What can help or stop the progression of peripheral neuropathy?
I have been diagnosed with idiopathic peripheral neuropathy and pitting edema in the feet and hands secondary to the neuropathy. I am experiencing progressive pain in the legs and feet that make walking an impossibility. I am not diabetic and have been tested for everything imaginable. Is there anything that could help or stop the progress of this?
Peripheral neuropathy is a condition in which the nerves of the lower extremities cause pain and abnormal sensations. The word "idiopathic" literally means that the cause of this type of neuropathy is unknown. It is estimated that 35 to 50% of all neuropathies in the United States are of this type. It sounds like you have been thoroughly examined and tested to rule out known causes of neuropathies, like vitamin deficiencies and diabetes. So, unfortunately, I cannot make any suggestions for you to help slow the progression of this type of neuropathic disease. However, there are many treatments that can be tried to make the pain less severe.
Medication treatment for neuropathies can include your standard pain medications, but most people find that they really don't help nerve pain that much. The majority of people do well using antidepressant and anticonvulsant medications, as they are some of the few medications that reduce the nerve pain itself. Also topical ointments, like lidocaine jelly or capsacin, can help reduce pain and discomfort.
Non-medication strategies for peripheral neuropathy include elevating your legs (to reduce the edema) and keeping your feet warm with some good socks. Eat well and try to exercise if you are able. If you cannot stand to exercise, I know that many public TV stations play chair exercise programs daily, which you can do to help maintain your mobility. You may even need a physical or occupational therapy evaluation to help you get started with walking, as you may need some assistive devices to help your balance.
My last suggestion to you is to make sure you have been seen by a neurologist and to follow the advice that they give you for treatment. Furthermore, you can try to join support groups for conditions like this (for sufferers of chronic pain, for example), which may give you valuable insight and advice on how to live with this condition on a daily basis. I wish you the best of luck.
I would also suggest you see a chiropractor as sometimes conditions that involve numbness in the legs and feet can be related to nerve impingement in the spine. I began having numbness in my toes several years ago. Seeing both a good chiropractor and a professional massage therapist have relieved my symptoms entirely. Also, has anyone recommended support stockings? They improve circulation and can help with edema. Lowering the sodium content in your diet to less than 2400 mg per day can help with lower edema too. It takes some effort because so much canned and package foods contain lots of sodium - look for "low sodium" on the label and compare!
I would also suggest taking a very good vitamin B complex. There is also a type of vitamin B called benfotiamine that is very helpful. Have you been checked for a vitamin B-12 deficiency? The first comment had some very good points. Watch your salt intake and elevate your legs whenever possible and if it is impossible to actually stand to do exercise, get yourself one of those little floor pedalers. I bought one for my husband after he had a car accident and shattered his hip and ankle. He wasn't able to walk for 3 months so having this little device helped him get some exercise in and also helped when he wasn't able to attend physical therapy. Also, have you asked your doctor about the drug, Lyrica? Good luck, I wish you well.
lyrica is helpful it relaxs the nerves might make u tired so take it at night,exersise does help also massages for lower back and legs.
I was diagnosed with mild perepheral neuopathy some months ago. Now I am having some numbness on the left side of my face and either muscle or fat is atrophying in my left cheek. Is this part of the PN?
mamag86: Please get in and see your doctor about this problem. Never ignore symptoms. I hope all will be well for you.
A friend of mine had this problem for years. Literally could not walk on his feet for the pain. Doctors could not help him, so he did a hair analysis which told him he was low on magnesium. It told him to supplement with the Magnesium MALATE form of magnesium daily. It also recommended he take high doses (3 times the normal dose) of these B vitamins: B6 (P-5-P form is best), B5 (Pantothenic Acid) and B12 (methylcobalamin). Also 1,000 vitamin C 3 times a day.
Well he did this and the pain entirely disappeared in less than a month! He is in his late 60's now and playing golf again.
Most everyone in the nation is low in magnesium because it's not in our food any more. My friend says when he stops taking magnesium and the B5, the pain returns, so that was his body was missing that caused his pain.
Another friend had carpal tunnel and was going to get surgery, but read that high dose B6 would help. She took it and the carpal tunnel went away. The B vitamins are very good for any kind of nerve trouble because they nourish the nerves.
