1. < Neuropathy
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.

Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 3, 2020
In reply to @johnbishop "Aw shucks Maam...you're the BEST!" + (show)
@johnbishop

Aw shucks Maam...you're the BEST!

Jump to this post

😁

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 3, 2020
In reply to @johnbishop "Hi Teresa @hopeful33250 @rwinney -- Here's a description of the zero gravity setting. The position relieves..." + (show)
@johnbishop

Hi Teresa @hopeful33250 @rwinney -- Here's a description of the zero gravity setting.

The position relieves the pressures of gravity from the body by distributing the body's weight evenly to permit for the right amount of needed support. Zero Gravity in the adjustable bed frame allows for the legs and head to be raised at just the right angle to reduce back pressure and increase circulation.

I think the Sleep Number is a good option but I'm looking at a Ghostbed adjustable frame and mattress since I can get two XL single frames together (both adjustable individually) for a lot less money than the Sleep Number. We had a Sleep Number bed when they first came out and I loved it. Over the years it started losing air and we got a Ghostbed mattress and used the Sleep number frame. I was probably too large for the bed ☺ -- 300+ pounder on one side of the bed was me. Fortunately I'm no longer at that weight and eating much healthier.

Here's more information on how the zero gravity helps: https://www.ghostbed.com/education/benefits-of-zero-gravity-adjustable-bed-base/

Jump to this post

Thanks for the explanation, @johnbishop! I'm planning on getting an adjustable bed so this information will be helpful.

REPLY
gashmell | @gashmell | Feb 3, 2020

Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc who has lots of chronic pain conditions including EDS, CRPS, IC, LPHS, Fibro etc. I’m trying to figure out how to treat my pain with less pills and more treatments such as IV lidocaine, magnesium, ketamine. I’m sick of pill pushing doctors and am in the process of replacing half my current doctors. We live in northern Wisconsin and I find it difficult to find alternative treatments that aren’t far away. I’m looking for advice, education, peoples experiences and help finding the pain relief I’m going after, especially for my CRPS neuropathy. Hello and I look forward to meeting you and some good old open minded discussions! Xoxo
REPLY
3 replies
wilcy | @wilcy | Feb 3, 2020
In reply to @gashmell "Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc..." + (show)
@gashmell

Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc who has lots of chronic pain conditions including EDS, CRPS, IC, LPHS, Fibro etc. I’m trying to figure out how to treat my pain with less pills and more treatments such as IV lidocaine, magnesium, ketamine. I’m sick of pill pushing doctors and am in the process of replacing half my current doctors. We live in northern Wisconsin and I find it difficult to find alternative treatments that aren’t far away. I’m looking for advice, education, peoples experiences and help finding the pain relief I’m going after, especially for my CRPS neuropathy. Hello and I look forward to meeting you and some good old open minded discussions! Xoxo

Jump to this post

Kratom & Curcumin

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 3, 2020

OMG....love, love, love that beautiful face! He without a doubt keeps you going and focused to the best of your ability. 😍

REPLY
gashmell | @gashmell | Feb 3, 2020

Thank you! He’s our triple rainbow baby. He sure does keep me moving forward in this life;)

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 3, 2020
In reply to @gashmell "Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc..." + (show)
@gashmell

Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc who has lots of chronic pain conditions including EDS, CRPS, IC, LPHS, Fibro etc. I’m trying to figure out how to treat my pain with less pills and more treatments such as IV lidocaine, magnesium, ketamine. I’m sick of pill pushing doctors and am in the process of replacing half my current doctors. We live in northern Wisconsin and I find it difficult to find alternative treatments that aren’t far away. I’m looking for advice, education, peoples experiences and help finding the pain relief I’m going after, especially for my CRPS neuropathy. Hello and I look forward to meeting you and some good old open minded discussions! Xoxo

Jump to this post

Hi and welcome! - I'm Rachel and you my dear came to right place. You will soon see how much support, compassion and knowledge comes from this forum.

My babies are grown (soon to be 19 and 26) but they remain my main force, focus and reason for persevering. Plus, I'm pretty stubborn and don't like to be knocked down by anything, including disease!

Best thing for you to do is continue being your own advocate, comb the many threads and posts regarding your diseases, chronic pain, medications and procedures. Others life experiences are far more inspirational that what any Dr or text book (internet) has to pprovide.

Be mindful however that each is unique to themselves and you may need to navigate through it for your best take away.

Best of luck and happy you are reaching out. What a step in the right direction!

Be well and be thankful you have those cute little cheeks to smooch.

Warm regards,
Rachel

REPLY
Leonard | @jakedduck1 | Feb 3, 2020
In reply to @rwinney "Hi all. I purchased a Sleep Number bed 2 years ago for pain reasons. It was..." + (show)
@rwinney

Hi all. I purchased a Sleep Number bed 2 years ago for pain reasons. It was quite costly however worth It overall. My husband loves the zero gravity setting as @johnbishop referred to. I am all over the map with my settings. Unfortunately, my neuropathy has a mind of its own and every day may be different, resulting in different sleep needs. Sleep Number is definitely worth a try if in the budget.

Jump to this post

Hi
I guess I am the fly in the ointment. I never slept on anything so uncomfortable in my life and I send it back. I had a backache nearly the whole time I was testing it out
You couldn’t pay me enough to own one.
Jake

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 3, 2020

Sorry to hear that. Look at it this way...you saved a bundle!

REPLY
qball2019 | @qball2019 | Feb 3, 2020
In reply to @gashmell "Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc..." + (show)
@gashmell

Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc who has lots of chronic pain conditions including EDS, CRPS, IC, LPHS, Fibro etc. I’m trying to figure out how to treat my pain with less pills and more treatments such as IV lidocaine, magnesium, ketamine. I’m sick of pill pushing doctors and am in the process of replacing half my current doctors. We live in northern Wisconsin and I find it difficult to find alternative treatments that aren’t far away. I’m looking for advice, education, peoples experiences and help finding the pain relief I’m going after, especially for my CRPS neuropathy. Hello and I look forward to meeting you and some good old open minded discussions! Xoxo

Jump to this post

@gashmell Hello!! I'm also from northern WI, Lakewood to be exact. Are you far from me? I have 4 providers that I see and it took many years to find them. I had to weed out so many over the years! Anyway, one of them is someone I think you should see. Her name is Dr. Linda Bluestein and she owns Wisconsin Integrative Pain Specialists in Weston (right by Wausau). She specializes in EDS and many other areas as well. She can talk to you about infusions too. She gives me Ketamine troches (dissolve under your tongue) and they work very nicely. She has all kinds of tricks up her sleeve. Please check her site out https://www.wisconsinintegrativepainspecialists.org/ Please let me know what you think and if you end up going to see her. Best of luck to you!
Terri

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.