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?

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

Profile picture for annie88 @annie88

Hi all, I have just joined the group and am looking forward to reading some of the info. A car hit me when I was crossing the street and put me in the hospital for a month. This was in 1999. It took me a year to get back on my feet. Neuropathy was present from the beginning. It continues to get worse and I get dizzy when I walk. Does anyone else have that problem ?? I now use a 4 wheel walker to get around. The doctor stopped my gabapentin because it didn't work. Anyone find anything to help the burning in the feet?? Hugs to all. Annie

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Gabapentin helps me a bit but duloxitine gave me much more relief from the pain. I still have numbness. I just started using LifeFlo magnesium lotion on my legs and feet. It is soothing but again no relief from numbness. It’s only two days so I’m hoping it will kick in to help more. In the beginning I had burning in my feet. Now it’s just pain. I try to soak them often in Epsom salts which again has magnesium in it. An old fashioned helper for pain. Hoping you find something to help you ease your pain. God bless.

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Profile picture for bonniethompson1234 @bonniethompson1234

Gabapentin helps me a bit but duloxitine gave me much more relief from the pain. I still have numbness. I just started using LifeFlo magnesium lotion on my legs and feet. It is soothing but again no relief from numbness. It’s only two days so I’m hoping it will kick in to help more. In the beginning I had burning in my feet. Now it’s just pain. I try to soak them often in Epsom salts which again has magnesium in it. An old fashioned helper for pain. Hoping you find something to help you ease your pain. God bless.

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Also I find I can’t walk well in certain shoes. Skechers and crocs give support in the right places and both help me.

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Profile picture for annie88 @annie88

Hi all, I have just joined the group and am looking forward to reading some of the info. A car hit me when I was crossing the street and put me in the hospital for a month. This was in 1999. It took me a year to get back on my feet. Neuropathy was present from the beginning. It continues to get worse and I get dizzy when I walk. Does anyone else have that problem ?? I now use a 4 wheel walker to get around. The doctor stopped my gabapentin because it didn't work. Anyone find anything to help the burning in the feet?? Hugs to all. Annie

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I wish I could say yes. But nothing works.

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I am really sorry to hear that. I did find some cream that is called Nerve Renew but it only last for two hours. At least it's something. I usually wake up about 3 or 4 times a night, sometimes I put more cream on but not often. I do take all kind of supplements but they do nothing. At otherwise I think I am keeping healthy. I'll be 88 tomorrow and my three children are taking me out to dinner. Thanks for your reply.

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Profile picture for Chris, Alumni Mentor @artscaping

Good evening @peggioh, thanks for responding. Let's see where we are in our sharing and where we may be able to go from here.

About those nightmares, are you being attacked or injured? Are you attacking someone yourself? Do they always start the same way? I haven't done any dream analysis in ages so I am not confident about the causes in the first place or the reasons that they exit. I was beaten by my husband at the time and ended up in the ER on several occasions. That may be why the nightmares took so long to leave me alone. Although I remember the issues, I have never had another dream.

So....let's uncover another option to consider and one I have been actively pursuing for 10 years. After being diagnosed with SFN, one of my nurse friends introduced me to Medical Cannabis. For example, I replaced the Nortriptyline with a tincture dosage composed of 2:1 CBD/THC. Taken about 45 minutes before bedtime, it helps me fall asleep and stay asleep until morning. No longer do my SFN symptoms keep me awake at night or wake me up early in the morning.

For daytime control of the numbness and pain, I use a 1:1 CBD/THC tincture. I also use either a 1:3 CBD/THC topical for acute discomfort on my hands, wrists, and sometimes feet or a 3:1 CBD/THC for the chronic daily situation with my hands in particular.

Have you tried any medical cannabis? Do you live where it is legally and readily available?

May you be free of suffering and the causes of suffering.
Chris

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Hello again Chris. I'd like to ask my doctor for a prescription, for medical canabis, but what do people ask for? Is it pill form? (you certainly don't smoke it, I'm sure!) Is the CBD/THC you take a prescription also, or is that separate that you buy yourself? Any good brand? I'm desperate for SLEEP!!!!!

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Profile picture for John, Volunteer Mentor @johnbishop

Hi Annie @annie88, Welcome to Connect. It must be difficult dealing with the pain and neuropathy since getting out of the hospital in 1999. Do the doctors think that being hit by the car damaged nerves in your neck and spine?

