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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.

Hank | @jesfactsmon | Sep 5, 2020
In reply to @bustrbrwn22 "@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and..." + (show)
@bustrbrwn22

@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and go by Bustrbrwn22. I have had worsening sciatica for the past 10 years and am now practically bedridden from pain. I am on my feet to go to the bathroom and very little else. I am prescribed a very minimal amount of hydrocodone probably because I have debilitated anxiety and massive depression which has only responded to benzos. Believe me I have tried every antidepressant, anti anxiety, and non-narcotic drug there is. It is a struggle to make through every day. Pain is at a 10 now at all times from right butt, right hamstring, outsides of both calves, and bottoms of both feet. I purchased the TENS unit Kedsum that someone recommended and I could at least wash some dishes today but the minute it turns off the pain is excruciating. Any advice or kindness is so appreciated.

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@bustrbrwn22 I think you are safe with your Connect name. I don't see any others come up after I type to the first "r" in yours.

You say "Any advice or kindness is so appreciated". I am not sure if I can give you any helpful advice but I will gladly extend to you as much kindness as I am capable of. I am SO VERY SORRY to hear of your terrible, awful and severe pain situation. My heart goes right out to you.

Please accept my deepest hope for some reprieve from your pain condition. NO ONE should be living with a pain level of 10. No one.

My very very best to you my friend. Hank

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1 reply
steeldove | @steeldove | Sep 5, 2020
In reply to @bustrbrwn22 "@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and..." + (show)
@bustrbrwn22

@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and go by Bustrbrwn22. I have had worsening sciatica for the past 10 years and am now practically bedridden from pain. I am on my feet to go to the bathroom and very little else. I am prescribed a very minimal amount of hydrocodone probably because I have debilitated anxiety and massive depression which has only responded to benzos. Believe me I have tried every antidepressant, anti anxiety, and non-narcotic drug there is. It is a struggle to make through every day. Pain is at a 10 now at all times from right butt, right hamstring, outsides of both calves, and bottoms of both feet. I purchased the TENS unit Kedsum that someone recommended and I could at least wash some dishes today but the minute it turns off the pain is excruciating. Any advice or kindness is so appreciated.

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@bustrbrwn22 I don't know where you live, but if it's at all possible, I suggest you get an appointment with Dr. Mathew Pingree in the Pain Medicine department at Mayo Clinic in Minnesota. His entire focus is on relieving your pain. Praying for you.

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bustrbrwn22 | @bustrbrwn22 | Sep 5, 2020

Thank you so much for the suggestion!

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bustrbrwn22 | @bustrbrwn22 | Sep 5, 2020

I can’t find my emails right. Do you have a phone # or email address that I might be able to reach him by? I am in Wisconsin so MN is closest for me.

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steeldove | @steeldove | Sep 5, 2020

@bustrbrwn22 The Appts number listed on his card is 507-266-9240. You can tell them that I suggested you see him. Marilyn Gilmore

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 5, 2020
In reply to @jesfactsmon "@bustrbrwn22 I think you are safe with your Connect name. I don't see any others come..." + (show)
@jesfactsmon

@bustrbrwn22 I think you are safe with your Connect name. I don't see any others come up after I type to the first "r" in yours.

You say "Any advice or kindness is so appreciated". I am not sure if I can give you any helpful advice but I will gladly extend to you as much kindness as I am capable of. I am SO VERY SORRY to hear of your terrible, awful and severe pain situation. My heart goes right out to you.

Please accept my deepest hope for some reprieve from your pain condition. NO ONE should be living with a pain level of 10. No one.

My very very best to you my friend. Hank

Jump to this post

I am actually weeping now as in these 10 years no one has ever acknowledged my pain let alone that it shouldn’t have to be. God bless you. I’m going to have a little cry. The people who have abused opioids have ruined it for those who really need it just to get up to get a drink or water or use the restroom.

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3 replies
bustrbrwn22 | @bustrbrwn22 | Sep 5, 2020
In reply to @steeldove "@bustrbrwn22 The Appts number listed on his card is 507-266-9240. You can tell them that I..." + (show)
@steeldove

@bustrbrwn22 The Appts number listed on his card is 507-266-9240. You can tell them that I suggested you see him. Marilyn Gilmore

Jump to this post

Thanks so much

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mayofeb2020 | @mayofeb2020 | Sep 5, 2020
In reply to @bustrbrwn22 "I am actually weeping now as in these 10 years no one has ever acknowledged my..." + (show)
@bustrbrwn22

I am actually weeping now as in these 10 years no one has ever acknowledged my pain let alone that it shouldn’t have to be. God bless you. I’m going to have a little cry. The people who have abused opioids have ruined it for those who really need it just to get up to get a drink or water or use the restroom.

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@bustrbrwn22. I'm so sorry you have been in pain for so long. I hope you get the help you need. Do you have friends you can call and talk? I have a good friend that i call and vent sometimes, it helps a little. We're here for you if you want to just talk about your day. Hope we can make you feel less alone. Take care.

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1 reply
sunnyflower | @sunnyflower | Sep 5, 2020
In reply to @bustrbrwn22 "I am actually weeping now as in these 10 years no one has ever acknowledged my..." + (show)
@bustrbrwn22

I am actually weeping now as in these 10 years no one has ever acknowledged my pain let alone that it shouldn’t have to be. God bless you. I’m going to have a little cry. The people who have abused opioids have ruined it for those who really need it just to get up to get a drink or water or use the restroom.

Jump to this post

Hello bustrbrwn22, I am behind on Connect and my memory is, well, let's just say is compromised so I can't recall whether or not I have responded to any of or read your posts. Please forgive.

But I wanted you to know that my heart goes out to you for your pain and all that you've been through.

I know exactly what you mean about the opiophobia out there now bc so many have abused opiates. And the stigma and judgment directed toward patients who have a legitimate need for them. They don't understand that opiates don't take pain away, only help one tolerate it and the average legit patients don't get high from them. There is some subtherapeutic treatment going on bc of opiophobia and it's wrong.

I hope you find the support, compassion and great info here that I have. I have been so blessed by the beautiful people here on Connect!

Many, many blessings, Sunnyflower 😊

REPLY
Hank | @jesfactsmon | Sep 6, 2020
In reply to @bustrbrwn22 "I am actually weeping now as in these 10 years no one has ever acknowledged my..." + (show)
@bustrbrwn22

I am actually weeping now as in these 10 years no one has ever acknowledged my pain let alone that it shouldn’t have to be. God bless you. I’m going to have a little cry. The people who have abused opioids have ruined it for those who really need it just to get up to get a drink or water or use the restroom.

Jump to this post

@bustrbrwn22
I know you are starting MFR and are looking in to kratom, and both sound good for you. Another suggestion would be medical marijuana, if you have not tried that yet. Not sure if it is legal where you are yet.

And with the pain level you are at, you should not be being denied opioids if you want them. I am sorry they are hassling you about getting them (if I remember correctly). What about morphine? Is that considered the same or different from other opioids, I am not sure.I just know another member, Jim @jimhd gets it from his doctor, and it is one of the only things that helps him. Maybe you could ask him about his experience with using that.

You really need someone to care about your pain level besides yourself. Do you have support from family, friends? I hope you are not alone in this.

My best, Hank

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