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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
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
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.
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.
1 Comments
Have you ever found out what is going on? I have the same symptoms. Please respond.
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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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
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
1 Comments
Hi I'm exactly the same, with the same medicines. It's getting worse and I also can't work anymore, very depressed, can't sleep, etc. Have you found something to feel better ? Thank you.
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