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.

greeneyes55 | @greeneyes55 | Nov 29, 2020

In reply to @bustrbrwn22 "Hi greeneyes55. What does the neuropathy in your feet feel like?" + (show)

Pins and needles.

greeneyes55 | @greeneyes55 | Nov 29, 2020

In reply to @faithwalker007 "My husband describes it as take a flat board and slap it on the bottom of..." + (show)

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.

bustrbrwn22 | @bustrbrwn22 | Nov 29, 2020

In reply to @greeneyes55 "The feeling I have is pins and needles. I've always had cold feet so I dont..." + (show)

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.

bustrbrwn22 | @bustrbrwn22 | Nov 29, 2020

@faithwalker007 Yes, sometimes mine feels like your husband’s too!

avmcbellar | @avmcbellar | Nov 29, 2020

In reply to @greeneyes55 "I have neuropathy in my feet, only at night. Drs. have me on pregabalin 75 mg...." + (show)

Hi @greeneyes55 I also experience the pins and needles plus cold and hot. I tried the ALA (alpha-lipoic acid) supplement and did notice a slight decrease with the pins and needles plus the burning pain. The only problem for me was the burning in my esophagus and stomach from the acid. I experimented with the supplement. No matter what I did I still get the burning. I was miserable all day. It was not worth the small gains for me. A few weeks ago I stopped the supplement all together. It took a few days of healing but now I am free of the burning in my stomach and esophagus. I decided to stick with foods in getting ALA. I feel much better. For me exercise helps decrease the pins and needles feeling because it reduces pain. How does acupuncture and massage help you? Does it take the pain away tremendously? Thank you for sharing your experience. Toni

John, Volunteer Mentor | @johnbishop | Nov 29, 2020

In reply to @greeneyes55 "I have neuropathy in my feet, only at night. Drs. have me on pregabalin 75 mg...." + (show)

Hello @greeneyes55, I would like to add my welcome to Connect along with @bustrbrwn22 @faithwalker007 and other members. There are a few more discussions you may want to read to learn what others have shared helps them.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/

@greeneyes55 are you able to share a little more about your diagnosis and what tests were done?

greeneyes55 | @greeneyes55 | Nov 29, 2020

In reply to @avmcbellar "Hi @greeneyes55 I also experience the pins and needles plus cold and hot. I tried the..." + (show)

Well, I also have scoilois in my lower back. I also started taking natural supplements from doterra. That seems to help alot. The acupuncture hits the points where the nerves are angry and the massage also calms all down. If you go to an acupuncturist make sure they have the training.

greeneyes55 | @greeneyes55 | Nov 29, 2020

In reply to @johnbishop "Hello @greeneyes55, I would like to add my welcome to Connect along with @bustrbrwn22 @faithwalker007 and..." + (show)

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.

avmcbellar | @avmcbellar | 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 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

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 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.