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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
FIVE, yes five years since I posted here and I'm still dealing with same issues. Here is what I do know...
I have been tested for Sojourns, Bechets, diabetes, hormone levels....sooooo many blood tests. Even went from where I live in Hawaii to Stanford CA, only to have them tell me I had neuropathy, NO, duh?
I saw someone posted about checking for Epstein Barr, which I am sure most of us have, since almost all children get this. When I first started having my symptoms I was checked for this and when it came back positive I was told it was an old infection. But, I often have wondered if mine went rogue. Talking to regular Drs. they will tell you Epstein Barr can not be the cause if it is an old infection, but I wonder if they are wrong. Wish I could find a Dr. who know more about this.
Also, Lyme has been brought up. Most of us will test negative, so what I have heard is that you have to go to a specialist who will do more extensive testing. This can cost $$$ since it is not a normal panel type test, so be prepared. But then what is the cost to find out about your health? I myself have not done this, so I am going to look into this.
I am sure all of us have had adrenal testing done, and if you haven't have this done. I know I depleted mine back in 2005 after a horrible divorce. So, this could be part of why I have the neuropathy. I have been told I have normal adrenal levels now, but what damage did I do all the time mine were nill? So check on yours.
I just saw a woman on TV saying that for over 40 years she had a condition which Drs could not figure out. She never mentioned neuropathy, but she said her Thyroid Antibodies were the culprit to her health issues. She said you have to have a TGppo.antibodies test done, not the regular THS, which most Drs test...so for all of you, maybe have this done, too. Hey, you never know.
As for me, a naturopath I met back in 2013 said he thought I had Oxalate poisoning. What?!! Never heard of this. So I looked up Low oxalate diet and BINGO...many of my symptoms were on a website called Vulvar Pain Syndrome, which showed up when I Googled Low Oxalate diet. Maybe check this site out and see if you have any of the symptoms listed. For me, going on a low oxalate diet has helped, but many of the foods we think are "healthy" will now be taboo...
I could go on and on about this, but just check out a low oxalate diet site and Vulvar pain and see what you think.
Like most of us, I have stopped gluten completely, no dairy (which the low oxalate diet has a lot of dairy in it, so you have to do what is right for you) no sugar, I do not eat fast food and eat out at a restaurant very rarely since I have no idea what is exactly in my food. No processed food unless it is from a health food store where I know all the ingredients are okay to eat.
STAY in as much PEACE as possible. I know, anxiety, stress, makes all of these symptoms worse for me. And, I am very serious...PRAY!! Prayer is amazing. I am a miracle survivor of a pregnancy I should have died from and so should have my baby, over 18 years ago. I was hemorrhaging so bad I went into a condition called DIC (look this up) I know the only thing that saved my life was a prayer chain started for me. I blew the DRs. away, they could not believe I lived and so did my baby. So pray, meditate, find support, join a church that is all about healing...What can it hurt?!
I send this with love and with Jesus in my heart to all of you. We all have to help one another and I believe the Lord told me to come back to this site and share what I can and maybe connect with some of you.
God Bless...this is a very hard journey we are all on.
Aloha...D :))
I have been tested for Sojourns, Bechets, diabetes, hormone levels....sooooo many blood tests. Even went from where I live in Hawaii to Stanford CA, only to have them tell me I had neuropathy, NO, duh?
I saw someone posted about checking for Epstein Barr, which I am sure most of us have, since almost all children get this. When I first started having my symptoms I was checked for this and when it came back positive I was told it was an old infection. But, I often have wondered if mine went rogue. Talking to regular Drs. they will tell you Epstein Barr can not be the cause if it is an old infection, but I wonder if they are wrong. Wish I could find a Dr. who know more about this.
Also, Lyme has been brought up. Most of us will test negative, so what I have heard is that you have to go to a specialist who will do more extensive testing. This can cost $$$ since it is not a normal panel type test, so be prepared. But then what is the cost to find out about your health? I myself have not done this, so I am going to look into this.
