Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@ujeeniack

vit. B12 and maybe B6 is what U should try.

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I would recommend discussing with your primary care doctor before taking any B6. Even though it’s water soluble you can get too much in your system and get B6 toxicity which is bad news. I would want to have labs to make sure the B6 is the issue.

John

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@mfobrien36

Strangely enough, my leg cramps happen most often when I awaken in AM and do the in-bed stretch. This stretch seems to be a bit out of my control and while I can stop it, it seems to have a mind of its own — this is when the cramps hit on the outside of my ankle and in my feet. I can’t tolerate gabapentin but do take Vit B12 (oral supplement). Feet are most comfortable when cold (icy cold!). I notice when I don’t drink enough water, the cramps are more severe. I have the type of PN where my feet are hyper-sensitive – feel everything – even bathmat causes discomfort. I’ve had this level of discomfort since chemo 6 years ago. It never improved but did get more severe. I’ve kind of divorced myself from traditional testing as it seems painful with no indication that the tests will result in help… so I take my tylenol, keep my feet cold, and alternate between swearing and praying.

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i see no relationship between cramps and NP.

Cramps are muscle problems due to mineral depletion (Potassium,Magnesium and Calcium)from dehydration.
Dehydration can be caused by medications, including diuretics,excessive exercise and other factors.

They are likely to occur when sitting or lying down for hours in one position. That seems how I get my thigh cramps, from being in bed.

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@mfobrien36

Strangely enough, my leg cramps happen most often when I awaken in AM and do the in-bed stretch. This stretch seems to be a bit out of my control and while I can stop it, it seems to have a mind of its own — this is when the cramps hit on the outside of my ankle and in my feet. I can’t tolerate gabapentin but do take Vit B12 (oral supplement). Feet are most comfortable when cold (icy cold!). I notice when I don’t drink enough water, the cramps are more severe. I have the type of PN where my feet are hyper-sensitive – feel everything – even bathmat causes discomfort. I’ve had this level of discomfort since chemo 6 years ago. It never improved but did get more severe. I’ve kind of divorced myself from traditional testing as it seems painful with no indication that the tests will result in help… so I take my tylenol, keep my feet cold, and alternate between swearing and praying.

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You may not be able to see a relationship between cramps and NP but I know a lot of folks with NP (various/multiple diagnosis) that have leg cramping. There are lots of causes which can also explain why people with NP can get leg cramps.

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@johnbishop

Hello @ridgerunner, I think we may be two peas in a pod with slightly different diagnosis. I’m also 73 and have had the tingling, numb toes & feet for over 20 years but ignored until this past March when I went to a Mayo neurologist and was diagnosed with idiopathic small fiber neuropathy. The neurologist thought it may be genetic but my living relatives are too far away to run tests. There can be many causes for neuropathy including chemotherapy and some drugs. I believe lisonpril (blood pressure med) was the cause of my SFPN. I took it for over 5 years in my 40s until I participated in a Mayo heart study and the cause/diagnosis of my high blood pressure was changed and I was switched to spironolactone and hydrachlorathyazide. It could also have been caused by me being pre-diabetic but I’m not fully convinced.

If you do not have the pain that goes with neuropathy you are one of the 20% or so that only has the numbness/tingling and not the pain that goes with it. I did not start being proactive until last March which is when I had an EMG and several MRIs before meeting with the Mayo neurologist. At that time I was still looking for the magic bullet and trying to avoid all the scams out there for people with our condition. After my neurologist told me there are no medications or topical creams/oils that will get rid of numbness I started doing my own research. First I joined the Minnnesota Neuropathy Association where I started my search. They had some resources on the website for things that have worked for some people with the caveat not everyone will be helped with each of the treatments so you just have to keep looking until you find something that works for you. There is also quite a bit of information on the Foundation for Peripheral Neuropathy’s website. I have similar problems with balance and driving. There are some exercises that will help with your balance. I will see if I can find the link and post it.

After the neurologist told me there was no magic bullet for the numbness/tingling I decided to step up my search and found several closed Facebook groups on neuropathy. I had joined a couple of them before finding one that works for me because they offer a solution where the other groups were more for support and sharing stories/diagnosis. This group https://www.facebook.com/groups/SPNPD/ – Solutions for Peripheral Neuropathy Pain & Discomfort has put together a protocol of supplements that will help with repairing the nerves. It may not work for everyone but they have a very high number of success stories and over 3000 members in the group, all with different PN and multiple other diagnosis. The group sells nothing and has recently obtained their 501c3 status which is a plus for me. I started taking the protocol in the first week in September 2016 and when I started the numbness/tingling was in both legs down through the toes starting just below the knees. It is now just above the ankles so even if it doesn’t total repair the nerves down through the toes I’m happy because it has reverse the progress of the disease. I also have polymyalgia rheumatica and it has been in remission for about 6 or 7 years but it came back this past August so I had to start taking prednisone for it. I’m currently trying to titrate off of the medication but it’s not going well so will just have to keep working on it.

I would recommend taking a look at the protocol and then discussing it with your neurologist or primary care physician.

Good luck and don’t give up, there is hope!

