... I have it in my vaginal area, in the back of my legs, major burning and stinging sensations, down into my legs and feet, I have it in my arms and in my hands and even up into my face and ears. I itch all over, and I have had a few breakouts which always vary. I had a few in my vaginal area and my buttocks, some on my feet, one on my chest and some on my head and face. They always itch and sting, never burn. I have tingling all over my body and it feels like I have a parasite or something running throughout me, even in my chest sometimes. I have had several times I got chest pains and I have ended up at the ER a few times, only to be told it is nothing. I am not at all a hysterical person, and up until December of 2011 when this all started, I was a very healthy individual. I get all the sensations of tingling, pins and needles, burning, itching and crawling sensations and my Dr and specialist I have seen are baffled. I constantly ask if this is shingles and my Dr says no, that it would only be on one side of my body. But, is it possible to have systemic shingles, all throughout your body with little to no rash at all. Please help me. If anyone else has experienced this and found out they did not have shingles but did find out what they had, would you please share it with me. I have had to go on TDI from my job, because I can not sit for a long period of time and this is ruining my life. I want to add, since this has been going on for over a year, I have had tons of blood tests done and all my blood work looks very good. I am now allergic to foods I was neve allergic to, but it does not appear allergies cause any neuralgia, but if you have neuralgia, it can make your allergies worse. I have been tested for HSV1 and 2 four times over a 15 month period and these always come back negative with the values very low. If you have shingles can you have a specific test done to get a positive/negative test reaction? Is it possible to have one done with spinal fluid? I really need some help and assistance.
Persisting Pain, Shingles - I have neuropathy all through out my body and I do mean all through out?
Question posted by so confused on 7 April 2013
Last updated on 11 June 2024 (7 weeks ago) by Econman
14 Answers
I’ve had HSV1 for 40 years and my first shingles attack 12 years ago. I take lysine daily. Stay away from high arginine foods. But I’ve also had neuropathy and neuralgia in both legs and spine on and off for a decade. Surprising I started taking a B-complex and the neuralgia subsided. If I forget to take it a few days it starts to return. Not sure the pathway, but supposedly B6 helps. Caution should be used however because you can get way too much B6 build-up in your system quickly.
I have had the same thing for the last 6 years all through my body and am on gabapentin also. I have post herpetic neuropathy because of it, because it took them so long to figure it out now it’s permanent. Usually it goes away but now it’s not going to. Absolute medical malpractice. I was healthy and my skin was beautiful and I never even went to the hospital before and I can’t even count how many time I went to the hospital clinic etc trying to figure out what was wrong with me . Outbreak after outbreak. It took a pediatrician a damn baby doctor to tell be I had chickenpox and prescribed me gabapentin finally for the pain after 3 miserable years. It was horrible
A few years ago I broke out with hives I had major, burning and itching. I had the hives on my legs arms in my vaginal area, I had them on my arms they were all over my body, and sometimes into my eyes. I would end up in the hospital and the doctors just ran many many tests, and they couldn’t figure out what it was. This went on for two years. Finally I took my car to get something fixed I don’t remember what it was for but my mechanic found an antifreeze leak in my car. He found my diagnosis and it made sense because as soon as I got in my car and started driving, my feet would start to burn and that’s where the leak was. It was down there somewhere by my gas pedal , anyway, my car got fixed the leak was fixed. Took some time but slowly my hives started going away and I got healed. I know hives and neuropathy are two different things but just in case you really don’t know what it is, maybe you should be tested for chemical poisoning.
I know you wrote this post five years ago but I would love to know how you are feeling today. Any better?
I have had this exact same thing since having shingles on my face 8 months ago. The rash went away but since then I have felt more or less constantly sick with flu like symptoms and this prickly, burning itchiness all over my body. Sometimes I get a tiny rash here and there but thats all. Anyways, I just had a spinal tap which showed high levels of IgM antibodies for Herpes Zoster in my spinal fluid. I am in a way pleased to have had confirmed what I suspected all along but I am also terrified that this will be with me for ever now. I just found out about the spinal tap result so we haven't discussed possible treatment yet.
Please let us know if you have gotten any better and how. I truly hope you are well today!