I am sure all of us have had adrenal testing done, and if you haven't have this done. I know I depleted mine back in 2005 after a horrible divorce. So, this could be part of why I have the neuropathy. I have been told I have normal adrenal levels now, but what damage did I do all the time mine were nill? So check on yours.
I just saw a woman on TV saying that for over 40 years she had a condition which Drs could not figure out. She never mentioned neuropathy, but she said her Thyroid Antibodies were the culprit to her health issues. She said you have to have a TGppo.antibodies test done, not the regular THS, which most Drs test...so for all of you, maybe have this done, too. Hey, you never know.
As for me, a naturopath I met back in 2013 said he thought I had Oxalate poisoning. What?!! Never heard of this. So I looked up Low oxalate diet and BINGO...many of my symptoms were on a website called Vulvar Pain Syndrome, which showed up when I Googled Low Oxalate diet. Maybe check this site out and see if you have any of the symptoms listed. For me, going on a low oxalate diet has helped, but many of the foods we think are "healthy" will now be taboo...
I could go on and on about this, but just check out a low oxalate diet site and Vulvar pain and see what you think.
Like most of us, I have stopped gluten completely, no dairy (which the low oxalate diet has a lot of dairy in it, so you have to do what is right for you) no sugar, I do not eat fast food and eat out at a restaurant very rarely since I have no idea what is exactly in my food. No processed food unless it is from a health food store where I know all the ingredients are okay to eat.
STAY in as much PEACE as possible. I know, anxiety, stress, makes all of these symptoms worse for me. And, I am very serious...PRAY!! Prayer is amazing. I am a miracle survivor of a pregnancy I should have died from and so should have my baby, over 18 years ago. I was hemorrhaging so bad I went into a condition called DIC (look this up) I know the only thing that saved my life was a prayer chain started for me. I blew the DRs. away, they could not believe I lived and so did my baby. So pray, meditate, find support, join a church that is all about healing...What can it hurt?!
I send this with love and with Jesus in my heart to all of you. We all have to help one another and I believe the Lord told me to come back to this site and share what I can and maybe connect with some of you.
God Bless...this is a very hard journey we are all on.
Aloha...D :))
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
2 Comments
Our symptoms are IDENTICAL! Have you gotten any answers?
Aloha Swilleyvanhilli. Sorry I did not respond earlier. I changed email address for profile and don't go back to that old email. I just happened to come across this website and saw some responses. 5 years later, no idea why this is going on. I do know if I am overly upset, it makes things worse, so I have to live a very, very calm life. Hard to do, but since I live in Hawaii, it is probably easier than if I was on the mainland. A few years ago, things sort of "died" down in my body and I just accepted what pain I was dealing with. I had a rather unpleasant experience with someone last year which caused me to go into a lot of anxiety, so my symptoms went back into over drive and 5 months later I am still battling the "demon" (as I call it) What does help, prayer! I swear, when I go into prayer, my symptoms seem to almost disappear. I just wish I could stay in the meditative state when I am out of prayer. Maybe one day :))
I finally turned to pain medication a few months back since I could not handle it, but I stopped taking it because I was worried I would get dependent on it. I eat a very healthy diet...no gluten, no dairy, very little sugar, hardly any processed food and no fast food. I exercise, which I have always done, I actually love to workout, and when I am working out I don't feel my pain because my body and mind are engaged. I take naps when I can, because sometimes my mind just can't take it and I have to escape into sleep. I am going to my Dr in a few weeks and asking for a new MRI on my back to see what is going on with my compressed discs (a woman I know said this could be part of the problem, but doesn't make sense for all over body symptoms) I just saw a show about a woman who found out she has Thyroid issues and was dealing with issues for over 40 years because they never did a THYROID ANITBODIES TEST, they only did a THS test, but not a TG.ppo antibody test, so I'm going to ask for this. I am going to check my hormone level, again, and see where this is at. Okay, enough about me, how are you doing...did you find out what was causing yours? Please stay in touch...important to share info. God Bless...Dawn
