Patient Comments: Peripheral Neuropathy - Symptoms

Question:

What were the symptoms of your peripheral neuropathy? Submit Your Comment

Comment from: Susan, 75 or over Female (Patient) Published: January 16

Numbness, swelling of legs, and ulcers were caused by peripheral neuropathy and I had to have amputation of my right leg below my knee due to gangrene. Now amputation of my little toe due to blister appearing, and infection that led to bone infection on my left foot.

Comment from: Sarah, 65-74 Female (Patient) Published: November 19

First symptoms of peripheral neuropathy appeared 14 years ago with numbness in my toes. This was quickly followed by my right foot becoming numb. Within the next 8 years loss of balance arrived and now my hands are affected, and bowels. My doctor has not diagnosed me with anything but prescribed Lyrica. This is assisting but my hands are swollen and sore.

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

Severe foot pain, numbness, tingling, burning, feet feeling crushed, and severe pressure are my symptoms of peripheral neuropathy. It is spreading to ankles and lower legs.

Comment from: Joyce, 55-64 (Patient) Published: January 04

My symptoms of peripheral neuropathy were feet burning, numbness at my toes, and it was rather painful.

Comment from: flores, 55-64 Female (Patient) Published: October 29

I get frequent sensation that travels up my feet and legs in a matter of seconds and settles in the pit of my stomach as an anxious feeling. It's a very strange symptom of peripheral neuropathy.

Comment from: Lyn, 45-54 Female (Patient) Published: August 07

I had a bad case of bronchitis with an ongoing cough. I coughed so hard you could feel the tiny blood vessels breaking in my back. I had it for over 8 weeks. About 3 to 4 weeks later I felt a sharp pain from the bottom of my breast bone that radiated under my breast, now I feel a pain near the bottom of my ribs on my back, if I twist I really feel it. I think it is costochondritis.

Comment from: Notsoscary, 55-64 Female (Patient) Published: July 13

I never comment on these things but I felt the need to after reading these comments. I am under 30, pregnant, and had to have my bone marrow biopsy due to low CBC results (among other things). I couldn’t be sedated for the procedure and most pain medicines are off the table while I’m pregnant. I had lidocaine injected around the back of my right hip and then the procedure started. It took roughly 5 to 10 minutes and was completely painless. I’m sore after the fact but haven’t taken any Tylenol or anything.

Comment from: JR., 55-64 Male (Patient) Published: May 29

I developed peripheral neuropathy (PN) the same day as my carpal tunnel release surgery. Doctors say it is unknown cause and unrelated but having severe carpal tunnel caused my nerves to continuously fire until I had the surgery. I am currently on 400 mg gabapentin. Exercise does seem to help. My symptoms are constant burning feet, leg cramps and weird feeling all over. I sure wish you all the very best.

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

My peripheral neuropathy cropped up in 1998 at the same time as both of my Achilles tendons ruptured after 10 days of the fluoroquinolone antibiotic Floxin. I had a delayed reaction from Floxin and it has ruined my life. They changed the name to Levaquin from Floxin in 2000. I can't believe I’ve lived this long with this amount of pain. Every step hurts. The tendonitis pain is the worst, a hundred times more painful than neuropathy. If you have taken Levaquin, Cipro, or any fluoroquinolone that is most likely the cause of your neuropathy in my opinion; I am not a doctor, just a patient who has learned from life.

Comment from: Ilandria, 55-64 Male (Caregiver) Published: December 09

I wish I knew more about prevention of yeast infection! When I have trouble (under breasts, tummy, etc.), I soak in a hot tub with tea tree soap. I prefer full strength Dr. Bronner’s. After thorough drying, I apply tea tree oil diluted in a carrier (jojoba or olive oil). Usually it clears in a matter of days. I also diluted the Dr. Bronner’s 50/50 with water for showering. If I do this daily, I can usually prevent infection.

Comment from: HARISH, 65-74 Female (Patient) Published: August 12

It all started when I was eating dry rusk during summer. I tried every trick, suggested by relatives but only with temporary result. The hiccups troubled me for two weeks. It gave way when I was drowsy due to lack of sleep and when I was strained due to brisk walking. I approached two physicians who diagnosed it as the result of gastritis. But the medicine they prescribed did not help me. One of my relatives told me to practice yoga mudra to tame hyperactive vagus nerve. Another doctor relative suggested an antibiotic Metrogyl tablet, for five days. I tried both at the same time. At last! My hiccup vanished in two days. Never returned again.

SLIDESHOW

Diabetic Peripheral Neuropathy: Improve Diabetes Nerve Pain See Slideshow
Comment from: LAMB50, 65-74 Female (Patient) Published: May 13

I have been suffering with peripheral neuropathy for 4 years and the stabbing, tingling, throbbing, crawling sensations and intermittent numbness have been horrible, but I didn't want to take things like Lyrica with all the side effects. Anyway I went on to a website and it suggested alpha-lipoic acid, so I bought some that was GMP (good manufacturing practices) approved 300 mg at USD 14. It worked! Since the second day I have been 99 percent pain free. I rarely have a quick sensation and then it is over. I researched it thoroughly and it is natural and without side effects. I just want to share in case someone else can also get relief without hard drugs.

Comment from: Shar, 55-64 Female (Patient) Published: March 24

I have had two atrial fibrillation attacks and on April 5 I'm having cardio ablation. I'm a little nervous about it but I think I'm in good hands and hope like crazy that it cuts down the number of palpitations that I get. It seems that I get many palpitations at night. Go figure, I'm not putting any stress on the heart of course but it really jumps around. By morning when I awake, I don't feel the palpitations. It all began with hyperthyroidism. I really want to get off the medicines (metoprolol and digoxin) that I'm on, I'll have to use the blood thinner forever. I'm female, 55.

