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Peripheral neuropathy is the most common form of diabetic neuropathy. It damages nerves in the feet, legs, arms, and hands.
You have to look out for yourself, and at times do things that aren't always socially acceptable. A patient told me he went to a house party and was asked to take his shoes off at the door; he complied and proceeded to step on a toothpick and injure his foot. This led to the development of a foot ulcer and a long process of medical appointments and wound care management. It's important to protect your feet from injury, especially if you have little or no sensation in them. This means wearing good shoes or slippers, even indoors.
In the Southwest, patients should shake out their shoes before they put them on just in case a scorpion crawled in.
Foot protection is the key issue with peripheral neuropathy. Please share your stories regarding peripheral neuropathy.
Nancy Klobassa Davidson, R.N.
Peggy Moreland, R.N.
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New to all this. Neurologist testing for cause. MRI brain/neck also spine coming up. plus advanced blood work. Blogs are helpful in things to look out for, but must be sad and frustrating to not get answers, from fellow PNers, or medical sources. Agree with comment that said these should be shared with Drs.!! A Webinar with Q & A with a panel of Drs. would be great!
I had a cortisone shot in my knee. I had never had it before in the other knee. I had had something that begins with "s". I told the doctor but he said they start with something less expensive. this was not my original doctor. The first day I had horrific headache, next day red flushing face and third day horrific pelvic pain. Since then I've had top of feet and arms from elbows down to hands. I've been dx with idiopathic peripheral neuropathy. I beleive with all my gut that the cortisone shot caused this since they don't know what causes it. I do not have diabetic neuropathy. I am very upset because if doctors would just listen to the patient. I know I made the decision but I felt coerced.
Along with the horrible pain in the feet from Neuropathy, ther is also the feeling that my body is filling up with liquid. This comes and goes but I have not read that this is a sympton of neuropathy. Have you heared of this
In 2003 chemo for stage 2 colon cancer; after 3 treatments I was hospitalized for 10 days due to near fatal reaction to 5-Fu chemo. Soon after was diagnosed: poly peripheral neuropathy, and recently diagnosed with myoclonus(muscle)-jerking- condition; severe chronic and acute denervation lower to mid thigh, severe peripheral neuropathy. Can damaged nerves be repaired or benefit from supplements? I think not but know that Vitamin B-1, B-6 and B-12 are very beneficial for the nerve system.
Does anyone read this? Are there any current studies being done on this sometimes overwhelming painful disease? I am on gabapentin 900 mg and also take viatamin B injections 1 mg along with Alpha Lipoic Acid 1200 mg. waiting to see if this works. I stay active in the yard and walk briskly for about 20 minutes a day' 2 times a day. But for 8 hrs a day I sit at a desk. My A1c level is 5.7 . I have a trainer I work with 2 times a week for 30 min. He is aware of the pain in my feet and hands and we are careful of what we do as far as weights etc. I am 53, and still have a positive outlook, but it gets kind of hard dealing with this every day.
I/ve developed neuropathy,it zeemz.neurologizt told me that but he zaid uzually one only getz that if diabetic.
I do not have and have never had diabetez
I do not have any pain....but a lot of numbnezz and lozz of balance.
When I lie down at night ,the feet numbnezz feelz worze.
Anything I can do to relieve thiz at night?
I do not like to take medicationz az I get bad zide effectz.
in fact thiz whole nerve problem ztarted after I had an azthma bout.
dr. prezcribed Fluticazone ..bezide the Ventolin I uzually take for azthma with no problem...it did not improve the zinuz. zo I ztopped fluticazone
but I lozt zome hearing.and nerve problemz never left.
I rezearched the med. and I feel pretty zure it wa the zteroid in the
med. that cauzed me problemz.....I had mono.and eppztein barr many yearz ago and it left me with boutz of chronic fatigue zyndrome and problemz with my immune zyztem and I read that zteroid ,even a little in any med. can cauze hearing and nerve problemz in people like me.
Too late now, but I now check contentz of any med. anyone prezcribez before I take any med.and I don't take much.
Any commentz or zuggeztionz would be appreciated very much.
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?
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.
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,
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
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.
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!!
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?
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.
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?
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
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.
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!
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.
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
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?