I had shingles on my face 10 weeks ago and at night I take melatonin but wake up with strange prickly feelings. Also had anxiety issues before this that I was working through. I tried gabapentin for 16 days but did not like that drug. That was small 100 dosage. I honestly don't know what to do.
Would love to know more about your symptoms as I am suffering from what the doctors said was shingles but it didn’t look like it to me across my lower tummy. I’ve had this rash pop up over three years now half a dozen times and I have swelling like hives on my face sporadically here and there. Other symptoms similar to yours. I have a constant chest discomfort that feels like light pressure but also pricking or what it would feel like if you could feel internal itching? So hard to explain. Nerve pricking and itching all over my body. Fingers randomly go numb andstarts with pointer finger then goes across the fingers. Stark white and no feeling, like the nerve suddenly gets blocked. How did you get the doc to do
I was in a horrible accident, a fire, and afterwards I had nerve damage. But later I began to experience the same sensation, the parasite running through your body. I describe it as ants in my blood stream. Though you may have not had an acciden, I think they both correlate with one another, it's just there not treated as such. We know that after having shingles one can experience a neuropathic feeling for quite a while. Somehow I believe neuropathy may lead to shingles. My shingles are unexplained-accept exposure to high stress, but soon after my neuropathy remained persistent (12 to 18 months) I developed shingles. I had never had shingles- and they appeared where the neuropathy bothered me most.
Possibly treat the source of your neuropathy to get rid of shingles. Possibly diabetes, fibromyalgia, injury, etc etc.
Gabapentin (Neurontin) fixed the nerve damage and the shingles once treated properly never came back. Good luck
Sounds crazy... who knows
Had shingles on head forehead and eye 10 weeks ago. At night I take melatonin but wake up with stinging pains and such weird feelings throughout. Also had what I would call electrical impulses throughout. I don't know why it is mostly at night when trying to sleep I am going to a counselor trying EMDR. Oh to feel normal again! Also had stress issues and panic attacks before the shingles.
I don't know if your there any more. I just read your post. I had the same exact thing almost 2 years ago. lasted for 4 months. last year I got pains in my groin and tingling followed by side pain that last couple months. been checked for cancer, tumors, intestinal issues but nothing found. as it started to fade it moved to my right side then boom! shingles. I don't know for a fact that they are connected. im going again to checked for other possible illnesses. but I do have shingles for sure and had your symtoms 2 years ago. was very scary. let me know how what your update is.
I know this is an old thread, but when you had your shingles outbreak did you find any treatment that helped? I’ve had shingles for over two months now and have been on antivirals and they’re not helping. My rash keeps spreading and I have bumps showing up in all different parts of my body. I’m in my 20’s, but am immune compromised from years of treating a horrible Lyme disease infection. I went to the Er hoping I could get iv antiviral treatment for disseminated shingles, but they said it was acne and sent me home. I’m positive it’s shingles and feel hopeless. If anyone has any advice on how to get better I’d love to hear it. I’m taking high doses of vitamin b12, vitamin c, vitamin d, and Lysine as well as zinc. I’ve been eating a lot more fruits and vegetables and have kept my diet much cleaner than before.
I didn't do anything. I got lucky I guess. It ran it's course and went away. It did take a few weeks. Was very painful the first week then each week got better. My nephew is younger and had them much longer from illness from his kidneys. It too had to just run its course. I think he had them as long as you. About 2 months. He was on some sort of steroid I think. If I can get better info from him, I will return and post it.
So you did have nerve pricking all over your body even though you had the shingles rash in just one spot? I’m trying to find answers for what is happening to me also and am so afraid they are missing something and it will be too late when they catch it.
So confused:
Did you ever get a diagnosis? I have the same exact thing. I'm testing negative for everything (all stds including hsv). All of my blood work is normal. I have the tingling all over my body. I've had a folliculitus rash off and on in the chest area. The tingling seems to have originated in the vaginal/pelvic area and spread all over the body. I've seen 4 gynos, 2 pcps, 1 dermatologist, and tomorrow I'm seeing a rheumatologist. The gyno said I had cervicitis but she could not identify the cause after running all tests. I'm still tingling and everyone is stumped...
