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?

@artscaping

For John Bishop @johnbishop and others with dry eyes from PN or other forms of neuropathy, please take care of your eyes. On Thursday, it was discovered by my opthomologist that I am now losing cells in my right eye. So we are attacking that issue with a new medication, Xiidra. It helps retain moisture better than Restasis. It too should be kept in the refrigerator. I will also have to increase the wet hot compresses. The battle has begun in earnest. And I will do everything I can to win.

Jump to this post

According to my ophthamologist, these tiny nerves run all over our eyes. They are supposed to have enough density to hydrate the surface cells on our eyes. When they don’t, the cells cannot survive. I have been fighting this for years as my neuropathy has become more severe. The burning pain is pretty constant at this point. Everyone experiences neuropathy differently. As my pain release massage therapist says, “fascia and tiny fibers have unique voices in everyone.”

REPLY

I have Diabetes 2, I have been told by my Dr. that I am developing neuropaty in my arms. what can be done to prevent this and help with the pain?

REPLY
@bugs

I have Diabetes 2, I have been told by my Dr. that I am developing neuropaty in my arms. what can be done to prevent this and help with the pain?

Jump to this post

Hello @bugs, welcome to Mayo Connect! We are glad you found us. Connect is a great place to share your health concern, ask questions of other Connect members who have similar health issues and learn what others are doing for treatment. Did your doctor do any tests for nerve damage to see if you have neuropathy?

Hopefully others with diabetic neuropathy will join the discussion and offer what has worked for them. While I do not have diabetes I do have peripheral neuropathy in both of my feet. I’m one of the few in numbers with neuropathy that only has numbness and tingling with no real pain. My doctor told me I fall into the prediabetes category although I don’t agree. Diabetes does run in my family though. You can read my neuropathy story and what works for me here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
One major thing that I think has helped me is a lifestyle change when it comes to my diet and eating. That’s not to say I don’t vary once in awhile but I really do try to make eating healthy a priority. A friend shared with me some great words of wisdom on diet:

Every time you eat or drink, You are either feeding disease or You are fighting it.
The choice is Yours….

Keep asking questions and learn as much as you can about your health concerns. Learning will help you be a better advocate for yourself and better know what questions to ask your doctor to help him/her help you.

John

Liked by jola65

REPLY
@bugs

I have Diabetes 2, I have been told by my Dr. that I am developing neuropaty in my arms. what can be done to prevent this and help with the pain?

Jump to this post

Good morning @bugs, I think John will be quite helpful when he responds. Here are a couple of hints. You can have a skin biopsy now that will tell you how the density of your small fiber network is holding up. You can ask your physician to prescribe a compounded topical to use on your hands, wrists and arms. Depending on the strength needed there can be several components at different percentages: lidocaine, prilocaine, keptoprofen, amitryptyline … (LPKA) are the active ingredients in mine. You can discuss the efficacy of gabapentin or a similar nerve calming medication at this stage. I take it about an hour before bedtime so that the pain will be eased and falling asleep will be easier. Pain release therapy (PRT) from a qualified masseuse can also help. A good one can find the trigger points and release them. I haven’t tried acupuncture because I can’t imagine wanting more needles when my hands feel like they are being attacked by needles most of the time. Avoid inviting more tingling/needles pain by noticing what causes it to begin with and then not doing that anymore. My ultimate “soother” is MM….about 50 mg a day starting when I wake up and continuing at appropriate intervals during the day to keep the pain from “ramping up”. I just try to stay ahead of it. Hope these hints are helpful….I have been working on the right formula for more than 2 years now. I keep searching, coping, and contending. It is great to interact with others in this discussion group. Let us know how you are doing.

REPLY
@bugs

I have Diabetes 2, I have been told by my Dr. that I am developing neuropaty in my arms. what can be done to prevent this and help with the pain?