Comment from: daisy, 65-74 Female (Patient) Published: February 16

I have neuropathy of feet and lower legs. My legs are very sensitive to touch, and my left leg is very cold at night and turning a strange reddish blue color. My doctor feels that the cause is circulation. No advice on what to do. Past few nights big toe seems to be getting a darkish gray color.

Comment from: Marci02, 55-64 Female (Patient) Published: January 06

My husband received his very first flu and pneumonia shot in November 2014. He became very sick to his stomach in December. He was sick for a full 7 days, out of work, had vomiting and diarrhea, and was weak. He went to the doctor, who said he has had a virus, and that he should improve. By March 2015 he still wasn't well. April 8th he had so much pain in his limbs that he was crying and went to Urgent Care where his lipase levels were elevated. He was admitted to the hospital for 4 days. He could not walk on his own in the hospital where his doctor told him he was anxious and that he would address his neurological issues at a later date. It was downhill from there, unable to walk, pain in extremities paralysis in the feet, legs and around the mouth, with eyelid droop. Still no answers and no concerned doctor. I fired the doctor, got him into physical therapy and found a new care provider that sent him to a neurologist who did a thorough work up and finally had a diagnosis of Guillain-Barre on Aug 8, 2015! What a nightmare. He continues to suffer with polyneuropathy and is always in pain.

Comment from: JCKC, 65-74 Male (Patient) Published: December 29

I had been on an antibiotic for dental work shortly before I began experiencing severe cramping and bloody diarrhea. Tests for C. difficile came back negative and after losing 10 lb. in two weeks and given several IVs in the doctor's office, I was referred to a gastroenterologist. After a colonoscopy, I was diagnosed with ulcerative colitis. I am on two medications (one permanently). My cramping and diarrhea have cleared up and I am starting to taper off the steroid I was prescribed. I had been in excellent health prior to this and because I don't know what caused the initial flare up, am always scared that it will happen again. Good luck to all that are struggling with colitis.

Comment from: Steve McC, 55-64 Male (Patient) Published: November 11

I have diabetic peripheral neuropathy. I am 64 and have been suffering with diabetes type 2 for 20 years, and over the last 8 years I have developed neuropathy. I am very weak in the legs and cannot stand up if I fall down. I also am very clumsy, losing control over bowel movements, and have difficulty swallowing, burning pain in the thighs, and numbness in the feet. I found that 800 mg of alpha-lipoic acid a day really helps with leg weakness and I no longer use a walking stick. I still cannot stand up if I fall over, but I can navigate small steps without a handrail without falling over or overbalancing.

Comment from: sarah1938, 75 or over Female (Patient) Published: August 13

I was diagnosed with peripheral neuropathy about 6 weeks ago. My only pain was in my knee. I have since seen an orthopedic surgeon who diagnosed me with osteoarthritis in my knee. After a cortisone shot my knee pain is gone. I don't doubt that I do have peripheral neuropathy however I have gained 5 lb. since being on gabapentin and don't feel any different. Of course my only pain was in my knee. I will be talking to my neurologist about the gabapentin.

Comment from: noone, 35-44 Female (Patient) Published: April 16

I have peripheral neuropathy, with burning feet and calves, tingling, numbness, and shooting pains in fingers and toes. I was diagnosed with Lyme disease. I am only 37 years old. It started almost 3 years ago. Face also tingles. Right arm has gone numb already. I have terrible headaches, blurred vision, panic, and anxiety. Life is awful. I just want to stay home all the time. No joy, and no purpose.

SLIDESHOW

How Diabetes Can Affect Your Feet See Slideshow
Comment from: Nina, 75 or over Female (Patient) Published: January 27

Two years ago I fell while raking leaves while standing on a railroad tie. As I landed very hard on both feet, I felt an enormous rush of electric-like pain shoot up my whole body. I later learned that I had fractured one foot and sprained the other! At the time, those pains took center stage. But after a month or two, I started to feel a tingling (pins and needles) in both the bottoms of my feet. It continued to be a factor, so once I was out of my casts, I made an appointment with a neurologist and after extensive testing, I was diagnosed with peripheral neuropathy. My doctor prescribed gabapentin 300 mg. At first, he started me at a low dosage, finally going to 400 mg 4 times per day (1250). My feet are still somewhat numb and I have some difficulty walking on those painful feet. I will be seeing my doctor in 2 weeks for a further evaluation. One of the many side effects is memory loss, and I fear that the most!

Comment from: Maggie, 55-64 Female (Patient) Published: January 21

I was diagnosed with Churg-Strauss Syndrome in 2010 and have had peripheral neuropathy in my feet since. I cannot walk for very long and can't stand up for long either. My feet burns, and feels very heavy, my toes are numb sometimes. I'm on Lyrica, it seems to be helping but it is very slow and a long drawn out process. This has changed my quality of life, but I have hope someday I will be normal again.

Comment from: fred, 55-64 Male (Patient) Published: January 16

In 2012 I had bowel cancer. After recovery had to have 6 months of chemotherapy. After the first treatment I had terrible feeling in both feet, like walking on broken glass. This feeling got worse after each treatment. I have seen all the experts and have had all the pills with no results. I am trying to get some quality of life and I was told to try acupuncture for peripheral neuropathy. After 8 treatments the feeling of electricity running through the feet has gone. It is amazing to be able to put on shoes again. Each treatment has included the use of needles, radio frequency and patches. I still have some numbness in front half of both feet. Hopefully that will be gone soon. To all those people out there with the same condition, give it a go.