I doubt these supplements would interfere with medications (my friend was on blood pressure beta blockers at the time and the doctor okayed them). But you will probably want to check with your doctor first to make sure of it.
I have axonal demyelinating peripheral neuropathy and takebetween 150 and 225mg of lyrica daily for it. Since I also have kidney trouble, the lyrica dose level must be in relation to the creatinin clearance level. Since I also have heart trouble, there is some problems with treating my vitamin deficiency so I strongly advise you to speak about all your symptoms with a neurologist as well as your regular doctor.
I have the numbness in my toes, feet and a bit in the legs,as well as a lot of pain in my muscles as I walk anywhere...it is also apparently in my shoulders as if I use my arms much the shoulders and arms hurt as well. I would like to correspond with you if you have a little bit of time... Charlotte, an American living in Germany
Hello--I am sorry you are suffering from neuropathy and having a hard time finding solutions. I was diagnosed with neuropathy of my left leg (radiating all down the thigh, leg and foot) which made walking painful. When I was placed on Depakote ER (an antiseizure medication) for migraine headache prevention, the pain in my leg went away entirely. When I tried to reduce the dose of the depokote ER, my pain comes back. So I feel it is working for the neuropathy.
Another responder talked about a friend who had carpal tunnel syndrome which responded to vitamin B6. I also was diagnosed with carpal tunnel syndrome about 20 years ago and was headed for surgery. However, taking 100-200mgs vitamin B6 daily for several months solved the problem. I took it for 10 years and everytime I tried to go off the vitamin B6 the carpal tunnel pain returned. However, by year 15 I was able to stop the vitamin, and I no longer am battering my wrists by having to work on the computer for hours on end. My carpal tunnel pain is totally gone unless I overuse my wrists. I hope you get some relief soon.
My husband has the same problem due to cancer treatment, and for four years he has suffered with periphal neuropathy. A Physician's Assistant with diabetes told us about Alpha Lipoic Acid. It can be bought over the counter and is not expensive. He takes 300 mgs daily and this seems to be doing the job. I hope this helps somebody, he suffered for a long time before somebody gave us an obvious answer.
I am 88, weigh 144 lbs. and have had Type 2 diabetes for 45 years. Five years ago, I started having sharp pains in my right leg after I had walked about 300 steps. The pain would go away in 1-2 minutes and I could walk 300 steps again, etc. The doctor said my right leg primary artery was 100% blocked and my left leg primary artery was 70% blocked. He prescribed riding an exercycle for one-half hour daily and walking up to an hour daily. On my own, I do two sets of warm-up exercises daily and do several hundred exercises with my toes, both standing up-down and in bed at night daily. After many trials, I found that taking about one-third of a glass of water every time that I get up to urinate helps to eliminate any pains in my legs, feet and toes. I take an array of vitamins and some prescription drugs, but none specifically for neuropathy. Hospital stockings are not recommended..
I am 52yo male, diagnose with nondiabetic idipathic small nerve fiber PN though a biopsy. I have been, scanned, xray, pinched, poked, blood tested too many times to count. Thank god the biopsy game back with a positive results. I originally had pain and numbness in one foot, within 2 year it was in both feet. After that all heall broke lose. 1 yaer later I now have it both hands and feet, my face - along with incontrolablsweating and cold flasked as the same time.and strangest of all my tongue and penis. I've tried mega dosed of gababpentin, Lyrica - each gave me severe dry mouth and uncontrolable tremors in the legs and eyes - ohh and no relief of the pain, I;m now taking Mexetiline - no luck 3 weeks in. Effexor seems to help keep me on an even keel. But work has become almost impossible, I went to pain management 2 weeks aga and was put on 50 mg doses of Nuynta er 2x day. CAn only function on one dose on the evening. Thsis is some pretty stromg meds, But it helps just by lettig me forget about the pain for alittle way. As another fun little thing with this disease/symptom/malady/syndrome I;ve developed radial puritis, Sevee itching of the nerves in your arm It just befuddles as to how quickly this came on.