Jump to this post

@gailfaith here! Several years ago (about 10 or so) I noticed that in bed, the soles of my feet started to have a different sensation….no pain, nothing negative, but different …and if anything just more sensitive. I am considered pre diabetic, and my HbA1C done with home test kits the last day of every month, and once in a while at the hospital lab (yes, those numbers are very close if not identical)and range between 5.8 and 6.1. I have never told any of my doctors about the sensensations, but I have come to believe that it could be called a neuropathy! Even though no doctor knows about these sensations, including my geriatrician, he still tests my feet to determine if they are sensitive to touch….and of course they are. SInce I am not aware of it during the day, with or without shoes, I don’t want anyone to mess with them and possibly create a problem. In the beginning I had only one small site on only one foot, but now it is the forward part of both soles. I didn’t even tell anyone when I was at Mayo for my Dx of Myotonic Dystrophy type 2 in 2013 and last year for the parathyroidectomy! And what might be of interest is that I used to buy those home test kits as a local drug store and they were expensive that way, but still more reasonable than the hospital tests. I saw that you could mail order those kits in a quantity of 10 tests, but at first I figured that they were for a commercial lab where they could use them before they “expired”. However, I was told when I called to order them, to ask what the expiration date was and if it was less than 10 months, to ask for a discount. I have never had to do that. SInce I have been doing those HbA1c tests AND all the results are well within a “good and acceptable range”, I no longer test my blood sugars daily. Should they start to creep up, I would be more cautious with what i eat, and if necessary WELL before the numbers got out of hand I would consult with my endocrinologist, but I DO send him the monthly results by email and he responds, so he knows that I am “on top of the issue.” I used to work in a clinical lab, so I am acquainted with this kind of information. And no, he also knows nothing about the strange feet sensations! Maybe some day I will tell him, but not while it does not bother me AT ALL!!!!!!!.

REPLY
@bugs

I have Diabetes 2, I have been told by my Dr. that I am developing neuropaty in my arms. what can be done to prevent this and help with the pain?

Jump to this post

@bugs

If you read prior posts, you’ll see how others of us deal with neuropathic pain. I know too well how unbearable it can be. A spinal cord stimulator implant has reduced the pain in my feet by 80% or so, so when they are hurting now, I think about how bad it was pre-implant. I’m feeling the effects of neuropathy in my hands, so far only to the extent that I wear leather gloves when I drive to ease the achy discomfort from holding the steering wheel. Doctors tell me that my swallowing problems and urinary/ED issues are also likely to be related to neuropathy. I don’t know how many other parts of the body can be affected – that would be interesting to research. The first doctor my pcp referred me to was a neurologist, who diagnosed my idiopathic peripheral neuropathy, and began looking for an effective treatment. When the pain became really intense, I started seeing a pain specialist, who knew of other medication options, and eventually referred me to a surgeon who eventually, after a ridiculously long, slow process, did the implant, which addresses only the pain in my feet.

In my experience, and from the reading I’ve done, there are many, many medications that specifically treat neuropathy pain, and there are many others that treat it secondarily, and it can take a very long time of trial and error to find the one med or the combination of two or more meds that will work for you. I seem to be treatment resistant to all of them, as well as being treatment resistant for depression. MM (medical marijuana) has helped many people, but because I can’t afford anything not covered by Medicare, it’s not a viable option for me.

Jim

REPLY

Hi @bugs, thanks for the additional information. I currently experience the same “inconveniences and discomforts”. The swallowing issue has become more prominent. I do want to let folks know that eyes can also be affected because dryness, as in dry mouth, dry eyes, and other tissues is part of neuropathy, especially small fiber neuropathy. There are thousands of nerves in networks throughout the eye according to my ophthalmologist and when they don’t do what they are supposed to do…like hydrate the eye…then cells are lost and difficult to replace.

REPLY

I was diagnosed with neuropathy when I was diagnosed with spinal stenosis with myelopathy. I have had 11 spinal surgeries. My 3rd ACDF left me with a spinal cord injury after the graft fell out and crushed my spinal cord. I now have an incomplete permanent SCI from C5-C7. The neuropathy has worsened over time since then. I also went through treatment for breast cancer which caused an increase to my neuropathy symptoms. My neuropathy is in both feet, numbness, tingling, pain, feeling of walking on a wet floor, up through my legs with numbness and tingling. My hands and fingers are also neuropathic, same symptoms as feet. Neuropathy hit my left chest wall, shoulder blade, left arm after radiation treatment for breast cancer. Lots of numbness and tingling. After my SCI, I’ve had no ability to regulate my temperature which is complicated by my hot flashes from cancer treatment. I also have lots of memory issues and difficulty with recall. I’ve tried lots of supplements and so far nothing has worked. The last 2 neurosurgeons I have seen didn’t provide much hope for repair or recovery at this time. I’ve been in therapy for the cancer, we work on issues I have related to the spinal cord condition, too. So far, no success. I look forward to hearing from others who may have gone through the same thing, or something similar.

