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?

@lorirenee1

@rwinney Hi Rachel. I understand scared, completely. Chronic pain is like living in some kind of altered state. Chronic pain perplexes me, as I used to heal from things quite easily. I wonder how there is never any healing. I wonder how to live this way. I read how limited you are, and it is heart breaking. I haven't a clue what to even say, except that I hear you and I understand. I feel your vitality, your passion, your drive. I feel your heart. How could we be put on earth to suffer? On a practical note, I ordered conolidine, and it should be at my house in a week or so. I will post to everyone how it works. Just took CBD, and pain is better, but now so sleepy. As you know, I will be trying B12 shots, and shortly after, low dose naltrexone. I will post to everyone about those things, too. Pain is not for sissies. I like so much that we can share…….I am thinking of you…..what else can I say? Lori R.

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There is nothing more to say because what you said was perfect! Thank you so very much. I'm a tough cookie but sometimes I crumble a little…no shame in my game.
LDN is in my cabinet with a plan to begin once I'm finalized with CBD/THC dose. Hope your day is peaceful. Thanks again.
Rachel

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@wilcy

Am also on medical marijuana! Am still trying to find one for pain and not getting spaced out! Your correct, totally screws up social life! Can’t go anywhere! Can’t walk 50 feet!

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It sucks!

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I’m not the same person anymore but I’m trying not to loose me. It’s very hard. So hang in there just know you have a new normal which keeps changing and it’s OK.

Liked by rwinney

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@cocodab

I’m not the same person anymore but I’m trying not to loose me. It’s very hard. So hang in there just know you have a new normal which keeps changing and it’s OK.

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I'm not sure when or if I will ever accept the new me. I do appreciate your kind words and advice and respect your struggle as well.
Thank you.
Rachel

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@steeldove

@rwinney Wow, that's pretty pricey! You mention a license; is that to grow marijuana or just a card permitting you to purchase product? Do you mind telling me in what state you live?

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New York State medical marijuana card to purchase is $50. The prescribing certified Dr can charge up to $250 for the application and qualification process. I paid $250 total which is an annual fee for recertification.

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@cocodab

Unfortunate, I wanted to try but can’t give up what you know for unknown.
Thank you for sharing it clarifies much.

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Touche.

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@klro0001

@rwinney

Unfortunately, I don’t have any advice to offer. I just wanted to say that I’m so very sorry for what you’re going through physically and emotionally. Please know that I’m thinking of you and I’m so hopeful that you will find a pain management approach that is safe and beneficial for you. Sending lots of virtual hugs your way. 🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗

Kia

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Thanks so much and I don't ever want you to be able to give advice on this topic. I hope all goes well with your Dr visit and any testing you may have. I'll be waiting to hear how you make out. With appreciation for your support
Rachel

Liked by klro0001

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@rwinney

New York State medical marijuana card to purchase is $50. The prescribing certified Dr can charge up to $250 for the application and qualification process. I paid $250 total which is an annual fee for recertification.

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In Missouri, online application for a card is $25. My doctor just filled out his part of the application during my regular appointment. But I don't know if and when Missouri will actually get its act together and open stores.

Liked by steeldove

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@steeldove

In Missouri, online application for a card is $25. My doctor just filled out his part of the application during my regular appointment. But I don't know if and when Missouri will actually get its act together and open stores.

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My regular PCP isn't certified so he had to send me elsewhere. It would have been cheaper the way you did it otherwise. That was lucky for you! I would think soon with stores as it's such a hot commodity.

Liked by steeldove

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Is there anything new on the horizon that gives hope to relieving the pain of neuropathy in feet?

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@arlenejc

Is there anything new on the horizon that gives hope to relieving the pain of neuropathy in feet?

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Hello @arlenejc, Welcome to Connect. I think you ask a great question that a lot of us would love to know the answer. There are a few discussions that you might find helpful since a lot of us are searching for the answer to the question of relieving pain and symptoms of neuropathy.

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
> Groups > Neuropathy > Scientific research and scholarly papers on Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/scientific-research-and-scholarly-papers-on-small-fiber-neuropathy/
> Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

Have you found any treatments or therapy that has helped relieve some of the neuropathy pain in your feet?

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I was just diagnosed with neuropathy. I’m in a lot of pain with numbness, tingling etc. I know it’s due to my alcoholism and have stopped drinking. What can I do outside of prescribed meds to give me a little comfort with the aches, pains tingling, etc. Since this is so new to me, I’m looking for some facts before I deal with the emotional side of it.

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@dawn67

I was just diagnosed with neuropathy. I’m in a lot of pain with numbness, tingling etc. I know it’s due to my alcoholism and have stopped drinking. What can I do outside of prescribed meds to give me a little comfort with the aches, pains tingling, etc. Since this is so new to me, I’m looking for some facts before I deal with the emotional side of it.

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Hello. I'm very sorry to hear of your diagnosis and pain. Congratulations on stopping alcohol. Huge step! For now, while you learn more about medications and neuropathy, I suggest ice or heat for pain depending on type of pain and needs. Topical creams with cbd/thc, lidocaine cream or patches, Topricin Fibro/Neuropathy cream, PT for myofacial release, massage, gentle stretching, warm bath with epsom salts or essential oils, rest. Hope this helps. Everyone is different so you really will have to experiment to find what is best for you. Best of luck.
Rachel

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@dawn67

I was just diagnosed with neuropathy. I’m in a lot of pain with numbness, tingling etc. I know it’s due to my alcoholism and have stopped drinking. What can I do outside of prescribed meds to give me a little comfort with the aches, pains tingling, etc. Since this is so new to me, I’m looking for some facts before I deal with the emotional side of it.

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@dawn67

Can you tell us where you have pain and numbness and tingling? The most obvious signs of neuropathy are tingling up to my knees, burning pain in my feet and ankles, and numbness in my feet. My doctor checked my pain response, I found that I have reduced sensation in my fingertips and face. Are there other medical conditions you're dealing with? I think that most of us do.

If you read back through this discussion you'll find lots of ways people treat their symptoms.

I had been treated for depression, anxiety and PTSD and suicidal ideation for several years before neuropathy hit. I've found that there can certainly be a connection between physical and mental pain. That is, one affects the other.

Jim

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@jimhd

@dawn67

Can you tell us where you have pain and numbness and tingling? The most obvious signs of neuropathy are tingling up to my knees, burning pain in my feet and ankles, and numbness in my feet. My doctor checked my pain response, I found that I have reduced sensation in my fingertips and face. Are there other medical conditions you're dealing with? I think that most of us do.

If you read back through this discussion you'll find lots of ways people treat their symptoms.

I had been treated for depression, anxiety and PTSD and suicidal ideation for several years before neuropathy hit. I've found that there can certainly be a connection between physical and mental pain. That is, one affects the other.

Jim

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Bali Kratom will take care of your problems! Did mine! Its a plant supplement

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