Foggy's "Invisible Illness" Support
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Non Diabetic Peripheral Neuropathy

Hi,

I'm brand new to this website and what an informative website it is.

To give you an idea of my background, I have suffered from non-diabetic peripheral neuropathy since August 2011.

I was prescribed Gapapentin, which did not have any effect. I am now on Zydol and at last am leading an almost normal life practically free from pain.

I would love to talk to anybody else who might suffer from this horrible problem.

Thank you, Lesley_J

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Hi, welcome to the site. the drug Gabapentin seems to be prescribed for alsorts these days. Its an anti epilectic drug. I was prescribed it for a persistant cough, when I questioned this my GP said it was good for nerve pains, but my pain is arthritic. Glad you have now been given a different drug and it works. Sorry I don't have your illness, it was just the drug prescribed was the same. Hope you find someone with like illness soon to chat to

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Hi Lesley,

Really not sure what's wrong with me...but I have nerve pain...that's for sure....had so many tests.....they still don't know! I have been on so many drugs too. If you want to chat then I'm here.

Wendy.

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Have you tried diazepam...just half a night of 5mg relieves my nerve pain

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I am not diabetic but I am pre diabetic and I suffer from this especially in my feet and its painful ,when I told my doctor he just said I will keep my eye on that but no more has been said .I am sohappy you have some relief .x

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Walkinh and diazepam at night helps a bit

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I am now diabetic genetically so I’m told. I take a lot of meds for other things but not Diazepam I am trying to up my walking as I have also got the misery of plantar fachitis which is not fun. Glad you have something that helps. Xx🤗🤗😇

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Dear Lesely

I am so glad you have found the med to relief your nondiabetic pn pain. I will try to check it out because .

My case is similar to yours, I found this article regarding to the issue :

medicinetoday.com.au/cp...

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To rahim50: I clicked on link, but it said there was no such page.

(and I just noticed that your comment was 4 years ago. Maybe that is the problem.)

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Hi Lesley,I have just joined this site too,I also have peripheral neuropathy,I see you posted a couple of months ago,so hopefully you are still here!

I noticed that there are not many many recent posts,that seems a shame.I don't have diabetes either,but was found to be very deficient in vitamin B12,& have to have regular injections now.

I was also supposed to take an anti epilitic medication,for the pain,but my lung specialist, said not to,as it could interfere with my lungs? Not sure why!

I find night time,is sometimes the worse,when in bed,do you have that problem?

Hopefully,you are still around,as it would be great to talk with someone,who has the same problem.

Take care, Wendells.

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Hi Wendell's just wondering if your still around as it would be good to talk to talk to someone with PN mine is due to B12 deficiency.

Vikki

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Hi Vikki,good to hear from you! Yes I put a post up, but never had any feed back,so gave up with it!

yes mine was also found to be from being B12 deficient,I still have the injections, but monthly now,it hasent been to much trouble, till the last 2 weeks, where i find my legs are giving me a problem,will have to ask the Doc. about it.Dont know about the memory,is that connected with this?

Anyway, let me know how you go,will be glade to hear from you,

Love Wendells xx

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b12deficiency.info/signs-an...

youtube.com/watch?feature=p...

The above video is a presentation by Professor Smith who did research at Oxford into B12 and brain shrinkage....It starts 4 minutes into the video. Well worth a watch. I doubled my dose immediately and bought B12 patches from Amazon :-)

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I too B12 for a while. I’m going back on it! Thanks.

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Jarrow Methylcobalamin B12 5000 mcg or 1000mcg from Amazon. Lozenges to keep under the tongue until dissolved - avoiding absorption issues in the stomach :-)

Everyone should take B12 !

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You know, I have hypothyroidism but am not a diabetic. 4 years ago I broke my left ankle and foot in three places at work. After the bone had healed, I suffered with “fire” in my leg, discoloration, and intense pain. I’m 41 and cannot be on my leg more than 30 minutes a day. I have been diagnosed with Chronic Regional Pain Syndrome/Reflex Sympothetic Dystrophy and now periperal neuropathy. I’ve noticed that the B Complex vitamins are used for the symptoms of hypothyroidism and neuropathy. As Gabapentin is not working and I’m ready to just give up, I think I’ll try again with the B vitamins. Thank you for the info here.

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It is often suggested that B12 is taken on its own as mentioned above. The B Complex is suggested to be also taken to keep all the B vitamins in balance and to provide Folate or Folic Acid which works with B12 in the body.

Have you thought about Joining Thyroid UK here on Health Unlocked. Over 77,000 members so lots of very knowledgeable people. I have been there for over 6 years :-)

Thyroid treatment needs to be finely tuned and correctly treated. Are you having the full tests done - TSH - FT4 - FT3 and the anti-bodies TPO & Tg - which test positive if you have Hashimotos.

Also you need optimal levels of B12 - Folate - Ferritin - VitD - have you been tested ? These levels need to be good to ensure thyroid hormones work well in the body - both your own and the ones you are taking ....

Happy to help. You can click onto my name above and read my Edited Bio - also you can see all the posts I have done over the years ... !! - and Replies !

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So what happens if your if blood works show b12 is ok...should i ignore that?

