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Burning feet, but not diagnosed. Can anyone give me some insight?

Hi everyone! So for about 4 years, I’ve developed a burning sensation which started in my feet and is now up to my knees. My thighs have a buzzing or trickling of cold water type feeling.

Labeled as fibromyalgia, but my symptoms don't quite match up

I’ve been to numerous doctors and they have only scratched their heads and looked at me sideways. My new family doctor has labeled it as fibromyalgia, but after speaking with several others with fibro, my symptoms don’t quite match up to what they feel.

My symptoms

Here are some of my symptoms:

  • Dizziness/vertigo

  • Burning feet

  • Trickling feeling in thighs

  • A fuzzy sensation sometimes shoots up the back of my skull and the odd time across the back of my shoulders

  • I have a feeling of heavy legs

  • Poor balance and sometimes my knees seem to give way and I sometimes come close to toppling over

  • My thighs are 75% numb down to my knees

  • Extreme fatigue

I do not have any vision problems. I have not lost the use of any of my limbs from numbness or any loss of control. I have ABC MRI coming up in June. So far none of my MRIs on my spine have shown up anything at all. I do not have any arthritis according to my rheumatologist and basically any of my bloodwork/urine tests have come back completely clear.

Medications that relieve my pain

The only thing so far to help relieve my pain and help my balance are: medicinal marijuana (both thc oil and dry flower help me); I get weekly injections of “bupivacaine” (about 75 injections around my nerves up my spine, neck, buttocks, front hip area); and I am on cymbalta. Otherwise, without these medications, I am in enough pain and stiffness that I have to sit in a chair all day.

Simply looking for an answer

Can anyone give me some insight here? My doctors do not seem concerned about MS but I want to explore the option as I feel some of my symptoms are worse than any fibro details I’ve spoken to anyone about. Please help, any input is welcome, and at this point, after all these years I’m simply now looking for an answer. Help!

  1. Hi scottW
    I can only share my own experience which is a burning/tingling sensation, I get this in my legs and arms, it can feel like being on fire.
    The Neurologist said it was neuropathic pain. I take Gabapentin for it which helps calm it down to a tolerable level. Other similar painkillers prescribed for this are Pregabalin, Duloxetine, Amitriptyline. It might be worth asking your doctor if you could try one of these to see if it helps. Ordinary painkillers are ineffective against neuropathic pain.

    1. Hi shadow66
      Sounds very similar to my legs and feet! My hands have only recently begun to tingle on and off, but my feet are always burning.
      My doctor gave me some tremadol but that doesn’t do much other than give me energy. I have tried gabapentin and duloxotine both didn’t do much for me. So far the most noticeable medication to manage are thc oil (microdose) and cymbalta. I am now also, as of today starting Naltrexone which can be used to manage pain.

      How did your symptoms start and how did you finally get a diagnosis ?

    2. I can only relate to the burning as if I am putting my lower legs in a pot of boiling water and just leaving them.

      My hands I just have the numbness and not much ability to open a jar or carry a cup of coffee. I really dread the day my hands and arms will go in that boiling pot.

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