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• November 7, 2012 8:09 p.m.

  I was interested in Linda's comment about being diagnosed with Monoclonal Gamopathy and now suffering from neuropathy -I was diagnosed with MGUS about 5 years ago-now suffering horrible pain in my legs but neurologist thinks is caused by my lupus-should I be discussing this with my oncologist on my next visit?

  - Jan

• August 23, 2012 5:47 p.m.

  Several years ago I was hit with severe "pain" in my feet that would radiate up my arms and sometimes over other places on my body. I had found that taking 3 benadryle and sitting perfectly still gave me some relief. I went in to my regular doctor, in a full'episode". He sent me to a neurologist to be evaluated. After ruling out some possible causes, he said I had a general peripheral neuropathy. He put me on Gabapentin. I take anywhere from 5 to 8 capsules depending on the day and circumstances. It has given me my life back! No more wondering if I will be hit with this problem while driving, out with my grandaughter, or at some social functiion! I have also found that I can no longer wear nylons. When I do have to wear socks, they are 100% cotton. My shoes have to be breathable. Also shoes with a bigger toe box work quite well. I have layered hiking socks over my cotton socks for long hikes with no problem.

  - Vendy

• August 22, 2012 2:54 a.m.

  i am sufring from neuropathic pain in both leg , some times i feel burn in both leg and hand . i am surching a neuropathic doctor in new delhi pl,s suggest me good dr in new delhi,

  - jaiprakash

• July 22, 2012 11:15 a.m.

  10 YEAR OLD DAUGHTER WITH TYPE 1 DIABETES COMPLAINING OF PAIN IN HAND AND FEET DOCTORS ARE SAYING THEY ARE JUST GROWING PAIN, TOOK HER TO ER THEY SAY NEUROPATHY BUT NEUROLOGIST SAY HE CAN'T TELL BY PHYSICAL EXAM BUT PRESCRIBED HER AMTRIPTYLINE AND SAYS IT'S NOT COMMON IN CHILDREN (I CAN'T TAKE IT ANYMORE) PLEASE HELP, SHE IS IN EXTREME PAIN

  - NITA

• February 15, 2012 1:11 a.m.

  I found by trial and many errors, socks that are 100# cotton, non-binding, and do not hurt the sensitive areas of the feet and ankles. They bleach up beautifully. I got mine through "Miles Kimbell" catalog. Thought this tip might help someone out.

  - Janet

• February 15, 2012 1:04 a.m.

  I was diagnosed with peripheral neuropathy 10 yrs. ago. Last year my friend found an ad in the paper re:chiropractors, laser treatment and peripheral neuropathy. My 1st visit, I could actually walk down a step. The neuropathy symptoms have gone from unbearable & suicide, to actually knowing I can get up and get something worthwhile done. This is a fairly new procedure and there are only about 400 chiropractors presently using it. I was told at first there was no cure for the neuropathy. I still don't think there is, but this laser treatment is the next best thing. I have cut my meds down to 50% of what I was using, my sleeping after the pills is also down 50%. I do NOT have diabetes. Good Luck to All of You!! 5

  - Jeanne

• February 2, 2012 12:27 p.m.

  I was diagnosed with Monoclonal Gammopathy 2 years ago which the hemotolgist believes has caused the neuropathy (currently in my feet). They are suggesting that I have a biopsy done on the sural nerve as they believe that the proteins are causing the neuropathy. Treatment would be a monthly infusion as treatment for the neuropahty. Has anyone had experience with this form of treatment?

  - Linda

• February 1, 2012 6:02 p.m.

  My husband suffered with peripheral neuropathy for many years, finally at the end of his life needing a handful of pain pills such as hydrocodone, etc. to get through the day. BUT he never was diagnosed as diabetic and because he had several supposedly excellent neurosurgeons he was never treated as a diabetic. Of course, now I am wondering if they erred As many of those who posted comments- no one knew or knows now what causes p.n. After reading the posts here from those suffering, I realize now that even I never really understood the torment he was living through. He begged me to let him have a gun. I didn't but should have I realize now. He had a bad back early on that finally left but I have always felt that was the cause. After reading the posts here from patients with pn I no longer believe that was what caused all this pain that finally reached his knees.

  - Joy

• January 31, 2012 9:22 a.m.

  I have severe neuropathy from radiation treatment.i have also been diagnosed CMT. Latety I have been waking up and experienceing weakness in my legs. They feel as if I could just about collapse. I feel shakey. Is there a Dr. that specializes in diabetes or should I see my GP?

  - Rose

• January 19, 2012 1:34 p.m.