I finally turned to pain medication a few months back since I could not handle it, but I stopped taking it because I was worried I would get dependent on it. I eat a very healthy diet...no gluten, no dairy, very little sugar, hardly any processed food and no fast food. I exercise, which I have always done, I actually love to workout, and when I am working out I don't feel my pain because my body and mind are engaged. I take naps when I can, because sometimes my mind just can't take it and I have to escape into sleep. I am going to my Dr in a few weeks and asking for a new MRI on my back to see what is going on with my compressed discs (a woman I know said this could be part of the problem, but doesn't make sense for all over body symptoms) I just saw a show about a woman who found out she has Thyroid issues and was dealing with issues for over 40 years because they never did a THYROID ANITBODIES TEST, they only did a THS test, but not a TG.ppo antibody test, so I'm going to ask for this. I am going to check my hormone level, again, and see where this is at. Okay, enough about me, how are you doing...did you find out what was causing yours? Please stay in touch...important to share info. God Bless...Dawn
I have the exact same symptoms. Went from small burning in groin to whole body burning in two days. Pressure anywhere - arms, face, feet caused burning. this was 25 years ago. still having problems off and on (taking gabapentin- not sure if it helps or not). I know what you are feeling - I went to the Neurologist (Ohio State) again today - more tests but nothing out of the ordinary. I dont think they understand and i think we need a smart research doctor to help figure this out.
Many people have the same kind of pains and don't know the cause. In my case, doctors told me it was due to my having taken Ciprofloxacin, an antibiotic. I urge you to look it up. Anyone who has taken this antibiotic -- or any in the family called fluoroquinolones -- would benefit from investigating a connection between your disease and these antibiotics that, incidentally, come with Black Box warnings due to the damage they can do, including chronic, painful nerve damage.
Have you had an mri with dye contrast? You could have retained the heavy metal gadolinium which is in the contrast. I did and have and the burning has been a nightmare. Look up gadolinium deposition disease.
I know this question was asked a very long time ago, but I hope some people still need some answers. I need some and I have some.
I have suffered with this type of burning, stinging, electrical pain for over 15 years. It started suddenly after what may have been a stomach infection. I had angioedema and was misdiagnosed as having allergies to something at the ER, I now believe it was a Thyroid Storm. I had just began to take Synthroid after I had finally gotten on a thyroid medications, after 18 yrs. of being undiagnosed. I had just stopped taking a 2 week RX of Prednisone. That afternoon I took a nap and was woken up with severe pain in my stomach. It spread throughout my body. This was the beginning of my major health problems. I was extremely weak and had explosive diarrhea every morning and lost 60 lbs. because of it. This went on for a year. A UCSF gastroenterologist finally said I must have had a stomach infection and it caused my nerves to become over sensitive. I'm not sure he was right, but he put me on Elavil/Amitriptylene and the burning finally stopped; for a while. After a year, I felt like I may not need the Elavil anymore, so I weaned myself down to 25mg/day. My dr. told me not to go off of it or my Fibromyalgia might get worse, he was right.(I forgot to mention I have Fibromyalgia, Hashimoto's Thyroiditis, Arthritis, PCOS and Chronic Migraine). Within a few months it came back with a vengeance.
Fast forward to recently. I now am almost completely disabled by my pain. The burning is really bad and comes and goes in different parts of my body, but is almost always in my hands and feet. I am losing the feeling in my feet and calves, and I have a lot of tingling and electrical pain. Just taking a shower wears me out for the day. I was finally, after 15 years, diagnosed with Small and Large Fiber Neuropathy. I kept telling drs. I may have neuropathy, but the tests didn't show it until now. They diagnosed the Idiopathic SFN, without a test, just because of my symptoms and that the EMG finally showed large fiber peripheral neuropathy. Why are there no good doctors out there? They are all too specialized, but don't even seem to know their own speciality.
