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.

luann262 | @luann262 | Aug 20, 2021
In reply to @davehayward1 "You might try a vibrating foot board. It could afford relief while reading and watching TV." + (show)
@davehayward1

You might try a vibrating foot board. It could afford relief while reading and watching TV.

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Thanks @davehayward1 - where would I find one? It is always so hard to get comfortable while trying to relax. Nights can be tough!

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1 reply
luann262 | @luann262 | Aug 20, 2021
In reply to @jetsetter "I have neuropathy in my feet and legs from Sjogrens as well as degenerative disc disease..." + (show)
@jetsetter

I have neuropathy in my feet and legs from Sjogrens as well as degenerative disc disease which causes me to have neck and back pain. I use THC/CBD gummies to help with my pain. This is not medical cannabis, they are not prescribed as I live in a state that only very recently allowed medical cannabis and they haven't set anything up for that yet. I have purchased it at recreational stores in Michigan, Oregon, or Colorado. We used to drive to Colorado every summer to stock up, but now that Michigan has it, we get it there.

I'm not sure what doses they use in medical cannabis. I use 5mg at a time. When I have a bad night, I sometimes take a 5mg gummie in the middle of the night. helps me sleep.

That's a lot of Gabapentin you take! I take only 100 mg of Gabapentin 3x daily. I'm so sorry you have so much Pain! I hope you are close enough to a state that has recreational cannabis, a real help to be able to get it legally, even though in my home state it is still illegal. there are always a lot of older folks in the parking lot when we go. You drive up, call into the shop and give them your parking your spot number, a budtender comes to the car with a menu and you order what you want. You usually have to pay in cash.

Am I terrible to use marijuana, perhaps my rheumatologist would be shocked? It really helps with my pain.

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Thanks! I know! I think the amount of gabapentin is too much. And my symptoms seem to increase and then he prescribes more. It does help as if I skip a dose or take it late my feet start buzzing
I do have a medical marijuana card! So I do use it and it definitely helps. 5 mg is about right. I use those and flower/ vape occasionally. I live in Ct. - they just legalized recreational but I already am able to get it. Finding different strains help with sleep, pain. There needs to be more information out there about dosage.
Thanks👍🏼

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1 reply
jetsetter | @jetsetter | Aug 21, 2021
In reply to @luann262 "Thanks! I know! I think the amount of gabapentin is too much. And my symptoms seem..." + (show)
@luann262

Thanks! I know! I think the amount of gabapentin is too much. And my symptoms seem to increase and then he prescribes more. It does help as if I skip a dose or take it late my feet start buzzing
I do have a medical marijuana card! So I do use it and it definitely helps. 5 mg is about right. I use those and flower/ vape occasionally. I live in Ct. - they just legalized recreational but I already am able to get it. Finding different strains help with sleep, pain. There needs to be more information out there about dosage.
Thanks👍🏼

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I wish there was more info on usage of cannabis for pain. It really helps me, but it would be helpful if they started sharing some research results. I think until recently, it couldn't be used to research because it is still illegal federally. I'm sure someone is looking into it! I am sure there are probably side effects that we don't know about.

So what kind of doses and what form are you given when you go the medical cannabis route?

Maybe we will hear from some suffering people who have more info on using cannabis.

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2 replies
bustrbrwn22 | @bustrbrwn22 | Aug 21, 2021
In reply to @jetsetter "I wish there was more info on usage of cannabis for pain. It really helps me,..." + (show)
@jetsetter

I wish there was more info on usage of cannabis for pain. It really helps me, but it would be helpful if they started sharing some research results. I think until recently, it couldn't be used to research because it is still illegal federally. I'm sure someone is looking into it! I am sure there are probably side effects that we don't know about.

So what kind of doses and what form are you given when you go the medical cannabis route?

Maybe we will hear from some suffering people who have more info on using cannabis.

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You are lucky to have a choice. Cannabis is still illegal in Wisconsin.

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1 reply
kenc | @kenc | Aug 21, 2021
In reply to @luann262 "Do you mean psychiatrist ? No, I see a neurologist and a psychologist. Why do you..." + (show)
@luann262

Do you mean psychiatrist ? No, I see a neurologist and a psychologist. Why do you ask?

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Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.

PM&R physicians are medical doctors who have completed training in the specialty of Physical Medicine and Rehabilitation (PM&R), and may be subspecialty certified in Brain Injury Medicine, Hospice and Palliative Medicine, Neuromuscular Medicine, Pain Medicine, Pediatric Rehabilitation Medicine, Spinal Cord Injury Medicine, and/or Sports Medicine.

Specifically, PM&R physicians:

Treat patients of all ages
Focus treatment on function
Have a broad medical expertise that allows them to treat disabling conditions throughout a person’s lifetime
Diagnose and treat pain as a result of an injury, illness, or disabling condition
Determine and lead a treatment/prevention plan
Lead a team of medical professionals, which may include physical therapists, occupational therapists, and physician extenders to optimize patient care
Work with other physicians, which may include primary care physicians, neurologists, orthopedic surgeons, and many others.
Treat the whole person, not just the problem area

REPLY
kenc | @kenc | Aug 21, 2021

I posted this as reply. However, figured others might be interested in the services of PM&R/Physiatrists.
Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.