  All coments sound familiar,but who is reading them besides the ones of us that are feeling the pain,and who's going to give us the answers we need to get better or to get well.We need to send these comments to doctor's , specialist someone who can make a difference! It helped to read other people's comment's but some were scary thinking I might be in their condition someday when it's already bad enough. Karen

  - Karen

• December 2, 2011 8:16 a.m.

  Do you have any specific comments for people who have PN due to chemotherapy. Looking for advice about where to look for24g7Wv socks and shoes.

  - Bets

• October 21, 2011 12:37 p.m.

  I have been suffering with neuropathy for a little over three years. Many of your stories ring true for me. Sleepless nights, severe pain that sometimes seems progressively worse. I'm depressed wondering just how much worse it can get, afraid of the answer at the same time. I have been to a neurologist, he didn't seem to know what was wrong, even though I had a myriad of tests. Left me feeling helpless, somewhat hopeless! I took Lyrica for awhile and it helped, but even with insurance it costs $100.00+. I'm a vegetarian as someone else mentioned. At a standstill grasping for answers. This has changed my life and not for the better. I am no longer as active as I used to be. It's is a major effort just to cook dinner or do any of the things I used to enjoy. The lack of sleep, the constant pain 24/7 has began to wear me down. Searching for answers and some real relief!

  - TJ

• August 24, 2011 6:51 p.m.

  I am 74 years old, I felt young before I was attacked with neuopathy and I have meneres disese. I have just been diagnosed with the neuopathy, so I don't know what is going to happen with that. I take gabapintin for the meneres.

  - inez

• August 19, 2011 2:40 a.m.

  Until last night, I had never "posted" anything ever to a blog. Yet, whatever disease that has resulted in my having autonomic & peripheral nueropathy has brought me to the edge. I have been diagnosed for almost 2 yrs. yes, I get SSDI, yet no medicaide. Apparently by working & paying SSI & medical, you then become inelible for medicaid. I posted last night, I guess out of desperation & loneleness. My symptions & nerve damage were servere since 1997. SSDI approved in 2009, yet with no medicaid. I am watching, feeling as my symptoms grow worse. and it kills me that i have no medical options to address & manage this horribble disease. i have no support, nofamily to help. I am so lost, tired & beaten everyday by my own body. I ask again, how do any of you maintain hope? More nights than I care to admit I just pray for God's mercy, & I just finnally die quitely in my sleep due to.a heart attack. is there anyone out there actually reading this? or, am I as alone so truely as I feel? ~Kate

  - Kate

• August 17, 2011 7:15 a.m.

  iseized with my neck up & dowm on the drywall. serious haed trauma, bit thru my tongue, lost or damaged every tooyk in my mouth. no one knows how long i was down. a friend came by. and as soonas she saw me nearly died. i, had no memory. hospitalized again, diagnosed with orthostatic hypotense. dangerous low blood prssure. Still, drs did not take seriously. i lost everything. 2 yrs later, finally referred to neurologist. many tests later, finnally a diagnosis...autonomic and peripheril neuropathy. Told i would never work again. no choice, applied, approved for SSDI. Yet, given i worked & paid fir social sec & health care, find out, medicaid only for the poor! Ican barely get by, and this disease is progressing. No medical care to help in years. yet, medicade effective in January, yet have no idea how i will be able to afford it. i pray evey night that my heart just finally, quietly stops in my sleep. I feel defeated. no purpose or use of my life. i can no longer be of servic & give to others. alone with no help can not take care of myself. How do any of you maintain hope? From where do you find such strength?

  - kate continued

• August 17, 2011 6:46 a.m.

  i am now 49yrs old. the feet & leg pain which i now kow is neuropathy began as a child. i can now remember how my dad would sit on my bed, my feet and legs in excruciating pain, and massage, rub them until i could fall asleep. in my twenties , the horrendous pain in my feet would come & go. for awhile aspirin, soaking them in a hot bath, pain creams would seem to help. over the yrs, nothing worked. i had other problems too, always with my stomach. thought it was nerves and stress. until 2003, out of state, hospitilized for a bowel obsruction. came too close to dying as my blood pressure kept dropping to dangerous levels. again later 2003, another bowel obsruction. the drs didn't take me seriosly. 2007, serious case of gastreparises, nearly killed me. vagus nerve not working properly. after waking up on my living roo floor, with no memory of why, after going to lie down, got up to go to bathroom. i returned to the bed to find my pillow, all of it, drenched in blood. touching the back of my head, hair soaked in blood. nearly an inch long scare from where my head hit my coffe table. told my dr, this in dec 2007, and he paid no attention. Jan 2008, remember watching battlestar gallatica. Next memory, staring in the mirror in my bathroom. i looked like Carry. Entire fsce, nect caked in dry blood. no memory. apparenty i fainted, tried to get up before blood back to brain...sent me into apparrent violent grande mal seizure. my head literally went thru the drywall of the wall

  - kate

• July 13, 2011 9:48 p.m.

