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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
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!
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