Patient Comments: Peripheral Neuropathy - Experience


Please describe your experience with peripheral neuropathy. Submit Your Comment

Comment from: granger01, 19-24 Female (Patient) Published: October 26

I was diagnosed with peripheral neuropathy when I was 20. My feet feels like they are burning at times, or I feel like there are electrical currents shooting up when I try to walk. There are times when I was walking and I suddenly couldn’t feel my legs so I ended up falling to the ground. I was wondering if that is normal. I am 22 now and my neuropathy has progressed to my right arm. I usually drop objects that I am holding and sometimes, lifting objects weighing more than 0.5 kg is a struggle for me.

Comment from: Marlene, 55-64 Female (Patient) Published: August 24

I have peripheral neuropathy and the pain in my feet is unbearable and excruciating. I cannot walk. My left foot is constantly swollen and the pins and needles and shock feelings never subside. Since the day this started it has not stopped at all, in fact it feels more painful as time goes on. My doctors seem to not believe me as far as pain goes. They prescribe gabapentin which does nothing at all for the pain. I am also given hydrocodone but not enough to last the month. I can’t sleep due to the pain.

Comment from: Becky, 75 or over Female (Caregiver) Published: February 11

Broken neck fixed with screws. I have bad peripheral neuropathy, blood pressure up real high at times. I am on metoprolol 50 mg. I can’t keep it controlled.

Comment from: Kevin H, 65-74 Male (Patient) Published: February 05

I am a 69 year old male who started presenting symptoms of peripheral neuropathy in 2014. I was placed on various medications that were ineffective at treating the problem. I had nerve pain in my legs and feet, and an affected gait, as well as a loss of balance. I ended up on Codeine Contin that didn't work. Out of desperation I tried over the counter pain medications. When I tried Robaxin (methocarbamol) it helped. I stayed on this drug as well and the Codeine. I have noticed a marked improvement in my symptoms.

Comment from: Maggie , 45-54 Male (Patient) Published: October 24

I was diagnosed with Hashimoto's hypothyroidism. The days leading up to my emergency room visit are ones I'll never forget. I had pain in my abdomen, my period was two weeks late and I was badly constipated. My headaches grew fast to daily migraines that didn't ever stop. I had fast heart rate, trouble breathing, and food sensitivities. Then fatigue took over so much I couldn't physically get out of bed. I lost consciousness and turned blue and purple, and I was so pale. My sister saved my life taking me to the hospital.

Comment from: stevensprat, 65-74 Male (Patient) Published: October 07

The doctors have ruined the nerves in my feet after chemotherapy treatment for 4 weeks. I’ve been suffering with peripheral neuropathy for about 27 years, and they don't get the slightest bit better. Wonder if anyone else is suffering with this problem.

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

I had a massive pulmonary embolism 2 years ago. I was told I shouldn't have survived. The last 2 weeks I have had a racing heart, hands and feet ice cold yet numb. It makes me very afraid. My fingers and feet are that way now. I can't lie down, it gets worse. I feel as though I'm going to die. I hate hospitals. Reading the posts here makes me feel so bad for all of you. Wish you good luck and improved health. I think what I have is peripheral artery problems related to my pulmonary problems.

Comment from: pupplesan, 45-54 Male (Patient) Published: July 02

I developed a life-threatening illness that caused septic shock and systemic inflammatory response syndrome (SIRS). I spent four days on a ventilator and twenty days in the ICU. When I was discharged I noticed that I had numbness in the toes of both feet. This never resolved and has progressed to involve the whole foot. I have all the classic symptoms of peripheral neuropathy and this has more or less destroyed a lot of my life. I try to ignore it and the symptoms do improve once I start walking.

Comment from: cheryl, 45-54 (Patient) Published: July 02

I have had small fiber peripheral neuropathy for almost 2 years. I am 53 years old. I have no diabetes, lupus, multiple sclerosis or any of the other common causes. I have no pain (well not yet anyway), but I am slowly going numb over my entire body, mostly symmetrical. The numb spots continue to grow; some are small (a little more than a pin point) and others are much larger (the size of my fist). Almost every time I take inventory I find a new spot or a spot that is now larger. I have tried many medicines and tests, nothing works.