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
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!
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.
D. jones, swelling and fluid around the ankles are not side effects of pregabalin. Generally, swelling in the ankles is related to the circulation.
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.
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.
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?
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
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 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
Lori again. Never blogged before so I guess I was too winded. Cut me off, so I'm finishing now if I can remember what I was saying! He has been using the meds on alot of his diabetic patients and also takes it, with good results. So I'm starting it again today. Ido not own stock or sell the stuff, this is a real 55 year person who has given up my horse and alot of walking and being active. For years I have had empathy for all my older patients and now here I am sounding just like them. Well what can you do. So, I hear all of you ,hope I can find this site again, just went looking for neuropathy, even though I know about it,hoping for I don't know what. I will let everyone know about this Mentanx if my sharp pain and numbess go away, or at least is more livable! Hopefully won't get nailed for mentioning a brand! Lori
I have neuopathy and now a Mortins neuroma.
I have had 5 spine surgeries through the years. C3- C7, and L-4 -S-1. The neuropathy has started since my last two 2 years ago. My doctor who teaches Drs., say he will ask a question: who knows what causes neuropathy?. Five hans will raise and he will tell them to put them down, no one knows what causes it. Too many causes to narrow down. Anything with the spine and stenosis for sure can lead to it. I'm a nurse , done alot of reading and so far have tried the lidaderm patches. It helps but you have to cut them in pieces to place them and tape. A bummer! My latest is Volturin gel. Don' t remember to shmear it on 4 x aday but sometimes once a day helps. I am not a holistic person, but my Dr. who is a lifelong friend, mentioned a prescription drug called Metanx. I won' t go near any of the drugs they use like Neurontin etc. because I don't want the side effects. This is all B vitamins, which I'm sounding like some holistic nut, but I'm not. So he gave me sample in August, and I filled the script. My shooting pains and some feeling started coming back. However, it was also about a year post op and thats how long it can take for nerves to heal. I stuck with it, and then blue cross wouldn't cover it because it's "vitamins" so I never renewed it. I'll spend it on my dogs but not me! Anyway, twisted my ankle over the weekend, went to see him yesterday just because I've had it with everything and told him I need to vent. He has ha
My foot infection began from a Golf Tee which became
logged in the toe of the golf shoe. I didn't realize it until I removed the shoe and saw that my golf sock was
bloody. There was no pain while I had walked 18 holes of golf, however, one week later I found myself in the Small Wound section on the out-patient hospital. After
having surgery on my large toe, it took at least 6-7 follow up visits to the foot doctor, and a whole year before I could walk normally again. Needlessly to say, I
always check-out shoe interiors before wearing them, and I am very careful where I walk barefoot.
this is related to karens comment on july 7 2010 my symptoms are identical i have had foot pain for 10 years i had neurosurgery in 2005 for a fatty mass tumor i had on my thorasic spine in hopes that would help. there was no response. i have tried every medication known with no success. one surgeon even told me there was no connection between my back and feet.does anyone in this world know what the hell is going on. i am losing my mind. thanks for listening.
I have a recovering peripheral neuropathy that was treated unsuccessfully with pain meds for years. Turns out I have Pernicious Anemia -- my body makes antibodies against what I need to digest B12. Now that I know, and I take b12 through intramuscular injection, my life has changed. Test for B12 (blood serum is not the only test! Also MMA and intrinsic factor).
I am 64 yrs old and have just spent the night (9/5/10) awake, the whole rotten night in severe pain in both feet. The worst attack I have had. I have Degenerative disc disease, they say causes my neuropathy. I am done, I want to take a hammer or take a knife and cut my toes off. I cried most of the night due to sharp terrible pains in both feet. I take Gabapentin, 300 mg three times a day, not helping. I can't take it anymore, I don't know what to do, does anything help, I don't have diabetes, they say mine is idopathic neuropathy. Does anyone out there have any suggestions, I am spent, and I am tired.
