are at a loss for what is happening. I can't even put sheets on my bed because leaning on the bed to tuck them in just kills me. I don't like to get up after I sit down because getting up and down hurts so much, getting into bed too. My husband and children try their best to accommodate me, but I know they get frustrated too at times, because I "look well". If you haven't experienced it, it's so hard to understand.
Avatar universal
  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!!

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