I have had PN for about 15 years. It came on slowly beginning with a numb spot between two of my toes on my left foot. It eventually was taking over my entire foot with a feeling of what I think cardboard glued to the bottoms of my foot would feel like. Later, my foot began to feel like it had been dipped in glue which was drying. And I had a very bad burning sensation. I, too, had all the tests that a neurologists does, and no cause could be found for it. By now, four years ago, it was beginning in my right foot following the same pattern that it did in the left one. My neurologist started me on 900 mg of gabapentin/day (300 mg three times a day). This worked well relieving the pain for several months, but slowly the pain increased. I was then prescribed Cymbalta. I took a 50 mg pill once daily for two days. It really eased the pain, but it a drug from hell. During those two days I hardly knew where I was or what I was doing; I was like a zombie. I had terrible brain warps (flashes, whatever you want to call them) that would almost knock me off my feet. It took me four days to recover from those two pills. So I went back to gabapentin this time at a higher dosage. I now take 2400 mg daily. ( three 800 mg pills/three times daily) I also take an oxycodone pill about two hours after each of the gabapentin. So far, this combination of gabapentin and oxycodone has been a life saver. It has not done away with all the pain, but I have very little trouble living with it. I am going to talk to my doctor about starting the alpha lypoic acid and vitamin B complex vitamins, but as long as the gabapentin and oxycodone are working I'm in rather good shape. At least I'm still mobile and able to walk. The numbness in the soles of my feet cause me to have a bit of a balance problem, but nothing I can't handle. He told me walking was the best therapy I could get, so I walk as much as I can every day.
Good luck. I hope you find a drug or drug combination that will help you.
I've found that taking Lyrica (on top of my usual dose of Suboxone) only triggers my Peripheral Neuropathy, not ease the uncomfortable feeling of my Neuropathy. I've found that in my case, walking it off is very helpful as well as chilling off of the medications.
I was told for years I had fibro and IC in the bladder, now I realized it was the many amounts of cipro that harmed me.. I took last year 40 pills of levaquin in a year period.. It is a chemotype antibiotic and you can have delayed reactions.. It damaged some tendons first and I did not connect it and took more.. The last script blew out my snf and I am covered in head to toe with severe hornet type stinging. lost 40 pds of muscle mass, in a short time. My nerve test shows nerve is intact but rare axonal swelling. I have done a year like this. When I walk it is like I am being electrocuted with zaps, severe neuropathic type chills.. There are two black box warnings on this drug the last being aug 15 2013 saying it can cause neuropathy.. I am just devastated as there is nothing anyone can do. I cannot tolerate any meds now that I could take before. This genetically alters the dna and causes cellular death.. Look at facebook wall of pain to see the thousands destroyed.. I am very severe and am not improving at all in the nerve area. How I am expected to survive with this over my entire body including eyes (which I lost one due to this) mouth, it is everywhere 247. If you have idiopathic neuropathy you might want to see if you took cipro, avelox or levaquin in the past.. I do not know what I am going to do as I cannot live with this over my entire body with the not knowing if they will get worse as I cant make it through more..firstname.lastname@example.org
I am aged 83, Australian and suffer with ideopathic peripheral neuropathy for about ten years now. I have had two laminectomies on my spine with risolesis. These surgeries fixed sciatica down one leg and latterly, bursitis in a hip, but did nothing for the neuropathy. I persist with vitamin b12 in a methyl form from the US. I keep up gym attendance and massage with a lovely young chiropractor. Both these help, but my biggest aid is my wife of nearly fifty years. Anxiety of falling is a constant thought and to avoid that I need good light and hand rails everywhere. If I were rich and living in the US I think I would visit the clinic near SanDiego, which administers embryonic stem cells. I think this is the future. The thing is to keep up as much muscle mass as possible and not give up on the physical activity, avoid alcohol and sugary things and eat a lot less to compensate for the lower activity, but keep up all the vitamins that the body does not produce well as one ages, especially Vitamin D3 and E.
Perhaps the cause is Immunoglobulin M. Either a specific blood screening test for this or a bone marrow test to determine whether this factor is above the normal range limits (40 - 230) could lead to a different diagnostic approach.
Folks, check to see if you had taken any antibiotics before developing neuropathy. There are a lot of law suits about this.