Comment from: jtucker, 45-54 Female (Patient) Published: January 07

I have chemotherapy induced neuropathy in both legs and feet. I have tried Lyrica which helped for a few months, and then feet and legs swelled and made it hard to walk. They hurt every day, some days feet will be hot then cold with ripping pains in them. I am on amitriptyline and pain pills. Doctors look at you like you make it up.

Comment from: Kat4hope, 55-64 Female (Patient) Published: September 17

I was diagnosed with diabetes type 2 only a year ago in 2013, but I can hardly walk from diabetic peripheral neuropathy as diagnosed by a neurologist via electromyogram (EMG) following lumbar and sacroiliac surgery just this May, 2014. I do have numb balls of feet, tingling, stinging, and numbness of toes, along with all of that in left arm and hand. But, the main problem is the severe and debilitating pain in both knees. It started out with my left knee and then moved to include my right knee. I can hardly endure the pain in my knees as it hurts with every step. By the way, more than 1 MRI and x-rays of knees show no orthopedic problems, and I have been told no osteoarthritis and will never require knee replacements.

Comment from: Tiki, 65-74 Female (Patient) Published: July 25

During a family vacation to Jamaica in June 2014 I began waking during the night with shortness of breath and crackling sounds from my lungs. Then I began to notice swelling in both legs. I also noticed fatigue. Of course I ignored the classic signs and symptoms of congestive heart failure (CHF)! Normally I am very healthy with no chronic conditions. After returning to the States, the shortness of breath and crackling worsened. I went to the emergency room (ER) in the hospital where I work. My blood pressure was very high, oxygen saturation 85% on room air. I was given diuretics, antibiotics, and nebulizers. CT of chest to check for clot was negative. I was admitted for further testing. Echo showed enlarged heart, ejection fraction 25-30. Viral screen had a hit on the Coxsackie B virus. The virus had attacked the heart resulting in congestive heart failure. I spent 7 days in the hospital. I now have cardiomyopathy, enlarged heart and am at high risk for sudden cardiac death. For that reason I was released from hospital wearing a life vest (wearable defibrillator). If my cardiac function does not improve I will need a defibrillator implanted into my chest. My cardiologist does not want me to exert myself or put any stress on my heart, he just wants it to rest for now. This virus is awful! I am now taking 5 medications and previously I took none at all. I tire easily but am gaining strength. I am hopeful that I will be able to return to my position as a staff nurse on an inpatient physical rehabilitation unit. But right now it is a waiting game.

Comment from: Tom, 75 or over Male (Patient) Published: May 01

My peripheral neuropathy started 20 years ago. My first symptom was drop foot, then a feeling of socks on in bed. Next was the loss of nerves in both the arms and legs. I"m now having trouble with balance. I"ve fallen a few times even using a walker. I have tried all the medicines with no help.

Comment from: aide, 35-44 Male (Patient) Published: May 01

I am 38 years old and been diagnosed with peripheral neuropathy. It started 2 years ago when at night I started to get pins and needles, pain and burning in my hands and feet. This has progressed up into my calves, and I now get numbness, feet and hands go cold as stone, bottom of my back aches, and I get pins and needles most of the day in my back, I went to the doctor and got prescribed gabapentin. This sent me suicidal, and the doctor changed it to duloxetine 30 mg which has worked reasonably well. Although I have had to have the dosage upped it still works, at the moment I am on 80 mg a day and I think it’s time to see the doctor again as pain is starting to get to me again. The worst part of this disability is that I get so angry and wound up because the pain never stops and nobody believes how bad it gets but on the plus side I"ve still got a job.

Comment from: overmedicated, 45-54 Female (Patient) Published: February 11

I have pain from my low back, butt, leg, and foot because of peripheral neuropathy. There is numbness and severe nerve pain all the time. It either feels burning hot, or freezing cold. I have bowel and bladder problems and sexual dysfunction. I took Neurontin for a long time. It made me gain 30 pounds and made it very difficult to think clearly. I weaned off that after 4 years and changed to Cymbalta. I also take morphine. I have a lot of side effects from these drugs.

Comment from: stillhopefull, 45-54 Female (Patient) Published: January 03

I have had swelling in my legs for years and extreme pain when standing and prickling pain in my legs when I would lay down at night. I thought it was just from being on my feet. Then 6 months ago I started getting tingling in all my fingers and toes at the same time and numbing would run up both legs and arms and I would get such a heavy feeling; like the most intense feeling of "going to sleep" I had ever experienced. It would dissipate after sometime however I would be so fatigued I would sleep for hours. I thought I had back issues. I got so fatigued I lost my voice, have full time care to care for my home, my dogs and myself. At times my right leg will go dead and not take a step. A few times the numbness went as high as my face and I find it hard to swallow and my tongue went into a muscle spasm. I trip constantly. One day while driving it hit my right hand went up and down to my right foot and has never recovered. I can't feel if I have lost a shoe on my travertine floors in my house. It has settled in my hands now and I can't wash my own hair. I also started getting migraines 4 to 5 times a week. One doctor told me it was all in my head. I knew it was not. I received a referral to Stanford. I have been diagnosed with peripheral neuropathy, however I don't have diabetes, have tested negative for autoimmune s and my B12 levels are great. On top of this I have lower back and neck issues which I take medication for. The only option so far is to take more medication but I am 45 years old, own my own business and not working is not an option for me. The pain in my hands and legs/feet during the day is getting so bad and I am not able to sit a lot. I used to be a very fast typist and now it seems I spend most of my day correcting errors and it honestly feels like it has affected my brain. I have also been constipated for many years and that continues but I also find that I am losing control of my bowels and urinary tract. I can't feel 80% of my body, or I feel as if I am being suffocated.