Comment from: sad in FL, 65-74 Male (Patient) Published: June 26

Symptoms of peripheral neuropathy came on suddenly; difficulty walking and feelings of electrical current running down from waist to feet. I also suddenly developed bladder problems. A specialist determined Cipro (an antibiotic) was the likely cause. Since coming down with the aforementioned symptoms, I have had burning, stabbing and electrical sensations all over my body. Also pinprick sensations everywhere. It has been about 9 months of pure misery. I hope I am set free from this.


Diabetes Nerve Pain: Improving Diabetic Peripheral Neuropathy See Slideshow
Comment from: Ellen , 55-64 Female (Patient) Published: June 06

My story is confusing and scary for me. I’m not diabetic but seem to have all the types of peripheral neuropathy, I wonder if this is possible. I’ve read all the conditions of this debilitating disease and it seems I fit the profile for each one. How can this be!

Comment from: Msbenz, 55-64 Male (Patient) Published: March 07

I walked on cement and asphalt nearly 5 or 7 miles per day for 5 to 6 days per week at 10 hours per day. I felt severe foot pain at the end of my day’s work. This first started about 2 1/2 years ago. By August 2018 I could barely walk to my car. I also suffered and was treated for plantar fasciitis during that time period in both feet and had surgical procedure completed to relieve pressure. Within two months of having this procedure completed in my left foot I started feeling the symptoms of peripheral neuropathy.

Comment from: Dragonrawr, 35-44 Female (Patient) Published: February 01

I have the worst pain in my legs. My feet are on fire, feels like bee stings from time to time. My calves, buttocks and side of thighs throb. I have degenerative disc disease, spinal stenosis, and peripheral neuropathy. I have had a decompression surgery in the lumbar and sacral vertebrae to fuse. At night the only time I have relief is if I move my legs. I take Motrin, Neurontin generic, and magnesium. I wonder if there are any natural fixes. I'm living on 5 hours or less of sleep a night, forever it feels like.

Comment from: Ozzie , 65-74 Male (Patient) Published: January 30

I have been diagnosed with spinal stenosis, which causes both a sharp pain and stiffness in my neck. Soon after this diagnosis, my fingers started experiencing a stinging/burning sensation, which continues to vary in intensity. The finger pain was related to my spinal condition and they were considering an injection to relieve the neck pain and confirm the finger connection. I have since learned that the problem could be peripheral neuropathy, since it exists apart from the spine or brain. I don’t know what to do.

Comment from: Carol quesenberry, 45-54 Female (Patient) Published: January 30

I had acupuncture about 6 years ago in my feet and the same night was hospitalized for 10 days. My feet swelled up 2 times bigger than my shoes and turned all colors. I could not get out of bed or go to bathroom by myself because it took my arm use away to pull up. I could not walk by myself. They kept telling me they couldn’t find the problem. Finally a doctor came in and said it was the acupuncture. I was diagnosed with peripheral neuropathy about 3 years ago and a year later diabetic. My feet are in pain.

Comment from: German Shepherd , 55-64 Female (Patient) Published: December 18

I am worried about what is happening to me, I wake up sometimes and it can be either arm affected by peripheral neuropathy. I can't lift my arm, it is very painful. I am almost crying because of the pain. I am a heart patient.

Comment from: Ari, 65-74 Female (Caregiver) Published: December 18

I have a degenerated disc in my lower back causing peripheral neuropathy. I have numbness in both feet, legs and upper thigh. I'm taking gabapentin. I'm so afraid.

Comment from: Maggie, 65-74 Female (Patient) Published: December 12

I use oils and vitamins and soak my feet, hands, etc. Nothing works for my peripheral neuropathy for more than a couple of days. I don't sleep well. I go to sleep maybe around 2 or 3 in the morning. I sit on the edge of the bed sometimes and just move my legs. Helps some but not always. I get no answers. At my wits’ end. I could just go on and on but doesn't help.