Did you ever get a diagnosis?
I had to stop by and answer. I know the torture you are going through. For me it was caused by the chemo antibiotic levaquin, avelox and cipro. it is a neuro toxin drug and it caused severe type nerve damage that left me covered in all over stinging from head to toe with heart pounding. Also I developed morgellans which also causes severe stinging and the feeling of bugs on you. It has been 3 years for me so far.. I am unable to process any meds now as it damaged that ability so I am left in this torture.. the feeling of stinging and bugs on you sounds like morgellans..
write me at rykerjem860@outlook.com if I can help. I so understand the hell you are in..
Hi, I have the same pain and finally found out that the worts are nerve blisters. Man is this sharp pin pricking nerve pain almost unbearable at times. I have it all over my body with blisters on some sores in my mouth and on my face from the stress.But Good new for you!
After my third time in emergency I finally received the right information to get the right medication to treat this nerve pain. I am now on Lyrica with taking three 75mg with Effexor xr starting at one 3.75 at bed time. For three weeks then if I feel that I could use more I will get it increased.
But The good news is that the sharp pen pricks are about 10 percent left in my body I'm down to a level 3 out of 10 when I was at a 8 of 10 just a few days ago. I hope that this is something you will try fast from your doctor befor you go crazy with all of this pain. I feels so good to get relief so fast. I've been suffering over a year ! Its just all your nerves reacting to your pain. Let me know if you get this. Jay jrbnapaca@gmail.com
It sounds like what I have, but mine is caused by sciatic nerve pain and it is severe in both legs and in my hands and I thought I had carpal tunnel but it now seems like I have cauda equine syndrome due to all the nerves that are bundled in the lower back that affect many different bodily functions and sciatic nerve pain. I have the pain all over, it moves around, hurts like the dickens and never goes away. It makes life difficult. I get tingling, numbness, pins and needles, sharp pain, burning pain, electrical pain, as well as just throbbing and normal pain, so it may be from nerve pain and not from shingles. Check with your doctor. Maybe an MRI might show something in your spine that is causing it or not. I would recommend that first and see what your doctor says cause if they can't find why it is happening, then it might be a muscular-skeletal problem, but he/she can tell you more and give you better medical advice than people here.
I have two herniated discs in my lower back with a crushed vertebra on top, and scar tissue, arthritis and the narrowing of my spinal canal that presents me with new problems, so you might want to look at some of the spine problems and see if that is the case. Maybe not, but why not get it checked out cause pain is not a lot of fun!!! Additionally, for shingles there is a vaccination you can get for it. It is for seniors over 65, but I will be 55 this year and am going to ask my doctor if I can get it to help with chronic nerve pain. It just might, but I will be checking with him to see what he thinks. My Mom had shingles both times I was deployed to combat zones so I had her get the shingles shot and while she has had some sciatic nerve pain from her back, she hasn't had shingles, knock on wood. I read somewhere that even if you have shingles it may help the severity by getting the vaccination similar to the flu when you have it and get a flu shot. It might work the same way. As always, don't rely on me or others for medical advice, just our thoughts and always check with your doctor to see what he/she thinks. Do a little research so you can ask questions when you go see the doctor and hopefully, we have given you food for thought. Hope this helps. Take care, lambda5555m (Ironic - there is a shingles commercial on tv) I find it disturbing that a firefighter has such a burning pain than anything he had during his firefighter career and going into burning buildings. Yeah, we all feel that pain!!!
Have you been tested for Lyme Disease? What you describe is similar to when I had it. People who've had it for many years undiagnosed, or have 3 bands on the Western Blot test rather than 5 or such nonsense (how can you have the 2 bands that are specific to Lyme Disease and not have Lyme Disease!!) can have body-wide issues. If you do test positive, I suggest you search for a Lyme-literate doctor. There's a lot of controversy regarding treatment, and I know I never would have gotten well with the conventional Infectious Disease docs I saw. I hope you get relief soon! EJ
Thank you for your comment on Lyme disease. When this all started an ND doc did a blood test through our regualr lab and it came back negative. On the recommendation of my GYN, she said there was only one ND doc she trusted, and told me to try the one she recommended. When I went to see him, brought him all my blood test results, he said he thought it was Lyme and told me I had to pay over $200 to send off a blood sample to a special lab, one only ND docs use. I thought this sounded suspicious. I am 53 years old, if this is Lyme, then I have had it for years. I have never been bit by a deer tick that I am aware of, I have never lived in a wooded area in my life. I live now in Hawaii, for over 15 years and have never been bit here, that I can recall. I did have dogs when I was younger and we lived in the desert and I was bit by dog ticks, but all my research says these ticks do not carry Lyme.