Comment from: GBS Patient, 55-64 Female (Patient) Published: November 20

I came down with Guillain-Barre Syndrome, I have suffered from intense burning and numbness in my feet for 2 years now. I have taken Lyrica, gabapentin, Oxycontin, nortriptyline, diazepam, Calmare therapy, physical therapy, etc. I was told I would fully recover, and still suffer. The numbness does not bother me so much but by late afternoon the fire and intense burning sensation is unbearable.

Comment from: Blisterbabe, 45-54 Female (Patient) Published: September 11

I awoke one morning and had 2 large blisters on both buttock checks with swelling, and there was redness around them. I ended up with a fever. The blisters have popped and smaller blisters appeared, it's now the color of burgundy and has developed with large scabs. I have to lie on stomach as it has turned painful. I wonder if these are symptoms of peripheral neuropathy; I haven't gone to the emergency room.

Comment from: Dawnlighty, 45-54 Female (Patient) Published: May 30

My worst symptom with my peripheral neuropathy is the burning, aching feeling in my legs and feet. My shins hurt so badly sometimes I don’t even want to walk at all.

Comment from: dumbass, Published: October 31

In the year 1986 my left and right ears were boxed. Back in the day, it was called ‘cauliflowered’. Now I'm having issues with the eardrum. I got checked out by my doctor, and he cleared the canal. The inner ear pain is back, though wax free. I had major accidental total hip replacement surgery recently, and wonder if that can have something to do with that pain.

Comment from: Emma, 45-54 Female Published: February 18

In my 74 years, I have always found a hot water soak to help all infections. It relieves the pain as well.

Comment from: Stacey, 45-54 Female (Patient) Published: November 03

I have nerve damage in both hands and arms that radiates up to my neck. I have had a nerve conduction test which came back with abnormal results. I recently had an EMG that came back normal. I have found many blogs and research supporting the fact that EMGs cannot prove nerve damage. I am now having to do more research on that. Yes I am in pain from the neuropathy. I live with chronic pain, I take 1200 mg of gabapentin a day, and I deal with chronic fatigue daily. I am seeing a hand specialist to have further tests. I am feeling very frustrated.

Comment from: Givit time, 55-64 Male (Patient) Published: September 03

My guttate psoriasis began with strange sores on my wrists after recovering from strep throat. Soon the scaly red patches covered my entire body including my face. This lasted around three months. I tried sun tanning toward the end and it seemed to help. Hang in there people.

Comment from: marv, 65-74 Male (Patient) Published: April 14

I have peripheral neuropathy due to shock received with a knee replacement. I am 72, non-diabetic and have been on Butrans patches, hydrocodone, tramadol, gabapentin and a couple of others. I just went on morphine sulfate and in spite of struggles with constipation and a little sluggish feeling, I have no pain. I use a small dose along with a declining dosage of hydrocodone. I am an active pastor, and I find that my greatest physical enemy is balance.

Comment from: MaryV., 65-74 Female (Patient) Published: November 06

I have a feeling of hot or cold tingling in my lower legs and feet. This used to be only at night but now it is also during the day and I wonder if it will ever go away. My doctor does not know what it is. I am 73 years old and I am not diabetic. I am very active during the day and walking is no problem but the feeling persists. My feet also swell up at night especially the left foot. I wonder if a natural remedy would help.

Comment from: Littlebird64, 65-74 Female (Patient) Published: August 01

I have peripheral neuropathy (PN) for about 1 year now. The doctors did not know how to treat it. I recently found a doctor that specializes in PN. He called it sympathetic nerve damage; my big toe sticks out and acts like an antenna. I go in to him today for a nerves block in my spine. Lately my back has been seriously hurting so I hope it helps my feet. This doctor seems to know he is in a pain clinic. I've tried all the usual gabapentin, Lycra, all nothing; he is my last hope. I can't live like this anymore. I have a long life to live.

Comment from: Karol, 65-74 Female (Patient) Published: May 30

I suffer from peripheral neuropathy in both feet and numbness in my calves of my legs. I am now experiencing numbness in my face. Pain is really getting to me. I find temporary relief from putting my feet into a pan of very cold water and also using Bengay zero degrees then put feet on a rice bag from freezer. Seems that the cold acts as an anesthesia.

Comment from: Sarah25, 25-34 Female (Patient) Published: May 22

I have been a type one diabetic for almost 16 years. The pain is unbearable from my neuropathy. I was diagnosed 5 years ago. I"ve seen so many doctors I have lost count and been on every medication possible. I am still very young so I worry more than you can imagine. Doctors do not listen and the disease has ruined my social life. No one understands what my body goes through. I am getting put on a kidney transplant list. I have many other medical issues. I wish just one doctor would help. I have no energy and no motivation and am about to give up. I feel for anyone with this issue. It ruins lives. It"s not that I"m in pain because I"m depressed because I’m in pain.

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

I am suffering from poly neuropathy from last one year on my one leg and one hand. I have no pain in any of these areas. But I am not able to walk properly. My balance is also lost. Doctors have prescribed me nothing as such for that.

