Patient Comments: Peripheral Neuropathy - Experience

Question:

Please describe your experience with peripheral neuropathy. Submit Your Comment

Comment from: sillypotato, 75 or over Male (Caregiver) Published: February 22

I am posting for a friend. He has neuropathy in both feet. This affects his balance and he runs into walls. He has found that non-spongy thin shoe soles help. Indoors, he wears medical socks with grip stripes. They work well for balance indoors, better than wearing shoes or slippers. But here is my main reason for writing: He is an outdoor hiker/walker. That can be impossible when you can't feel your feet. He discovered that if he held two 8 ounce fishing weights in just one hand, holding that arm somewhat away from the body, like an outrigger, his body automatically corrects his balance. You can also carry a pound weight in each hand. Another thing that works is to carry a walking stick horizontally in front of you like a tightrope walker's stick. If your stick is too lightweight, tape a fishing weight to each end. Once he realized that his hands automatically corrected his balance, he bought a bicycle. It is a step-through bike, which means that there is no bar between your legs and that the pedals are slightly forward so that when you sit on the seat, your feet rest flat on the ground. His hands on the handlebars automatically correct his balance and even though he can't feel his feet, he can ride a bike just fine. He wears shoes with a hard distinct heel, like a man's wingtip shoe, to help keep his feet on the pedals and he put a weight on the bottom of each pedal to keep it level. If a guy in his 90s can do this, it may be worth a try for you.

Comment from: Henry, 75 or over Male (Patient) Published: September 21

My peripheral neuropathy started in the year 2000. My feet got very hot and stressed me. When it started to burn I visited the hospital and it was diagnosed that I presented with peripheral neuropathy. I was prescribed with vitamin B and zinc, among other things. In the initial stages I did not mind the warm feet especially in the cold climate of the U.K. winters. The condition of warm feet prevailed for many years and the fall off a chair in London in July 2015 exacerbated my problem and all went awry, as four days after, I presented with a dropped right foot and it was also found after an MRI that I presented with sciatica. My sensory seizure condition which presented in 2011 also worsened and then fibromyalgia reared its ugly head on 28 February 2016. Whether or not this is all related cannot be confirmed by the medical profession in attendance. Back to peripheral neuropathy; this condition has gone north, sock length, and the pain has worsened so much so that I oftentimes would get out of bed and sit and sleep in an easy chair. I started on Trepiline 10 mg and changed to Lyrica 10 increasing to 25 mg. I did not like the side effects. I am now taking Cymgen 60 mg to cover my threefold condition. Now and then I am in remission but it flares up from time to time. I don't think caffeine does me any good, coffee and chocolate.

Comment from: Jenie, 75 or over Female (Patient) Published: May 26

I have neuropathy in my left arm and hand. This was caused by radiation for breast cancer over 40 years ago. Radiation (the old cobalt kind) caused major scarring in the shoulder and axillary area which destroyed both nerves and arteries. Fortunately, I was able to have vascular surgery to restore blood supply. The peripheral neuropathy is apparently mostly autonomic and non-responsive to pain medication. It, at worst, is an intense burning pain, almost like my hand is on a burning iron. The worst pain was 30 years ago, and after I had done some heavy lifting which I should not have done. My neurosurgeon ordered autonomic nerve blocks. First 2 did little. Third reduced pain by about 50 percent, and that lasted. After that, physical therapy to restore function, and paying attention to weight limitations and not stretching the arm. Things got better. There is almost always some minor pain, but I seem to have learned how to ignore it for the most part, and go on with my life. Sometimes, mostly at night, it seems worse, but usually I can get beyond it and fall asleep. I do find hydration important. It helps. I wish I could say I found a cure, but not true. I have found a place with minimal pain and ability to function, and I am grateful for that. I have loss of function and strength in left hand, but it's a minor problem.

Comment from: Chelquilts, 65-74 Female (Patient) Published: May 17

I've been diagnosed with peripheral neuropathy for almost a month now. Gabapentin is prescribed, and I find it helps my feet and legs. I need to increase dosage slowly, so am now up to 400 mg a night. Doctor wants to plateau at 500 with 5th pill taken in the afternoon. He also told me some people need to take up to 1800 mg to get relief.

Comment from: Terry, 55-64 Female (Patient) Published: April 14

I was diagnosed with idiopathic peripheral neuropathy (PN) by a neurologist. I had a B12 level of 150. Later on I discovered this was actually low although I had been told it was normal. I have joined a B12 deficiency support group and a lot of people in the group with neurological symptoms were misdiagnosed. Anything under 300 with symptoms should be further assessed (methylmalonic acid or homocysteine test). Furthermore if you have neurological symptoms with B12 deficiency you need to have frequent injections; every other day until no further improvement of neuro symptoms. A lot of us self-inject so we can get proper treatment. A lot of doctors don't know much about vitamin B12 deficiency.