REPLY
@vickiekersch

I was diagnosed with neuropathy when I was diagnosed with spinal stenosis with myelopathy. I have had 11 spinal surgeries. My 3rd ACDF left me with a spinal cord injury after the graft fell out and crushed my spinal cord. I now have an incomplete permanent SCI from C5-C7. The neuropathy has worsened over time since then. I also went through treatment for breast cancer which caused an increase to my neuropathy symptoms. My neuropathy is in both feet, numbness, tingling, pain, feeling of walking on a wet floor, up through my legs with numbness and tingling. My hands and fingers are also neuropathic, same symptoms as feet. Neuropathy hit my left chest wall, shoulder blade, left arm after radiation treatment for breast cancer. Lots of numbness and tingling. After my SCI, I’ve had no ability to regulate my temperature which is complicated by my hot flashes from cancer treatment. I also have lots of memory issues and difficulty with recall. I’ve tried lots of supplements and so far nothing has worked. The last 2 neurosurgeons I have seen didn’t provide much hope for repair or recovery at this time. I’ve been in therapy for the cancer, we work on issues I have related to the spinal cord condition, too. So far, no success. I look forward to hearing from others who may have gone through the same thing, or something similar.

Jump to this post

Hello Vickie (@vickiekersch), I would like to welcome you to Mayo Connect. I can’t begin to imagine all the struggles you are going through but I am very glad that you searching for answers. Connect is a good place to start and it will help you find others with similar health concerns and learn what they are doing for treatments. While I also have peripheral neuropathy but my story is pretty tame compared to yours. I too have done a lot of searching and tried just about everything until I found something that works for me. When it comes to neuropathy “cures” one has to be careful and do their own research. You can read my peripheral neuropathy story here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
I am tagging a few other Connect members to see if they can provide any information that might be helpful to you. @predictable, @jimhd, @kathyv, @carol94, @briansr do you have any suggestions for Vickie?

John

REPLY
@vickiekersch

I was diagnosed with neuropathy when I was diagnosed with spinal stenosis with myelopathy. I have had 11 spinal surgeries. My 3rd ACDF left me with a spinal cord injury after the graft fell out and crushed my spinal cord. I now have an incomplete permanent SCI from C5-C7. The neuropathy has worsened over time since then. I also went through treatment for breast cancer which caused an increase to my neuropathy symptoms. My neuropathy is in both feet, numbness, tingling, pain, feeling of walking on a wet floor, up through my legs with numbness and tingling. My hands and fingers are also neuropathic, same symptoms as feet. Neuropathy hit my left chest wall, shoulder blade, left arm after radiation treatment for breast cancer. Lots of numbness and tingling. After my SCI, I’ve had no ability to regulate my temperature which is complicated by my hot flashes from cancer treatment. I also have lots of memory issues and difficulty with recall. I’ve tried lots of supplements and so far nothing has worked. The last 2 neurosurgeons I have seen didn’t provide much hope for repair or recovery at this time. I’ve been in therapy for the cancer, we work on issues I have related to the spinal cord condition, too. So far, no success. I look forward to hearing from others who may have gone through the same thing, or something similar.

Jump to this post

Hi, Vickie @vickiekersch

I have peripheral neuropathy, as well, though it’s not related to any other of my ailments. I had a spinal cord stimulator implant in May, and it has helped immensely, reducing the pain by around 80% as a rule. If I wear shoes that don’t cushion my feet enough, or if I walk or stand too long, my feet hurt a lot with burning pain. The numbness and tingling are still present. I’m having a bunch of tests done right now to see what type of neuropathy I have.