I just think if I had Lyme, at least one of the bars on the first test would have showed something, and it was a complete negative, so I opted out on the $200.00 test. Did your first test with a regualar lab show anything? Did you have to pay an ND doc to send your blood work to a special lab to see if that is what you had? I am very curious as to how one lab could miss it completely and this doc insist I have to have a test done by a "special" lab.
My initial lab tests showed I had it, but had no bars on the Western Blot, so according to conventional medicine I couldn't have had it. Wrong! Yes, paying $200 for a lab test to be sent to a lab that competently tests for Lyme is very normal. There is a lot of controversy regarding Lyme disease. I personally believe that no conventional doctor can get you well - you have to go to a "Lyme literate" doctor. I finished my treatment in 2005 (and only show the antibodies now, no active Lyme) so I don't know what is currently being done. Back then I found a huge amount of wisdom on lymenet.org. But be prepared to throw away conventional thinking. If you want to get well, do as they say. It works! Go on there and read, read, read. There is a lot of scientific data being dismissed by the medical community. God bless! EJ
I guess I am a little confused by your answer. You state your 'initial' tests did show you had it, wasn't the initial test done by your regular MD and sent to a regular lab? But you say no bars on the Western Blot..what is the difference?My initial tests show I do not have it, no bars at all. That is why I questioned the ND doc who wanted me to pay $200 to do a "special" lab test, which is sent off in the mail. If the initial test had showed something, at least one bar or an equivalent which means it could go either way, positive or negative, then I would have considered the test. But to me, I think he saw a woman who was falling apart and was after my money. No other Dr has brought up Lyme to me. I thank you for sharing the web site and I will go there to see how many people have had a complete negative test done through a routine lab but had a positive test when sent off to a speciality lab.
If there is a high incidence of this happening, then I will strongly consider shelling out the money for the test. I just do not have that kind of money to go have testing done when there are a lot of other posibilities. I know I am a strange case, it is obvious, or the Drs would have figured it out or at least had a strong hunch a long time ago. I am seeing as many Drs as I need to so I can go to the Mayo Clinic with a lot of research and testing to help them figure it out. Thanks again..
You need to have the ELISA test and have 5 bands of the Western Blot test to be positive. One out if the two - no conventional doctor would treat me. It's very common with Lyme Disease to have to pay out of pocket for a lab that accurately tests for Lyme. Best of luck to you - EJ
Many people don't know this but Lyme disease can also be categorized as an STD!! U can get it through intercourse. So u don't have to have been bitten by a tick to actually contract it!!!
That is true! There is so much miss-information out there amongst conventional medicine. The alternative health care community has organized a lot of scientific data to support their case that Lyme Disease can be helped - greatly, not just "treat the symptoms". For me, what it boils down to is: Do you want to get well? Do you want to have a life that is liveable, even enjoyable? If so, do your research - the Internet has so much - learn. Search out doctors who think outside the box. Go to tertiary medical centers - large, regional or teaching Hospitals - like Johns Hopkins, Cleveland Clinic, etc - for testing that only these hospitals can do. Go to their allergists and get testing done - then take the results to the alternative or best doctor you can find. Piece things together - this life is all that you get and once your health is ruined it will be all that you do! Ok - off my soap box now. Be an expert - on you !
God Bless - EJ23
You mentioned these paper cuts these are morgellans, I have them too and the severe stinging over my entire body, I am about crazed. Been 3 years my entire body stingings every pore plus other issues.. I did not even know morgellans existed.. If you look at your hands under a scope you may see red and blue fibers or tiny thread like things. this is NOT delusional it is real, many of us are getting it but no one knows what to do.. I cant live life much longer like this.. I thought it was sensory nerupathy but it is morgellans.. I get severe chills with it.. stings even more at night..
