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Full Body Neuropathy Pain
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Full Body Neuropathy Pain

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

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17 Comments Post a Comment
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Avatar_n_tn
I just remembered I had all the tests for B's, B-12, etc. I also had brain MRI no tumors, proteins checked and all such as that.
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1079947_tn?1256054360
I have a similar problem with all-of-body-neuropathy. I've had the problem in gradually increasing degrees for a long time, mine is caused by undiagnosed pinched nerves in my neck, when I say undaignosed - it's ONLY taken doctors 22 years to see that I have pinched nerves in my neck despite me complaining about the pains for 22 years and despite the fact I had a car accident 22 years ago that resulted in me suffering whiplash for many months.
God bless Australia.
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1649401_tn?1301470329
I have had muscle & joint pain -- and overall feelings of having the flu -- all over my body to the point where it became disabling.  Upon numerous tests, the doctors could find nothing wrong.  However, I am a diabetic and have had foot neuropathy for many years. What I discovered was that when I kept my blood sugar within the 90-120 range, the pains subsided. When my blood sugar went above 120, the pains would begin to come back. At times, when my blood sugar was 300+, the pains all over my body were so severe I could hardly get out of bed.  This experience has been an incentive for me to keep my blood sugar down to around 100 day and night and this entail constant testing/monitoring of my sugar and use of short term acting insulin 4-6 times per day in addition to using long-acting insulin at night and in the morning.  

My pain was not of a burning sensation as you describe but more of a severe ache, shooting pains and overall weakness as if I had the flu.  Good luck with your case!
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Avatar_m_tn
Hi,