Comment from: DT, 65-74 Male (Patient) Published: February 14

I have no pain with my peripheral neuropathy, just numbness in hands and below the knees. Also very bad balance, I tend to fall.

Comment from: Klinger, 45-54 Male (Patient) Published: February 03

I have been having sexual dysfunction due to my peripheral neuropathy.

Diabetic Peripheral Neuropathy Slideshow
Comment from: Naomi, 75 or over Female (Patient) Published: September 15

I suffer severely from peripheral neuropathy of the legs and hands; also from gout. Because I'm on my feet so much I wonder if support stockings on my legs would help.

Comment from: mdstjohn, 45-54 Male (Patient) Published: March 08

I have diabetic peripheral neuropathy. My symptoms appeared last May. It started with some pain and my left leg not doing what I asked it to do. I fell and gave myself a nice shiner and hurt my hands. This progressed where now I have constant pain in my left foot and pins and needles in my left leg, oh, and I have shooting pain in my big toe and alternatively my middle toes. I was on Neurontin and gabapentin in November and December, the only pain medication that made the pain bearable was hydrocodone (Vicodin) during that time. In mid-January my doctor switched me to Lyrica and the shooting pain went from every few minutes to every few hours. I still take Vicodin occasionally and take the maximum dose of tramadol. I still have pain but have to balance pain medicines with being able to work. I have had struggles with the disability management and am currently back at work, though I really shouldn't be. I would suggest for those having struggles with your doctor to get a new doctor until you feel it is under control. My doctor has had this condition, although less severe, and understands the pain. My best for the others struggling with this, it is painful and depressing.

Comment from: Gabrielle, 55-64 Female (Patient) Published: March 01

If your vitamin B12 serum levels are anything below 400 ng/L consider this could be your problem. There's more and more evidence that the low normal levels actually indicate a deficiency. There are lots of reasons why you could be low in B12 especially if you are over 60. I have peripheral neuropathy and because I was low normal the neurologist didn't consider B12. Luckily my general physician was willing to give me B12 injections. I'm just beginning the treatment of B12 injections and there might be permanent damage to the nerves but certainly my other symptoms are already better; sore tongue, dizziness, extreme fatigue, and depression.

Comment from: mrcpath, 55-64 Male (Patient) Published: February 24

I am a pathologist and myself a victim of this dilemma. Let me be frank, there is no cure for this, only symptom relief, and ease of pain. Your ordinary general physician have not got a clue of what you are talking about when describing peripheral neuropathy and he will most likely only prescribe ordinary painkillers. This is a vast area of darkness and the so called expert a neurologist will 8 times out of ten put it down to just restless legs. Until there are millions of dollars to be made from research, we have to suffer.

Comment from: Tommy, 55-64 Male (Patient) Published: February 23

My peripheral neuropathy started with feet hurting, then burning and tingling which started moving up my legs. It has now consumed my entire body. Because of it I have had two neck surgeries, three foot surgeries, and possibly my lower back. The medications I have taken have put a tremendous amount of weight on me. Oh, by the way, I am having elbow surgery on Tuesday, the 23rd of February.

Comment from: Tops, 45-54 Female (Patient) Published: December 22

I have small dense fiber polyneuropathy. I have yet to meet anyone else with this condition. It took many years to be diagnosed as every doctor told me the same thing, 'it is all in your head'. How frustrating and maddening! I have lost use of left arm, really short painful numb nights, and can hardly sleep. No doctor will prescribe anything except Neurontin, which makes me act as if I'm drunk, so I take it every now and again for a pain break. As of now, no research is being done. Doctors say only people with diabetes gets this disease. I don't have diabetes, I walk funny, can't wear flats, clothes burn my skin, and shoes kill my feet. I could go on, but my right hand is wiped.

Comment from: Joey, 35-44 Male (Patient) Published: November 25

One of the most frustrating problems I have with bilateral neuropathy is explaining the pain to non-sufferers. It is constant. My feet feel like they are wrapped in tin foil that is on fire. Always. I take 2400 mg of gabapentin and 15 mg of Vicodin. Even with the medication, the pain is constant and negatively affects my quality of life. Sleep is difficult. Wearing certain shoes (flip flops) are impossible. Driving is hard because my foot often hits the gas while I'm trying to brake. It is awful, yet nobody really understands it; family, friends and (oddly enough) especially doctors.