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Depends what you mean by OK :-) B12 levels need to be over 500 to prevent neurological issues. Doctors often say OK - when they mean in range - but it is where you are in the range that is so important. Why bump along the bottom of the range ?

If you are supplementing then the result will be over range and Docs will suggest stopping your supplements. B12 is water soluble so any excess not needed by the body is excreted.

If you take a look at the Pernicious Anaemia Forum here on HU - you will soon see how little GP's know about B12 - sadly.

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Hello Wendells, I have just joined this site too and I have had peripheral neuropathy for about ten years.

Luckily I no longer work (retired), because I don't think I could manage a single day's work now. I make it through the day with the help of a rest about 2 o'clock, because I get dizzy from the effects of a stroke I had last year. Mornings I keep busy with housework and the radio, which distracts me from the pain. Then, if I've managed to sleep, I can go out somewhere - more pain distraction! I try to exercise in some way every day, even if it's just walking. In the evening I settled down in front of TV, and occasionally dunk my feet in cold water with ice cubes in it - natural pain relief, but I also rely on gabapentin, which I can't do without. I think what I've found helpful is to keep looking for and doing things I enjoy, because stress, worry, anger, loneliness etc definitely makes the pain much worse. I just can't afford those things now. If I wake in the night, I keep an enjoyable book to read, as this again is distraction, and if you're not going to sleep anyway, why not? Hope you still check out this website, because I'd like to share stuff re PN with you. Hope you are finding some solutions for your pain, and taking gentle care of yourself.

Scilla

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Hi Scilla,lovely to hear from you,I dont know why,but people come on the site,give there story,& never heard of again!!

Congrats to you,it seems you have it all worked out on how to cope!

Interesting to note,the gabapentin helps you.

I have been having a bit of driving probs. at the moment,even though it's an automatic.My left foot ( which I use for drive & brake) seems to curl up at times,& I find it hard to feel,if this makes sense!

Anyway,it will be great,if we can share together,you're always welcome to PM me.Talk soon Wendells xx

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I got good tips from you. Thank you. I also get up and try to read. Often I’m too sleepy to do so. If I leave the house much, I am much much worse at night. (I have bad regular back pain too.) Thanks again.

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I have the same problem as you. I'm not on meds...I'm trying to do as much as I can to help relieve the pain. I bought a foot massager that feels great, but short term, same with the use of a tens unit and LED light. Led light (square in shape so both feet fit on it helps some...mine seems to be getting worse by the week/month. I can stand or walk for long periods of time or I suffer more especially at night.

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Diazepam will help at night only half of a 5mg....and walking helps too...it is worse to sit

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I have severe non-diabetic neuropathy from the waist down. It is also related to regular and bad pain on my left side. With no lortab, gabapentin and ropinitole, I walk the house all nite. Really. Without them I would eventually die of insomnia, I suppose. I have tried therapy and acupuncture to no avail. (I do stretch now 3 x a day which helps me until the nite hours.). In Sept I had a Nevro stimulator put in my back but it is still not working. (It has been reprogrammed twice.). Today I read an article about how opioids are not the answer. I’m so discouraged. Thanks for reading this endless comment.

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I hate meds too....extremely so...but not sleeping will eventually kill you....so just try the half of the Diazepam at night....it is worth it for the sleep...

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Hi diazepam helps at night only take half of 5mg....I'm new here

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Hi I've just joined I have non diabetes PN had it since 2010, I was wondering how you are now ? It affects me all day long, if you don't mind asking does it affect your memory as it does mine really bad !

Vikki

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youtube.com/watch?feature=p...

...a talk by Professor Smith who did research at Oxford into B12 and brain shrinkage. Starts about 4 minutes into the video.

b12deficiency.info/signs-an...

Also lots of information.....

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Hi Marz,txs for posting,very interesting,worth while to watch certainly.

Makes you think doesn't it? xxx

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Hello Vikkioby

My name is Eddie and I suffer Too. If you are still here let me know and I will tell you my story. Eddie G.

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hi I don't know if you are still here but I do to. I have short term memory loss. I do things that I simple don't remember. Like it never happened. My wife would ask me a question about a dentist appointment I was at and I don't remember. And it goes on and on. I can't remember peoples names or names of place I've been recently .Is this what happens to you?

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It happens too me all the time. And I have all kinds of different nerve damage . I am 52 years old and no one can tell me what’s causing this . I asked Dr. if I was imagining this or something he told me no it’s happening but they don’t know why .

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Hi. I have same thing & yes it gets my memory bad

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Hi Wendell's, Having a real bad day today, legs are painful and weak, will keep in touch as it would be nice to speak to someone with similar condition x x x Vikki x let me know how you get on with the Dr if you haven't been already x

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Hi Vikki,txs for replying!

My legs are still playing up,went to Doctors,but not very helpful! I have to see Specialist April 4 I think,so hopefully better luck with him!

Sorry you're not the best either,do you take any drugs for it? Take care & keep in touch xxxx

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Good morning Wendells I've tried both the anti epileptic drugs no use just use regular pain killers my specialist wanted me to take a mild antidepressant ! Not sure about doing that at them moment. I also go to the specialist in April not sure why as they've already told me there's little they can do x did have a MRI in Nov as,GP thought I had MS ! As NP symptoms are identical thankfully scan was clear x

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Have you read up on vitamin D ? vitamindcouncil.org

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Good evening from me!(in OZ) thank goodness you didint have MS,yes I heard it can mimic that,& something else I can't remember now,lol!