Comment from: Thomas, 75 or over Male (Patient) Published: November 01

My PN (peripheral neuropathy) started in one foot 15 years ago. Since then I have had spinal stenosis surgery and follow up scarring surgery. All along my neuropathy was getting worse. I take tramadol for the pain, it helps. It has worked its way up my legs and now onto my arms and hands. I had the electric stimulator put in my back but it has actually amped up my symptoms. The sensation on the bottom of my feet, like I am walking on balloons, along with balance problems, add up to constant fall possibilities. Family and friends don't understand that this condition in many ways, takes hold of your life and you are harder to live with.

Comment from: foilqueen3, 35-44 Female (Patient) Published: May 29

I have all the usual pain, numbness, tingling, my foot falls off the gas pedal of the car, but the most disturbing is the electric shocks that are keeping me up. I am now trying Topamax and it is ruining my life by making me drowsy same as the gabapentin and Lycra had. I’ve tried Cymbalta gave me tremors. No relief! The shocks are driving me insane.

Comment from: bs0mem, 45-54 Male (Patient) Published: February 13

I was just recently diagnosed with peripheral neuropathy my pain started in my left arm i got numb and started having trouble holding onto things and the pain was at times unbearable, I then began to feel a sharp pain that started in my knee and went both directions up to my hip and down to my toes, the pain then began to start in my right arm and that made everyday life very hard for several days, the pain has since left my legs and right arm and has concentrated itself in only my left arm. I also feel all kinds of different sensations from burning, like a flushing pain that you would feel in your face from niacin, if anyone has experienced that would understand. Or the pain is a tingling sensation like thousands of sharp pins. Now it’s mostly just a constant pain that does not go away, my left arm hurts all the time. My doctor prescribed me neurotin 300 mg once a day at bedtime, and it does nothing, but keep me up all night and make me even more depressed. I also get a severe pain in my abdomen which my GI doctor has diagnosed as neuropathy as well. I am currently on oxycontins 10 mg and neither of these meds are helping, in fact I hardly take the morphine at all now. Everything you read now states there is no cure for this condition and many times my wife and children just don't understand why I am so irritated and angry. You know I just want to feel some hope, period.

Comment from: raven_wolf_1251, 25-34 Female (Patient) Published: December 20

I have had peripheral neuropathy for a year and a half now. It began with me losing all feeling and strength in my legs. I was in the hospital for two weeks. They told me that it was all in my head. I still don't have any feeling in my legs, but I can walk some. With the added problem of a lower back issue, things are bad. The Dr.'s still think that it is all in my head. I hope that I will find someone to help me figure out what is wrong with me. I am 32 years old, and my 63 year old mother gets around better than I do.

Comment from: solo601, 75 or over Male (Patient) Published: October 25

I have been told by my neurologist that I have peripheral neuropathy, and there is no cure. I cannot believe that in this day and age with all the brilliant scientists we have here in this great country of ours, that this is true. I am a World War 2 veteran, and am suffering, with this terrible affliction, can somebody out there please help me. Thank you in anticipation.

Comment from: lgcoc25, 75 or over Female (Patient) Published: October 13

I have a burning sensation on the upper part of each foot, most noticeable at night. I also have restless leg syndrome quite frequently, at night. Immediately following major surgery in 2001, I suffered much pain due to a too tight clamp on my left foot; I still bear a large bruise on that upper foot. I am female and 86 years of age. I have CLL and am a heart disease patient.

Comment from: Mysticrose1938, 75 or over Male (Caregiver) Published: July 13

My brother was diagnosed four years ago going on five now with peripheral Neuropathy. It has spread over his body. This all seem to start after treatment for prostate cancer after they inserted to radiation beads. He is now unable to move his legs or one arm. His pain is very severe and nothing seems to help.

Comment from: 35-44 Female (Patient) Published: February 24

I had right knee surgery a year ago to correct a medial Meniscus tear, since my surgery I have extension loss, my knee is not straight. I also have a small tear in my left knee along with baker’s cysts, and fluid which the doctor feels it doesn't need to be drained. They say it's just something I have to live with. I have now been diagnosed with Peripheral Neuropathy from the knees down. I have never had knee problems nor have I had diabetes, and etc. I have had a clean bill of health. I just don't understand why this is all happening to me. It's terrible and I have a hard time walking now. Does anyone have any suggestions? I have even asked for a second option and they refused.

Comment from: elle, 45-54 Female (Patient) Published: February 07

I’ve never heard of peripheral neuropathy until now I’ve got all the symptoms for the last 17 years. The reason I looked up on my pain is because my doctors have said they can’t find what’s wrong with me they just keep giving me stronger pain killers. The last day I saw one of the doctors she very abusively told me it’s all in my head so I’ve got an appointment now with a psychiatrist. I am going to my doctor, I am so depressed and shocked by her and I just feel like I’m going mad because my pains are very real.

Comment from: 55-64 Female Published: February 07

I have terrible pain mostly in my left leg. It starts high in the thigh area and seems to work its way down the leg. The pain is deep inside the leg and sometimes seems to follow what I would call the veins. The pain is at times unbearable and no amount of massaging, rubbing will take it away.

Comment from: Amanda J, 45-54 Female (Caregiver) Published: October 31

I take magnesium for nerves and many other symptoms of peripheral neuropathy. ReMag is 100 percent absorbed, the other drugs are depleting magnesium further.