Comment from: Dewberry, 65-74 Male (Patient) Published: September 03

It started with numbness and tingling in my legs and feet (left side worse). Walking was difficult because my balance was affected. I had EMG and MRI in January and was diagnosed with idiopathic neuropathy, although I believe polio as a child may have contributed, or thyroid imbalances in the last 30 years. I have been receiving Immunoglobulin therapy. I just had my 3rd session (5 days each session every 2 months). Side effects are mouth infections, hypertension, migraine type headache, sickness and vomiting, which last 3 days post infusion. Neurologist doesn't believe physiotherapy will be useful.

Diabetic Peripheral Neuropathy Slideshow
Comment from: yoshi g, 45-54 Female (Patient) Published: July 14

I have been suffering peripheral neuropathy for over ten years and it took me about four years to be diagnosed. My doctors made me feel it was in my head but once I was seen by a consultant they diagnosed me. The first couple of years it affected my hands and feet, then over the years my legs, my bladder, and bowel. I had strange pains and spasms. I rely on my partner and now full time caregiver for everything. I feel I have lost any independence I ever had and wish there was a cure or at least more understanding about this condition. Every day I wake up after a terrible night's sleep and have constant pain and wonder if it will ever stop, but it doesn't. When I have really bad months and new symptoms I have to go to new doctors and feel I am getting nowhere and makes me more depressed. I have been on different medicines over the years but not a lot helps. It has changed my life forever. I used to work all my life and now am made to feel bad and a burden on everyone and the state. I think people outside don't know or care about how distressing this illness is. I hope one day they will be able to help all people with neuropathy as they don't do enough for the sufferers out there.

Comment from: Mark, 55-64 Male (Patient) Published: May 20

I've had peripheral neuropathy (PN) since the late 90s. My first back surgery was in 96 and I had a L3 L4 herniated disc. Then 6 months later I had a more major cleanup of the same area. Shortly after that I started having numbness in my toes. I have seen a neurologist since about 2003, have been prescribed everything at one point or another. I had a fusion L3 L5 and throughout all this it only got worse. I spent 3 days at the clinic and all they could say was I must have inherited it from my grandmother (she had it but don't know why); she passed away before I had symptoms. I'm extremely numb from my knees down through my toes. I take 7200 mg of Neurontin and it only helps about half the pain. I've since had 2 fusions at the cervical level and now my right side is numb and my right hand is very painful like my feet. My story is long (sorry) and I have no hope of getting better. I take B12 shots every month, do not have diabetes, somewhat overweight (6 ft. 4 in. and 280 lb.), have trouble walking and exercising is difficult at best. I'm looking for a new doctor since my current one is out of ideas how to help me.

Comment from: Billybob, 75 or over Male (Patient) Published: April 07

I have had idiopathic neuropathy for over 20 years. Several chiropractors, neurologists and podiatrists later I have no change. The podiatrist did suggest PoDiaPN. After taking two pills a day I immediately discovered that I no longer had leg cramps whereas I had up 10 or 15 each night. Doesn't seem like this could have been placebo effect since I was sleeping. Although I basically have no pain, ever hour or so I had pin and needle attaches that last only a few seconds. That symptom disappeared after the PoDiaPN.

Comment from: evergreen1946, 65-74 Female (Patient) Published: December 30

I started having pain in my right and left elbows. Later the pain started on the top of my right shoulder and down my right arm, mainly around the elbow area. Then about two or three days later my index and thumb started to get a little numb. I started to use Flagyl for a female problem and I don't know if that caused it or not. I read that one cause of this was the use of Flagyl.

Comment from: Welsh jo, 55-64 Female (Patient) Published: October 16

I have suffered with peripheral neuropathy (PN) for over two years now with terrible pain and tingling in my feet, legs and fingers, and the pain does not go away even for just a minute. I am on 250 mg gabapentin per day; if it were not for that, the pain would be unbearable and I don't think I could go on. On top of that, it is now affecting the muscles in my legs, which ache terribly, and also makes my knees and my fingers very stiff. The doctor has given me paracetamol for the muscle aches, but not much help. I must say that I find vitamin B12 of some help, I take the slow release dose of 1000 per day. I also take multivitamin B as even though through blood tests my B12 is fine the added dose helps. But nevertheless, I'm still in pain on a daily basis. Whatever you take or do, it does not go away; to me it's like living with Chinese torture every minute of every day.

Comment from: Very upset, 65-74 Female (Patient) Published: September 16

I had a cortisone shot in my knee. I told my doctor I never had had cortisone. He said he liked to start with something less expensive. I should have listened to that voice in my head and said no to the shot. The first day I had a horrific headache followed by flushing of the face, then terrible pain in my pelvic area. By day two I was put on pain medications. Then by day five, it was when the pain medications were stopped that I started having the burning in the feet and arms at night. I couldn't go to sleep so took Tylenol at night. I was then diagnosed with idiopathic neuropathy. I never had any symptoms like this before the shot. I kick myself for having it because from all I read this is irreversible.

