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?

@bruce2666

Hey John. Well there is no cure for PN. But the way I measure improvement with the laser treatments is the pain relief I receive and it is about 50% which is great for me. Bruce

Jump to this post

That is a great improvement. I was just wondering if the laser folks did any measurements. Pain would be the big measurement for me also if I had pain.

REPLY
@bruce2666

Hey John. Well there is no cure for PN. But the way I measure improvement with the laser treatments is the pain relief I receive and it is about 50% which is great for me. Bruce

Jump to this post

What type of laser treatment are you dis cussing?

REPLY

Your replies are so interesting … The descriptions of Neuropathy that I read before I joined this group suggested that it was just a complication of diabetes that felt like tingles and needle sticks — it's way more than that. I was already far beyond the 'needles and tingles' stage and experiencing acute pain; and I'm hypoglycemic, not diabetic, so I didn't know which end was up. I am learning from all of you that there are is a kaleidoscope of symptoms and remedies; most of us seem to be trying new things as we deal with the progression of our condition. It is helpful that we share information here. Peggy

REPLY
@pfbacon

Your replies are so interesting … The descriptions of Neuropathy that I read before I joined this group suggested that it was just a complication of diabetes that felt like tingles and needle sticks — it's way more than that. I was already far beyond the 'needles and tingles' stage and experiencing acute pain; and I'm hypoglycemic, not diabetic, so I didn't know which end was up. I am learning from all of you that there are is a kaleidoscope of symptoms and remedies; most of us seem to be trying new things as we deal with the progression of our condition. It is helpful that we share information here. Peggy

Jump to this post

Hi Peggy @pfbacon … you have the key! We all share and learn what helps others and may work for us. The more we can learn, the better chance we have of helping ourselves (and hopefully our doctors if we find something that works for us).

REPLY
@ospreysurf

What type of laser treatment are you dis cussing?

Jump to this post

I go to Dr Schwartz in Greenville SC for my laser treatment. You can read about it below at his website. I have gotten about 50% pain relief as long as I take the treatments. I have no numbness only pain.

What is Realief Therapy?

Realief Therapy utilizes a proprietary Class IV therapeutic laser. The laser delivers a specific frequency of light to create a photoelectric effect at the nerve membrane layer. This results in chemical, physiologic, mechanical and structural changes in nerve cell membranes and the surrounding tissue. This process results in a reduction in severity of peripheral neuropathy symptoms – meaning less pain

REPLY
@stlouismo

Hello Members, I had just asked the question about CBD oil. I actually got CBD in a pill form and small bottle form. It must be from hemp as I don't think the THC is legal in Missouri. My neuropathy is mostly in my toes shins and calfs of my legs. I have been told it will get worse with time. So far after one week the CBD doesn't seem to have much effect .The small bottles with the eye dropper, I was told to put it under my tongue. Should I be used on the skin of the pain area ? Thanks, Jerry

Jump to this post

Needs to be at least 1000mg cbd oil. Helped a little at night sleeping.

REPLY

Some research news from the Foundation for Peripheral Neuropathy of particular interest if you live in the Baltimore area since John Hopkins is where some clinic trials are in the works.

Global Study on anti-MAG IgM paraprotein-associateD peripheral neuropathy expanding in the US.
https://www.foundationforpn.org/2018/12/20/foundation-for-peripheral-neuropathy-supports-expansion-of-anti-mag-peripheral-neuropathy-research/

REPLY

Hi my dad has just been diagnosed with this. We are waiting on scan results for the underlying reason. He just has numbness in legs and hands and feels as he describes wobbly legs. I'm looking for any tips, what to expect any help appreciated.

REPLY

Hello @portsu, welcome to Mayo Clinic Connect. Thank you for being an advocate for your dad. I have idiopathic small fiber peripheral neuropathy mostly in both feet, ankles and lower legs. I don't have any associated pain. I have no medical training or background but I can tell you to learn as much as you can about the disease. There are many types of neuropathy and it affects everyone a little different. Most people with neuropathy have symptoms of pain, numbness, tingling, burning sensation and more. I'm one of the 20% or so that only has numbness and tingling with no pain.

Here are a few links that may help you understand a little more about neuropathy.

Peripheral Neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm

NIH PN Fact Sheet – http://bit.ly/2kIPey3
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Diagnosing PN – http://bit.ly/2lpduEN

Easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

— Peripheral Neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm
NIH PN Fact Sheet:
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Diagnosing PN:
http://bit.ly/2lpduEN

Does your dad have any pain associated with his neuropathy?