I also suffer from painful neuropathy throughout my body. Im not sure if what I'm going thru is like what you are, but for the last 2yrs I've had a skin infection that I picked up during one of my many hospitalizations. Its almost like acne covering my chest, back, arms, neck and face. Occasionally it spreads to my legs also. It can be very irritating and itchy at times. This infection consists of acne like bumps that are quite painful and when they burst they end up turning into yellowish green scabs that look like infected cigar Burns. I've seen 2 dermatologists, an infectious desease specialist, and my primary care Dr multiple times. It was originally diagnosed as mrsa and now am being told its a staph infection. Complicated by ingrown hairs. I've been on clinsamycin lotion with no luck treating it and was taking baths with a 1/2 cup of bleach which didn't do much not to mention multiple prescription antibiotics.
So far out of the Dr's I've seen, its been the infectious deseas Dr that has helped the most with it. I would recommend seeing one if you haven't already. Soon I will start a new treatment to see if it helps. It a light treatment and I don't know excatly what in envolves. It was explained to me basically sitting in a tanning bed with special UV lights, not the harmful tanning ones.
My break outs only occured at the beginning, back in Dec of 2011. The only ones that still occur, once in a blood moon, is I will feel stinging sensations on some part of my hand and look down to either see a papercut like opening(not done by paper or anything else that cut me) or it will look like a small blister and then it will itch like crazy for a few minutes, hours and then the sensation goes away the the cut/blister heals in a few days. The ones in my mouth I believe I had because I was allergic to something I was eating, I am now on a very strict diet. I take Epsom salt baths, because this is supposed to help with any toxins in the body. While the bath is nice, I am not seeing any improvement from taking the baths. Thanks for your answer.
I had never thought to do Epsom salt baths before. I'm going to give them a try!!! I figure it can't hurt. It has to be better than taking baths in bleach water every day. May I inquire as to how often may be helpful? Is it something like every day, every couple days, once a week? Any kind of suggestion would be very much appreciated. And thank you for giving me a different idea to try to get this under control.
Hello again. This actually sounds like hoof and mouth disease or similar. Though H&M is often hands and feet, I had it for years showing up in odd places. I would suggest seeing a dermatologist to take a biopsy. That will tell if this is a fungus, critter, or odd bacterial function. A spinal tap is not what you want. Very painful, requires hospitalization, and so far this has nothing to do with the nervous system or brain.
How are you doing now? Karen
Have u been checked for herpes
And have u seen a neurologist
I thought I'd comment on here even though this is 4 year's old but Manuka honey might help this condition applied topically and taken internally. I hope you are all better now.
Find myself for the past 16 months have been going through the exact symptoms and issues as yourself I have not been to the Infectious Disease doctor yet matter fact I'm going to ER tonight I have really bad gas coming up all over my body lots of pain on my right side bottom of my rib cage it's so painful I feel weak and everytime I go to hospital or doctor they almost made me feel like I don't hypochondriac so I just let this go more so than tried to treat and I'm scared it getting out of hand hope you have found some resolution and please share if you do I can sympathize with you so much God bless
I had itchy bumps that showed up on one wrist just in summer. It looked so much like poison ivy I always just assumed I'd brushed up against some. But, one day it occurred to me I might have an allergy to my watch or a heat rash. I stopped wearing it and it has not come back.
I also have shingles. I first broke out on my right side. No rash to speak of, just itching and pain. I was treating that, when I now broke out on the left side. No rash, just pain. I will be focusing on rest and meditation to lower my stress level.
I had itchy bumps that showed up on one wrist just in summer. It looked so much like poison ivy I always just assumed I'd brushed up against some. But, one day it occurred to me I might have an allergy to my watch or a heat rash. I stopped wearing it and it has not come back.
I also have shingles. I first broke out on my right side. No rash to speak of, just itching and pain. I was treating that, when I now broke out on the left side. No rash, just pain. I will be focusing on rest and meditation to lower my stress level.
