Living with Neuropathy - Welcome to the group

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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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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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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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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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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......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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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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Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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could I join your group?
I have Idiopathic progressive polyneuropathy so reading your stories sure gives me insight as to what to expect as time goes on.
Regards,
Jack Buchter

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