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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.

sunnyflower | @sunnyflower | Nov 15, 2020
In reply to @helennicola "bustrbrwn22, sorry but I forgot to address my reply to you about MFR and Sunny, I..." + (show)
@helennicola

bustrbrwn22, sorry but I forgot to address my reply to you about MFR and Sunny, I hope you didn’t catch this! 🙄😁 Helen

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No worries Helen. I have had MFR several times. Didn't work for me but I could have had more. Too expensive and she gave me a break!

Very nice, very skilled! Be well, Sunny

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sunnyflower | @sunnyflower | Nov 15, 2020
In reply to @lorirenee1 "@artscaping Well Chris, thanks so much for your kind words to me. I do really listen..." + (show)
@lorirenee1

@artscaping Well Chris, thanks so much for your kind words to me. I do really listen to people here, and sometimes, it overwhelms me. But I do try to really listen. As far as sulfa drugs, I doubt you or I should ever take them again. When I took them, my entire face was like one huge hive. Even the doctor got alarmed. So no, don't take them! I won't! LoriRenee1

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Wow Lori Renee! When the face swells, one must be sure the tongue does not swell. Face and lip swelling is usually a STAT 911 call; nothing to minimize! I'm sure it is but would definitely ask if your medical chart if flagged that you have a true sulfa allergy. Tell every medical provider that you see. There, I feel much better now!!! OY! Sunny. 😲😟🧐

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1 reply
helennicola | @helennicola | Nov 15, 2020

Sunny, my MFR therapist told me this type of therapy does not help neuropathy per se; works best for muscle, joint type pain, which is why I go but will stop also because of the cost and hopefully find some exercises to do at home. Helen

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sunnyflower | @sunnyflower | Nov 15, 2020

Hope it all works out for you Helen! Good idea. Warmest wishes, Sunny

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Faithwalker007 (Renee) | @faithwalker007 | Nov 15, 2020
In reply to @sunnyflower "Wow Lori Renee! When the face swells, one must be sure the tongue does not swell...." + (show)
@sunnyflower

Wow Lori Renee! When the face swells, one must be sure the tongue does not swell. Face and lip swelling is usually a STAT 911 call; nothing to minimize! I'm sure it is but would definitely ask if your medical chart if flagged that you have a true sulfa allergy. Tell every medical provider that you see. There, I feel much better now!!! OY! Sunny. 😲😟🧐

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I’m glad there’s no others. Wow.

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Mentor
Jim, Volunteer Mentor | @jimhd | Nov 16, 2020
In reply to @jessamyn "thank you very much sunnyflower. I go through stages , mostly I feel numb and my..." + (show)
@jessamyn

thank you very much sunnyflower. I go through stages , mostly I feel numb and my mom and I get in lost of fights because she doesn't feel like I understand how serious her condition is , like I should be MORE upset. but my mom has been sick since I was very young and I feel bad but both of us are kind of tired of it all. It affects my quality of life and well I just don't know if I should take it more seriously and act like it is an emergency because a lot of times my mom talks about not wanting to "go on" anymore and asks if I would forgive her if she did have to "Go" I don't have kids yet and I want my mom to live to be a grandma, but I also don't want her to live with this quality of life she has right now:/. How do you build your faith?

I have a spiritual program, but don't feel directly connected with my higher power very often. Thanks

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@jessamyn

What a heavy load you're carrying. I understand how your mother feels. When suffering lasts for a long time and completely takes over one's life, it erodes the will to live. Living turns into existing, and when we exist at that level long enough, hope disappears.

I've been at that place. I existed in a very deep depression for more than 5 years, and actually did make suicide attempts during that time. Over the course of those rough years, therapists and doctors and medications and my family and my faith were the lifeline that extracted me from the hole. And they continued to get me to a safe place where I wouldn't fall back in. I still struggle, more than 15 years from when I spiraled out of control.

Do take her thoughts about wanting to die seriously. Has she ever said what her plan was? If she's thinking about taking an overdose, you will need to keep medications locked up, and be diligent about making sure she takes them (to be sure she's not hoarding them).

Spirituality can be a powerful resource for you. Are there things that have helped you, such as meditation? If so, maybe you could tell me just what meditation means. There are many methods, some that are great and some that can be harmful. From all you've said, I can see that you understand the need for self care.

I have to stop writing now, but I promise you that I'll pray for you as you deal with some difficult issues.

I pray that you will have peace of mind and heart. You are loved by the one who created you.

Jim

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1 reply
bustrbrwn22 | @bustrbrwn22 | Nov 16, 2020
In reply to @lorirenee1 "@artscaping Well Chris, thanks so much for your kind words to me. I do really listen..." + (show)
@lorirenee1

@artscaping Well Chris, thanks so much for your kind words to me. I do really listen to people here, and sometimes, it overwhelms me. But I do try to really listen. As far as sulfa drugs, I doubt you or I should ever take them again. When I took them, my entire face was like one huge hive. Even the doctor got alarmed. So no, don't take them! I won't! LoriRenee1

Jump to this post

I stopped the new drug. My face like a red beet for 3 days scared me plus the NIH info John provided. I hope my nurse practitioner understands and will maybe prescribe a painkiller again. I don’t want to take drugs that aren’t what they are intended for or with extra side effects. Gabba and the others didn’t work for me. I feel guilty about it like I should have tried harder

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bustrbrwn22 | @bustrbrwn22 | Nov 16, 2020
In reply to @helennicola "Sunny, my MFR therapist told me this type of therapy does not help neuropathy per se;..." + (show)
@helennicola

Sunny, my MFR therapist told me this type of therapy does not help neuropathy per se; works best for muscle, joint type pain, which is why I go but will stop also because of the cost and hopefully find some exercises to do at home. Helen

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@helennicola hi Helen. Which type of therapy doesn’t help neuropathy per se? Thanks so much!!! Sorry I missed the post

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helennicola | @helennicola | Nov 16, 2020

hi bustrbrwn22, I was referring to MFR therapy not helpful for neuropathy per se but can alleviate discomfort, tight muscles, sore muscles, etc. due to neuropathy. (can’t help with nerve pain or nerve disease) Helen

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sunnyflower | @sunnyflower | Nov 16, 2020
In reply to @jesfactsmon "@lweave2 And regarding Connect as a source of ideas, I'd like to add that it is..." + (show)
@jesfactsmon

@lweave2
And regarding Connect as a source of ideas, I'd like to add that it is like "the gift that keeps on giving" as the longer you follow this forum the more ideas you will come across over time. I have latched on to different ideas here, some good, some great, and of course some misfires. But overall it's been nothing but a welcome tool for learning and hoping in a pleasant and positive social context. Thanks to everybody who keeps coming back over and over, it is appreciated! Best, Hank

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Amen! Well said Hank! Sunny

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