John

REPLY

I am a 74 yr old woman that underwent 2 lumbar surgeries in 2018. Most of L1-L-5 has been repaired with grafting, plates, screws and bolts. Shortly after my second back surgery, in April of this year, I developed dropped feet in both feet. The neuro-surgeon finds no fault with his surgery. I’ve been through months of physical therapy with no change. I have tremendous pain from waist down. Recently I had a nerve conduction test which showed severe peroneal neuropathy. I am now being doctored by a pain physician and have been waiting for an appointment for a 2nd opinion from Un of Mi. My feet have been molded for braces and they arrived last week. I find them to be very uncomfortable and am leary as to whether they may cause more damage than giving me the pain relief and stability that I had expected. I walk very poorly with the use of a walker. I started out on a simple journey of repairing a bad back and have ended up with a life of doom and gloom. Any help or knowledge that you could give me would be greatly appreciated. Thank you.

REPLY

Hello @cordy, welcome to Mayo Clinic Connect. I'm sure the back surgery outcome is not what you expected or hoped for from trying to repair a bad back and ending up with other severe health conditions. I have no experience that I can share but I'm tagging other members @jenniferhunter and @lioness to see if they may have any suggestions or information for you.

Are you on any medications for the new symptoms?

Liked by lioness

REPLY
@johnbishop

Hello @portsu, welcome to Mayo Clinic Connect. Thank you for being an advocate for your dad. I have idiopathic small fiber peripheral neuropathy mostly in both feet, ankles and lower legs. I don't have any associated pain. I have no medical training or background but I can tell you to learn as much as you can about the disease. There are many types of neuropathy and it affects everyone a little different. Most people with neuropathy have symptoms of pain, numbness, tingling, burning sensation and more. I'm one of the 20% or so that only has numbness and tingling with no pain.

Here are a few links that may help you understand a little more about neuropathy.

Peripheral Neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm

NIH PN Fact Sheet – http://bit.ly/2kIPey3
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Diagnosing PN – http://bit.ly/2lpduEN

Easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

— Peripheral Neuropathy
http://www.ninds.nih.gov/disorders/peripheralneuropathy/peripheralneuropathy.htm
NIH PN Fact Sheet:
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Diagnosing PN:
http://bit.ly/2lpduEN

Does your dad have any pain associated with his neuropathy?

John

Jump to this post

Thank you so much. No pain as yet just numbness. He had nerve tests yesterday .

REPLY
@cordy

I am a 74 yr old woman that underwent 2 lumbar surgeries in 2018. Most of L1-L-5 has been repaired with grafting, plates, screws and bolts. Shortly after my second back surgery, in April of this year, I developed dropped feet in both feet. The neuro-surgeon finds no fault with his surgery. I’ve been through months of physical therapy with no change. I have tremendous pain from waist down. Recently I had a nerve conduction test which showed severe peroneal neuropathy. I am now being doctored by a pain physician and have been waiting for an appointment for a 2nd opinion from Un of Mi. My feet have been molded for braces and they arrived last week. I find them to be very uncomfortable and am leary as to whether they may cause more damage than giving me the pain relief and stability that I had expected. I walk very poorly with the use of a walker. I started out on a simple journey of repairing a bad back and have ended up with a life of doom and gloom. Any help or knowledge that you could give me would be greatly appreciated. Thank you.

Jump to this post

@cordy I wanted to say hello, and that I'm sorry you have these troubles. My mom has a foot brace that she got after surgery to lengthen tendons in her feet and ankles so she could walk again. Her foot had twisted after a break from a fall, so that is how this all started for her. The brace hasn't been a problem, but she just doesn't like it, so she opted to just use a wheelchair. She has had blood clots in her leg because of being more sedentary, and now she takes Eloquis for that, but she is doing well. That's something to watch for. If you get one leg that gets bigger, call your doctor.

I am a spine surgery patient, and I had drop foot intermittently because of cervical stenosis. I also have a bulging disc in lumbar, but it was when my C spine was out of alignment due to muscle spasms when I had no space around the spinal cord that it happened to me. If my pelvis shifts out of its alignment, I can also get weakness and sciatic pain, but realigning in physical therapy helps. I had flexibility of the SI joints, and when they let my pelvis shift because of tight muscles, that caused leg pain. I do think you need another surgical opinion for sure and some new imaging like an MRI to determine if any hardware is displaced from your back surgery or if there are any dislocations or fractures. I have heard of other patients having a fracture in the spine happen after spine surgery. That would be a question to ask, and could only be answered by new imaging studies.

Having surgery creates internal scar tissue, and sometimes it is the scar tissue that causes problems. My physical therapist has treated my scar tissue with myofascial release. This is slow gentle stretching of the fascia layers until it releases. Cutting the fascia with surgery creates scar tissue in it like a knot. The fascia is that cobwebby stuff you have seen. It connects everything in your body. It also holds everything in the wrong alignment if it is too tight, and that can cause pain and nerve compression. I have that problem with thoracic outlet syndrome that causes nerve compression in my neck and shoulder. My physical therapy for that has been MFR work for a few years, but with an interruption of the spine issues and my surgery, but I continue with therapy. See myofascialrelease.com for information. There is also a list of trained therapists on the website. If you don't find any near you, you can call Therapy on the Rocks in Sedona, Az and ask for people who trained there. I have made great progress with this and it helps me move properly and with better alignment and body mechanics.