John

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Hello John Bishop LOL don’t poo poo the soap remedy – it works I use any type of soap, any brand works, I don;t know why but I am sure it is some ingredient that is common in all soaps. I take calcium, potassium and magnesium every day. I also use essential oils on my feet and ankles – 50% almond oil, 25% tree tea oil and 25% eucalyptus oil .

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For cramps, I’ve tried all the obvious remedies. I take magnesium, calcium supplements and eat a banana almost every day (not just for potassium, I really like bananas). I tried the soap remedy under the sheets not too long ago, and I found that my feet and legs “burned.” Maybe I’ll try it again using a different type of soap. I had a cramp last night in my right foot, hobbled to the fridge and took a swig of pickle juice, and then ate a pickle. The cramp went away and didn’t return. Weird. It seems to work only at the beginning of the cramp. Once a cramp has really set in, nothing works for me. I just have to wait it out and it often takes all night for my muscles to relax. Please keep sending any suggestions my way, no matter how silly they may seem. I may try medical marijuana and intend to bring it up with my PCP next week.

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@magg

For cramps, I’ve tried all the obvious remedies. I take magnesium, calcium supplements and eat a banana almost every day (not just for potassium, I really like bananas). I tried the soap remedy under the sheets not too long ago, and I found that my feet and legs “burned.” Maybe I’ll try it again using a different type of soap. I had a cramp last night in my right foot, hobbled to the fridge and took a swig of pickle juice, and then ate a pickle. The cramp went away and didn’t return. Weird. It seems to work only at the beginning of the cramp. Once a cramp has really set in, nothing works for me. I just have to wait it out and it often takes all night for my muscles to relax. Please keep sending any suggestions my way, no matter how silly they may seem. I may try medical marijuana and intend to bring it up with my PCP next week.

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The soap I’ve heard recommended is the Ivory soap which I think may be because it’s a white bar soap.

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If you live in and around the Minneapolis – St. Paul area or within reasonable driving distance, the Minnesota Neuropathy Association is holding a support group meeting. Saturday, Jan 21st 10 AM at St. Michael’s Lutheran Church, 9201 Normandale Blvd, Bloomington, Minnesota. More information on their website – http://www.neuropathy-mn.org/.

The meeting presents a good opportunity for people suffering from various forms of neuropathy to discuss and share information and hopefully find answers for themselves. P.S. – they also provide coffee and normally have cookies to go with it – some sugar free and some not so sugar free ☺

John

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@magg

For cramps, I’ve tried all the obvious remedies. I take magnesium, calcium supplements and eat a banana almost every day (not just for potassium, I really like bananas). I tried the soap remedy under the sheets not too long ago, and I found that my feet and legs “burned.” Maybe I’ll try it again using a different type of soap. I had a cramp last night in my right foot, hobbled to the fridge and took a swig of pickle juice, and then ate a pickle. The cramp went away and didn’t return. Weird. It seems to work only at the beginning of the cramp. Once a cramp has really set in, nothing works for me. I just have to wait it out and it often takes all night for my muscles to relax. Please keep sending any suggestions my way, no matter how silly they may seem. I may try medical marijuana and intend to bring it up with my PCP next week.

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You also might try tonic water (the kind you make gin & tonic with). I buy Schweps (sp?) and it has worked for me but not when the cramp has set in – then I resort to swearing & hopping. It has quinine (a tiny bit) and was originally used to ward off malaria by the British when they were in India and unused to the heat and mosquito problem. Anyway, it’s worth a try with or without gin.

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Had peripheral neuropathy in 2006. Visit to medical University, EMG not much help nor direction. Did use turmeric for two years and a prayer group per internet to Philippines, in two years, no more problems in that area. JIM>> rather use science based food medicine (phytochemicals), instead of NSAIDS.

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Hi all. Have been dealing with chronic pain associated with neuropathy for the past five years. Not diabetic and have been to the University of Iowa hospital for extensive blood work, nerve conduction studies etc. and have never been able to locate a cause. Idiopathic neuropathy is what I’m told. Have tried every cream, lotion, tens device and prescription pain med. for the burning and crushed glass feeling in my toes and balls of my feet with little positive result. Any miracles out there that I have not heard of or tried? Went from running 25 miles a week for 20 years to barely able to walk a few blocks now, very frustrating. The golden years are not so much. I’m 66 years old and would like to be able to enjoy my grandkids and retirement. Thanks in advance!

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Hello @timmckinney, welcome to Connect. Thank you for taking a few minutes to share your frustrations you are experiencing with peripheral neuropathy. I moved your discussion post from the Chronic Pain group and combined it with a discussion called “anyone here dealing with peripheral neuropathy?” in the Brain & Nervous System group. If you are replying by email, I suggest you click on the VIEW & REPLY at the bottom of the email so that you are brought to the full-length discussion that you can read through for some answers to your questions.

In this discussion, you will meet members like @johnbishop, @jczarkowski1270, @mfobrien36, and many others who have discussed living with peripheral neuropathy and various remedies to help ease the symptoms.

@timmckinney, have you discussed with your diagnosing physician that the prescribed remedies have not had much success for you?