I am just discovering I may have peripheral neuropathy. I am 40 years old. The doctor I don't think really knows what is wrong. My bloodwork is normal except I am anemic. I am not diabetic either. I have every symptom there is. The pain, redness and swelling in my feet. The tingling and burning. The numbness. I was put on bed rest for a week. The swellling and redness eased up. But once back on my feet, within two days it all hit again. I can't sleep. I am so depressed I can't stand this. I cry all the time. Now the whole bottom of my feet are bright red. I feel like I am standing on hot coals. I am not sure what has caused this for sure. My job requires standing for 4 hours and some lifting as well.
It is progressing pretty fast. It went from my feet to feeling weakness in my right leg. Now the burning is in my fingers and my hands feel stiff as well. My skin on my arms and legs feel like I have a sunburn. It has all hit in a matter of maybe four weeks or so, I am worried. I am not sure where to go for help. A nurse friend told me I need to see a neurologist asap. I can not do that. I have no health insurance and my husband has not worked steady in three years. Do to his own medical issues. We have to move because we are no longer able to afford our home. I did order a supplement I read about on line that is suppose to be good for this condition. We will see. What should I do? I am scared of what the underlying problem is. Is it my heart? Fear of a stroke. Someone HELP!
i have peripheral neuropathy as well as restless leg syndrome. i also suffer with crohn's disease. i was given a dose of remicade which i believe caused my neuropathy. at first the doctor's had me on demerol, then switched me to methadone for the pain. it worked for the pain but caused me to have 2 resp. arrests landing me in a coma for a week each time. they say it was from the severe constipation i had and a buildup of the drug stayed in the stool which caused an overdose. i have since been taken off the methadone and am now taking dilaudid and gammapentin. it eases the pain in my feet to a bearable level but too much exercise and i'm bedridden for two days. i'm also now laxative dependant due to the constipation the narcotics cause. it's a horrible disease and thought i would share a bit of my story with you. thanks for your time, and i hope all of you with peripheral neuropathy find relief any way you can.
I was shot on may first of this year,in my. Upper back thigh, the bullet traveled up my leg, threw my but n is now stuck between my hip n pelvic , damaging my scatic nerve , n my peripheral nerve very painful , I have no insurance so if had no pysical therapy or meds , now I can't walk or if I will be able 2 ever again. They never caught who shot me either
I am 59 yoa & I have been diagnoised with prepherical neuropathy and I am NOT diabetic. I have been suffering with this awful disease for over ten years. Mine started shortly after my leg healed from a compound fracture. Drs. tell me the broken leg did not cause this since I have it in both feet. I take Neurontin, Cymbalta, Duragesic patch, & I have a Spinal Cord Stimulator.
Please can anyone help me?
I found that taking super B complex caused neuropathy that progressed up my feet & legs, hands & arms & started in patches on my face. Stopping the B led to it dissapearing in a few weeks. Then I develped fibromyalgia some years later and started having problems again but not too severe. Complaints to docs basically got no assistance. 2 years ago developed type II diabetes & even though regular A1C tests are under 7 the neuropathy is much worse. Doc first told me it was caused by the fibro, then the diabetes. I asked which one, he said both. Neurontin helpes but I must limit taking it to only in afternoon & evening- 3 total capsules. More than that makes my vision wonky and I lose balance pretty badly. If I were 80 & falling I would look closly at the Neurontin. For temp relief try Capzacium. [at Walmart, dark red, small bottle with felt applicator] will numb bottom of feet and sore muscles quickly. Avoid getting in eyes, mouth etc. & wash with soap & cold water to make sure you haven't gotten any on fingers. It is red pepper liquid & will burn sensitive areas. No smell and doesn't hurt skin on feet, arms etc. Bottle goes a long way. Good luck, we all need it.
I have had pain in my feet for several years and recently it is progressing to my legs. I am not a diabetic and my blood glucose is normal. The Neurologist believe it's neuropathy and keep prescriping neurontin. The Neurosurgeons believe it's a pinched nerve that is the cause. Anyone have the same experience?
I am a woman in her eighties andhave had Peripheral Neuropath for many years, and quite honestly I feel there is nowhere to go for help. Dr.,s and Neurologists just give me more medication. I am presently taking the maximum Neurontin, codiene, and because of blood clotting (pulmonary embolisms) i am taking warfarin. I have never smoked, eaten well and yet I have become much worse. My balance is bad, and I have fallen down several times.
I was told my condition was caused by my back (stennosis)
I live in Canada.
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