Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Since I have auto immune problems, too, lost my hair about 10 years ago to Alopecia. The last year or so, my head itches so bad. Was to a dermatologist but so far anti-itch cream isnt working either. Has anyone had this problem?

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@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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I'm a new member of your group. I've thought a lot about trying to find others with a similar condition as mine so I don't make uninformed decisions. I am 67 now but at 18 years old I came down with Guillan Beret syndrome (sp?) so I believe my nerve system is compromised. I started getting prickly, burning, achy feelings in the feet 4 years ago that are somewhat tolerable during the day but hard to tolerate at night especially on the left foot where I had ankle surgery just prior to the diagnosis of chronic, ideopathic, peripheral neuropathy. The condition got so bad that I wasn't myself, had anxiety, depression which I've never experienced before so was told to start on gabapentin which helped a lot. Smaller doses became larger doses to keep the nerve pain at bay and get sleep. I tried to withdraw last year (by reducing by 300mgs/day per week) and came down to 600mgs/day from 3600 however the pain and loss of sleep had me bringing it back up again. I've been on gabapentin for about 4 years and am now at 2700mg/day.
My goal now is to try to withdraw from taking gabapentin entirely.
Question: Would it be better to withdraw more slowly – like by 100mgs/day and hold that for two weeks and tolerate the nerve pain and loss of sleep to get off the drug, or should I slow it down even more?
I fear the anxiety, depression, pain will be worse than the side affects of the drug, so thence the question.

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@daniellef

Hi, I am from London, UK. I was diagnosed with idiopathic small nerve fibre neuropathy two and a half years ago but have had the symptoms for at least 12 years and these have gradually worsened over time. My symptoms are mainly itching and burning on scalp, face and arms and prickling sensations on my legs, feet and arms. I have tried all the medications recommended for SFN as well as lidocaine infusions, botox injections into the scalp but nothing has worked to date. I am able to work part time and try to enjoy life as much as possible despite my symptoms. I have unsuccessfully been trying to find out if I can have intravenous immunoglobulin but have told that 1. there is a shortage of it in the UK and it is very very expensive and 2. there have been no clinical trials performed in the UK to date to prove that this treatment is effective for SFN. I am still looking into this as I am not giving up just yet! I was wondering if anyone out there has found immunoglobulin to be effective/helpful for idiopathic SFN.. Of course as in any treatments available for SFN they only mask the symptoms and do not cure the disorder. I am also going to investigate whether diet has an impact on neuropathic symptoms and I was wondering if anyone else has managed to find out what kinds of foods to avoid etc. I try and live a healthy lifestyle but there may be foods which I should avoid which may possibly help my symptoms? Any advice would be greatly appreciated! Regards Danielle

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Thank you.

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@barbarn

@spanning – after reading your post, I would definitely at least find another neurologist, SF SD is not that far (compared to anyplace else in the US) from Mayos in Rochester. John Bishop gave you a link to Mayos for appointments, I would certainly consider that!

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I am approved to go to Mayo just have to see when they can get me in.

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@spanning

I am approved to go to Mayo just have to see when they can get me in.

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I question the local neurologist that says my sensory poly neuropathy is caused by chemo. It has been almost 4years since my last chemo treatments. In my heart I think I have auto immune problems and chemo did not help but I don’t agree with it being primary cause. Curious to your chemo experiences?

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@johnmcmillan

I'm a new member of your group. I've thought a lot about trying to find others with a similar condition as mine so I don't make uninformed decisions. I am 67 now but at 18 years old I came down with Guillan Beret syndrome (sp?) so I believe my nerve system is compromised. I started getting prickly, burning, achy feelings in the feet 4 years ago that are somewhat tolerable during the day but hard to tolerate at night especially on the left foot where I had ankle surgery just prior to the diagnosis of chronic, ideopathic, peripheral neuropathy. The condition got so bad that I wasn't myself, had anxiety, depression which I've never experienced before so was told to start on gabapentin which helped a lot. Smaller doses became larger doses to keep the nerve pain at bay and get sleep. I tried to withdraw last year (by reducing by 300mgs/day per week) and came down to 600mgs/day from 3600 however the pain and loss of sleep had me bringing it back up again. I've been on gabapentin for about 4 years and am now at 2700mg/day.
My goal now is to try to withdraw from taking gabapentin entirely.
Question: Would it be better to withdraw more slowly – like by 100mgs/day and hold that for two weeks and tolerate the nerve pain and loss of sleep to get off the drug, or should I slow it down even more?
I fear the anxiety, depression, pain will be worse than the side affects of the drug, so thence the question.