Comment from: Cc, 55-64 Female (Patient) Published: August 28

I wonder if constipation is one of the things you deal with, with peripheral neuropathy.

Comment from: paul, 35-44 Male (Patient) Published: December 22

I have peripheral neuropathy now for over 2 years in both feet and toes. I am on maximum dose of gabapentin, 300 mg 9 tablets per day plus tramadol. I use capsaicin cream 3 times a day which does help but walking is very painful. I have gained massive weight with the drugs I take. I did have carpal tunnel syndrome in my hands but had an injection which did help.

Comment from: Shelby s., 65-74 Female (Patient) Published: November 04

I was told I have endometrial cancer. My doctor did a test and it was found on November 5th. I see a specialist on what they are going to do. I hope that it hasn't spread anywhere else. Hysterectomy may take care of it.

Comment from: Captain, 65-74 Male (Patient) Published: May 14

I have had peripheral neuropathy for over 10 years now, I used to take 5600 mg of Neurontin daily, then 600 mg of Lyrica, all of which quit working. Now I'm on 3000 mg of Keppra along with oxycodone 20 mg and morphine daily. The pain is still excruciating and unrelenting.

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

Diagnosed with peripheral neuropathy 20 years ago. It was not serious until I had chemotherapy and radiation two years ago. Then I had a hysterectomy and more radiation. PN is much worse. Cymbalta was deadly. Gabapentin doesn't help. I am dizzy and have difficulty walking. I have no energy, no interest in life.

Comment from: Cjongeling, 55-64 Female (Patient) Published: October 08

Symptoms of my peripheral neuropathy are my left middle finger tip is often numb. The palm and fingers of the left hand frequently itch down to the bone, and scratching does not help.

Comment from: Bob, 65-74 Male (Patient) Published: August 16

Crunchy sensation on bottoms of feet as well as feeling of going to sleep.

Comment from: kenny s, 75 or over Male (Patient) Published: August 16

Diagnosed with peripheral neuropathy, seeing neurologist that tells me nothing, very frustrated, suffering severe grogginess, balance, and extreme nervousness. Nothing helps, don’t know what to do, have no help.

Comment from: Diane, 45-54 Female (Patient) Published: July 24

I am 50 year old female. I had been failing for the last 8 years or so. I have had a lot of depression, fatigue, feeling like I weigh a million pounds, barely able to manage keeping my cushy part time job because couldn't work a full day. My quality of life quickly diminished. I no longer able to mow yard, walk yard, if I over exerted I would perspire uncontrollably and my heart would pound and not calm down even with head down between legs. I would plod when I walked, I weaved when walking, I became finally bedridden mostly. I also found out I had Hepatitis C after visiting Red Cross and donating blood. None of my doctors even listened to my symptoms. They kept telling me it was menopause or age or depression or what ever. Red cross told me I was positive for Hep C so I did the triple interferon treatment for type one. My symptoms exploded. I went literally insane experiencing psychotic events and hearing voices, manic one day and depressed the next. I kept telling my doctor but no one believed me either. I was treated like a drug seeking worthless junkie. Well finally my eyes went, I lost significant sight in my left eye, no pupil dilation, dark haze over eye and now my right eye is going. I have ringing in my ears and lots of pressure in my head. They immediately took me off treatment and here I am. My eyes are going, I cant walk toe to toe or touch my nose with my finger. I will break a sweat or freeze, if I exert myself I cant breath, my chest seems to freeze and my heart pounds, I have speech interruptions and some tremors. Constant deep throbbing ache in feet shins radiating up my thighs, my fingers throb, my hands and arms intermittently. I have intense escalating headaches, knots, pain around my eyes and even my ears, tight muscles around neck, trouble swallowing, cant wear any clothes that even just touch my neck, I have curved spine and degenerative disc. I am really upset with medical care. no one is telling me anything, ordering cardio followup with tilt test. All i want to do is know what to do to help maintain a quality of life for as long as I can.

Comment from: MJforever, 55-64 Male (Caregiver) Published: May 28

My father has been suffering from a very severe case of peripheral neuropathy for a year and a half now. It has been gradually worsening with time and now there is also severe ulceration, enamel corrosion, and skin allergies. He is starting to find it difficult to walk, and we have tried all kinds of medication, with no effect.

Comment from: Male 47, 45-54 Male (Patient) Published: December 26

I have Wegener’s disease and had kidney cancer, both diagnosed March 2012. The pain started almost immediately and worsened. We always thought, it would go away with time and it has gotten alot worse. Have tried all the Narcotics, with minimal help. Neurontin, Lyrica and several others oddly the Neurontin worked to lessen pain by about 50% for about 3 weeks and the pain came back even worse, almost like the disease finds a way around it? I am now on long term disability and lived a very nice lifestyle. My wife refuses to work more than 15 hours per week in a highly paid profession, I am hopelessly in chronic pain slowly watching our savings dwindle. I hate to say it but at times I want to give up. Any ideas?

Comment from: 45-54 Male (Patient) Published: October 09

I have had idiopathic peripheral neuropathy for over 20 years. It stauted with just numbness on the bottom of my feet. I now have numbness with tingling and burning pain in my toes and feet. The numbness has progressed into my calves. I take 2400 mg of gabapentin a day and 15 mg of Mobic and supplement with 1000 mg of Tylenol sometimes at night. The pain is much worse when I go to bed. You have to sleep with your feet off the bed and you can't tuck the covers in on the end of the bed.