Comment from: greg, 45-54 Male (Patient) Published: August 05

I was diagnosed with multiple myeloma cancer and took Velcade, from which I got severe neuropathy. The doctors could only find two cases in the U.S. that caused such a severe reaction from the chemotherapy drug. I get plasmapheresis weekly, which is slowly helping. I couldn't walk when I got out of the hospital but now I am able to walk on my own. I still have terrible pain in my legs. But I don't have it in my arms and stomach. I am on Lyrica 3 times a day and narcotics but I don't like to be on them.

Diabetic Peripheral Neuropathy Slideshow
Comment from: little bird64, 65-74 Female (Patient) Published: July 31

I've only had peripheral neuropathy severely for a year but it's getting worse. It is traveling on to my back. The great news is I found a doctor that does nerve block. My feet are so cold and feel like walking on foam and toes feel like there's barbed wire between them. My big toe sticks out like a pointer, my daughter calls it my antenna. The doctor calls it sympathetic nerve damage. Mine was caused by too many Percocet, the previous doctor did not know how to treat it so just gave me pain killers. I am not diabetic, they tried all medications like gabapentin and Lycra. They didn't even touch the pain; I can't even wear my beautiful shoes. Luckily I found this pain management doctor that deals with pain so I go in for my 1st treatment in 2 days hoping he is my life saver to get back my quality of life; I still have a life to live.

Comment from: Anna, 55-64 Female (Patient) Published: July 28

I was diagnosed over a year ago with peripheral neuropathy. I was put on 25 mg Lyrica and the dose was increased to 300 mg over time but the cost is so ridiculous that I had to fight my insurance to pay for it. I backed it down to 100 mg a day now because I don't care for all the side effects. I have used traditional doctors, chiropractor, acupuncture, zone therapy and nothing is helping. It is getting worse. I just saw a new chiropractor that wants to see me 3 times a week for 12 weeks to start with and then reassess me and continue treatment, for a cost of $6500. I am so discouraged because I thought I was onto the answer. Back to the drawing board for me. I empathize with all who suffer like me.

Comment from: J.J., 65-74 (Patient) Published: July 07

I have damage to my spinal cord in two areas; cervical due to bone spurs and spinal stenosis in my lower back. This past year peripheral neuropathy symptoms have been unbearable. I take, under a doctor's care, gabapentin and tramadol. It helps if I take it several times a day, but I detest taking drugs. I don't know what to do. I take steroid injections in my spine every three months, and that allows me to be able to walk without a walker or cane, but it does not help the neuropathy.

Comment from: Stephanie, 45-54 (Patient) Published: March 19

I have had idiopathic neuropathy for 9 years (starting when I was 35). The burning in my feet and legs feels like I am being burned alive. I have tried everything available, natural and prescribed, without much help. I can no longer work, shower for very long, exercise, or walk more than a few steps at a time. The doctors have given up trying to help me. The chronic pain rules my life.

Comment from: joan, 65-74 Female (Patient) Published: January 23

I have nerve damage in both feet, the pain and numbness are bad enough but I can't stand the stiffness. It started right after I retired a year ago. It seems better when I'm walking. I remember I had a ruptured disc years ago, thought maybe that could have caused it. Neurontin is no help.

Comment from: HAMMER, 75 or over Male (Patient) Published: January 17

I have peripheral neuropathy in both feet and both legs. I had a nerve conduction test that verified it as nerve damage. My doctor prescribed Lyrica 300mg, 100mg three times a day. It works pretty well during the day, but when I lay down in bed at night I have excruciating pain in my toes and balls of my feet. I am not able to sleep. Each Lyrica dose lasts for about four to five hours, so it's not enough to last all day. My doctor prescribed hydrocodone once a day at night to help me sleep and ease the pain. I was advised by a friend who is a pharmacist to ask my doctor if I can take Nucynta 100mg three times a day as it might work better than the Lyrica. I haven't done this yet.

Comment from: Hope, 45-54 Female (Patient) Published: October 31

I have symmetrical neuropathy and abnormal nerve conduction in both legs. I had pain in my back , hips, groin area, and knees and elbows. I had pain in my legs and feet, fatigue and depression. I had on omeprazole or ranitidine for GERD. I had anemia last year, after three neurologists saying I had nothing. I took it to research by myself. I found out that all this neuropsychiatric symptoms can be brought up by b12 deficiency. I had myself tested and even after having had massive oral doses my B12 count was low. I am presently receiving shots and showing hopeful improvement.