I have discovered some things i would like to try that others have had success with. The first is the Autoimmune Protocol or AIP diet. It's pretty much an elimination diet and it's very strict; that's why I haven't done it in the last year since I discovered it. I am very motivated right now, because I'm having an unusually bad flare. The other is CBD oil. I tried a vape pen with this cannibis oil for a few weeks and did have a reduction of pain with almost no side effects. The first several days I didn't know how to inhale properly, so I coughed a lot and felt like I was having an asthma attack. At first, it also made me rather tired, but this subsided very fast. I ran out of it a few days ago and now I'm in this terrible flare that has me crying in my bed and wishing I could die. I did a lot of studying up on CBD oil before trying it. There are numerous people out there that are getting relief from this type of nerve pain from using it. I am very much a rookie and can't give any advice other than give it a try. It's certainly better than all of the nasty RX's I've been on for 30 years.
If anyone has any experience with CBD and has any suggestions as to which type or brand to use for neuropathy, Fibromyalgia, and Arthritis, please chime in.
Blessings and Gentle (((Hugs))) to all who are suffering out there.
I have suffered with this type of burning, stinging, electrical pain for over 15 years. It started suddenly after what may have been a stomach infection. I had angioedema and was misdiagnosed as having allergies to something at the ER, I now believe it was a Thyroid Storm. I had just began to take Synthroid after I had finally gotten on a thyroid medications, after 18 yrs. of being undiagnosed. I had just stopped taking a 2 week RX of Prednisone. That afternoon I took a nap and was woken up with severe pain in my stomach. It spread throughout my body. This was the beginning of my major health problems. I was extremely weak and had explosive diarrhea every morning and lost 60 lbs. because of it. This went on for a year. A UCSF gastroenterologist finally said I must have had a stomach infection and it caused my nerves to become over sensitive. I'm not sure he was right, but he put me on Elavil/Amitriptylene and the burning finally stopped; for a while. After a year, I felt like I may not need the Elavil anymore, so I weaned myself down to 25mg/day. My dr. told me not to go off of it or my Fibromyalgia might get worse, he was right.(I forgot to mention I have Fibromyalgia, Hashimoto's Thyroiditis, Arthritis, PCOS and Chronic Migraine). Within a few months it came back with a vengeance.
Fast forward to recently. I now am almost completely disabled by my pain. The burning is really bad and comes and goes in different parts of my body, but is almost always in my hands and feet. I am losing the feeling in my feet and calves, and I have a lot of tingling and electrical pain. Just taking a shower wears me out for the day. I was finally, after 15 years, diagnosed with Small and Large Fiber Neuropathy. I kept telling drs. I may have neuropathy, but the tests didn't show it until now. They diagnosed the Idiopathic SFN, without a test, just because of my symptoms and that the EMG finally showed large fiber peripheral neuropathy. Why are there no good doctors out there? They are all too specialized, but don't even seem to know their own speciality.
I have discovered some things i would like to try that others have had success with. The first is the Autoimmune Protocol or AIP diet. It's pretty much an elimination diet and it's very strict; that's why I haven't done it in the last year since I discovered it. I am very motivated right now, because I'm having an unusually bad flare. The other is CBD oil. I tried a vape pen with this cannibis oil for a few weeks and did have a reduction of pain with almost no side effects. The first several days I didn't know how to inhale properly, so I coughed a lot and felt like I was having an asthma attack. At first, it also made me rather tired, but this subsided very fast. I ran out of it a few days ago and now I'm in this terrible flare that has me crying in my bed and wishing I could die. I did a lot of studying up on CBD oil before trying it. There are numerous people out there that are getting relief from this type of nerve pain from using it. I am very much a rookie and can't give any advice other than give it a try. It's certainly better than all of the nasty RX's I've been on for 30 years.
If anyone has any experience with CBD and has any suggestions as to which type or brand to use for neuropathy, Fibromyalgia, and Arthritis, please chime in.
Blessings and Gentle (((Hugs))) to all who are suffering out there.
Mine ended up being Chiari Malformation type II - had surgery and it helped relieve symptoms but I still live with it.
To the person whom wrote this post. I realize it was so many years ago, but I am experiencing this exact problem. All over my body including my throat. I am new to this and scared. Did you ever find any answers?
