Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

For those of you living in and around the Minneapolis, Minnesota area, the Minnesota Neuropathy Association’s next meeting is on Saturday, March 25th and looks to be an interesting topic. I attached a meeting flyer and directions.

Medical Cannabis – what’s it all about?

Our speakers on March 25 are Dr. Gary Starr, one of the co-founders of the cannabis
manufacturer LeafLine Labs, and our Board member, Mary McLeod. Both will talk about
the use of cannabis in addressing neuropathic pain.

Mary has used it as a peripheral neuropathy patient, and will tell us of the process
involved in applying for the state cannabis registry, and her experience as a consumer.

Dr. Starr will address the origins of the medical cannabis industry in Minnesota, the
research involved in setting up their labs, and their reasons for going into this business.
He will also review the variety of pain and other medical problems with which they have
worked, the general results these trials have shown, their specific experiences with
neuropathic patients, and where they expect to go from here.

Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437

REPLY
@jjwest

Hi ALL,
I have been on a Chronic pain group and I ran across this one recently. I have had peripheral neuropathy for at least 12 years. At first it started with restless legs, then gradually started in my feet, burning, tingling then progressed to extreme burning,stabbing pain. my knees and my hands. I would cry and walk. Tylenol helped some, And just recently has progressed up to knees and hands. Finally went to an orthopedic pain Dr. He diagnosed me with peripheral neuropathy. I had an event that had me admitted to the hospital. During that visit a neurologist was checking me over and asked if I had taken gabapentin for the neuropothy. I was given a 300mg with a 50mg of tramadol, and had the best sleep I had had in years. so I started taking 300 mgs a day now I have progressed to 600mg 4 times a day, sometimes more, if I have to. That doesn’t happen as much as it used to. But I always take a 50mg of tramadol with the gabapentin. I have tried taking it without the tramadol, with tylenol, but the gabapentin does not seem to work as well without the tramadol.
I am told that I have that I have peripheral neuropathy because of cervical neck surgery, nerve damage to my upper spinal cord because of bone spurs. And I have severe spinal stenosis in my lower back.. I have tried to get cymbalta that was prescribed by my present pain Dr, but since I do not have drug insurance, I could not afford it….$360 for month supply. The neuropothy gets worse at night. Many nights I cannot sleep even when taking meds. Walking seems to help, something about the pressure that seems to help/ Many times I cannot walk because I cannot feel my feet, that is usually when I have waited too long before taking my meds. I use a rolling walker most all the time, it helps when I cannot feel my feet, and my balance is very iffy. I feel so very bad for those who are suffering with this. Hope any of this sharing helps.
PEACE & LOVE..JJ

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Wondering if anyone has the same issue that i have in regards to pain medication. No matter if it is the Gabapentin that I take for the neuropathy issue or any other kind of pain medication 4 muscle and back aches or even headaches such as extra strength Tylenol or Aleve xcetera, all seem to excite my neuropathy symptoms to another even higher level. Really irritates my feet no matter what type of pain medication I take for about 2 hours. My dr. Had never heard of it.

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Speaking of medical grade have you looked at any of the woundcare/pain material online on the Vasodilator Deoxyhemoglobin? The moa is medical Grade Carbon dioxide in a five minute transdermal spray…

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How about pain in my knee?

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@rabbit10

Thank you some days are good and some not so good so I take it a day at a time

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The burning and pain in my feet is with me every day

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@rabbit10

Keep us updated. Good luck

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I am interested in meds others have used. Doctors have prescribed all the meds for diabetic neuropathy, Lyrica, gabapentin, others not in my memory at the moment. Hydrocodone and more recently Butrans patch, and Nylanta. Acupuncture from two different therapists and also deep massage from a PT and use of many creams. Nothing has affected the burning/pain. Any suggestions for my doctors?

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@rabbit10

Keep us updated. Good luck

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I to have tried all that you have mentioned as well as tens devices etc. and have found no real relief. Lots of snake oil salesman out there with magic creams, pills etc but I have yet to find any relief from the burning and glass/sand in your shoes sensations related to the affliction. Really destroys quality of life for sure and doesn’t appear to be Any miracles in sight!

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@rabbit10

Keep us updated. Good luck

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It has been suggested that I try cannabis but I have not been able to find a doctor that will sign for me. However, doctors say I have intractable pain and thus would qualify under state law however the problem is to find a doctor that is working with patients with such problems. Any suggestions appreciated.

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@rabbit10

Keep us updated. Good luck

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Hello @fonda, in Minnesota there is a state registry that you have to be listed in before you can get treatment using medical cannabis. I’m sure each state has their own rules/regulations. Here’s the link for Minnesota:
http://www.health.state.mn.us/topics/cannabis/index.html
I went to a Minnesota Neuropathy Association meeting last week and we had a guest speaker Dr. Gary Starr from LeafLine Labs (https://leaflinelabs.com/). He went through the process of how a person gets on the registry and becomes a patient. He also gave us the history of cannabis and how it works on the body to explain some of the common misunderstandings.

Can you share what state you live in? Maybe others who have tried it can share their story.

John

REPLY
@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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One of my biggest frustrations is the fact that the main stream medical community seems to have little interest in working on treatments, remedies, cause and affect, cures etc. In my quest the last five years I have only had minimal interest shown by the so called specialists, I.E. Neurologists, major medical centers etc. in helping me with my issues. My local GP put in more effort than the neurologist that I was referred to and one major nationally renowned hospital even declined to even see me or review my case. If you have neuropathy everyone pretty much writes you off as a lost cause and you are told so in so many words. Sorry but nerve issues are really hard to treat, would rather concentrate on the illnesses, surgery etc. that we know we can be successful, makes for better PR. Easy to become disgruntled and depressed.

REPLY
@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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Amen to that Tim…one of my biggest frustrations also and why I started being my own advocate. I don’t have the pain you have with my small fiber peripheral neuropathy but the numbness was getting worse until last year when I started taking a specific group of high quality (and over the counter) supplements. I started in September last year and the numbness was just below the knees. After a couple of months it was just above the ankles. I haven’t made any more progress with the numbness but at least it’s not getting worse so it is working to repair the nerves. It may not work for everyone but I had tried everything else and neither my primary care doc or the neurologist had anything that works for numbness. The problem with what they prescribe for pain – lyrica, gabapentin, etc.. can be worse than the neuropathy with their side effects and almost continual need to keep upping the dosage. Others in the same group have been on those pain drugs and have been able to taper off once they are on the full supplement protocol. I can only attest to the help I have received and that I too am a skeptic so very wary of scams. Whatever you do, don’t give up hope. Keep doing your own research and working with your doctor to hopefully find something that helps with the pain.

REPLY
@johnbishop

Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.

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One of the most frustrating areas in my treatment is the fact the NOBODY that I have seen in my treatment has done a thorough foot inspection, I E bone structure, scans, x-rays to see if there is anything structural that is adding to my pain issues. Other than look at my feet for sores, wounds etc., that is it. Metatarsal issues or the like could be an issue but who would know? Also any secondary pain med I take for muscle, lower back pain etc. seems to only aggravate/intensity my neuropathy pain. Can’t win.

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