1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

mayofeb2020 | @mayofeb2020 | Nov 29, 2020
In reply to @greeneyes55 "I have always had scoliosis, but later in life I was told the pain that I..." + (show)
@greeneyes55

I have always had scoliosis, but later in life I was told the pain that I was having was a ruptured disc in my L5. Had screws put in about 15 years ago. About 1 1/2 years ago that's when I had the neuropathy starting. Went to the Mayo Clinic in Scottsdale, Az. Had an Eng, xrays, ct, mri. They couldn't find anything wrong with me. I recently went to another neurologist having more xrays a s MRI's. They found I have arthritis forming in that area. And told me they could take the screws out of my spine which is not going to happen. Recently when I'm on my feet for a long period of time I get a burning sensation on the upper front leg. Once I sit a s stretch it goes away. Oh, also has physical therapy they made it worse. Thank you for letting me join.

Jump to this post

@greeneyes55. I have really bad back pain lately, stenosis plus degenerated discs are the problem. Few years back my orthopedic doctor says I will have some pain but I don't need surgery, but lately it had really bothered me, the pain goes down my legs. I'm afraid I'll need some kind of surgery to correct this, but after reading your post, I'm even more worried. I don't want NP on top of this. This morning I woke up with pain in my left leg and back so bad I felt nauseous, that's a first for me. All that sitting this year and not being active enough is the culprit, I'm sure.

REPLY
greeneyes55 | @greeneyes55 | Nov 29, 2020

I'm so sorry to hear you felt nauseous. Since I have always had some pain, I guess I'm just use to it. I am worried as I get older things are going to get worse. That is why now I'm searching for anything to help. As my husband says, doctors just "practice" medicine and I am now sure he is right. You go to all these doctors, one tells you one thing and another tells you something else. When I take all my paperwork from tests, xrays, etc to a new doctor, they just look at me and explain the importance of starting over. NOT!! I'm smart enough to understand now in our medical field that it's all a money issue, especially if you are on Medicare. Sorry to be such a downer, but I'm just so tired of this. So, I will continue my search. Good luck.

REPLY
greeneyes55 | @greeneyes55 | Nov 29, 2020
In reply to @avmcbellar "@greeneyes55 was the physical therapy outpatient? I only ask because you are very limited with physical..." + (show)
@avmcbellar

@greeneyes55 was the physical therapy outpatient? I only ask because you are very limited with physical therapy provided by home health care where the therapist comes to your home. Just like with acupuncture when you want to partake in physical therapy you must ask for a proper therapist to provide what you need and expect. Sorry to hear the physical therapy did not work out for you. Toni

Jump to this post

yes, the physical therapy was outpatient, but associated with the hospital where the surgery was done. I will continue my search!!

REPLY
sunnyflower | @sunnyflower | Nov 30, 2020
In reply to @greeneyes55 "The feeling I have is pins and needles. I've always had cold feet so I dont..." + (show)
@greeneyes55

The feeling I have is pins and needles. I've always had cold feet so I dont know if that would be part of it. All this due to a ruptured disc and surgery. If I would of known this I never would of had the surgery.

Jump to this post

Dear greeneyes55, I understand the pins and needles and the cold feet so well! Do your feet also feel wet? I have the same as you only they feel wet sometimes and so cold they feel hot. Just like getting liquid nitrogen at the doctor. I have to use heat on them b/c the cold makes them ache. I think some is my Raynaud's and some neuropathy. I'm so sorry you're going through this. It's a lot!!! Did the surgery help anything? I've had 3 back surgeries; the third a fusion. All three helped everything! I had the neuropathy pain in my feet before the surgery. I will keep you in my thoughts and prayers. Warmest wishes, Sunnyflower @faithwalker007 @bustrbrwn22

REPLY
sunnyflower | @sunnyflower | Nov 30, 2020
In reply to @bustrbrwn22 "Mine varies from a small drill drilling my feet, to having feet full of thick scabs..." + (show)
@bustrbrwn22

Mine varies from a small drill drilling my feet, to having feet full of thick scabs being broken open all the time (not literally) to the newest one, the jackhammer. I thought I would lose my mind.