I have the exact same symptoms! My whole body burns ALL of the time, even inside my throat, my eyelids, and especially my chest.  I have to keep ice packs on my body almost all of the time.  I can't sleep without taking several pills to get to sleep because the pain is SO bad.  It began just after a car accident where I broke my hip and, over the past seven years has gradually taken over.  Like you I have been to numerous doctors, had tons of tests, and tried lots of medicine.  I see your post was from 2008, are you any better or worse?  Thurman, Lynchburg, VA
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4159104_tn?1350427218
  I was diagnoised with peripheral neuropathy several months ago and have lesions on my body that I thought was mesquito bites.  I naturally scratched them because I have always had a very sensitive reaction to the bites.  These lesions are taking forever to heal, are very sore and painful.  I am taking 800 mg of neronton twice a day, my vitamin D level was low so I am taking 50,000 iu of Vitamin D twice a week for two months.  I have had a Vitamine B 12 deficency but was able to get it back to normal.  I am stumped, with these symptoms.  I have severe cramps in my legs, abdomen, back, feet and hands especially my fingers.  Is there anything else I need to know or do about this and is it going to be permanant?  I am 70 years and have always been in good health.
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Avatar_n_tn
Okay, I want to jump on all of this. First, thank God someone within just a few months posted here and I found this old post still has followers.  I posted on Med Help several months ago, but no one answered by cry.  I too am a suffer, but my twist is not only is it systemic (toes, legs, arms, back, fingers, face, eyes and even top of my head, mine is worse in my vaginal area!) I wake up every morning to the feeling of something crawling in my vaginal area.  I have had all STD testing done, numberous times, all negative.  Like all of you, all Blood tests come back that I am healthy as a horse.  The other spin I have is my tinnitus is off the charts.  Right now it sounds like a high pitch sound you hear when you go for a hearing test, can not put my finger on the exact word to use for what it sounds like.  I have refused any medication, not that I am a masochist, but I fear it will interfere with blood testing.  I have been advised by the physical therapist I saw to ask for a spinal done, but my Dr says she has no idea what we should check for if she did have spinal fluid drawn.  I am hoping to get a referal to the Mayo Clinic in Scottsdale, it was the last thing the neurologist mentioned.  He said I have poly neuropathy, which generally means I have neuropathy all over my body, but her refused to do anymore tests.  I have been told to see an infectious disease specialist and/or a rare disease specialist.  I am in so much pain, mine is not just burning, it is pins and needles, stininging, tingling and then followed by itching.  I have forgotten what it feels like to feel normal.  I cry a lot, it is my only help, other than when I can get to sleep.  This is no way to live.  We all need to stay in touch and let others know what we find.  Support is so vital.  I wish all of us the gift of finding a good Dr and a diagnosis..D
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Avatar_f_tn
Have you considered that you might have Candida?  I have the exact same symptoms and I am convinced it comes from yeast....testing for it is difficult, but the best testing is from the stool - not blood tests....Yeast is a fungus and difficult to treat...one of the best methods is 1 part baking soda with 3 parts of organic maple syrup (yeast loves sugar) place it in a pan on the stove and cook over low heat, so it binds....so the yeast is drawn to the sugar, and the baking soda destroys the yeast...I just started taking this, so I don't have results yet. It's worth a try...also, check it out on google.
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Avatar_m_tn
Me too!  Full body all over burning tingling debilitating pain.  When I wake up in the morning my whole body is buzzing and burning, including my head, which feels like it's in another dimension.  I test negative for EVERYTHING.  I don't think this is peripheral neuropathy.  It's much more serious than that.  And I have these attacks sometimes that include tremors, electric shocks like lightning through my brain, severe cognitive difficulties, and too many other things to list.  Yours is the first account I've read that is similar to mine.  Please let me know if you learn anything, and I'll do the same.
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Avatar_m_tn
have you ever read up on morgellans? do you have a lot of shiny shimmers all over your hands in the sunlight? have you ever taken cipro or levaquin? I am stinging from head to toe after 4 scripts of levaquin that seemed to blow my entire sensory nerves out.. I am literally out of my mind with it and feel like I am being electrocuted.
***@****
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Avatar_m_tn
hi I am the exact same way could you pleaseeee write to me at ***@****
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Avatar_f_tn
I have same issues - burning stinging sensations all over body from head to toe and feel my body breaking down due to it. All tests negative, severe hair loss, rashes, uticaria, itching like something is crawling on me! It feels like something is in me and causing me to be allergic to everything. This all happened shortly after delivery of my first child. Please post if you discover the cause of all of this
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Avatar_f_tn
I have this same thing head to toe tingling and burning, it has stopped me from living a normal life. I also have been tested for everything, no help at all. I AM ON LYRICA WHICH DID HELP AT FIRST BUT IS NOW  not working anymore, I am also on cymbalta and pain pills and now paroxtine even with all these drugs I am sitting here tingling and burning. I cannot live like this its just awful. The only way I can sleep is with sleeping pills. They have said neuropathy, fibromyalgia but there is nothing they can do for me, there doing the only things they know of to do. If anyone comes up with a different answer please let me know
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Avatar_f_tn
  In looking at all of the posts, a common theme is that the medical community does not know how to treat full body neuropathy.  That leaves a lot of people, me included, out there with no help.  My neurologist said the technology just was not there yet.
  The same is true for fibromyalgia.  The best they can do is try to manage symptoms, but the medical community just does not know yet what it is.
  I happen to have severe fibromyalgia and full body neuropathy.  I burn all over, along with the full range of symptoms that accompany fibromyalgia.  I have been told that everything I experience is a symptom of fibromyalgia.  
  Fibro is relatively rare, meaning a small % of the population and most women.  However, the full body neuropathy crosses gender lines.  So, it cannot be just a symptom of another syndrome the medical community does not know how to treat.
  It is very uncomfortable to feel like you are on fire 24/7 and discouraging to know that the medical community cannot help you.  It does not really show up in some testing.  My fibro doctor says I have small fiber neuro. and my neurologist says I have mild large fiber peripheral neuro.  
  I have been tested for all kinds of things, like so many of you, and nothing shows up on any test known to man at the moment.  Yes, they can do skin tests for small fiber and nerve conduction for large fiber.  But, that does not determine the cause.  They can tell you only that you have it.
  My fibro. doctor says the condition, fibro and the neuro., are permanent conditions.  I am 69 years old and I have no idea how long I have left to live with it.  It doesn't kill you, but it certainly can diminish the quality of your life.  
  It requires a lot of adjustment in what you do and how you do it.  It seems to me that in the end, you have to keep up with your own research into these matters and experiment a lot with what makes you feel better.  It won't be the same for each person, as we are all different.
  I take high doses of gabatentin and it just keeps me mobile.  Without it, I'd be a cripple.  I take some other things as well and I am of the opinion that all of the medications that address nerve function can cause a whole host of symptoms of their own.  
  My neurologist said that the effect of gabapentin in the body is like alcohol.  With high dosages, it is no wonder I am clumsy, off balance, memory problems, etc.  It has caused other problems in me as well, which they can write off as fibro. symptoms.  It is rather like going in circles.
  For all of you out there who suffer from this kind of neuropathy, I extend my heartfelt sympathy.  I know where you are coming from.
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Avatar_m_tn
Anyone thought of post viral syndrome?  I was diagnosed with that and have had similar symptoms
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Avatar_n_tn
I know how you feel. I have been burning up now for 5 months and it us getting worse effecting more parts of my body. Neurologist saying its neuropathy prescribing cymbalta I've started taking shall. Rose with no success. Going to try acupuncture as drugs not something I want to be on and from what I read not very successful. Cannot believe this is happening as I'm a very healthy 65 year old woman who has led a very active and pain free life until 5 months ago when I began having burning tongue and it quickly turned into this nightmare. No one I know had ever heard of such a thing so it helps to hear your story and that I'm not alone. I certainly feel for all that are suffering with this. Very disheartening to think this is permanent.
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Avatar_n_tn
I burn too and know how disheartening this all is where md after md have no good answer just a lot of different meds to try. I noticed after I went for my walk/run this morning the burning was gone for few hours. Exercise must help. Hoping acupunture will too. This is horrible and depressing.  
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Avatar_m_tn
Do any of you suffer from stress?  I have the exact same symptoms and everything comes back negative too.  I do have a lot of stress and I want to know if this would be a possible cause.  Also, I am diabetic and I'm wondering if we all have this in common too.
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