That's interesting those meds. Didint help you,I refused to take them,because I read they can exacerbate lung probs.My Doctor wasn't impressed though,as he feels they are the great answer!! I have Copd,by the way,that's why I was reluctant!

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Sorry it flew away on me! Good luck with the specialist,at least they're keeping an eye on you! Don't disregard the mild antidepressants as they could help you! xx

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Hi everyone. I feel better just knowing you are out there and working on solutions. I have neuropathy primarily in one foot and some nights gabapentin works and sometimes it does not.

When it does not, I go nuts in the night. Maybe i will try B12 even though my doctor did not tell me too. My daughter has restless leg syndrone which is related and after many other suggestions, her doctor put a patch on her and it seems to work. Some nerve drug.

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I started having tingling feet when I was pregnant with my son. He will be 3 years old and I have had numerous tests done. I am not diabetic (or pre diabetic) although I am overweight. Unfortunately I believe doctors feel like that is the issue. I have had a CT done to rule out MS since others in my family have had it. Glad to see these posts and now I can go back to my doctors with other information. I am learned to live with the discomfort and pain but I am hopeful I can get some relief! I am only 40 years old and have a young child I keep up with!

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Hi Michgal,how did you go with the Doctor? Don't feel guilty about being overweight,I was not,but still got it!

I don't know what your Doc.put you on,I take Lyrica( pregalbin) 1 in am & pm,have found it quite effective.Im only sorry I didint try it earlier!

I can quite understand with having a young child,you need to keep up with him/her!

Let us know how you go,good luck! xx

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Hi,

I am new to this site too. My problems started January with chilblains which then progressed quickly to burning/tingling feet and legs. Doctor prescribed Nifipidine but they made the flushing and pain much worse and I didn't stay on them after a week. I have also been on the beta-blocker Atenolol for 12 years which I gathered from doctor can cause problems with circulation and has now prescribed me a different one. I have symptoms of neuropathy and Raynaud's and still have chilblains. I have an appointment next week to see a specialist has doctor thinks RA could be involved. I have been pre-diabetic for over a year now so am very interested in your post regarding non-diabetic neuropathy which my doctor has not discussed the possibility of.

Sue

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Hi, I am a 35 year old woman , I found out that I have neuropathy in both arms and hands along with down both legs into my feet !!! I hurt pretty much all the time . I am on medicaid cause I am already disabled because of back surgeries and seizures !!!! Does anyone know how it has spread so much in me and what should I expect to happen !!! I am so scared of not being able to use my legs soon by the way it is spreading , can anyone please talk to me and help me to understand what is going on ??? I am so dang scared !!! I have a great husband of 15yrs and two kids one 16 and the other is 12 !!! I just wish I could make this go away so my Family didn't have to see me go though this !!! Thank You to anyone who can help me understand !!!

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Hello Weebeth

Your post was nine months ago. Hope you are still here. I have neuropathy also, but it started in my legs. I'm not a diabetic but suffer all the same. I was told my neuorpathy was caused by alcohol. I didn't stop drinking for about 9 months give or take. My question to you is, do you drink any alcohol ? I mean even one drink. If you do, that could be your problem. It was mine. If you don't drink, then I really don't know. My problem has spread now to my hands. I've been diagnosed with carpool tunnel syndrome. My operations are coming in Dec 2015. I too am depending on my wife and kids to help me do all the work I use to do. Pls. respond. Hope your life is good as possible Eddie G.

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I developed that almost a year ago & like my physician

keeps saying, "You're not a diabetic". I passed my last

two fasting blood sugar tests. And test every few days.

My physician just put me on Gapapentin 300 MGS , 3

times a day. And soon I will go through a nerve study

through a different physician. One time my mom tested

me with hers & I was was at 210, so after being tested at

physician's office, he got me a tester & supplies, I changed

my diet which worked. Mom has to test & take a pill & her

mom was on a early morning injection.

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just came across your post (Nov. 2015). I have the same nitemare since May 2013. I take Gabapentin 2 tabs 600 mg 4x daily and it helps keep in line. I never was prescribed Zydol. I also take Oxycodine 30 mg 8x daily to maintain all my other pains. My pain in my feet is so bad I can only work two hour (avg) daily. I was forced to retire, The pain is in my legs and I was just diaignosed with carpool tunnel syndrome in both

my hands. Life has not been easy on me in my 60's. let me know if your pain has progressed or your pain has stopped. Eddie G.