Jump to this post

Jen, Oh my gracious! I think I lost mine just reading about how it feels for you. I am so sorry! That sounds brutal and a lot to endure!! Is it intermittent or there all the time? It amazes me how many of us have identical symptoms yet some even have more unusual ones too. Sometimes the souls of my feet are so numb it feels like I'm walking on a sponge! Take good care, Sunnyflower

REPLY
californialen | @californialen | Dec 1, 2020

I'm new here. Before I tell about my legs' life story let's just see if this posts successfully.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 1, 2020
In reply to @californialen "I'm new here. Before I tell about my legs' life story let's just see if this..." + (show)
@californialen

I'm new here. Before I tell about my legs' life story let's just see if this posts successfully.

Jump to this post

Good evening @californialen , welcome to Connect. Yes, your post has arrived.

You can tell your leg’s life story now. How did you find us? We are a positive and helpful group of folks who have been there. Our legs tell stories too.

We are not medically trained, and so cannot diagnose or prescribe. What we can do is share your story with folks who are experiencing similar medical issues.

See you in the morning.
Be safe and protected.
Chris

REPLY
californialen | @californialen | Dec 1, 2020

This is my first try at the discussion board.
I am an 88 year-old man in good physical and mental health except for my spine and legs. I exercise for 40 - 80 minutes each day, doing core stabilization and stretching exercises, riding a stationary exercise bike and walking when I am able. I'm active in my community.
I have severe lumbar spinal stenosis at several levels plus neuropathy in my feet and legs. My neurologist says there's nothing that can be done. Every spine doctor I see looks at my MRI and says there's nothing that can be done except surgery which is not a good idea at my age and of uncertain outcome. Physical therapists run me through a few tests and exercises and then say, "See me again if it get worse."
Well, I'm not happy because my feet and legs lose strength unpredictably. Aside from the fall risk, this keeps me from planning my life from day trips to overseas journeys. It's not a pain problem like many here have. Its just that I can't rely on my legs. I was at a resort shortly before the COVID shutdown and got out of bed and needed a wheelchair to get to breakfast . . . all of a sudden. A few hours later I was walking normally.
I take 1200mg of Gabapentin and have no pain. I also take 30mg of Cymbalta that seems to cut down on the pins and needles and freezing of my feet. BTW, I would welcome comment from anyone who has tried Wellbutrin because the Cymbalta has some side effects that I don't like.
Anyway, I am impressed by all of the things that members of this group have tried, in many cases because their doctors have not come up with solutions. I have tried acupuncture, bought a foot vibrator, bought a small TENS machine, currently am trying to do without statins, have my weight under control (pre-Thanksgiving) but am more at peace with the COVID lockdown than I am with my body's physical limitations. Any thoughts?

REPLY
2 replies
Barry Sheales | @user_che214927 | Dec 1, 2020
In reply to @californialen "This is my first try at the discussion board. I am an 88 year-old man in..." + (show)
@californialen