Comment from: Ben, 75 or over (Patient) Published: November 26

I was diagnosed with peripheral neuropathy 5 years ago. I have damage to the myelin sheath. I lost a lot of calf and quad muscle in my left leg and some in the right leg. I have no pain and no medicines. I exercise and use a cane and walker for long walks. Recently, for 3 nights I had terrible shocks below the left ankle. I don’t know what to do.

Comment from: Sherrynan, 55-64 Female (Patient) Published: October 30

My fingertips, feet and toes tingle and feel numb from peripheral neuropathy, and it is almost a heavy feeling. I'm having problems with my bowels and kidneys. I'm finding that when I lie down it's worse. I've been told to go to a neurologist to figure out what's causing it. I do have bowel, kidney function problems. Like constipation. I have trapped urine that sometimes will not come out. It's a scary thing when you feel this.


What is diabetic peripheral neuropathy? See Answer
Comment from: Lostforever, 25-34 Female (Patient) Published: October 26

I have small fiber neuropathy. I am in my late 20s and even with gabapentin and pain medicines I stay in pain 24/7. It has changed my life forever. I cry almost every day from pain and restless legs. I'm losing my mobility from the pain. Someone please do more research on small fiber neuropathy!

Comment from: Josephine , 65-74 Female (Patient) Published: October 24

I’ve had peripheral neuropathy since 2009 and it’s taken its toll. Now I can’t travel far as the pain is so bad and no medical people are concerned, they just say ‘there is no treatment.‘ I take no medicines as they do nothing for the pain and leave me like a zombie.

Comment from: iseesparkle, 55-64 Female (Patient) Published: October 19

I have had multiple sclerosis for 40 plus years, and symptoms like peripheral neuropathy have been manageable with drugs and exercise. This last exacerbation caused my knees to lock. I wear braces at night to keep my tendons and muscles from shrinking. I currently have Botox injections into my abductors and hamstrings. I would like to one day be able to take a step or two upright.

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

I suffer from peripheral neuropathy pain and it hurts so bad that I can’t walk anymore. The pain, tingling and numbness keep my feet unbalanced and I can’t stand on them. They are stiff and swollen, I need some help, anything that can help.

Comment from: JR Arnold, 65-74 Female (Patient) Published: September 13

I have peripheral neuropathy in my feet and ankles. I am trying to find out how I can prevent it from moving further up my legs. I am 70 years old. I had lumbar spinal fusion 5 years ago. I have type 2 diabetes for 25 plus years, in very good control with A1C of 6 and never above 7. I am in a yoga class 3 times a week and walk over 1 mile 2 times a week. I am on gabapentin 600 mg TID. My symptoms seem to be moving higher up my legs.

Comment from: BillBull, 65-74 Male (Patient) Published: August 22

Yes, I do have peripheral neuropathy but I didn't have at the actual time of the onset of losing my balance. I tried physical therapy, but no luck. I had one last back surgery 2 years ago and it seemed to take 30 percent of the strength out of my legs. Also the last surgery which was for stenosis took away 95 percent of the pain I had. The feet had more pain and numbness.

Comment from: JeremyDAnson, 35-44 Male (Patient) Published: August 21

I don’t know if I have peripheral neuropathy, but pretty sure feels like it. I have type 2 diabetes, have had it for 2 1/2 to 3 years now. Weird stuff is going on with my legs, especially when I’m outside or near water or metal (copper piping to be more specific). My legs feel like they’re rusting, the doctors called it cellulitis. I took medicine for but it’s coming back, and stronger I think. Also I’ve been having weird cramps in my legs and the rest of me.

Comment from: Coffeeyak, 45-54 Female (Patient) Published: August 21

I have small fiber neuropathy (SFN). I had a total knee replacement 2 years ago. Numbness in the knee is increasing over time. Knee also feels like it kicks back at times though it doesn't actually lock. I suspect it is the SFN since the knee doctor continues to tell me all looks good from an orthopedic perspective.

Comment from: Edward, 75 or over Male (Patient) Published: August 14

I wonder if a past severe wrist injury that occurred when I was 23 years old (left wrist was broken and severely smashed), can cause problems with peripheral neuropathy in later life. I am now 77 years and have developed numbness and tingling in that hand.