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Hi,I'm new to this site.had p/neurophathy for 4years.don't like taking medication If I can avoid it.Taking a low dose of Lycria at the moment.i'ts helping a little.I find this site very helpfull.reading other people's comments. regards to all

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Hi,I'm new to this site.had p/neurophathy for 4years.don't like taking medication If I can avoid it.Taking a low dose of Lycria at the moment.i'ts helping a little.I find this site very helpfull.reading other people's comments. regards to all

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I have the same thing. My dr. Can't diagnose me properly without diabetes. But I have no diabetes. There has been speculation about my old doctor that said that my neuropathy without diabetes was caused by me being severely beaten for a number of years by my foster mother

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Hi, I just came across this site while researching PN. I'm not a diabetic either. I have been suffering with this pain for about 7 months now. My doctor has taken me off work going on my 3rd month now. She doesn't want me on my feet for more than an hour, I work 12 hour shifts. I'm only 43 and I can't see myself getting approval from disability nor being able to survive off it. I have also been prescribed gabapentin 300mg and nabumetone 500mg, neither seems to be helping out much. I'm schedule to see a spine specialist tomorrow and nerve specialist 3 weeks afterwards. I hope & pray they find a solution for this pain real soon. I'm sorry to hear about your pain but I am glad to hear I'm not in this alone. 

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It's so strange. I do not understand. Mine started like as if I had a sun burn on the bottom of my feet, now I feel silly telling people I can't feel my feet hardly at all, but yet they hurt very badly. Seems to be be going upward a little above my ankle now. No diabetes, every blood work comes back perfectly.

The only thing I can think of is all this started after I had a hernia surgery which was elective and the biggest mistake I've ever made.. I also am on gabapenten, no affect on feet, but helps me sleep, somewhat. Even put on some other med I stopped taking because it caused extremely vivid bad dreams... (Edit) the drug was Lyrica. I could not tolerate it. Really messed with me mentally

I have no idea what to do. My quality of life is going down hill everyday.

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Hi @Bpriddy74 I think we are all in similar situation. Mine started 7 months ago. All bloods normal, no idea what is causing it or a cure. Quality of life is going downhill as you say. As for what to do, you just have to keep going and trying different things. I am trying walking for 30 mins and vitamin b12. so far no effect but its early days.

Good luck with coping with it, you are not alone.

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Thanks! It's got so bad, I've seemed to have developed hammer toe and apparently when walking, I'm bruising my toenails. I have even placed a TENS Unit on my feet (4 probes) and placed 2 ends on areas of my leg I can feel, such as under my knee and absolutely no feeling in the feet, but could feel the tapping under my knee. So weird. Posting long term meds I've been on to see if anyone else has been on these, only thing I can think of.

Adderall XR

Xanax

Lisinopril

Metoprolal

Thiatrampizide-HCTZ (SP) wrong

I've been on these meds, the past 10+ years. Curious if there is anyone in common taking any of these long term.

Thanks!

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Hydraclorithiazid

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I have taken all but the Adderall for years... I wondered the same thing.

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I have been taking lisinopril and metoporal for years. For high blood pressure.

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I am so glad to have found other people with PN. I have RA and developed PN a couple of years ago. I noticed he numbness in my feet for some time and then it started creeping up my legs. Also my hands are very painful. I am not sure what happened but my Rheumy tells me the arthritis must be damaging the nerves in my spine. I have trouble with my left eye, focus is bad when walking about, feel a bit drunk!. I am due to see a Neuro man but it seems to take forever for an appointment. Get so tired. Wonder if it is MS.

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You just said my exact words. I wonder if it's M. S. My doctor did kit test me for it. Just said it was PN due to cervical spine surgery that went bad, however, I've had 3 family members die from MS. I wonder everyday. I remember my dad hurting in his legs. That was his first sign of MS

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There has to be some common denominator that we all have. The key would be sorting through what is what. Possible long term medications, surgeries, illness, life events, etc...

I posted long term medication's I am on and a surgery I've had. Also I am currently only 42 and this all started back in 2008-09.

Bummer for me right now is I currently do not have good insurance.

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How bad is your neuropathy and what gives you relief from the pain ? I was told mine neuropathy was from alcohol. But it could have been many other things. I've had it now over three years and I do see some improvement in my condition. I don't have to take gabapentin as much and I can stand on my feet and work for longer periods. So I do see some light at the end of the tunnel. So don't give up. Your condition, non diabetic neuropathy has a better chance of improvement than diabetic N.

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@eddymo My pain is pretty intense, especially at night when going to bed. Close to the point where if it was any worse I would go to the E.R.

What kind of alcohol? Like heavy liquor drinking or drinking a beer after work? I've done that and I do not even finish that. I did take an alcohol assessment and was in the "social" area. Not close to abusing it, but I've always wondered about that, however I know a lot of people, both over weight and average to fit, that drink extremely heavy and have no problems whatsoever. I was told it was my weight and I'm a big guy. Mostly muscle though, but do admit about 30lbs over weight. 6'2" 290lbs... I have dropped down to 255lbs about 9 months ago and no change at all.

I can feel the numbness starter to go up my ankles up toward the mid part of my chins / calfs. Feels like I'm wearing socks. So weird!

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My friend, if your still drinking you gotta stop. I my have read you wrong but sounds like your drinking. I'm 5' 6' 175lb at 67 years . This neuropathy has no favorites, it attacks where it wants. I had one beer after three years and it went right to my feet the next nite. Nite is the worst time for this nerve problem. I couldn't sleep with my feet under the bed covers, even in the winter. then when my system got cleaned out from alcohol it got better. Hot burning needles, the weirdest f--k up feeling. You should read about it on the inter net so you can know what to expect from this. Now I've heard of a cure for is type of neuropthy, but I don't know. I went to a doctor here in my area and for five thousand dollars to start, he would with special vitimins , minerals and what ever, they would (with no guarantee) cure you. So let me know if this helps you. I still take Gabapentin at nite to stop the burning in my feet.