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Hello @johnmcmillan, welcome to Connect. I have no medical training or background but I would recommend discussing tapering off of gabapentin with your doctor. You could end up with some pretty severe side effects. Here is some information that may be helpful.

Gabapentin Withdrawal
https://www.recovery.org/topics/gabapentin/

John

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Thank you.

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I appreciate all the information and experience they are willing to share. Thank you, Peggy

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Hi, since I have been dizzy since July 8th, at first, then Feelings turned to tingling and numbness through.out My whole body. My body feels like it is going to sleep. my dr said “ I have mild sensory poly neuropathy” she seemed to think that what I am feeling is really minor. However, it doesn’t feel minor to me. The neurologist sent me to Balance clinic. The first appointment she said my inner ear balance part does not work at all and my eyes are trying to compensate my balance. I couldn’t tell if she was bending my toes up or down I could only tell she was holding them. She said I was a severe fall risk. Today I went for my second appointment at Balance Clinic
For 1 1/2 hour I did some simple movements standing and. Moving my toes. Immediately after, , I felt like I needed to sleep,weak all over, my upper lip started feeling numb again and I was feeling numb all over, like my body was going to go to sleep, , but the extreme feeling of tiredness was something more than I had ever experienced before. No pain,thankfully. It is now about 5 hours later, I have been resting, couldn’t sleep , and I still feel the same way. Is this polyneuropathy.? Does it ever go away? I am really thankful I don’t have pain, i it this exhaustion is really something. For a little bit this weekend, I was hoping that all of this was just anxiety brought on by my son who was sent over seas in July, and thankfully he returned this weekend. But No such luck , these strange body feelings still remain.

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I've been told that my nervous system is dying, that there is nothing to reverse it, I have accepted it, even though it's 'not fair'. I just retired a few months ago and was planning to go to France to look up the little town that my father's family came from (Vance). Instead, I'm getting my affairs in order. There is relief in this too — at least I won't live so long that I run out of money. In this group, I have read posts from people who have been struggling with neuropathy for years – years! Mine is advancing so rapidly that I'm soon going run out of medicine. The politicians in the state I live in have declared that our medicines are 'controlled substances' and they are making it harder and harder for us to get it — they have even empowered pharmacy clerks to withhold our medicine from us if there is anything 'suspicious' (?) about it. Peggy

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@pfbacon

I've been told that my nervous system is dying, that there is nothing to reverse it, I have accepted it, even though it's 'not fair'. I just retired a few months ago and was planning to go to France to look up the little town that my father's family came from (Vance). Instead, I'm getting my affairs in order. There is relief in this too — at least I won't live so long that I run out of money. In this group, I have read posts from people who have been struggling with neuropathy for years – years! Mine is advancing so rapidly that I'm soon going run out of medicine. The politicians in the state I live in have declared that our medicines are 'controlled substances' and they are making it harder and harder for us to get it — they have even empowered pharmacy clerks to withhold our medicine from us if there is anything 'suspicious' (?) about it. Peggy

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Hi Peggy @pfbacon, I listened to an 80+ year old neurologist at a meeting a few years ago for the Minnesota Neuropathy Association and one of the things I found interesting was a statement he made – everyone gets neuropathy sooner or later if they live long enough. Some of us just happened to get it sooner and we learn to live with it. I was told the same thing when I was first diagnosed with idiopathic small fiber peripheral neuropathy – nothing we can do, just let us know when it gets worse. That's basically why I did some searching and found some over the counter supplements that help some with the numbness. They definitely do not cure the PN but they do seem to have slowed or stopped the progress so I'm good with that. I only have numbness so I don't have to deal with the pain that most others with neuropathy like yourself. Others in the closed Facebook group I belong to have found relief from pain and have been able to taper off of medications and only use the supplements. I don't know if it will work for you but if you don't have access to what has been helping you it might be worth trying. They have a website that provides the link to their Facebook group – http://solutions2pnpd.com/.