Comment from: fefe36, 35-44 Female (Patient) Published: September 27

I have numbiness in my feet and hands that keep me up at night. I was diagnosed at the emergency room with peripheral neuropathy. They prescribed a steroid that didn't help at all. I went to see my doctor to tell him what was going. They took blood from me and put me on two medication.

Comment from: miss Jo Darwin, 55-64 Female (Patient) Published: September 07

With diabetic peripheral neuropathy, I have most trouble with my feet. Feels like sharp pins sticking into me at various locations sometimes my toes, ankles, soles, or calf muscles. I have also noticed I cannot write neat any more as sensation in my fingers is less and I also drop things. Night time is the worst. My feet feel like I am barefoot on ice but hot at same time, restless legs, thigh pain, electric, jelly feeling in my legs when I have to get up at night. My only short term relief is cannabis and massage. The pains will just happen anytime. I hope to find some relief.

Comment from: sandy, 65-74 Female (Patient) Published: August 20

I have neuropathy. My legs hurt so bad, my feet burn and I have hammer toes.Pain down my toes and ankles. My arms and shoulders ache with pain. My legs hurt so bad that I can hardly walk. It causes me to be depressed from worry. Pain medications don't help much. I am so tired with no energy.

Comment from: NumbFeet, 19-24 Female (Patient) Published: May 23

About 9 months ago I started getting odd electric shock sensations through my feet. The pain was intense and all the more shocking because it was always so sudden. Over the next few months I saw a lot of doctors who had nothing to say or ideas as to what was causing my pain. I was eventually put in touch with a neurologist who diagnosed me with severe peripheral neuropathy. At this time they are still uncertain of the cause, but think that it was a vitamin B12 deficiency, although with my current lack of improvement, they are skeptical. The thing that I've struggled with the most with the peripheral neuropathy is the changing sensations in my feet. For the first 4 to 5 months, my feet were in constant agony with the simplest of touches being unbearable. Now however my feet are mostly numb and I honestly don't know which is worse. At least when they were in pain I could feel them. Now I feel as if I'm walking blind, never knowing where my feet really are unless I can see them.

Comment from: bjs, 55-64 Male (Patient) Published: September 27

My peripheral neuropathy began 23 years ago while I was still on dialysis. Over 21+ years post kidney transplant,it has gotten progressively worse to the point the pain is so bad I had to go on disability. Now on amyltritolyne and it seems to lessen the pain. However when the pain increases I need to increase my doseage. My neurologist told eo increase the meds 10mg at a time but to stop when I reach 100 mg per day. There are a couple of good days during each week and some bad ones. I try to do all I ca on the 1-2 days pain is manageable. Yes this is very depressing but a great wife and family I seem to be able to keep the focus on the positive. Dr's tell me the Prograf (anti rejection medication) ma be excerbating the pain. Only choice to keep my kidney is to take the Prograf.

Comment from: johnboy1959, 45-54 Male (Patient) Published: March 16

I have had diabetes for 15 years. I now have been told I have diabetic neuropathy, my symptoms are tingling, sharp pain, aches, burning, and freezing. If I’m on my feet for an hour I feel like you could cut them off and they could not feel worse. I have a great doctor who has me on Lyrica.

Comment from: Nanal, 55-64 Female (Patient) Published: October 18

I had restless leg syndrome for years - didn't know what it was. In 2011 I went to doctor for a foot issue and when she touched the inner side of my foot I jumped a mile. I was walking on the beach barefoot and mentioned how cool the sand was and my friend said it was very hot. Went to podiatrist who examined me and sent me to neurologist. Blood tests show no diabetes - no vitamin deficiency - had chemo in 2005 but the chemicals I had supposedly don't cause neuropathy. On Gabapentin 600 mg 3 times daily -- my feet and legs are numb - sometimes electric shock on inside of foot - top of foot -- can't have massage therapist touch the back of the knee.

Comment from: 65-74 Female (Patient) Published: May 03

I began having restless legs syndrome about 5 years ago. I then developed neuropathy. My doctor prescribed Gabapentin which incidentally cured the restless leg syndrome. The neuropathy has previously resided in my feet and lower legs. I recently asked my doctor if I might take two Gabapentin tabs to alleviate my escalating pain which she agreed to. It happens only at night when I'm lying down. Now it's gone up to my thighs and occasionally when I'm sitting watching TV. Last night was the worst I ever experienced. It woke me up and no amount of rubbing would help. It finally went away. I have spinal stenosis which could be contributing to my problem and sacroiliac joint problems which might be similarly problematic. I'm seeing an osteopathic doctor to try to readjust my sacroiliac and have an appointment down the road with a neurosurgeon to possibly treat the stenosis with injections. I feel for those who suffer from this debilitating disease.

Comment from: mary, 55-64 Female (Patient) Published: February 08

It feels like my feet and legs are being crushed, sliced with razor blades, ice picks. Tried all the anti-convulse, nerve pain drugs like Neurontin, lyrica, etc. No relief. Tried methadone and this is the only pain med that works well with the nerve pain. They use this with neuropathy caused by chemo drugs and found it works well. I also take 5 Mg of oxycodone for breakthrough pain.

Comment from: michaelW, 55-64 Male (Patient) Published: January 11

I have had the symptoms of neuropathy for years and it was never correctly diagnosed by my doctors. I did not have diabetes then but it showed itself a couple of years later as blurry vision and what seemed like vertigo. I was in the military and was exposed to many different "agents" bad stuff I now know. (orange, purple, white, etc.) this was in 1970/71. Now that I am being treated at the V.A. Hospital, they give me 1000mg of neurontin twice daily and it gives some relief. I personally would be extremely happy if there was a medical breakthrough that would help with the pain and fatigue I feel.