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I would like to suggest toxic chemical exposure. Read up on Anniston, Alabama and/or Ft McClellan.

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in the above replies, two people have used the term "carpool tunnel syndrome". Please know that there is no such thing. The correct term is "carpal tunnel syndrome".

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Hi Lesley, I have lived with a genetic form of neuropathy for 25 yrs, diagnosed by Mayo Clinic. It has rendered me disabled and been a horrible condition to live with. If I don't pace myself and overdo my activity, I am rendered to the point where I can not walk due to the pain. I am on medication, but right now I am in a severe flair and in a great deal of pain. But responsibilities go on and I have to manage them also. I agree with you, it is a horrible problem

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Hi- I just discovered this site. I have had peripheral neuropathy for about 30 years. I developed type II diabetes 12 years ago, secondary to taking Lipitor and a cortisone asthma inhaler, but it was quickly brought under control and has stayed in good control all that time. The doctor I had for 25 years was well aware that the neuropathy preceded the diabetes by many years, but it was worked up twice with no definitive diagnosis to account for it. The problem is, I moved 600 miles to another state and got a new doctor. This doctor just assumes it is diabetic neuropathy, and wrote that diagnosis in my chart. When I pointed out to him that I had the neuropathy for many years before the diabetes, he just snickered and said "oh, you probably had the diabetes all along and just didn't know it". (!) Now I have to figure out what IS causing it, so I can shove his opinion up his butt! I'm not sure where to start. If two neurologists in a major East coast city couldn't figure it out, I'm not sure how to get any answers in a small town in the rural South. To make matters worse, it seems to be progressive, and I am also (for the past 2 years) getting other weird symptoms that might possibly be related, but I'm not being listened to for any of that, either. I'm not sure I will get any answers on this site either; I'm just sounding off. I'll keep searching.

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Hi, my name is Tammy. I have neuropathy pain three lower extremities, especially the left side. I am not a diabetic. The doc put me on cymbals. It helps, but like I'm getting immuned now. I had EMG done, MRI, Xrays, all test are mormal, can't figure out why I have this pain, it's scaring me more than anything.

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I am a 46 year old male the doctor put me on 800 mg of Gabapentin 4 times a day it helps very little he also put me on 30 mg of oxycodone 4 times a day I hate it because i am addicted to the oxycodone and the neuropathy that i have affects the bottom of my feet and a area of about 8 in x 6 in on my upper left leg I have no feeling there and it is always hurting it hurts to walk sit and even wear clothes but I have found out for the feet that if you buy a pair of crocs at a shoe store it will help with your feet they run about 40 bucks so they are not to expensive. And yes i do feel for anyone who has these problems I hope this helps who ever reads it. Please have a wonderful life and be kind to everyone you meet.

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Hi I too am new to this site and have posted one post. I am on Gapapentin and have had some luck with the combo of medication I take. What is Zydol and can you get a good nights rest? I would love to hear what you have tried :) Pammy x

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Here is my "two cents" on "non-diabetic peripheral neurapathy." Ten years ago mine began in both feet as though I had "socks on." In this time it has not progressed and does not have pain. But the lack of customary nerve feeling changed. Actually my feet are more sensitive to surfaces when bare footed. But I stress--no pain nor progression. I asked a surgeon I trust about the cause and he simply said--"there are more causes than one can mention!" So--what can I add to the discussion. Nerve damage might have come from frost bite I did not realize at the time. And why am I lucky compared with those contributing to this site? I do not take prescriptions of any sort, but do take nutritional supplements. For over twenty-five years I have taken 500mg Niacin one to five times/day for general circulation. I am seventy five and believe I have excellent circulation from the daily high dose Niacin. Few people will take Niacin because of the "flush." But take it for a week or so and the flush is hardly noticeable. And when I take other nutritional supplements, I also take a Niacin tab just to make sure of distribution. Maybe that is why my PN has not progressed and does not cause pain. Also I take much extra potassium which solves "night cramps" from overwork. I don't know if there is any connection with PN, though. I buy ascorbic acid powder and potassium powder and put them both in all the water I drink. (but then maybe I should knock on wood?) Good luck--Eric

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What is the flush ?

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Possibly Alpha Lipoic Acid supplements, this ingredient is in many supplements sold for Diabetic neuropathy so I tried this alone for PAIN in my feet which helped greatly, did take a few months (maybe not high enough dose that I was taking or not a good brand?) of daily pills but I'd rather take this than prescription meds. It helped so much I quit taking it daily & now I just take it occasionally. I don't think I'm diabetic but it did run in my Dad's side of our family. There are two different supplements known as ALA so be sure to look for Alpha Lipoic Acid,. It does make my pee smell like skunk :) , but it's worth it to relieve my foot pain so I can walk & stand more comfortably.