After WW II, in Los Angeles, many of the servicemen that returned from the war zones seemed to have shingles. It was just about an epidemic. It may not have been the shingles, but it was the rash, blisters, and itching. It was much like you describe. If you study the Battle of Midway, it's in the records that Admiral Bull Halsey did have shingles all over his body, and he was hospitalized for about 4-5 weeks. I think that stress may have been a factor for this. So, I'm asking if you've been going through an exceptional stressful time? If so, perhaps an medication for anxiety might help. Also these people were run down physically-so are you taking any vitamins to help your body? My female coonhound is allergic to fabric softener and breaks out. I know that she's a dog, but who tests for Bounce dryer sheets? SO I WOULD SUGGEST A change in washing your clothes, reduce chemicals around the house.
Oatmeal baths help reduce the itching. I broke out- and the doctors thought that I had the shingles. It went away in warm weather. Came back next winter. My doctor just read that goose down jackets were treated in formaldehyde and it made a shingles-like reaction. I went home and washed all of my jackets and the new jacket-problem solved. I've had the female itch a few times. I thought that I was going nuts from it. I can't imagine how you are surviving. Baking soda can be used with hot water to wash clothes and bedding. So can Boraxo-which is a natural mineral-Maybe wash your clothes and then run it through the washer again without any laundry soap? Something is going on with your immune system and you sound like soldiers and Marines that fought in the Pacific and Korea. Good luck and I hope that you find a solution.
Meyati, Here you are still helping others. I was not able to PQ you. I haven't heard anything about you for a long time. I hope that you are not hurting too much and are finding some peace. All my best to you. Sara
Shingles only erupts along a nerve path.it would not wrap around your ribs for example. It only erupts on one side as your dr said. I don't doubt you've got something major going on, I doubt is shingles.. I've never seen spinal fluid tested but I suppose it could be. Shingles is so specific in placement and behavior that you just need to look at it and you know what you are seeing.
Thanks for your answer. That is what my Doc has said, but other people tell me stories of others they have known who had a lot of the symptoms I have and it was shingles. I think the fact this has lasted for over a year and has not let up very much, is also what is so confusing. I appreciate your quick response.
Hi. Actually shingles does wraparound the ribs in moderate to severe cases. Front to back. One side. Never across the chest. That would be something else, of course. Just thought I would clear that up.
I have The same sensation all over My body and it happen líke every monday And sometimes it extent like now I been up since six in the morning I thought that Claritin or Benadryl was working but I just realize it doesn't do much is very very uncomfortable I need help this is the only issue I have with my body ., and I also drink a lot sometimes I think is because of that . If someone has any experience on how to cure this problem
I just wanted to add;; I am 3 days in and my shingles rash starts from mid back around to mid chest
I had shingles a year ago August 2015, in the private areas, once that healed and went away I developed the after effects of electric shocks, postherpetic neuralgia. They go throughout my body, along with feelings of small insects crawling throughout. I have been told, I will have this for rest of my life, I am now 62. I have been given Gabapentin, 400mg 4 times/day, the side affects of this is almost as bad as the shingles after effects.
Kaismama are you a doctor or nurse? I ask because this is really dangerous information. This is simply not true about shingles. I know because I was diagnosed with shingles and it was nothing like the typical look of shingles.
I had it across my lower belly, it started in the center and moved to the right and then to the left, I had nerve pain all throughout my body, along my spine, and after the rash still experience everything this woman is saying she is going through. I also have abdominal symptoms I’ve never had before.
I would only testify to what you experience and would not ever tell someone they do or don’t have something. Share your experience or what you know and how you know but that’s all. Misinformation gets spread around and can cause a lot of harm.
Please understand that shingles is in my regular experience, every few months, not confined to one side of the body. The main areas affected may be on one side but both sides can have the shingles rash. I have had it on the classic belt around the back ribs and on one side. It also appeared on the front of one shoulder and each time it spreads over both upper and inner thighs. It leaves scarring which damages the skin, leaves it thinner and liable to painful chafing from clothing.
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peripheral neuropathy, pain, persisting pain, shingles, herpes zoster, burning
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