Comment from: emmamarie, 45-54 Female (Patient) Published: August 01

I am almost certain peripheral neuropathy is what I have. I have type 1 diabetes which was undiagnosed for a long time! My stomach is huge, I honestly look like I am heavily pregnant. I also have pain in my foot around my toes, it is red and burning and feels like someone is always squishing my toes. I have been all over the place trying to figure out why I am vomiting and constantly sweating. Looking at the symptoms of this I cannot see that it could be anything else.

Comment from: marie, 65-74 Female (Patient) Published: July 23

My legs and feet are painful and become cold from peripheral neuropathy. I have severe pains under my feet, unstable walking, poor balance, and always hungry and thirsty. I have Parkinson’s disease and been on Duodopa for 9 years.

Comment from: Faith, 25-34 Female (Patient) Published: July 17

I have very painful and constant tingling from peripheral neuropathy; burning and itching as well. It’s in my feet and I cannot move my toes well. It feels very tight in my feet like someone is squeezing it. If I wear tennis shoes, my toe could be misplaced meaning, one might be folded over. Since I can’t move my toes it gets stuck there and I’m in pain. I have to dig my hand in there and try to flick my toe out. I wear tennis shoes 2 or 3 sizes bigger now looking like big foot!

Comment from: Woody, 65-74 Female (Patient) Published: July 11

I have peripheral neuropathy in my feet. I feel really bad. I can’t wear shoes period, and when I do it is pure torture they hurt so bad. I take 1800 mg gabapentin every day and it doesnt help much.

Comment from: Maureen, 55-64 Female (Patient) Published: July 10

With peripheral neuropathy I have itching on hands and palms, feet sole and top, legs and arms, burning in fingers and feet (top), numbness, tingling and tight feeling in hands and feet, cramping, and redness in palms. I also have fatigue, am constantly sleepy with sleepless nights, weight gain, and constant bloating in stomach. My digestive problems seem unexplained.

Comment from: Chrissy, 35-44 Female (Patient) Published: May 04

My peripheral neuropathy started as just some tingling, then it progressed. It's very painful for me to walk. I have pins and needles, numbness, sharp pain, my muscles cramp and my legs shake. They're freezing all the time, but when they get hot it's the worst feeling in both legs and feet, but my left leg is worse. I've had an EMG (electromyogram) and NCS (nerve conduction study) done, I go in two weeks for surgery for a nerve biopsy. I'm also getting sent to a multiple sclerosis specialist. I take gabapentin and nortriptyline for the pain.

Comment from: annette, 65-74 Male (Caregiver) Published: April 24

My husband developed peripheral myopathy and neuropathy, vision issues, bladder incontinence, stiffness, pain, insomnia, depression and memory loss 4 days after his flu injection. He is seeing our family doctor, an acupuncturist, and a physical therapist. He's not getting better. I need help.

Comment from: Connector, 65-74 Male (Patient) Published: March 12

I have tingling on the top of the big toe (right foot), near the 'knuckle,' especially at night. This keeps me awake or interrupts my sleep. I haven't found any medication that will alleviate the condition, except an opioid (which induces sleep), which I am reluctant to take. I don't have any of the obvious triggers for my peripheral neuropathy: diabetes, immune disease, chemotherapy drugs, shingles, alcoholism, or kidney failure. I am thinking it is either nerve entrapment, or a vitamin deficiency. The condition has been on-going for 3 or 4 years.

Comment from: floxhell, 65-74 Male (Patient) Published: February 28

The peripheral neuropathy ranges from the entire calves being cold to the bone, like it makes me feel that I have bone cancer, to freezing cold toes. It gets worse when I am trying to sleep lying still and the blood is not circulating around at all. The bottom of the feet get bright red, and instead of feeling hot, they feel very cold; painful cold. I have sat on the edge of the tub with both feet in a big home depot bucket of warm water to get some relief I cannot tell you how many times. Having to do that at 2 am after 3 sleepless hours is not living. And I have had this for twenty years. I lost the most productive years of my life. I got nothing from any lawyer, nowhere, the lawsuits were for Levaquin victims and the lawyers didn't know Floxin is the same no matter how many times I told them.