Comment from: Rozaro, 75 or over Female (Patient) Published: October 15

I have had peripheral neuropathy for several years. I was put on Gabapentin (neurontin), in January. My leg pain (cold fire) was greatly relieved. After four months I developed crying/laughing storms, and swollen tongue and throat and I stopped. Doctors have not been able to stop the swelling. I cannot speak plainly, nor can I swallow normal sized food or pills. I am still seeking a 'cure'.

Comment from: Rhode guy, 75 or over Male (Patient) Published: September 14

I've been taking Dilantin (phenytoin) for 40 years and I am now suffering from very weak legs and peripheral neuropathy. I need a cane to walk and have significant pain after a long time on my feet. Maybe this is due to the medication.

Diabetic Peripheral Neuropathy Slideshow
Comment from: goldie, 65-74 Male (Patient) Published: June 22

I have found Benadryl cream to help with the shooting pain in hands and feet from peripheral neuropathy. Just apply to the area and repeat until you get relief. I was a long distance runner I should have quit sooner. I am also a 5 way heart bypass and prostate cancer survivor, and not diabetic. Good luck.

Comment from: Rock in Pain, 55-64 Female (Patient) Published: February 04

I'm sitting here crying because of peripheral neuropathy. After three years of constant pain, four doctors, painful feet injections finally I have some answers! The pain is so intense some days I feel I could just pass out! Nobody understands, and nobody believes me. The constant feet pain, any cold brings me to tears! I am in so much pain, and my pain doctor won't even give me pain medication. So I just sit home in constant pain! I am glad to know there are other people who have this debilitating disease, so now I know I'm not going crazy!

Comment from: bl curtis, 45-54 Female (Patient) Published: October 26

I have had neuropathy in my feet for years and it is getting worse. The only thing that makes it better is 2 tramadol and 3 tablets of 400 mg gabapentin in the morning and at night. I fight with the doctors every month to fill my prescription and then somehow they mess it up and I end up not having enough or any of either and go weeks with just gabapentin and it doesnt work. Right now it has been two weeks, and I keep getting the same story. The doctor will be in next week. I don't know if they think I am just taking the medication for the buzz or what. I am in pain and I cannot walk sometimes.

Comment from: traciW, 35-44 Female (Patient) Published: February 18

I just received diagnosis for peripheral neuropathy after taking a dose of Cipro in 2011. Cipro ruined my life. It left me in pain most of the time among even worse symptoms. It is hard to find a doctor to listen and understand FQ (fluoroquinolone) toxicity.

Comment from: mother, 25-34 Male (Patient) Published: September 09

With peripheral neuropathy I'm experiencing impulses throughout the body that fire continuously and do not stop. Sensations that are electrical in nature or 'light up' cause inability to focus or converse without sense of alternative or other conversation taking place in body that requires attention.

Comment from: mwfrost396, 45-54 Male (Patient) Published: April 24

I was diagnosed with peripheral neuropathy about a year ago. I was told it was brought on by my long term alcoholism. I was prescribed Neurontin and it seems to help. Also beneficial is exercise. I put 100 lb. weight on my right leg and work out about an hour every night. I"m walking better and walking seems to help a lot. Good luck to all.

Comment from: gerry, 75 or over Male (Patient) Published: December 13

I had zona twice in one year and lately it feels like someone is sticking a pin at the end of my big toe it happened a dozen times yesterday. I am seeing a doctor next week, I hope it does not get worse, I'm 81 years old.

Comment from: Old Texan, 65-74 Male (Patient) Published: October 24

I have had a mild case of peripheral neuropathy for about 4 years. It has affected my left hand, left and right feet. For unrelated reasons I started doing yoga about 2.5 years ago. An interesting experience is that the exercises, including the balance poses seemed to mitigate the effect of the condition. I take vitamin B and I would say that the left hand was worse 3 years ago than today. I also bike and swim for exercise. On the days that I exercise I seem to have fewer symptoms. Ibuprofen which I sometimes take for arthritis also seems to help a little.

Comment from: Penny, 45-54 Female (Patient) Published: October 24

I worked for over 17 years in medicine and when the pain and numbness started in my feet, I thought I just needed to move around more. Now because of the peripheral neuropathy, I have very poor balance, my feet cannot even stand to have air on them as the nerves are so agitated. My life has changed as now the same problems are occurring with my hands. They say exercise helps but I can't walk.

Comment from: wanttohelp, 55-64 Female (Patient) Published: October 15

I've had peripheral neuropathy (PN) for over 10 years due to Type 2 diabetes (insulin, metformin and others). I go to reflexology treatment weekly and it makes a difference. Look for a certified reflexologist. It's costly but I don't have to deal with side effects of strong medications that only mask the problem. Unfortunately, exercise doesn't yield the same result.