  I saw black//blue circle @ base of small toe (right) In a few days a red line started up my foot. Emergency discovered infected ulcer bet.small toe & next - eventually had to amputate small toe Did not see or feel this developing. Towel bet. toes!

  - MARTHA

• June 3, 2011 11:42 p.m.

  For the past several years (I'm 62) I've been developing a slowing growing neuropathy of my feet. I do not have diabetes. I was(am?) a healthy vigorous vegetarian. The perverse tingling kept me from sleeping so I got a prescription for amitryptaline. It does help me sleep - but has the side effect of making me very sluggish in the mornings. My work as a carpenter has become almost impossible. Walking, no matter which shoes or inserts I wear, becomes cripplingly painful after 2 or 3 hours of work. A very bleak future I'm facing...I'm beginning to learn meditation as a method of managing the pain.

  - christopher

• May 24, 2011 2:26 p.m.

  D. jones, swelling and fluid around the ankles are not side effects of pregabalin. Generally, swelling in the ankles is related to the circulation.

  - Nancy and Peggy

• May 18, 2011 6:30 p.m.

  I have been told i have peripheral neuropathy in my feet but my ankles are very tight and fluid around them i was wondering if all this was connected i am taking pregabalin.

  - d. jones

• April 1, 2011 11:01 p.m.

  I have a severe neuropathy as a result of complications of being in an induced coma in ICU and no longer have feeling in my feet or can walk unaided. I had severe "breakthrough pain" (stabbing pain) in hospital whch was initially treated with Oxycontin and later Neurontin. I initially took 1200mg of Neurontin and Endone nightly for 8 months and 20mg of Amitriptylene. I stopped the Endone when I left hospital. Over 12 months I tapered my Neurontin to 100mg and stopped taking it about 6 weeks ago. Apart from some initial sleeplessness it has been okay. I am still taking the Amitriptylene but will stop that soon. Amitriptylene is a tri-cyclic antidepressant but in smaller dosages can be effective in neuropathic pain control. I came across this website as I had heard (and have seen for myself during 7months in neuro rehab) the link between diabetes and amputation. It seems though that the nerve damage per se doesn't cause the problem but complications arising from injuries and damaged blood vessels which thankfully I don't have. I also wear special "diabetic" shoes which are not only very comfortable but don't have any internal seams. As I use a wheelchair a lot of the time they have lasted over 2 years so good value. Mine are made by InStride and I recommend them.

  - James

• February 24, 2011 10:34 a.m.

  My GP sent me to a neurologist, went thru nerve tests, muscle tests.. the conclusion yes I have neuropathy. Interesting, all I had to do was read these letters. And the nurses symptoms above. Obviously there is no help~ maybe an old fashion country dr. could offer something. For burning feet at nite, I turn the shower on bottoms of my feet HOT then COLD works for awhile. Does anyone think chlorine in the drinking water is affecting our nervous systom?

  - Sandra

• January 28, 2011 2:47 p.m.

  Sorry about ending in the middle of an idea. Any way, I also take gabapentin....but a much larger amount...600 MG in the AM, 600 MG at noon, and 900 MG at night. This does not eliminate the paoin, but I have gotten as mush as 6 hours of sleep -= two nights in a roll. If I eat a roll with dinner or haave a sandwich for lunch, I can't sleep. Nevermind the other pastries...they cause such pain that I'm walking the floors all night. Now this doesn't work all the time but to get 6 hours sleep I try to avoid the refined starches and pastas...K

  - Kay

• January 28, 2011 2:18 p.m.

  I have had periferal neuropathy for about 10 years...It gets worse as time passes. I don't get any sleep many nights because of the pain. Any thing that touches my feet feels like sand paper. My feet also feel like they have been scalded. If they get cold they hurt. I have discovered that if I avoid all refinded foods like bread and pasta it seems to help. i

  - KAY

• January 22, 2011 11:42 p.m.

  I am 83 years old and also suffer from idiopathic neuropathy. I take 4 gabapentins, 300 mg daily. I have carpet in my house and wear very soft slippers. To find a good walking shoe and the right insoles is a problem. The sole of my feet get burning and sore if I walk to much/ Use now Zostrix (ingredient is Capsaicin). I also had 6 session of accupuncture and it seems that is helping. Went for a long walk today

  - Maria