This is my first try at the discussion board.
I am an 88 year-old man in good physical and mental health except for my spine and legs. I exercise for 40 - 80 minutes each day, doing core stabilization and stretching exercises, riding a stationary exercise bike and walking when I am able. I'm active in my community.
I have severe lumbar spinal stenosis at several levels plus neuropathy in my feet and legs. My neurologist says there's nothing that can be done. Every spine doctor I see looks at my MRI and says there's nothing that can be done except surgery which is not a good idea at my age and of uncertain outcome. Physical therapists run me through a few tests and exercises and then say, "See me again if it get worse."
Well, I'm not happy because my feet and legs lose strength unpredictably. Aside from the fall risk, this keeps me from planning my life from day trips to overseas journeys. It's not a pain problem like many here have. Its just that I can't rely on my legs. I was at a resort shortly before the COVID shutdown and got out of bed and needed a wheelchair to get to breakfast . . . all of a sudden. A few hours later I was walking normally.
I take 1200mg of Gabapentin and have no pain. I also take 30mg of Cymbalta that seems to cut down on the pins and needles and freezing of my feet. BTW, I would welcome comment from anyone who has tried Wellbutrin because the Cymbalta has some side effects that I don't like.
Anyway, I am impressed by all of the things that members of this group have tried, in many cases because their doctors have not come up with solutions. I have tried acupuncture, bought a foot vibrator, bought a small TENS machine, currently am trying to do without statins, have my weight under control (pre-Thanksgiving) but am more at peace with the COVID lockdown than I am with my body's physical limitations. Any thoughts?

Jump to this post

Hi from Australia. I turn 9o years in a couple of weeks and have a story similar to yours. I am on nil medication of any description. Up to a couple of years I was a HIITman in the gym . I have been diagnosed with Peripheral-neuropathy . I have many notes on file at this site. Read them and I'm sure that, you are like me , a man of action. I am now 3 months into the practice of Neuroplasticity. and am achieving results, small but definate. I expect to recover fully, within 18 months to 2 years.Best wishes, we can beat it!
REPLY
onamission | @onamission | Dec 1, 2020
In reply to @californialen "This is my first try at the discussion board. I am an 88 year-old man in..." + (show)
@californialen

This is my first try at the discussion board.
I am an 88 year-old man in good physical and mental health except for my spine and legs. I exercise for 40 - 80 minutes each day, doing core stabilization and stretching exercises, riding a stationary exercise bike and walking when I am able. I'm active in my community.
I have severe lumbar spinal stenosis at several levels plus neuropathy in my feet and legs. My neurologist says there's nothing that can be done. Every spine doctor I see looks at my MRI and says there's nothing that can be done except surgery which is not a good idea at my age and of uncertain outcome. Physical therapists run me through a few tests and exercises and then say, "See me again if it get worse."
Well, I'm not happy because my feet and legs lose strength unpredictably. Aside from the fall risk, this keeps me from planning my life from day trips to overseas journeys. It's not a pain problem like many here have. Its just that I can't rely on my legs. I was at a resort shortly before the COVID shutdown and got out of bed and needed a wheelchair to get to breakfast . . . all of a sudden. A few hours later I was walking normally.
I take 1200mg of Gabapentin and have no pain. I also take 30mg of Cymbalta that seems to cut down on the pins and needles and freezing of my feet. BTW, I would welcome comment from anyone who has tried Wellbutrin because the Cymbalta has some side effects that I don't like.
Anyway, I am impressed by all of the things that members of this group have tried, in many cases because their doctors have not come up with solutions. I have tried acupuncture, bought a foot vibrator, bought a small TENS machine, currently am trying to do without statins, have my weight under control (pre-Thanksgiving) but am more at peace with the COVID lockdown than I am with my body's physical limitations. Any thoughts?

Jump to this post

californialen, vitamin K2 may offer relief. Note at the end of the westonprice link it is stated K2MK4 is best derived from food not supplements. True because they are synthetic. Also, thiamine is worth researching. Sad fact it and vitamin D requires sufficient magnesium to make it bioactive. Look into boron...search on "nothing boring about boron"
https://www.westonaprice.org/health-topics/in-defense-of-vitamin-k2-mk-4-dr-prices-activator-x/
https://obgyn.mcw.edu/wp-content/uploads/Vitamin-K2-Froedert-Womens.pdf
https://originalhealthinstitute.com/natural-pain-management/spinal-stenosis-treatment-in-phoenix-az/
https://www.krispin.com/magnes.html

REPLY
View MoreView Less
Please sign in or register to post a reply.