Have you tried water therapy or swimming? I used to teach a swim class for disabled adults and a woman who had MS could walk in the pool and she said it helped her a lot. That might be hard if you are in pain, but if you don't use muscles they can atrophy, and that also happens when the nerve supply to a muscle is compromised. The water will support your body weight. I lost about half the muscle in my arms and shoulders because of spinal cord compression, but it is coming back now slowly and I am 2 years past my surgery. One of the things my physical therapist did to block pain was use a Dolphin Neurostimulator on the nerve roots in my spine (neck). It sends an electric current and reacts to an area of inflammation which blocks the neurotransmitters for the pain signals. Nerve cells send electric signals in the space between them with these chemical neurotransmitters, and if you block that, you can reduce pain. I don't know if that helps severe pain, but it did help me when I was trying unsuccessfully to find a surgeon to help me. 5 refused over 2 years, so I came to Mayo and was so glad I did. The surgeon who operated on me at Mayo is a deformity expert and both neurosurgeon and orthopedic.

Sometimes, just believing something is possible can empower a patient to achieve a better outcome. I think it is a good sign that you can walk. Get as many opinions as you need. You will need to advocate for yourself. It seems now, doctors are not looking to fix this, but instead, help you cope with it. Surgeons don't want poor outcomes with their patients and poor ratings, and they might turn you down rather than risk that surgery could make you worse, and that is where you are now. That might make it hard to find a surgeon willing to help. That is a hard place to be. All 5 surgeons who saw me misunderstood my symptoms and couldn't connect it to my imaging. One even suggested I could have something like MS that was causing pain all over my body. He didn't listen when I explained how my pain could turn on and off with the direction I turned my head and I had a ruptured disc and bone spurs compressing the spinal cord, and I was changing the pressure and position of that against the spinal cord. I had tracked my symptoms on a map of the body and saw how they progressed over time as the bone spurs enlarged. I was able to find medical literature with cases like mine, and I knew surgery would help me and take away all my pain, which is what happened. If you can travel, you might want to consider Mayo for an opinion. They are known for helping patients that are refused elsewhere and taking difficult cases. You can always look into it just in case. I was always looking for the next surgeon or my "Plan B" just in case things didn't work out, and it was surgeon #6 who changed my life.

In January, the Sharing Mayo Clinic blog will have my story as a spine surgery patient, but I would like to share this story about my surgeon with you.
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/

REPLY
@cordy

I am a 74 yr old woman that underwent 2 lumbar surgeries in 2018. Most of L1-L-5 has been repaired with grafting, plates, screws and bolts. Shortly after my second back surgery, in April of this year, I developed dropped feet in both feet. The neuro-surgeon finds no fault with his surgery. I’ve been through months of physical therapy with no change. I have tremendous pain from waist down. Recently I had a nerve conduction test which showed severe peroneal neuropathy. I am now being doctored by a pain physician and have been waiting for an appointment for a 2nd opinion from Un of Mi. My feet have been molded for braces and they arrived last week. I find them to be very uncomfortable and am leary as to whether they may cause more damage than giving me the pain relief and stability that I had expected. I walk very poorly with the use of a walker. I started out on a simple journey of repairing a bad back and have ended up with a life of doom and gloom. Any help or knowledge that you could give me would be greatly appreciated. Thank you.

Jump to this post

@cordy Welcome and thank you John for asking me to chime in Cordy I have a fractured L2 refused surgery but I can move and the pain is doable with what helps me Ice is an anti inflammatory as well as Golden Milk as @fresh air talked about Back to my neuropathy it's not in my feet but in my thighs as the nerves that go into my legs are affected by my fracture so I have nerve pain and numbness at times .I do naturel stuff like I use a Tens unit on the outside of the body not internal as Jennifer explained I use heat after the ice as heat is bringing blood to the service 15 minutes each ice first .A friend had neuropathy in her feet she said the feet exercises help stretching them Dr had me on Gabapentin but it affected my mental state

REPLY
@lioness

@cordy Welcome and thank you John for asking me to chime in Cordy I have a fractured L2 refused surgery but I can move and the pain is doable with what helps me Ice is an anti inflammatory as well as Golden Milk as @fresh air talked about Back to my neuropathy it's not in my feet but in my thighs as the nerves that go into my legs are affected by my fracture so I have nerve pain and numbness at times .I do naturel stuff like I use a Tens unit on the outside of the body not internal as Jennifer explained I use heat after the ice as heat is bringing blood to the service 15 minutes each ice first .A friend had neuropathy in her feet she said the feet exercises help stretching them Dr had me on Gabapentin but it affected my mental state

Jump to this post

I am very curious about the gabapentin. I take it for crps and have a nerve stimulator which at the moment has failed to work. No problem however with gabapentin or other meds.

REPLY
Please login or register to post a reply.