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Yes, have tried many different approaches and shared with my doctor.

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@timmckinney

Hi all. Have been dealing with chronic pain associated with neuropathy for the past five years. Not diabetic and have been to the University of Iowa hospital for extensive blood work, nerve conduction studies etc. and have never been able to locate a cause. Idiopathic neuropathy is what I’m told. Have tried every cream, lotion, tens device and prescription pain med. for the burning and crushed glass feeling in my toes and balls of my feet with little positive result. Any miracles out there that I have not heard of or tried? Went from running 25 miles a week for 20 years to barely able to walk a few blocks now, very frustrating. The golden years are not so much. I’m 66 years old and would like to be able to enjoy my grandkids and retirement. Thanks in advance!

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Hi Tim (@timmckinney). Welcome to Connect. I can share my story and maybe offer some hope. I also have idiopathic neuropathy but do not have the burning pain, etc. Mine has just been the numbness that started in the toes of both feet and progressively worked up to just below my knees this past year. I’ve dealt with it for 20+ years because when I first discussed symptoms with my doctor he said I had nerve damage but I would need tests to confirm. When I asked what could be done if it was determined there was nerve damage he told me nothing so I stopped asking and didn’t get the test. I got a little more proactive last year and in March had 2 MRIs and an EMG – the gateway for me to meet with a Mayo neurologist. He confirmed idiopathic small fiber neuropathy for the diagnosis along with the standard there are no creams, lotions, etc. that will make the numbness go away (dead/damaged nerves?). He also mentioned that it would get progressively worse and to let him know if it did. That was March 2016.

That started my search and along the way, I like you tried pretty much everything that I thought would help. Some offered a little relief, others were out of my price range (not covered by insurance), and others I felt were pretty much a scam taking advantage of people in pain – and there are a lot of those out there (Mayo Connect avoiding scams – http://mayocl.in/2gcdDNt). I ran across a book that is written by Dr. Terry Wahls who has MS started me on my journey of possible diet and nutrition changes that I can make to help my autoimmune disease and slow down progression. You may find it interesting also – http://terrywahls.com/about/about-terry-wahls/.

I joined the closest neuropathy support group looking for answers that might help (before I found Mayo Connect!). The closest group was the Minnesota Neuropathy Association which holds monthly meetings in the south Minneapolis area. This helped me realize how big the problem is with PN and gave me hope with so many people looking for the same answers. It also helped me realize that each of us are so different that what works for one may or may not work for another person.

Then in my Internet searches I found a few active Facebook closed groups for neuropathy. The first couple I joined were really just offering emotional support and not much else. Not saying that isn’t needed but it just wasn’t what I was looking for at the time. I did find something that works for me – a protocol of over the counter nutritional supplements that I started taking September 2016. When I started the numbness in both legs was just below the knees. This is subjective but it now feels like it is just above my ankles. So to me what I’m taking is repairing some of the nerve damage or at a minimum slowing down the progression so I’m happy with it. Others in the group with the burning pain have been able to titrate off of the pain medications which can sometimes have side effects worse than the pain. I discussed the supplements with my primary care doc and she passed them on to the Mayo pharmacist. His only concern was that the omega 3 dosages were too high…but that was quickly refuted by looking at Mayo Clinic research recommendations for omega 3 oils – http://mayocl.in/1pebH3A. The group has over 3600+ members and has recently obtained 501c3 status and are looking for ways to help people with PN who can afford the supplements.

I am not a medical professional. I made my choices on my best judgement knowing that neither my doctors nor my neurologist can offer anything to help me, I decided to try the protocol if it’s something that is not going to make it worse. What I do know for the pain part from listening and doing my own research is that all of the pain drugs do absolutely nothing to fix the problem. They all address or mask the problem which is causing the pain – damaged or dead nerves mis-firing and sending those nasty pain signals to the brain. If you want to do some research for yourself, you can join the closed Facebook group (https://m.facebook.com/groups/952340464830989) and then read their intro information to see if it’s something you would that like to investigate. You can use the search icon at the top of the group page and search for the term #theprotocolworks which will find all of the stories shared by members who have been helped by the protocol.

Keep asking questions and looking for answers – you are your best advocate!

John

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@JustinMcClanahan

Hello @timmckinney, welcome to Connect. Thank you for taking a few minutes to share your frustrations you are experiencing with peripheral neuropathy. I moved your discussion post from the Chronic Pain group and combined it with a discussion called “anyone here dealing with peripheral neuropathy?” in the Brain & Nervous System group. If you are replying by email, I suggest you click on the VIEW & REPLY at the bottom of the email so that you are brought to the full-length discussion that you can read through for some answers to your questions.

In this discussion, you will meet members like @johnbishop, @jczarkowski1270, @mfobrien36, and many others who have discussed living with peripheral neuropathy and various remedies to help ease the symptoms.

@timmckinney, have you discussed with your diagnosing physician that the prescribed remedies have not had much success for you?

Jump to this post

5000 mg b-12 under the tongue every day did wonders for me

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as i stated last month, ask your neurologist about Lyrica abd Gabapentin.

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