Oh yes, I have high arches and a need for a wider toe box & so many shoes do not have good arch support so I found some better shoes (the Skecher rocker bottom sole) to walk in which also helped me. Hope this helps.

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I was told by neurologist that I have PNA because of high arches , clawe toes and no reflexes.

Which I've had all my life so why two years ago did ON start in my big toes and creep now to my ankles .

My legs are heavy tired and painful got worse since I had a mild stroke in Dec 16 and I took statins

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Thank you all for so many tips and sharing . I am a 63 year old woman who has had restless leg for many years . I took Klonopin at night for that but then the neuropathy started about 4 years ago, just as I was leaving a 38 year abusive marriage . Stress ????? I am non diabetic , healthy otherwise but the pain in my feet is unbearable at night. Lately it has settled even more in the "pointer" toes of both feet so much that I would like to cut them OFF !

I take 600 mg Gabapentin 3 X a day and 1200 at night along with the 1 mg Klonopin , 60 mg Cymbalta and am trying Tramadol at night for pain . I use Lidocaine cream also . NOTHING is helping the pain at night .

I do drink wine and an occasional beer or two - became a habit to help the stress and to try to sleep but reading here that could be making it worse.

Walk 2-3 miles a day , self employed but on my feet most of the day . Driving aggravates it

Have been tested for B12, MS, Lupus, Lyme , etc ...all good

Some tips that help a little ???

Biofreeze roll on - over the counter - helps some to distract in bed

Must wear Miracle Foam sneakers with arch support ( I also have high arches - used to go barefoot all the time , now , cannot tolerate it .

Crocs and the Crocs flip flops are comfortable - most shoes cause pain

Flexible ice pack - new thing is to wrap my feet in the ice pack with a towel and slide into bed - if I am tired enough , this helps me fall asleep

Don't want to start narcotics but am going to try medical marajuana and see if that helps.

Would love advice or to chat with anyone who would like to connect . Try to find a cause !! So many people are developing this terrible thing - environmental ? Something in food ? I eat organic .

Luann

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I feel the same pain ....I'm not taking any me cation

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Hi Luann, your board resonated with me, because your story is similar to mine. But I am 73, live in the uk and I am retired. I was diagnosed with Sensory Axonal Peripheral Neuropathy just over a year ago with no known cause, (but I was low on folic acid and B12 and Vitamin D), it started with both my feet feeling as if I was wearing socks, this numbness moved up my legs to my knees, and from my elbows down to and including my hands.

I have had all the tests on offer, including and MRI scan, also saw a Rheumatologist. No one can tell me what has caused my problem.

The nerve pain is sometimes horrendous especially at night.

I tried Gabapentin, but it altered my brain chemistry, it made me feel quite ill, I only took one tablet and no more. It is in the news now that this drug is addictive?

I take vitamin B12, folic acid and B1 Thiamin, and that seems to damp down the pain somewhat.

I also buy 'Magicool' this is a container spray the holidaymakers use to spray ice cold water on their faces in a tropical country to cool them down.

I spray my feet and my legs at night before bed, let them dry, and the pain goes away for about four hours.

Sometimes I have what I call a relapse, I wake up and find that all my body is stiff curled up and achy! When I get this, it can happen for two or three nights in a row.

My friend baked me a Marijuana cake, just a little one, the size of a cupcake .. I cut it into four pieces and froze them in my freezer, and when I had a flare up, I ate one piece an hour before bed .... wonderful relaxed sleep and no pain.

I thought I would mention that in case it helped.

I hope you are feeling better

heather x

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Hi Heather ,

Thanks for the reply- I am on tons of Gabapentin and it helps during the day because if I miss a dose , the buzzing starts and then I can't catch up to the pain !!

I have gotten a medical Marijuana card and have been trying that - it does help me sleep ! I don't use it during the day because I work . The edible knid that your friend made definately help with sleep !

Where can I buy the spray ?

Thanks !!

Luann

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Hi Luann,

As I mentioned, I live in the UK and I buy my 'Magicool' either from the Chemist online (Boots usually) they had an offer on recently so I purchased six spray cans) or eBay, or Amazon sell it.

But I would imagine any other brand of freezing spray by would have the same effect.

I was interested in your 'buzzing' ... sometimes when I just awaken, or when I have having a 'relapse' and lay in bed I can actually feel by body buzzing!!! It is very weird, is that the kind of thing you mean?

Take care

heather x

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Hi Lumama you sound much worse than me, having suffered those awful sensations for years particularly after folk dancing my life long love..Wet cold towels in the night bound up like a mummy or thick tight socks you name it I tried it..After tests, it was diagnosed PN and 2x500g of pregabalin tried ..What planet I was on I'm not sure ..but soon came down to 25g per day of Lyrica..This leaves me upright with the occasional lurch if not concentrating or showering and stomping especially if stressed..this I hate most of all as its so visible... However its becoming a problem to cycle ..walking ok but lately just to push the peddles is awful...

So I ask do you think a gym might as you sound fit and active yourself... if I fall off as I do occasionally I cannot get back up with no top leg pressure interested to here other people of this age and their solutions regards Chippy

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Hi Trippy

I have recently been diagnosed with PN initially in my face-for which I was given botox, that made me look quite scary but which has now moved to my legs and hands. Like most people here I have been prescribed painkillers but they do not help as such.

