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Burning sensations in random locations
Ever since my craniotomy in 2014 to remove a benign brain tumor, I’ve suffered from nerve problems like Occipital Neuralgia, Trigeminal Neuralgia, Geniculate Neuralgia, and Auriculotemporal Neuralgia (which my surgeon calls temporal intersection syndrome). My eyes hurt randomly when I move them. This mess hurts! Within the last two years, I’ve started getting nerve pain or spots of heat (not hot to the touch or even red to the eye, just burning sensations) in weird spots like the middle of my right butt cheek 😅, the tops of my feet, my thighs, and right above the arch of my right foot. The burning in my feet where the skin is thinner feels like an Indian burn we used to give each other as kids. A few minutes ago, I was standing when suddenly it felt like someone branded the side of my foot. I looked down to make sure I wasn’t standing on my foot or got stung by something. Nope, I was just wearing regular socks. Took my sock off and there you have it, red as plain as day. Oh, and now that burning is gone, so is the red. I have never had redness show in the areas where the burning sensations are; this is completely new.
Med history: I have a brain lesion on the periventricular area of my brain. I suffer migraines that are untreatable by medications and surgeries, constant dizziness, tingling in hands and feet, pins and needles, numbness that moves up my legs, random numbness in fingertips, night sweats, my left leg responds slower according to my doc, white blood cell count always high - practically all signs point to MS without an additional lesion or obands. Had I not had the craniotomy in 2014 to remove one, I’d be clinically diagnosed.
I see my neuro on Monday. What should I ask him to test for? I’m really tired of being told it’s conversion disorder or something similar. At this very moment, it feels like my body is attacking itself. My right leg is very tingly from the calf down to my toes. So tingly it hurts. Harsh pins and needles. I’ve got nerve pain shooting everywhere from my head to my toes. Left foot is now getting that painful tingle in my toes only. I wish I knew what this is. It is terrible.
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I have some of the same symptoms and my rheumatologist and eye doctor both suggested MS but my neurologist has never talked about it. I don't push it because I don't want to suppress my immune system. When it is disabling or life-threatening I will go down that rabbit hole. I do have one abnormal brain MRI, a positive test for autoimmunity (very abnormal ANA), paresthesias, facial numbness, dizziness and vertigo and all kinds of weird sensations, and also visual disturbances typical of MS. I had breast cancer but not brain tumor. (My kid had a craniotomy so I understand).
Who the heck is telling you that you have conversion disorder?
Tai chi and art have helped me in the past. My neuro really listened yesterday after I wrote a 3am portal message. I have seen him for 2 years since I woke up in 2001 with my arms and face on fire and electrical zaps in legs. I had a positive Lyme test and was treated for that for a few years. Have you had a Lyme test?
Right now my neuro is treating spinal stenosis in the neck. I can only handle 4 mg methylprednisolone so doing that for a week, with taper, and I am using Klonopin for sleep, maybe twice a week at low dose, to handle pain and sleep.
My neuro is definitely "less is more" and so am I. He tries to avoid imaging for me and especially surgery. If a week of low dose steroids plus Klonopin doesn't help (along with tylenol or flurbiprofen) then I will go back and ask for more of a MS eval. I always said if it got this bad, I would pursue that.
Last Sunday when I got up I had no balance and felt like I was being pulled to the left. It helps to have a doctor who doesn't treat these kinds of things as strange!
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4 ReactionsI am sorry you are going through this it sounds stressful. Have you had labs for neuropathy including immune system labs? Most neurologists are very comprehensive.
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1 ReactionSome of the people comments are familiar to me but I also sweat for no reason through out the day. At first I thought that I was going through menopause at this time of my life 70s. Never had it before nor my mother. It's unbearable for me. PCP doesn't know what to do with me. Lost feel like a idiot. Who can I turn to now. Suffering in silence.
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2 ReactionsLooking forward to hear from you.
oops I have been seeing my neuro for 22 years, not 2!
No not yet but have a appointment coming up with on. I will keep your suggestion in mind. Thxs
I have constant skin burning sensation on my upper legs, face, hands and abdomen. It feels like a sunburn. Just wondering if this is unique to me?
@2tnt, I moved your question to this existing discussion:
- Burning sensations in random locations: https://connect.mayoclinic.org/discussion/burning-sensations-in-random-locations/
I did this so you can read the previous posts and connect easily with other members. What do you do to relieve the burning sensation?
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1 ReactionThank you for moving it to the appropriate area.
In the past, my hands were the worst. When I had blood drawn (10 vials) it relieved the burning. It's been a while since I have had this done and the burning of this magnitude. I will be asking my PCP to run a lot of labs again and hopefully it will help with the burning and give us some insight on what is happening.
Thanks again for your help.
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1 ReactionI have that same sensation like a mild sunburn on arms and hands. I don’t seem to get any answers from any of my doctors.
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