Diabetic Peripheral Neuropathy Slideshow
Published: July 15

I am disabled with peripheral neuropathy; I am on the highest doses of a series of medicine. We started at the lowest dose and each would work for a time and the pain would come back worse. Not just in my feet and legs although this is where it started. Mine is idiopathic neuropathy. For the last 2 months my feet swelled, mostly on the left side. Now they aren't swelling as much but the pain is unbearable and it is difficult to walk. The ankle on the left still swells, a lot of the time it feels like I have wide straps wrapped around the middle of the foot and pain shoots up and down the inside of toes and legs. I am under the care of a neurosurgeon and my family doctor. I just thought you might have some advice, since we seemed to be at the end of the rope.

Published: July 07

I have peripheral neuropathy as the result of a nerve being compressed during a spinal fusion surgery. It has been a year now, and I still have the pins and needles, bee sting, electric shock and shooting pain sensations in my leg and foot as well as the loss of sensation and hyper sensation of the skin. I currently take 100 mgs of Lyrica three times a day. I will be undergoing a trial using a spinal stimulator that will hopefully lower the level of pain that I have. Then, if it helps, it will be permanently implanted in my spine.

Comment from: shellyny, 45-54 Female (Patient) Published: March 26

I am in 24/7 pain and have peripheral neuropathy in my feet and hands and I am not a dietetic.

Comment from: Greenponder, 55-64 Female (Patient) Published: September 26

Sometimes the peripheral neuropathy in my feet is so bad that I almost wish the paraplegia would return so that I would not feel it.

Comment from: Joanne, 45-54 Female (Patient) Published: August 15

I was just recently diagnosed with polyneuropathy peripheral, I don't know the cause.

Comment from: chickenlegs, 75 or over Female (Patient) Published: July 18

My doctor has given me pills for peripheral neuropathy, to take 1 in the evening. I've had these pills before; they made me feel very squeamish in the morning so I only took them for a week, they are also prescribed for depression. I think they are called amitriptyline. I am diabetic type 2, I am told my control is very good.

Comment from: Biju, 35-44 Male (Caregiver) Published: July 08

Peripheral neuropathy can be temporarily taken care by Anodyne therapy treatment. Continuous care can even reverse the sickness permanently.

Comment from: rich1938, 75 or over Male (Patient) Published: May 23

I have had neuropathy in my feet and lower legs for years, but for the last 1 1/2 years my knees have been very weak. I am not diabetic. I wonder if my neuropathy could be causing my knee weakness.

Comment from: joe blow, 55-64 Female (Patient) Published: April 11

There is numbness and then tingling nerve pain on left side.

Comment from: Johnboy, 55-64 Female (Patient) Published: February 14

I've been suffering from burning, buzzing sensations, muscle twitches in my legs and arms, dizzy head, impotence, irritable bowel syndrome, crying for no apparent reason, headaches, migraine, shivering cold and stiff neck. I am so scared and terrified to go to my doctor.

Comment from: Bill, 75 or over Male (Patient) Published: November 18

I was diagnosed with multiple myeloma cancer in October 2012. I underwent chemotherapy treatment (Velcade) for approximately 5 months. I have what has been diagnosed as CIPN (chemotherapy induced peripheral neuropathy). I have tried several different treatments of which none has seemed to help except maybe acupuncture.

Comment from: Cyndi, 45-54 Female (Patient) Published: August 08

I noticed the feet pain 5 years ago and thought it was just from being on my feet too much. The pain got so bad i couldn't walk bare foot and it was painful to even take a shower. When I lay down at night the pain and cold freezing stabbing feeling keep me up for hours. I tried nerve blockers, medications, and surgery. Surgery seemed to make it worse and now i am so frustrated. I'm tired of the severe pain and don't want to keep taking narcotics. Don't know what to do.

Diabetic Peripheral Neuropathy Slideshow
Comment from: tg1, 55-64 Male (Patient) Published: August 08

To Marvelousone. I have symptoms similar to yours. I am doing fairly well on a regimen of Tramadol, Neurontin, and Metanx. I also use Lidocaine patches occasionally for the burning feeling when I am off my feet. Hope this helps

Comment from: marvelousme50, 35-44 Female (Patient) Published: August 01

I have terrible burning pain in my feet and legs after walking on them or just for no reason. The burning and stinging pain keeps me awake and I cannot get relief from it. I am sure it is peripheral neuropathy. I think I am pre-diabetic because sometimes my sugars go over 200 after I eat. Plus the last A1C test I took I was at 5.9 and 6 is pre-diabetic. I have not taken another test since then and it has been over a year or longer. I take Neurontin for the burning pain and it helps some I think but not enough. I also tried Lidocaine and I think it helped somewhat. Has anyone tried Neurontin, Lidocaine, or any other medications that have helped you to get relief from peripheral neuropathy? Has anyone tried any natural remedies or any remedies to help lessen or cure peripheral neuropathy? Any advice or suggestions would be greatly appreciated!! Thanks so very much!!