PM&R physicians are medical doctors who have completed training in the specialty of Physical Medicine and Rehabilitation (PM&R), and may be subspecialty certified in Brain Injury Medicine, Hospice and Palliative Medicine, Neuromuscular Medicine, Pain Medicine, Pediatric Rehabilitation Medicine, Spinal Cord Injury Medicine, and/or Sports Medicine.

Specifically, PM&R physicians:

Treat patients of all ages
Focus treatment on function
Have a broad medical expertise that allows them to treat disabling conditions throughout a person’s lifetime
Diagnose and treat pain as a result of an injury, illness, or disabling condition
Determine and lead a treatment/prevention plan
Lead a team of medical professionals, which may include physical therapists, occupational therapists, and physician extenders to optimize patient care
Work with other physicians, which may include primary care physicians, neurologists, orthopedic surgeons, and many others.
Treat the whole person, not just the problem area

REPLY
2 replies
bustrbrwn22 | @bustrbrwn22 | Aug 21, 2021
In reply to @kenc "I posted this as reply. However, figured others might be interested in the services of PM&R/Physiatrists...." + (show)
@kenc

I posted this as reply. However, figured others might be interested in the services of PM&R/Physiatrists.
Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.

PM&R physicians are medical doctors who have completed training in the specialty of Physical Medicine and Rehabilitation (PM&R), and may be subspecialty certified in Brain Injury Medicine, Hospice and Palliative Medicine, Neuromuscular Medicine, Pain Medicine, Pediatric Rehabilitation Medicine, Spinal Cord Injury Medicine, and/or Sports Medicine.

Specifically, PM&R physicians:

Treat patients of all ages
Focus treatment on function
Have a broad medical expertise that allows them to treat disabling conditions throughout a person’s lifetime
Diagnose and treat pain as a result of an injury, illness, or disabling condition
Determine and lead a treatment/prevention plan
Lead a team of medical professionals, which may include physical therapists, occupational therapists, and physician extenders to optimize patient care
Work with other physicians, which may include primary care physicians, neurologists, orthopedic surgeons, and many others.
Treat the whole person, not just the problem area

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This is very helpful, I always wondered (and must have been too lazy to look up) what their role was. Opening this up to everyone on the site, how have your experiences been with a physiatrist? Are they hard to find or are they scheduled so far out it's impossible to see them in a reasonable amount of time?

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1 reply
bustrbrwn22 | @bustrbrwn22 | Aug 21, 2021
In reply to @luann262 "Hi Cathy- I can't believe I reaad this! I have a toe on my left foot..." + (show)
@luann262

Hi Cathy-
I can't believe I reaad this! I have a toe on my left foot that starts to fire up in the afternoon and is like an ice pick stabbing pain. Up all night and nothing helps. Now this week I have 2 toes on my right foot doing it- I want to amputate them! FYI- I have had ideopathic bilateral neuropathy in both feet for about 10 years. I take 3300 mg gabapentin, cymbalta and klonopin ( 1 mg at night ) . Nothing helps with the toes. Luann

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@luann262 I am hoping 3300 mg is a typo and it's supposed to be 300 mg?

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1 reply
jetsetter | @jetsetter | Aug 21, 2021
In reply to @kenc "I posted this as reply. However, figured others might be interested in the services of PM&R/Physiatrists...." + (show)
@kenc

I posted this as reply. However, figured others might be interested in the services of PM&R/Physiatrists.
Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.

PM&R physicians are medical doctors who have completed training in the specialty of Physical Medicine and Rehabilitation (PM&R), and may be subspecialty certified in Brain Injury Medicine, Hospice and Palliative Medicine, Neuromuscular Medicine, Pain Medicine, Pediatric Rehabilitation Medicine, Spinal Cord Injury Medicine, and/or Sports Medicine.

Specifically, PM&R physicians:

Treat patients of all ages
Focus treatment on function
Have a broad medical expertise that allows them to treat disabling conditions throughout a person’s lifetime
Diagnose and treat pain as a result of an injury, illness, or disabling condition
Determine and lead a treatment/prevention plan
Lead a team of medical professionals, which may include physical therapists, occupational therapists, and physician extenders to optimize patient care
Work with other physicians, which may include primary care physicians, neurologists, orthopedic surgeons, and many others.
Treat the whole person, not just the problem area

Jump to this post

Thank you! I printed this out to use when I go for my appointment with my new physiatrist. They are also called pain management doctors. I have neck pain that has been ongoing since the end of May (join the club). I’m hoping he can help, but I’m going to PT first. PT worked for me when I had neck pain on my right side. I haven't had neck pain for almost 2 years. My rheumatologist told me the physiatrists use chiropractic, nerve blocks and shots. I’m glad I have now other things that might help.

REPLY
1 reply
kenc | @kenc | Aug 21, 2021
In reply to @jetsetter "Thank you! I printed this out to use when I go for my appointment with my..." + (show)
@jetsetter

Thank you! I printed this out to use when I go for my appointment with my new physiatrist. They are also called pain management doctors. I have neck pain that has been ongoing since the end of May (join the club). I’m hoping he can help, but I’m going to PT first. PT worked for me when I had neck pain on my right side. I haven't had neck pain for almost 2 years. My rheumatologist told me the physiatrists use chiropractic, nerve blocks and shots. I’m glad I have now other things that might help.

Jump to this post

You are welcome. Glad I could help.

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