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No doctor has ever mentioned that to me. I guess I have given up on doctors. I now just use creams and over the counter supplement hoping something will help.

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Profile picture for peggioh @peggioh

Hello again Chris. I'd like to ask my doctor for a prescription, for medical canabis, but what do people ask for? Is it pill form? (you certainly don't smoke it, I'm sure!) Is the CBD/THC you take a prescription also, or is that separate that you buy yourself? Any good brand? I'm desperate for SLEEP!!!!!

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......and good day to you @peggioh. Unless you have a dispensary with a "cannabis" pharmacist you are pretty much on your own I think. There are physicians who will approve you for a medical cannabis card based on your symptoms of chronic pain and you can be referred to one of them.

Another way is to talk to a patient customer service person at one of the manufacturers. Or, as I did, receive advice from a nurse friend. These folks can help you know where to start and how to evaluate the results.

This link might be helpful: http://www.projectCBD.org. Just look for the section on dosing.

I use only two products: tinctures (in a bottle with a dropper in mgs) or topicals (in a heavy cream or balm that come in a jar). Edibles and beverages can be quite inconsistent and are really for recreational use. I want to be able to trust the products and know that the company complies with substantial production regulations.

You can start by adding a chosen CBD/THC tincture to a beverage like tea or coffee. Or you just place it on your tongue. Just remember the rule: "you can always have more, you can never have less. You just have to find out how many mg are helpful. You may use half a dropper of a 3:1 CBD/THC product and only a quarter of a dropper for a 1:3 CBD/THC product.

You can learn the basics by reading, You can learn what works for you by doing. Let me know how it goes.

Chris

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Profile picture for betty1952 @betty1952

I see that the cbd gummies with thc are being advertised in a newspaper ad here at a small WI town. It also covers MN so we don't know if it is only legal in MN or here as well. My kids have all warned me it is NOT legal here, while my older relatives say it has to be if it is in the newspaper. I ran it by my kids again and they said "don't do it, mom". I told my older relative that I'd have to hear it from a lawenforcement officer before I'd believe it. I'd love to not need non-natural pain relievers anymore. LOL.. kids still shaking their heads "NO" at me when I point to the ad.

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Good evening @betty1952. I just checked on WI for you. Cannabis products that contain an agent with a psychoactive effect are not legal in Wisconsin. In MN you can purchase them at an approved dispensary after you have received a written prescription from an approved physician attesting to your need as evidenced by a medical condition. You also must have a state-authored medical cannabis card.

There are several charts and websites that keep up to date on every state. Just look for "medical cannabis laws by state".

Have a lovely evening.
Chris

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Profile picture for Chris, Alumni Mentor @artscaping

......and good day to you @peggioh. Unless you have a dispensary with a "cannabis" pharmacist you are pretty much on your own I think. There are physicians who will approve you for a medical cannabis card based on your symptoms of chronic pain and you can be referred to one of them.

Another way is to talk to a patient customer service person at one of the manufacturers. Or, as I did, receive advice from a nurse friend. These folks can help you know where to start and how to evaluate the results.

This link might be helpful: http://www.projectCBD.org. Just look for the section on dosing.

I use only two products: tinctures (in a bottle with a dropper in mgs) or topicals (in a heavy cream or balm that come in a jar). Edibles and beverages can be quite inconsistent and are really for recreational use. I want to be able to trust the products and know that the company complies with substantial production regulations.

You can start by adding a chosen CBD/THC tincture to a beverage like tea or coffee. Or you just place it on your tongue. Just remember the rule: "you can always have more, you can never have less. You just have to find out how many mg are helpful. You may use half a dropper of a 3:1 CBD/THC product and only a quarter of a dropper for a 1:3 CBD/THC product.

You can learn the basics by reading, You can learn what works for you by doing. Let me know how it goes.

Chris

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This is invaluable information, Chris. Thank you!! I will start looking. Peggy

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Profile picture for annie88 @annie88

I am really sorry to hear that. I did find some cream that is called Nerve Renew but it only last for two hours. At least it's something. I usually wake up about 3 or 4 times a night, sometimes I put more cream on but not often. I do take all kind of supplements but they do nothing. At otherwise I think I am keeping healthy. I'll be 88 tomorrow and my three children are taking me out to dinner. Thanks for your reply.

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Has anyone tried Hyperbaric Oxygen Therapy for their PN?

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