Comment from: Spec954, 45-54 Male (Patient) Published: May 31

I just had a punch biopsy which the results came back saying that the peripheral neuropathy has damaged the nerve endings all over my body. I have taken Cymbalta, Neurontin, Lyrica, and have also had many shots in the legs, back and neck and nothing works. I work 40 hours a week and I am on my feet all the time. I wonder if going on disability would be a better fit for me. I am 52 and have had this problem for years.

Comment from: Goshen, 7-12 Male (Caregiver) Published: May 03

Peripheral neuropathy can also be caused by mosquitoes carrying the West Nile Virus. My son was bitten when he was 7 and has demyelinating polyneuropathy.

Comment from: Guy52, 45-54 Male (Patient) Published: May 01

I have had PN for over a decade. Cymbalta handles 50 percent of the burning (knees down) and hydrocodone/oxycodone handles most of the remaining burning and cuts the Voodoo doll lightning strikes in half. As I have built up a resistance to opioids, I've had to experiment even more for relief. I have found that using the Preparation H Wipes on a burning area gives about 15 to 20 minutes of relief. It's good to know when breakthrough burning is making you want to scream.

Published: July 16

I have peripheral neuropathy and have been taking Lyrica (75 mg, three times a day) for three years. I am always tired and depressed because it is not going away. It is most prevalent in the months when I have to wear closed shoes. My family does not understand the pain and anxiety I go through every day. They cannot see it, so they don't believe it. I am currently going to a chiropractor and am hoping that he will align my spine and neck to bring me back to what I was before. He uses manual adjustments with the neck and spine.

Published: July 15

It began to have problems about 5 years ago, my hands and feet tingling and muscle spasms, they came and went but never stayed long, then a year ago I had problems with my right leg going numb from the thigh down and not being able to stand or walk on it. That lessened and moved to my hands, then to my feet working its way up my legs all the way to my lower back, not in the joints mid muscle with loss of feeling and sensations. Then it went to my hands with weakness and cramping. At times the pain is overwhelming and I get no relief from any of the medications prescribed so far. I want it to end one way or the other.

Published: July 14

I have pain mostly on my left side of body. It's sharp pain although it has an accompanied sensation which is very disturbing and hard to tolerate. This sensation is like the feeling you get when you scratch your finger nails on a black board. I also get pins and needles along my arms and burning sensation mostly on my palms but at times it is all over including my tongue. When I am depressed, stressed or worried the symptoms seems to increase. This is a problem because I am fatigued from the feeling. I am booked in to see a pain specialist and neurologist in the future but I need something now. Has anybody had same experience symptoms and what helped?

Published: July 14

I began to have problems about 5 years ago, my hands and feet tingling and muscle spasms, they came and went but never stayed long, then a year ago I had problems with my right leg going numb from the thigh down and not being able to stand or walk on it. That lessened and moved to my hands, then to my feet working its way up my legs all the way to my lower back, not in the joints mid muscle with loss of feeling and sensations. Then to my hands again with weakness and cramping. At times the pain is overwhelming and I get no relief from any of the medications prescribed so far. I want it to end one way or the other.

Diabetic Peripheral Neuropathy Slideshow
Published: July 09

Four years ago I started getting burning feet and lower legs which occurs daily with varying degrees of intensity and is worse at night, often waking me up. I have had extensive tests and no cause could be established. I take Vitamin B complex but this does not seem to help. I am reluctant to take painkillers as I was told they need to be taken continuously. At the time it started I was taking Ciprofloxacin for Prostatitis. Does anyone have similar burning pains and have the found any way to emliminate the symptoms?

Published: June 26

I have severe pains in my hands with numbness and tingling. Three doctors have said they don't know what is causing it. A diabetic relative told me to look up peripheral neuropathy on the web and sure enough it looks like what I have. I am not diabetic. I am seeing my internal medical doctor tomorrow about this. I recently had cancer and was taking chemo. It looks like the chemo might have been the cause of this.

Published: June 24

I'm a 41 year old male and have been diagnosed with Bilateral Peripheral Neuropathy since 2007 & had both the NCV and EMG tests. I also had been diagnosed with Diabetes Mellitus since 2000. I find that I get pain during and after exertion and weight applied. This resembles extreme sharp pain & cramping in my lower ankles and feet, to the point of not being able to continue walking or standing. I was told by physician to keep hydrated, get off my feet and keep them elevated, and he prescribed a drug called Lyrica. This does help somewhat even though the nerve damage is irreversible. However, with Diabetics its also about getting those High glucose readings below 120, so no further damage occurs.