Comment from: feelfree, 45-54 Female (Patient) Published: December 19

Burning neuropathy started in my feet and hands after being on Bactrim for a UTI! It's been 4 months of burning up, especially at night and no one can see it, so nobody understands or wants to help. Been on Neurontin for 4 months as well with no relief. Doctors I have seen do not want to hear that Bactrim caused this problem. It is very frustrating all the way around!

Comment from: robert, 55-64 Male (Patient) Published: December 01

Initially, I had numbness and tingling in my feet, like walking on a bed of needles and loss of feeling in the legs. It was felt that I had been exposed to heavy metals in the workplace, nerve conduction studies showed no ankle responses and a delayed right posterior tibia response between the knee and ankle. This has now changed to burning feet, which gets worse at night.

Comment from: Chelrenee, 45-54 Female (Patient) Published: October 13

Pain is not my biggest problem but weakness. Haven't seen much here about weakness though I know peripheral neuropathy causes it. I have balance trouble and drop things too. It also affects my breathing though my lungs are okay now. (Had bleeding issue in 2010 with MPA.)

Comment from: Guy, 35-44 Male (Patient) Published: August 03

I have been diagnosed three years ago with interstitial cystitis and have been on Elmiron treating that condition. About three weeks agi, my left foot started to swell to a size of a water balloon and I started getting numbness and tingling feelings and at night my leg cramps really bad. Now, last week I am getting it in my other foot and it is hard to bear weight on my left one.

Comment from: Denise, 45-54 Female (Patient) Published: July 21

Burning, numbness, sharp pains in hands and feet. Weakness in legs. Regularly drop things and legs give out occasionally.

Comment from: Ralphy's Mom, 75 or over Female (Patient) Published: June 21

I started with neuropathy almost 4 years ago. The pain scared me because I had never had anything like that. It took a while for the doctors to diagnose it because I am not diabetic. I have taken Lyrica and Cymbalta to no avail. I took Gabapentin early on, then started it again at a large dose (3 800 tabs per day) when none of the new drugs would work. I also take Tramadol 50 mg. 4 times a day if needed for pain. Today is a good day; I have only had 1 tramadol, and it is not hurting too much. The pain feels like I am walking on shattered glass on the balls of my feet when it is at its worse. I feel sorry for those who are having the pain that is so bad. Thank you for letting me share my feelings.

Comment from: Pammiesue, 45-54 Female (Patient) Published: June 15

I've had varying degrees of painful numbing of my fingers and toes since my Chemotherapy 5 years ago. My cancer is in remission, but the neuropathy is getting more intrusive on my daily activities. My oncologist implied it would likely not improve. Fine with me given the alternatives. This having been said if I can't find something to relieve this. I'll likely have to quit my job. And this saddens me greatly. Good luck to you all.

Comment from: okf, 65-74 Male (Patient) Published: May 27

I have had Sjogren's autoimmune syndrome for decades. Before taking immuno-suppressive drugs I used to get sporadic nocturnal attacks of an unbearable itch in the bottom of one or the other foot. Only intense massage and leg elevation made it go away. After taking medication this almost totally went away. I also had the herpes virus in my body for most of my life. It hides out in the nerves. There may be a connection!

Comment from: Viv, 55-64 Female (Patient) Published: May 16

For the last 4 months I have been have having burning, tingling numbness pain in my right arm, both hands and it has been extremely disconcerting. My feet and legs are fine. No diabetes. I went to my Chinese acupuncturist and after ONE treatment after 2 days I had very little symptoms. Just a slight numbness in my middle finger tips. I am definitely suggesting some people would benefit from a good acupuncturist. I don't know why I waited so long. Please try the alternative routes for healing until you find one that works-- Priceless!!

Comment from: harold, 75 or over Male (Patient) Published: May 03

I have peripheral neuropathy. There is numbness in both legs starting at my calves. I do experience some unusural pain in bed.

Comment from: ggdad, 55-64 Male (Patient) Published: April 11

A feeling I had a deep cut on my foot, but no cut at all present. I feeling I had ingrown toenails on the big toes, but they were not ingrown. Severe itching but not athlete's feet. Burning sensation on the bottom of the feet, warm to the hands. Severe cold feet at times. (I have had quadruple bypass surgery; I wonder if it isn't the cause of the circulation problem.)

Comment from: Donna, 45-54 Female (Patient) Published: February 24

After having chemo, my fingers and toes were numb. After several weeks, they started tingling, painfully, I might add. My Dr. said the nerves were damaged due to the chemo medicine. He gave me a pain killer to take. The numbness is starting to go away, it's been about 8 months, but it's not gone yet. Another Dr. suggested taking a B-12 vitamin to help with the nerve growth.

Comment from: Laura, 45-54 Female (Patient) Published: May 03

I have had peropheral neuropathy for 13 years. Loss of sensation in legs and hands, severe burning, stabbing pain, sometimes as if my limbs are being squashed. I can't help anyone with a cause but I can tell you that I have had huge success with the pain-killer Tramadol. I would have been quite insane by now as the pain can be very intense.

Comment from: nanda, 35-44 Female (Caregiver) Published: July 26

My sister has needle pain all over her body, burning sensation in her leg, thigh pain, and severe headache and sometimes, weakness, her age is 38, she has no sugar, potassium level o.k., emg scan done, it is also o.k., she takes gabax 450.

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