1 Comments
Mine ended up being Chiari Malformation
I can definitely sympathize with all of you! This full body neuropathy is beginning to become unbearable – even with high doses of Neurontin.
I'm definitely going to give the Candida Supplements and low sugar diet a shot to see how it pans out. I'm desperate for any type of solution!
I'm definitely going to give the Candida Supplements and low sugar diet a shot to see how it pans out. I'm desperate for any type of solution!
2 Comments
Hi, please let us know if it makes any difference. I'm trying to understand where my full body neuropathy comes from, I'm also on Neurotin but it helps less and less
Mine ended up being Chiari Malformation
I can definitely sympathize with all of you! This full body neuropathy is beginning to become unbearable – even with high doses of Neurontin.
I'm definitely going to give the Candida Supplements and low sugar diet a shot to see how it pans out. I'm desperate for any type of solution!
I'm definitely going to give the Candida Supplements and low sugar diet a shot to see how it pans out. I'm desperate for any type of solution!
I see lots on here about burning and itching. I have neuropathy, but I have, also, had body wide candida. It's crazy to think overactive yeast can mimic this stuff, but it can. Itchy mouth and gums, feeling like your skin is crawling or burning. If nothing else, ask your doctor about it, but I had lots of doctors that poo-pooed candida as a problem, but you can get tested. On my own, I did a candida killing diet, and used a candida killing supplement.
As for the neuropathy, cut the sugar and carbs. It causes inflammation. I have been making anti-inflammatory green drinks with Kale, fresh ginger, pineapple, almond milk, carrots, celery, and a green apple. It makes enough for 2 days for me. If I continuously drink one serving of this a day, and add a golden tea at night containing turmeric, almond milk, fresh ground black pepper, smidge of honey, and ginger (it tastes better than it sounds) and cut all other forms of sugar (other than the honey) I feel good after about 2 weeks. When I don't, I feel it worse than before. Read up on inflammation. It causes lots of health problems. I got a concussion and several weeks developed neuropathy symptoms. I'm still trying to figure out the cause of my neuropathy, but the anti-inflammatory helps. It's not for everyone, but it helps me.
As for the neuropathy, cut the sugar and carbs. It causes inflammation. I have been making anti-inflammatory green drinks with Kale, fresh ginger, pineapple, almond milk, carrots, celery, and a green apple. It makes enough for 2 days for me. If I continuously drink one serving of this a day, and add a golden tea at night containing turmeric, almond milk, fresh ground black pepper, smidge of honey, and ginger (it tastes better than it sounds) and cut all other forms of sugar (other than the honey) I feel good after about 2 weeks. When I don't, I feel it worse than before. Read up on inflammation. It causes lots of health problems. I got a concussion and several weeks developed neuropathy symptoms. I'm still trying to figure out the cause of my neuropathy, but the anti-inflammatory helps. It's not for everyone, but it helps me.
I have neuropathy, peripheral neuropathy with paroneal palsy now. I get shocking feeling daily and all day. Pain is God awful!!!! I also have bratters disease of the kidneys, and multiple organ issues. have to wear leg braces and use a walker. I did several nerve conduction studies all getting worse to where 4 of the 5 test done are abnormal. My nerves do not respond. I have been living with this for 6 years where it's this bad. Did the biopsy of muscle and nerve and it's genetic which means no fix. It only progresses!!!! I haven't felt my legs in 4 years now. It all started with just pins and needles in my feet. It's a terrible life to live, and after taking 13 meds and pain meds nothing helps anymore. Valium at times will calm the nerves down but not completely shut them down. Also use a heating pad, a large one and lay on it for 30 mins at night before you go to sleep. I wish all of you who have this disease the best of lick since I haven't had any.
4 Comments
Im sorry for all your pain Misty. I hope you have found some relief.