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: 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.

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.

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: Stug, 75 or over Male (Patient) Published: August 27

I have peripheral neuropathy with numbness in soles of both feet that makes balance a challenge while standing and walking.

Comment from: Cat, 35-44 Female (Patient) Published: April 12

My peripheral neuropathy gets so severe at night, sometimes in the front and back of my legs that I almost black out and I can't move at all.

Comment from: Robyn, 65-74 Female (Patient) Published: April 10

I don't know if it's peripheral neuropathy but I sometimes feel like my whole body has been covered in something very hot.

Comment from: Dot, 75 or over Female (Patient) Published: January 17

I have itching on top of my feet from peripheral neuropathy, mostly at night.

Comment from: Redhorse, 55-64 Male (Patient) Published: January 10

After a diabetic coma I woke up to excruciating pain in my right foot and leg just above my ankle. I hope this pain from peripheral neuropathy can be alleviated so I can walk again.

Comment from: insightneeded, 75 or over Female (Caregiver) Published: November 26

I am a 90 year old female diagnosed with prediabetes and peripheral neuropathy with complaints of head surges. I wonder what the likelihood is of these head surges being related to peripheral neuropathy.

Comment from: moose, 65-74 Female (Patient) Published: September 21

I had surgery on my back, I had a disc pushing on a nerve. This was 10 months ago and now I have numb legs and feet. I wonder if this is peripheral neuropathy from the surgery.

Comment from: Julia , 45-54 Female (Patient) Published: August 23

Peripheral neuropathy is like having your feet submerged into a bucket of ice water and you can’t remove them even when the pain becomes unbearable.

Comment from: judy, 65-74 Female (Patient) Published: August 21

I have pin in ankle which was broken in three places. Years later it goes to sleep from peripheral neuropathy, mostly while lying down.

Comment from: Kathleen , 45-54 Female (Caregiver) Published: August 03

I am so curious to know why I am experiencing excruciating pain in my feet to the point of inability to stand or work. The pain us very bad throughout my feet like sharp shocks and numbing, but deep pain even when not applying pressure but after and during walking, or standing. I am worried if it is peripheral neuropathy.

Comment from: Bob, 65-74 Male (Patient) Published: July 20

I have burning and tingling in my feet and tender sensations in finger tips from peripheral neuropathy.

Comment from: Poo, 35-44 Male (Patient) Published: June 28

I have tingling in my feet from peripheral neuropathy, and it hurts to walk.

Comment from: Debe, 55-64 Female (Patient) Published: June 28

I have diabetes and have burning feet. I’ve tried medication and home remedies for my peripheral neuropathy nothing works. I can’t stand it anymore.

Comment from: Sweettulip, 45-54 Female (Patient) Published: June 26

I have transverse myelitis and some of the things people are saying about peripheral neuropathy sounds familiar. I also have vitamin B and D deficiency. I also had a flu shot that I think triggered it.

Comment from: Dorthea Mathews, 45-54 Female (Patient) Published: May 16

After having brain surgery I am still not able to stand. I have peripheral neuropathy, am off balance for three years, and very forgetful. I ask the doctor’s assistance and she said it's nothing but it is something! I told her I was rushed to hospital for brain bleed in the same spot, same side, and she says it's nothing.

Comment from: Douglas, 55-64 Female (Patient) Published: April 24

I have burning feet, pain and numbness like needles sticking me, from peripheral neuropathy.

Comment from: Valerie, 55-64 Female (Patient) Published: April 13

I have numbness in my hands and feet after brain surgery. I had an aneurysm clipped, and with peripheral neuropathy, my hands are numb all of the time and my feet when I lie down.

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.

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.

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: 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.

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: grand daughter, 65-74 Female (Patient) Published: June 25

My left leg is blocked and they say it is 60 percent. They won’t open till it gets to 80 in the meantime I have a hard time walking because of peripheral neuropathy.

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: 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.