I’ve worn gloves when driving for quite awhile, because my hands ache from holding the steering wheel. I also have swallowing problems, which are probably related to the neuropathy, and urinary problems, as well. I don’t know what other parts of my body will be effected when all is said and done.

I’m constantly amazed by how many health issues and how much chronic pain people live with. Each of us has unique reasons for pushing ahead. I often feel guilty for complaining about the pain I have, when others keep going with far more.

I don’t think I added anything new to what you already know, but I wanted to let you know that I and many others are here to listen and support.

Jim

REPLY

My name is Delane Humphries, I have mild neuropathy in lower legs and feet. I am on nadolol. my legs jerk sometime and I also lose my balance at times. I am fearful it will get worse and am trying to ” prevent” that???

REPLY

Hello Delane @homdee3041, welcome to Mayo Connect. We are happy that you found us. Connect is a good place to ask questions, share your health concern and learn what others with similar health problems are doing for treatment. Are you able to share a little more about your neuropathy? Have you seen a neurologist and received a diagnosis?

John

John

REPLY
@johnbishop

Hello Delane @homdee3041, welcome to Mayo Connect. We are happy that you found us. Connect is a good place to ask questions, share your health concern and learn what others with similar health problems are doing for treatment. Are you able to share a little more about your neuropathy? Have you seen a neurologist and received a diagnosis?

John

John

Jump to this post

I agree with John and especially since you feel that your PN is mild (maybe it is still early enough for some kind of help from neurologists) My own feeling is that there are so many causes, so many levels of progression, so many areas of the body often affected, that the disease isn’t clearly defined. As such, I think the medical community has not come up with a definitive cause, cure or even diagnosis. I hope the doctors who deal with this nasty disease read the blogs sent in by us and are able to add to their field of knowledge as a result. We’ve tried everything from bars of soap between bed sheets to using cannabis – some things help but so far no miracle cure.

REPLY

For Connect members, families and friends in the Minneapolis area, the Minnesota Neuropathy Association is holding their next meeting this coming Saturday.

Saturday, September 23, 2017
MINNESOTA NEUROPATHY ASSOCIATION

Speaker: Dr Leland Scott:
10:00 am “Vitamins and Supplements” with time for Q and A
11:00 am “What Peripheral Neuropathy Is and What It’s Not” with time for Q and A
*Come at 9:30 for refreshments! – coffee, juice, fruit and pastries

Dr Leland Scott, neurologist, has been with the Minneapolis Clinic of Neurology since 2002, and works mostly from the Burnsville office. He did his undergraduate study at Stanford University in California, and his graduate study at Washington University in St Louis. His residency in neurology was at Johns Hopkins Hospital in Baltimore, Maryland. Over the years he has been involved with scientific publications, and was principal and co-investigator for several grants with various protocols.

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

John

Shared files

MNA flyer 9-2017 (MNA-flyer-9-2017.pdf)

REPLY
@homdee3041

My name is Delane Humphries, I have mild neuropathy in lower legs and feet. I am on nadolol. my legs jerk sometime and I also lose my balance at times. I am fearful it will get worse and am trying to ” prevent” that???

Jump to this post

Hi, Delane @homdee3041

It’s been more than 5 years ago since a neurologist diagnosed my idiopathic peripheral neuropathy. In case you don’t know, idiopathic means they have no idea what the cause of my pn was. At the time, I just had tingling in my feet and legs up to my knees. The burning pain started a couple of years later, and progressed to the point where I was in constant pain. I had a spinal cord stimulator implant in May, and it’s reduced the pain by around 80%. Standing on a hard surface for more than a few minutes, or walking any distance on hard surfaces will remind me how much it used to hurt all the time, and how far I’ve come.

PN seems to be different for everyone, and as far as I know, the treatment is pain management. For some people, it becomes disabling, for others, it’s limited to tingling and numbness, which is no fun in itself. A good neurologist will order tests.
I’ve started looking online at the reviews of the possible doctors. There are several websites.

I hope that your pn won’t get any worse than it is, and that you’ll find a great neurologist. (My favorite one retired.)

Jim

REPLY
Please login or register to post a reply.