I think the key is walking and moving your hands which hopefully will delay the degeneration of the nerve ends. I realise that this can be painful especially if you have the "stone in the heel" sensation but persevere. Uneven surfaces can be a real pain so using the treadmill in the gym makes sense as well as some light leg exercises. Flexing your fingers and cracking your knuckles also helps to keep your hands flexible.

All the best

P

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Hi Leslie: I have Parkinson disease and neuropothy in my feet. I think I could walk much better If I could cure the numbness In my feet. I am not diabetic.

Can anyone help me with this

Thanks and a happy 4th. of July

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I also have non diabetic neuropathy,. The burning molten lava feeling seizing my muscles runs down my neck through shoulders, my chest, and curls up my arms, hands and now face!

So far, like you, I have had minimal results from Gabapentin 3xD. I still have bad days/sleepless nights of rolling attacks. Am interested in the medication you have seemed to have had results from.

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I was also diagnosed with non diabetic nerve pain. I was given Gabapentin 3xD too. I took it for 3months with absolutely NO relief. I was recently prescribed Lyrica 2xd and Baclofen 3xD. I feel AMAZING! I was unable to stand for 3mins and was unable to walk without a walker or cane. It also affected my hands and arms too. I'm only 36yrs old and I have young children. I was unable to spend much time with them and I was devastated but since being prescribed Lyrica and Baclofen my quality of life is GREAT! Good luck to you!

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I have non diabetic neuropathy ...

Drives me crazy

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Me too I take gabapentin and amtriptyline

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I've had Non-diabetic PN about 3 yes, but just in the last 3-5 months it has intensified exponentially. Why? Stress? I'm not taking any meds. I'm trying to help control it with tens units, LED light, massage, soaking, nutrients, good diet, some exercise...but it is intensifying almost weekly. Any suggestions?

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I have peripheral neuropathy in my legs. The physio at the hospital gave me stretching exercises and said I had to do gymn 3 times a week. I am now a lot stronger and the pain is much reduced. I have had the problem for over 5 years but am not taking medication. Beforehand I also had muscle wasting.I would recommend getting referred to a hospital physio she ws brilliant in assessing my problems. She gave me the confidence to exercise and when it hurt reassured me to carry on.

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I too have non-diabetic peripheral neuropathy. No known cause. I have sciatica and compression of my Lumbar discs but MRI ruled out pinched/damaged nerves. I have the stabbing pain at times but the worst of it is the numbness, which includes my feet and on bad days my ankles and up to lower calf. I also have restless leg syndrome. My doctor has put me on gabapentin and slowly increased up to 800 mg twice a day. The gabapentin has been great for the restless leg but not for the neuropathy. It drives me crazy and I am terrified of the possible loss of my mobility. I'm a nurse with no intention of retiring anytime soon. Looking for answers.

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Hi Daisy. Your story sounds oh so familiar. I too am RN around your age on my feet 12 hours (well I am on LOA presently). I am non diabetic. My GP and Neurologist just look at me when I say I just want to place my feet in a bucket of ice water, especially at night! Pain, burning, numbness tingling. It's moving up my ankles and lower legs now. It started out at night now all day getting worse. My B12 was fine. I have had numerous tests and seen specialists with no answers. I put myself on Vit D, BComplex and Magnesium just this week. Will take time to see a difference if it is in fact a deficiency. I hope it is just that! I feel your pain. I have a 6 and an 11 year old who'd I like to run around with but it's kind of debilitating most days. I have rubbed Voltaren Cream on them which gives some temp relief. Let me know if you find anything else out. I haven't gone the Gaba route as I am on a medication that is contraindicated. Although weaning off that medication I really don't want to take anything else! Very frustrating!

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Ok Lesley. I'm Cindy and I suffer from this awful disease as well. I really need to find someone who understands what I'm going through since I'm alone with this. It has taken my life away and nobody understands. I need miracle drug that will take some pain away. Are you on the right track with the right mess?

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Hello it would be really good to hear some advice and talk to people who understand how it feels. I had recently been diagnosed with RA. I was on hydroxychlorquine but been recommended to be on Methotrexate. I had pain in my feet everyday with the mornings being the worse. but when I am wearing orthofeet's shoes, at that time I dont have pain in my feet

orthofeet.com

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Hi Lesley, I have been suffering with PN for a good few years, I've been tested for everything, I feel the doctors have no real interest , I take Statins and they tell me it's probably related to that, but I don't buy that, I'm not sure what the future holds and if this will travel to other extremities, but for now it's just the toes, there is a specialist department for idiopathic PN at Kings College Hospital in London, I have asked for a referral to them, hit this link and ask your doctor for a refer, good luck. kch.nhs.uk/service/a-z/peri...

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I have also asked for a referal to Kings but have been told no. There are apparently 6 people in my GP practice with ideopathic peripheral neuropathy. It was implied it was too common to refer to London. Good luck.