Published: June 20

My right arm starting feeling weird, kind of numb, my hand looks swiveled (sp) felt like it was drawing in, and very cold from shoulder to finger tips. Can P. N. effect your head, because 3 days ago sitting at my PC everything seem to shift left (very quickly) in my brain, it was very scary and I grab hold of my desk. I didn't move, just the inside of my head. Had a CT scan and blood work and all was okay.

Published: June 20

I have been diagnosed with Peripheral neuropathy and have a Nerve Conduction Velocity Test. It is only in my toes and test showed that it was not a severe case. As I am only 63 sometimes think about the next 20 - 30 years and its' progression although neurologist as said it will be fine! Would taking B12 and Folate be useful as I think what I have is 'idiopathic peripheral neuropathy.'

Published: June 18

I took methotrexate for a brief period - three weeks, five mg a week for sarcoidosis. After the third dose, I developed horrible burning pain in my arms from my neck into my hands. It was the worst pain I have ever had. The attack lasted almost a month. I still have numbness, pins and needles and tingling in my arms, hands and bottom of my feet. The doctor said "you won't even know you're taking it since the dose is so low." Don't take it, its poison!

Published: June 18

I am currently very overweight and have type 2 Diabetes. (I had the following problems even when I was 160 lbs. thinner than I am now). I get very severe cramps in my thighs at night. The pain feels like calf leg cramps (or "Charlie horse") but is so very, very severe. It feels worse than any leg cramp I have ever experienced. The pain is so bad and no amount of stretching or bending or walking on my leg seems to help. It goes away after about 10 minutes and the next day the muscles in my leg still hurt. I have never had a heart attack before but to me the pain feels like it would be comparable to that since it is so severe. I have had gallbladder disease and had my gallbladder removed and a gallbladder attack feels like this kind of pain. I have told my doctor about this pain and had tests done to rule out blood-clots and they cannot figure out what it is or what causes the pain. From time to time I also get this same type of muscle pain in other parts of my body such as my lower legs, feet, torso and back. I do not know what to do about it or what is causing it or how to stop it. My doctor does not seem to take it seriously since the previous tests do not show anything conclusive.

Published: June 18

I was diagnosed with peripheral neuropathy a few years ago; I had been unable to eat or drink anything for three weeks, was essentially bedridden during that time and could no longer stand up. My weight dropped from 150 to 99 lbs in those three weeks, finally giving in and calling an ambulance. Three years later, I still have some numbness in my feet, and am still unable to drive, although I can now walk and generally function better.

Published: June 18

I have a burning sensation in several toes in my left foot. Its like little sharp jabs as if someone was sticking a pin in my toe. I do have diabetes 2 and have been on medication for several months now.

Diabetic Peripheral Neuropathy Slideshow
Published: June 16

I have a severe burning sensation near and around my ankle. It is the same leg where I had deep venous thrombosis.

Published: June 16

I was diagnosed two years ago with peripheral neuropathy in my feet and legs. Doctors suggested it was brought on by trauma: deep sores that appeared on the outside of both of my ankles after an unintentional overdose of Ambien, ambulance transport and subsequent hospitalization - I believe the sores were caused by paramedics strapping me down to the gurney, but since I was unconscious, I have no proof that this occurred. In any event, I have PN and the pain has severely increased over two year's time. Worse than the pain is the accompanying untreated depression. I am 63 years old. I do not want to live with these conditions. The depression worsens by the day. No amount or types of psychiatric medications have helped the pain of PN or the depression. I want to give up but haven't yet.

Published: June 13

I suffer from, sudden awakenings of leg cramps. These cramps are extremely painful. They will come on in my sleep after I've been asleep for about two hours. Once the first cramp hits my leg; I will normally write off any kind of useful sleep. Very hot baths will sometimes stop these cramps; but only for short periods. Makes me hate the thought of lying down at night. I would never sleep again if it would stop the cramps forever.

Published: June 11

My husband suffers from PN that started several years ago. He is not diabetic, and the cause has never been determined. He suspects the cause may be from exposure to Agent Orange while serving in Vietnam in 1967. It has gradually gotten worse, especially in his hands and small motor functions.

Published: July 10

I have severe discoloration of my feet and ankles and a burning pain that sometimes reaches to my mid calf. It mostly happens when I am in bed asleep. I have been diagnosed with Sensory Peripheral Neuropathy.

Diabetic Peripheral Neuropathy Slideshow
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