I may have shared my story with you earlier but if not here is a link to the post:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Wishing you peace and strength in your journey with neuropathy.

John

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@johnbishop

Hello @daniellef, welcome to Connect. I have small fiber PN with only numbness and tingling, no pain. There really is no cure that I'm aware of for neuropathy. There are treatments and life style changes you can make to help cope with and/or reduce the symptoms. It sounds like you are working on that and it's a great start. I started looking at dietary changes after reading The Wahl's Protocol and the story of the author Dr. Terry Wahl's who was able to get rid of her symptoms of MS and go from using a wheel chair to riding a bike. You can read her story here: https://terrywahls.com/about/about-terry-wahls/

I take a group of supplements – vitamins and minerals that I found in a closed Facebook group – The Solutions to Pain and Discomfort of Peripheral Neuropathy. It's all over the counter stuff and I asked my Mayo doctor about it and they passed it by a pharmacist who commented that he thought the Omega – 3's were a little high but didn't give any warnings. I know the group has over 7000 members and some are in the UK. The group is now a 501c3 not for profit organization and has their own website – http://solutions2pnpd.com/. You can read my story and how I found the group in an earlier post here on Connect at:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

John

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Hello John,

Many thanks for your message. I will look into the possibility of taking supplements as suggested by your good self. I have an appointment at the end of November with my neurologist here in London so will let you know how I get on. I was also wondering if you have ever heard medical cannabis helping with neuropathic symptoms. Cannabis for medicinal purposes has just been made legal here in the UK but I am not sure if it will be prescribed for neuropathy – no doubt it will have to go through clinical trials before it gets approval for certain disorders. Thank again for your help and support. Regards Danielle

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@daniellef

Hello John,

Many thanks for your message. I will look into the possibility of taking supplements as suggested by your good self. I have an appointment at the end of November with my neurologist here in London so will let you know how I get on. I was also wondering if you have ever heard medical cannabis helping with neuropathic symptoms. Cannabis for medicinal purposes has just been made legal here in the UK but I am not sure if it will be prescribed for neuropathy – no doubt it will have to go through clinical trials before it gets approval for certain disorders. Thank again for your help and support. Regards Danielle

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Hi Danielle @daniellef, since I don't have any pain associated with my neuropathy I have never thought about seeking help through using medical cannabis. I think it can help reduce pain symptoms but I have no personal experience and no medical background or training. I did see an interesting video on Mayo Clinic's Medical Professionals hub with Michael Bostwick, M.D., Mayo psychiatrist, called "Blurred Boundaries: The Therapeutics & Politics of Medicinal Marijuana." that may give you some insight.

Link to the video by Dr. Bostwick:
http://medprofvideos.mayoclinic.org/videos/blurred-boundaries-the-therapeutics-and-politics-of-medicinal-marijuana

John

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@johnbishop

Hi Danielle @daniellef, since I don't have any pain associated with my neuropathy I have never thought about seeking help through using medical cannabis. I think it can help reduce pain symptoms but I have no personal experience and no medical background or training. I did see an interesting video on Mayo Clinic's Medical Professionals hub with Michael Bostwick, M.D., Mayo psychiatrist, called "Blurred Boundaries: The Therapeutics & Politics of Medicinal Marijuana." that may give you some insight.

Link to the video by Dr. Bostwick:
http://medprofvideos.mayoclinic.org/videos/blurred-boundaries-the-therapeutics-and-politics-of-medicinal-marijuana

John

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i think that medical cannabis is worth a try. I tried it because I had read Of success for some. I was on it for three months and gastric side effects kicked in before any pain relief. In the state where I live you must be certified by a physician and then you are under the supervision of an experienced pharmacist. I was using three forms of the cannabis , starting with very low doses and gradually increasing. The program here requires close monitoring and i received that.

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@fonda

i think that medical cannabis is worth a try. I tried it because I had read Of success for some. I was on it for three months and gastric side effects kicked in before any pain relief. In the state where I live you must be certified by a physician and then you are under the supervision of an experienced pharmacist. I was using three forms of the cannabis , starting with very low doses and gradually increasing. The program here requires close monitoring and i received that.

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Hello @fonda . May i lnow if the drug helped you in the End and have seen Any improvement ? Thank you !

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