Full Body Neuropathy Pain

[Seeker4help]

To Whom It May Concern:

I have had Neuropathy pain all over my body for 4-5 years now. I burn from the top of my head to the bottoms of my feet like massive sunburn. When I sit or lay down it feels like you are lying on a sunburned body. This came on gradually over about 2-3 days when it started. I even burn down my throat at times and sometimes even my eye balls and eye lids burn. Most of the time with medicine I don’t have the burns except on my back. The sensation there feels like I am leaning on a warm heating pad any and every time I sit or my back is up against something. This is not like a sunburn it is a very warm feeling.

When it first started I went to my medical doctor and he referred me to a Neurologist. Over a year or more period I had over 30 some blood works. Numerous different times of doing 24hr urine tests. I was testing for about everything imaginable, Lou Gering disease, MS, all kinds of muscle diseases. I had needle probes stuck in me all up and down my arms and legs hooked to an oscilloscope type machine. I had electrical probes all up and down my arms, legs and muscles to make the muscles jump. I had spinal taps on two separate occasions. At the same time I was going to a thyroid doctor who checked for diabetes, and many other maladies, checked my thyroid through many tests over many months including swallowing a radioactive pill and then waiting 24 hrs to come back for a scan to see about my thyroid uptake. Body scans for any cancer or tumors or anything that might be causing the burning. I was given Topamax medicine which helped some. I was also given some kind of medicine called something like Neuroprin, (unsure how to spell it), or something like that. (I would wake up in the middle of the night and see large white blobs on the ceiling) -it was making me see things so I quit that medicine. I was also taking Amitriptylin 25mg about 6 or so tablets a day.

After all these labs, examinations, etc. all of them came back negative, meaning that I was healthy and nothing could be found causing the burns. The Neurologist finally said he believed my high blood pressure had caused it. (My general practitioner and later another Neurologist said they had never heard of such a thing). I later went to another Neurologist a couple of times with some tests but nothing found. He later quit using my insurance company so I had to quit seeing him.

I kept taking Amitriptylin 25mg daily and over the years weaned myself to ½ tablet a day which held down the burns well for a couple of years or so, with a slight flare up rarely for maybe just my arms for an hour or so. I did this because the medicine makes me so tired. Cutting the amounts keeps from wanting to sleep all day and having to just push through the day. I do know that eating chocolate sometimes brings the burns up a little. Also, if I suddenly let fear grip me and I have an adrenaline  dump for a few minutes, I can feel a little surge in the burns but all of these mostly in the back gound. In other words I just forget about it. Also when I get under a lot of stress or if I am concentrating real intense, say doing some research on something, the burns will come up a little in the back ground.

Here in the last 2-3 weeks though, it has flared up for a day at a time, skip a few days and again flares up. These times I say are in the fore ground. It impedes me in things that I am doing, say just sitting and reading is fairly painful and I am constantly aware of it. I upped my medicine to a whole tablet and that helps some days. I was also concerned that maybe I had gotten a bad batch of Amitriptylin somehow from my required mail order insurance medicine company. I know that there are defective medicines and counterfeit medicines been introduced into the regular medicine supplies, but I have no way to check the medicine to find out.

What I want know is, is there anyone out there who has every heard of such a case? Not just arms or legs or feet but all over the body. My first Neurologist said I could not be burning on my head. He said if I was burning on my head, I would be dead. I told him I must be dead then.

Is there a doctor out there who can help me? Not just treat the symptoms but the cause? I would deeply appreciate any help you could give.

Thank you Seeker4help

[Hawk480]

Try Voltaren Gel and oxycodone

[silhouetteartist]

I also have the burning all over except for the back of my head. Fortunately, it isn't too painful and I can ignore it. I've had peripheral neuropathy for about 20 years. I have 2 cousins on my mother's side and one on my father's side who also have peripheral neuropathy and none of us has diabetes and tests have found no cause so it is either idiopathic or inherited. It started in the feet, by the time it reached my knees, my hands started and eventually reached my back and then front of my torso. I asked my neurologist who said it would progress until the entire body would burn because the peripheral nervous system covers every surface of the body. The sunburn sensation on my back is the most difficult to deal with. The needle jabs have become less frequent (used to be about 10/minute but now only 1/ hour). Topamax did not help and my first dose of 1/2 pill Neurotic produced a severe instant allergy attack that landed me in the hospital (the only thing that I have ever been allergic to). The condition is not fatal so it's best to try to keep your mind occupied elsewhere so you can almost ignore it.

[Dashed]

Same here elknutz, sweating for no reason, and the clumsiness is coming on some days, but may be just a side effect here, I don't know.  Progress of mine is identical to sillhouetteartist's, but now it's in my ears is hardest place yet to get used to it.. and there is nowhere else it doesn't already affect, from eyelids to spine, groin and whole pelvic area.

[Burpinchunks]

Chiari Malformation - that is what it was for me

[terrence1964]

I have the same body  wide burning its horrible, some days are better than other days, today is one of those bad days. Biopsy came back inconclusive. Its in my mouth tongue, scalp ears both sides of the face.

[Burpinchunks]

Chiari Malformation

[Imangelforyou]

I also have the burning throughout my whole body.I just woke up one day after being healthy and couldn't walk. My husband took me to the emergency room and they said i had DDD with sciatica down my right leg. I was given meds and told it would go away in a  couple of weeks. Were going on 10 years and the pain is worse than ever not to mention the pain is in my right thigh and its a severe burning.I also have the burning throughout my whole body.I am exhausted all day and was diagnosed with a sleeping disorder right after this. Also if I eat certain foods i fall asleep no matter where we are like pass out sleep. If anyone else wants to trade stories please email me ***@****

[elknutz]

Over the last few years I have went from a strong 56 yr old to a clumsy old man.  I am not diabetic, feet are numb, legs up to my knees the same.  I have pokes in my feet, legs, torso, groin, face, eye, tongue and arms.  I do have some good days that I cherish!!  My biggest complaint; my body overheats very quick with only mild walking or doing chores around the house I break out in a sweat.  I can also overheat drinking coffee or having a hot meal.  I am taking 1800 gabapentin and cymbalta at night.  When I'm bad, this does not even touch the pain so I have many sleepless nights and miserable days trying to stay at work.  
Does anyone else have the problem of overheating?  How do you cope with it?

[SueW77]

Yes! This happens to me just like you described. I get so hot and sweaty from the least exertion and my face gets beet red, except for right around my mouth, which is pretty embarrassing. I've been on too many drugs to count. I recently tried CBD oil and it seemed to lessened my burning pain; then I ran out. I'm in the biggest flare that I can remember since this all started abruptly 15 yrs. ago. I order more CBD online, but it's taking me forever to get it.  I've avoided taking this for a long time, thinking it would make me high, but it's strictly CBD, no THC that causes hallucinations and paranoia.

[Deel416]

I am living this hell right now.  It just started about a month ago and I have had every test under the sun. I am only averaging 2 to 3 hours of sleep a night which doesn't help much.

[Dee1956]

If you all want to contact each other you click on the person's name, in the upper right hand corner of that page, you can send a private message to each other. Good luck!

[WillowLily]

Thank you for the input, I haven't had much response from direct messaging. Forums seem to get a quicker response but maybe that's just me :(