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It took over two years to get my "funny foot" taken seriously, eventually referred to club I c for electric tests, diagnosed mild to moderate NP I am not diabetic, so told degenerative, but as am lucky to enjoy good health, do not drink or smoke, do not accept this, blood tests show everything normal, saw reports on ALA helpful, but could not get at local pharmacy, fortunately they have resident homeopathic,who found research proven ALA found to be effective on damage to nerve membrane, and Flaxseed oil is 500gems Alpha clinic Acid, not quite the 600gems recommended but since taking I have had no foot cramp, I do not otherwise suffer pain, just constant tingling.

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Welcome Lesley to the web-site and believe me you are not alone. I also suffer from non- diabetic neuropathy since about 2012 but my my neuropathy is in my lower extremities legs, feet without any pain. It is hard difficult to left my legs and I walk with braces. My balance is not great. I went to rock port shoe store to get a wide width shoe but the shoe would not fit due to the braces so the young sales woman ( thank god for her Nicole)recommended extra wide and go on line to rockport.com they had extra wide but sold out so I googled extra wide shoes and ORTHOFEET. Com came up and it is a great website I bought two shoes and feels like I have been reborn. I walk with canes etc. I am glad you found zydol and it is working for you. For a while my neuropathy was idiopathic. Due to a low b-12 herd and hiatal hernia. Wish you nothing but the BEST. Greg ! I check in day to day. Don’t forget you are not alone.

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I also take once a month a b-12 shot by my neurologist and take 4 time a day folic acid 1mg with 1 a day Calcium citrate

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A tip for those with neuropathy -- there is a great product on Amazon called Polar Ice Foot and Ankle Wrap that has provided me a lot of relief. They are well made wraps you keep in your freezer, wrap around your feet and/or ankles, and attach tight with velcro. I suppose they kind of numb your feet or lower legs. They feel great, and temporarily keep the burning pain down.

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I don't feel my feet & the nerves in them have a mind of their own. A few months ago, my left foot swelled up. After a couple weeks, I went to IU Health Bedford Hospital ER. After a MRI, Osteomyelitis was diagnosed, which was an infection going all the bone of one of my toes, which Dr. DeVane removed by surgery, a week later. For the last few months, I been receiving treatment to my foot, at the IU Health Wound Care Center.

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I was interested to see your post even though it was a while ago. Last year I had my foot reconstructed and a new shoulder so have been a bit off the site. I still have the dreaded PN but I was wondering how you got on with the swollen foot. I have the same problem but nobody can tell me what it is. I hope you are doing well.

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Keep your feet elevated while in a chair. Worked for me.

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Thank you for reading my post, I do put my feet up when I can but its only when I get to bed and wake up in the morning to find my normal feet again. My feet and legs get so uncomfortable, I only weigh 9 stone so am not really overweight. The always want to put everything down to age but I wish they would explain things more, I can take it on the chin , if they can,t do anything then fine but what is causing it. Wishing you well, this sunshine helps lift the spirits.

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I have had perferall neuropathy for quite a while. Knowing most meds dont work or give little releif. And being a nurse for 45 years. I decided to use some of the things out of the box. I use Vick vapor rub on my feet at bedtime and do not cover my feet. It works very well for me. It's woth a try if nothing else seems to give you releif.

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Hi I'm still wondering how I got P N but it did start after blader surgery 5 years ago...but I also have muscle weakness ..I struggle with stairs and getting up from the floor...the only thing k have E taken which helps my leg pain at nights is diazepsm 5mg but only half a night...I try and keep fit but I hate this condition I avoid areas with stairs...

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I have had plantar fasciitis for a year+ and found that these slippers make walking less painful. I also believe that by ordering a new pair as soon as I see "wear" that they are helping me to get to my goal of a pain free walk. I have ordered an orthofeet slipper(same one) three different times now. I have been wearing normal sandals for over 5 years now. Orthofeet brand is wonderful for my feet issues. I would never change. I have tried other proper sandals but I always come back to the pedic walker style. It might not be the best looking one but it sure is the most comfortable brand.

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Hi I have PN too I want to know what your symptoms were...my worse is the leg weakness the inability to do stairs and get up from the floor..and I am pretty fit so that is not my issue?

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It sounds as if you have all the usual symptoms which are very difficult for you if you have a lot of stairs. Getting down on the floor is very difficult, I try and use little stool if I have to work low down otherwise we find ourselves crawling around looking for something steady to pull up on. In the bath I turn over on to all fours and then push up and make sure you have plenty of fixed handles around to grab hold of. I weigh 9 stone and keep fit but this PN has really made me think of all the ways I can help myself. Good Luck.

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Keep reading HealthUnlocked Lesley.There is no cure for our problem yet,but you could possibly get some help from this site

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Hi I have peripheral neuropathy I told doc four years ago all he said was we will have to keep our eye on that and nothing , partly my fault because I don’t go to doc . I now how’ve diabetes so see diabetic nurse every 6 months going for second appointment soon so she keeps an eye on this . Hope you get some help xx🤗🤗😇

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I’m an ICU nurse and work 12hr shifts and started having plantar fasciitis and orthofeet shoes have solved my problem. I wish they were a little more stylish, but at this point I choose style over function. I see that they have a new color and I will most definitely purchase these again when they need to be replaced. These fit the bill! and the return on size went very smooth. So I am so happy! and so are my feet!

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