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Me entire body burns

JohnnyToledoJJohnnyToledo Posts: 36
edited 03/15/2015 - 4:43 AM in Chronic Pain
Sorry for the vague title, but its true. Both arms (deep in my elbows and wrists), both legs, neck, my back, and my ribs burn almost 24/7. It hurts most when sitting. I was diagnosed with 4 herniated discs (2 in my thoracic and 2 in the lumbar) but not deemed bad enough to operate on. However, in the MRI report it mentioned compression of the spinal cord at the thoracic level. I only experienced minor back pain for the first year. Then, out of nowhere, my right arm starting burning so bad I'd rather have it amputated. Every time I would participate in an activity, even minor, that used my back from this point forward, another limb would start burning constantly.

I got to the point where my entire back, right arm, and right leg burned, but the rest of me was fine. I wanted an RFA on my upper back and my doctor was hesitant because he saw myelomelacia mentioned on my MRI. I went forward with it anyways. This was 3 months ago. Ever since the ablation, my neck, back, both arms (deep in my elbows and wrists), both legs, ribs, and sometimes even parts of my face have been on fire. Death by fire would be preferable to this.

My Pain doctor put me on neurontin and I was a feeling a lot better. Last week, I did sit-ups (using my back of course) and this week I am back to 24/7 agony. The doctor upped my neurontin dosage but it hasnt helped. I've seen neurologists, neurosurgeons, orthopedic surgeons, rheumatologists...you name it. They all insist that since the herniations are not on the cervical level, my arm/wrist pain cannot be due to the herniations or spinal compression. Yet, I was doing decent on the meds and I do sit-ups ONE TIME USING MY BACK and my symptoms are back full swing. I love how the doctors say one thing yet I know they are completely wrong. Has anyone had a similar experience ?
John Calderaio


  • I have a thread going with something similar. My husband has all over back pain, but he also gets this feeling several times a day in both arms and both legs. It's gotten progressively worse in the past two months from one limb to all. This is how he described it to me : it feels like I've been lifting weights for hours, and ran a marathon, and am floating in water that is way too hot. Burning hot.
    It seems to get better when he lays on something hard so he's been sleeping on the floor. However, like with you, tho his discs are bad and he has been diagnosed with spinal stenosis and degenerative disc disease, nothing is bad enough from mri and xrays to operate. He's upset about that because they take mris in the position he's most comfortable, so maybe they aren't showing what happens when he sits or bends, which is usually horrible for him. We go in for an EMG thursday. I hope you both find answers soon!
  • Lyssa, I am so sorry about your husband. I know this is affecting your life greatly, and of course your husbands. Ask the doctors if he can get on neurontin in the meantime - it helps at least a little (although my IQ seems to have dropped at least 30 points :) ). I have a sneaking suspicion that what I am dealing with is myelomelacia. I am seeing my orthopedic surgeon yet again today and I'm going to ask for a myelogram. We can do this. Please keep me updated.
    John Calderaio
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    Your body feeling like a bad sunburn in winter can be the signs of small fiber neurapthy beginning . See what the EMG says as it only picks up large fiber nerve damage. Don't know if seeing a neuro but doesn't hurt to ask about small fiber neurapthy after you read about it and see if it's familiar to your issues.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Thanks Johnny. It's taken a toll on our family for sure, as I'm sure it has for you. I'm starting to worry about depression issues with my husband, which I totally understand. He's in pain constantly and no one can help. Ive heard depression is a fairly common thing to go thru with any serious medical condition. Especially when active men can't do everyday things, I mean How would you not get depressed? Have you been dealing with that too?
    I think after our EMG Thursday I'm going to request a referral for a neurosurgeon as a second opinion. Myelomalacia is sounding more and more like what we're seeing. Thanks for the tip on Neurontin too! We'll keep you updated. I hope you get some forward progress at your appointment today!
  • Ohhhh yes. I have been very depressed. I am 28 and still in school. I think about dropping out, worry I wont be able to find a wife who will deal with my pain, etc all the time. Does your husbands MRI show compression of the spinal cord at all?
    John Calderaio
  • Sorry to hear that you're dealing with depression. Mark and I are both in our early twenties and we have two kids. He's getting depressed because he's worried about what he WONT be able to do with them if this all doesn't get better. I'm going to tell you the same thing I'm telling him. Please don't worry about what you can't do. Relationships, good, positive, loving ones, are built on what you bring to it, not what you don't. Like with him, he's still the same fantastic guy. He just can't play football. Can't go running, can't swing his kid around, but those aren't reasons I love him in the first place. I know depression isn't as simple as it sounds. I have it too and am medicated ;) But this kind of thing doesn't have to limit you guys from happiness or positive relationships.
    Well the neck and low back ones only showed that his spine was a little narrow. We're still waiting on midback. We find out tomorrow
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    Lyssa, those are not the reason our spouses love us but sadly many of those things we could do are reasons we love and value ourselves . Curse of being a dude but how you see yourself often way different than how others do. Surely not easy and an everyday battle, but telling him all those things definitely helps
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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