I'm sorry Misty. Same as DaveTm, I hope you get any relief. As for me I have full-body small fibers neuropathy, worsening quickly, 38 years-old
research Chiari Malformation - yours sounds like a severe case of what I had but mine was discovered 2 years after symptoms started. You are going on 6
Misty, I have the same symptoms. I have hypothyroidism, fibromyalgia and now small fiber neuropathy. I am having the worse night I have ever had. I can't move at all. My body has tightened up and there is no full moon. I feel sick all the time and stress is so bad, and yes it does make it worse. I'm 62 now and I was 59 when it all began. I have lot my life and now more medical problems from the diease. I take lyrica and pain meds. I tried to go off the pain meds and I got worse again. I just want to die. I hate my life and I'm almost in my wheelchair full time. God bless all and I pray for pain free for all...Amen!
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.
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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.
Chiari Malformation - that is what it was for me
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.
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Chiari Malformation
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 ***@****
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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?
Does anyone else have the problem of overheating? How do you cope with it?
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.
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.
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!
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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 :(
Hello, I'm sorry to hear about all of you suffering from the frustrating thing that is peripheral neuropathy. My father has all the same symptoms listed many times before from burning to buzzing to vibrating to pins and needles to just complete numbness. It's comes and goes in severity from day to day but never goes away entirely. He is very distraught and even depressed at times which I'm sure isn't helping his symptoms. We are all desperate for any information that could help alleviate some of the problems. All of the tests have come back negative including Lyme. He is a little high in some metals but that seems to be a chronic condition which doesn't correlate with the sudden onset of neuropathy. Thanks in advance and hopefully we can figure something out together.
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Have any of you taking a FLURIQUINLONE? I am a Floxie as they call us who have been poisoned by Cipro & this group of antibotics. This head to toe burning is a side affect that can last for years are forever! The most dangerous drugs in the world & your Dr will probably not even warn you. Has ended my life!!!'
I too, suffer as many of you do. My entire body, from head to toe, burning, itching, stinging, stabbing pain, electrical shock sensations. My eyes are dry and feel like they have sand in them all the time, every bite I take leaves food in my teeth which is torturous, my taste buds and salivary glands are affected, I am sensitive to sounds and smells, have a clicking sound in ears, Feet, hands and face are the worst. I've seen 4 neurologist and had a number of tests ran. They all say they don't know the cause but probably genetic. Gralise (an extended release form of Gabapentin) helps me the best but is extremely expensive so I take some of the gabapentin to offset costs of Gralise. Just a side note, I have celiac disease and some think that my symptoms are from having the disease for so long before being diagnosed and starting the gluten free diet. If you haven't been tested for celiac disease I suggest you do so since it can cause these symptoms.
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Have you been tested for Sjogrens?!!! I told Drs for 10 years I was too young to feel this old!! I was diagnosed with Sjogren's a
year and a half ago. Look up symptoms! You have them all!!!
year and a half ago. Look up symptoms! You have them all!!!
did you burn as mine is severe screaming level stinging in every pore entire body chills, heart pounding, mental breakdowns from it.. I have bartonella but had it for years,, this is like I am being electrocuted, it is very electrical stinging
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Please call me I have the same thing but they think it's just mental. My legs,arms,botttom and back at night are on fire. Anthony in Chicago 708-515-3476
I know the shocking feeling you are getting! I get it constantly and it is awful.
You have hit the nail on it's head, I have all that you are talking about and I am glad some Dr's don't think where crazy. I am 63 and have had this for 10 years
My whole life has changed including my body image, I try to keep myself away from people because of the complete change in myself I just don't want people to remember me this way.
Good luck on this irritating journey
My whole life has changed including my body image, I try to keep myself away from people because of the complete change in myself I just don't want people to remember me this way.
Good luck on this irritating journey
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I never go out anymore I'm not even going to the family reunion this year, my looks and attitude have changed drastically.
Terrence, please do not do this to yourself. Live your life and enjoy it. Pain should not keep you from trying to enjoy your life. Pray, like their is no tomorrow and know it can't hurt, right?!! Believe...we all have to do this. God Bless....D
Lady, I'm like you, not working anymore, not going to family reunions, etc. But I'm 38 years old
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