I had poly peripheral neuropathy for 7-8 years. Started with a burning in my feet. Now I have muscle loss in one calf area and loss of leg hair on both legs from the calf down. Initially one neurologist diagnosed me with auto-immune neuropathy. He prescribed infusions of Solumedro once a month for 6 months. This was a mixture of steroids and made me crazy. After treatments, he did another EMG and told me now my neurotic signals were coming from my lower eat vertebrae and that I should see a surgeon. So I had a laming tony and still have the neuropathy. Take Cymbalta for it, which does quite well for the pain. An acquaintance told me, tonight, that he , recently, had electro therapy treatments from a Podiatrist. He claimed that 6 treatments eliminated his pain completely. In this forum, I haven't seen electro therapy mentioned. So, it worth a try!
For years I had a few numb spots on the soles of my feet. In May I finally visited my GP just out of curiosity more than anything. He diagnosed PN and after many blood tests and an EMG that told him nothing, decided it's ideopathic. But in the meantime it's gotten ten times worse. It's the swiftness that it's gone downhill that's scary. I'm a far cry from a diabetic and reading these comments I know that yes, I did used to take Cipro for bladder infections. I knew decades ago they removed it (?) from the market (?) or put a black box warning on it. Now I have severe burning CONSTANTLY in both feet and have been taking all the B vitamins and alpha lipoic acid. It seems it's one step forward, two steps back. I just started on Neurontin a week ago and am upping the dose every 3 days to find the right one--no relief yet. Scary as hell. I resisted Gabapentin/Neurontin for years because it also causes anorgasmia--oh well!
Concerning help from the B vitamins.. Check out Benfotiamine for help with neuropathy.
what has helped my perifial neuropathy is alpha lipoid acid b6 200mg, thiamine ,magnesium with 1 to 2 ratio of calcium 200 mg calcium 500 mg magnesium
My neuropathy was caused by a delayed reaction to fuoroquinolone antibiotics. New research shows this is much more prevalent than once thought. None of the specialists I saw figured it out. I had to take another antibiotic again and have my symptoms recur/worsen before my doc connected the dots. If you had taken one of these nasty drugs, make sure to never take any in that class ever again. There are several ongoing class action suits. Acupuncture and Chinese medicine have helped me the most. Hope you figure it out!
My neuropathy developed from arsenic poisoning and then antibiotics given to me for whooping cough. Many people have metals/metalloids at high levels and western doctors can't see it/don't understand it. Find alternative medicine specialists to diagnose for high levels of metals and then go through chelation therapy.
The latest neuropathy pain releiver is scrambler by Calmare. It is deisgned to make the brain believe it is not pain that you are feeling. It was initially deisgned for chemo induced neuropathy but now is good for all kinds of peripheral neuropahies Calmare, the Scrambler. It is used at the Mayo Clinic and the Cleveland Clinic
my PN started about 18 years ago with pain in my feet and ankles and numbness, then stabbing pains and spasms in my legs (stopped me sleeping for days at a time) My GP had no idea what the problem was. Eventually I asked to be referred to a neurologist as I had an idea it was PN. The waiting list was so long I paid to go private for a diagnosis. Yes it was PN - only treatment I was offered was amitriptyline - that has helped with sleeping with the pain. No follow up etc. I dont have diabetes so it was called idiopathic. Over the last six years the symptoms have got so bad that I am really disabled - cant feel my feet, legs are either painful or numb. balance is really bad, and now I have some incontinence. Finally I have had a proper referral to a neurological consultant but really I just have to live with it. there dont seem to be any support etc apart from on the internet. It seems the people in the US seem to at least have doctors who take it seriously... There is so little here in the UK that you just feel abandoned to it - although those with diabetes have more support than those like me who have no discernable reason for having it.
I've tried everything for Peripheral Neuropathy on my hands and mostly feet from breast cancer treatment and radiation. What has worked for me is Doctor's Best Alpha-Lipoic Acid, 600 mg, 60 Veggie Caps. Two in the morning and 1 in the evening. Noticed a huge difference in 2 weeks. Not 100% but close. Give it a try. I read it on the website. Thanks
Did you get sick before it started and prescribed Cipro or any other Fluoroquinolone?
I have Ciprofloxacin Toxicity and have the severe neuropathy in my feet and spent 2 years in bed after getting a UTI and taking it for a week. It ruined my life. I can't really work anymore, I used to run every day and I am in a wheelchair sometimes.
Doctors know it's as strong as a low dose chemotherapy drug and is the antidote to Anthrax, but Bayer must be giving them some good kickbacks.
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