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.

Lorraine | @lmill7 | Mar 31, 2023

In reply to @lorrainehackett "Have idiopathic peripheral Neuropathy for 15 years but lately progressing quickly. Any way to stop itm" + (show)

Hi, welcome 💕🙏🏻
@lmill7 look up my past post fr some guidelines I follow n help.
Lots of autoimmune neuropathy that’s not diagnosed.
I was only 30 when mine stated but they thought it was just osteoarthritis in my spine.
Any arthritis or autoimmune starts from bad digestion n detox failure -nutrient deficiency and acidic body ph.
Then a cascade of things.
I never worked another day after mine started.
Directly after surgery. Couldn’t stand sheets against my skin. No clothing or shoes.😥
I was active duty n 35 by then. Medical just ignored my broken neck fusion, neuropathy n all my symptoms. They always blame th patient.
Can’t lay quiet or sleep.
Everything I’ve tried has helped. Can’t work but managed to raise our special needs son. At least son is doing very well💕🙏🏻🙂
I wish u luck n prayers. So many don’t listen.
Skin punch is now known as most definitive testing w/ spine tap to check inflammation markers.
💕🙏🏻🇺🇸

lorrainehackett | @lorrainehackett | Mar 31, 2023

In reply to @lorrainehackett "Have idiopathic peripheral Neuropathy for 15 years but lately progressing quickly. Any way to stop itm" + (show)

Thanks for the hug.
It means a lot knowing others understand. I look fit and normal but people don't see the pain.

bettyg81pain | @bettyg81pain | Mar 31, 2023

In reply to @artscaping "Good evening @pinkton, My goodness, it has been quite a while since you posted here on..." + (show)

@artscaping

Good evening @pinkton, My goodness, it has been quite a while since you posted here on Connect. Welcome back....nice to hear from you. You know....neuropathy has a way of getting worse. There still is no cure for this condition. However, there are some medications and treatments that can help you cope with the progression of pain and movement issues.

Let's start with exercises. I have a PT from the Mayo Clinic who helps me with the appropriate exercises that keep me moving without the risk of falling. They are not too difficult and can be done at home. The site for selection by my Mayo PT is called Medbridge. Basically, they help you improve your stability and avoid falls.

I also do some "wake up" Yoga daily except on Tuesdays when I participate in an hour of Yoga class with lots of stretches. I have been with my teacher for about 8 years and she is simply amazing. On Thursdays, I do an hour of mindfulness meditation with the same instructor. I then spend about 20 -30 minutes on other days practicing meditation on my own. I don't think I can emphasize enough how these activities, Yoga and Mindfulness. prepare me every day to battle my SFN (small fiber neuropathy).

Have you been browsing through Connect even though you haven't posted for some time?

You may want to investigate MFR (myofascial release therapy). Here is a link to that section on Connect.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I now have two sessions a week, with two therapists. I would not be able to drive my car or walk along the river without MFR.

What medications have you found to be helpful up to this point? Have you discussed the need to address this subject with your clinician or other medical professionals? For me, this is really a challenge. I have never been one you would call a pill popper and I have had lots of negative reactions over the years, especially after surgery.

About 10 years ago when I received my SFN diagnosis, a couple of friends who are nurses took me under their wing and taught me how to select and use medical cannabis. I now use different dosages and components during the day and at bedtime.

As you know.....we are all so very different in our reactions to medications. I try to stay on top of the treatments and medications I need in order to cope with increasing levels of pain and discomfort.

Please let me know if any of these suggestions are helpful.
May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Which medical cannabis are you using and how you have found to use them. Thanks!!

pat79 | @pat79 | Mar 31, 2023

HI. I am 79 years old and have had 3 back surgeries. I have chronic pain. I had scoliosis so they did a fusion of L3-4-5. I guess it is straighter now but it always hurts. And I guess that resulted in the neuropathy. That is more bothersome than the back pain. Would like to hear from others who are experiencing the same type of problems and what they do about it. I am scheduled to have a Stimwave spinal stimulator implanted. I am really worried about whether that will help or make things worse. Thanks for any help anyone has. pat79

lorrainehackett | @lorrainehackett | Mar 31, 2023

In reply to @lorrainehackett "Have idiopathic peripheral Neuropathy for 15 years but lately progressing quickly. Any way to stop itm" + (show)

Thanks

lorrainehackett | @lorrainehackett | Mar 31, 2023

In reply to @pat79 "HI. I am 79 years old and have had 3 back surgeries. I have chronic pain...." + (show)

Goodluck

John, Volunteer Mentor | @johnbishop | Mar 31, 2023

In reply to @pat79 "HI. I am 79 years old and have had 3 back surgeries. I have chronic pain...." + (show)

Hi Pat @pat79, Welcome to Connect. While we wait for members with similar experiences to respond, I thought you might find the following discussions helpful:
-- Scoliosis - Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/scoliosis-introduce-yourself/
-- Scoliosis and Chronic back pain: https://connect.mayoclinic.org/discussion/chronic-back-pain-2c72ae/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

Have you heard about or tried Myofascial Release Therapy to see if it helps?

roserogers | @roserogers | Apr 2, 2023

Hello,
In March 2022 I was diagnosed with Parkinson's Disease by a General Neurologist.
At that time I was advised to see a Movement Specialist and waited 6 months to see a highly recommended specialist at University of Texas.
His diagnosis is Multi System Atropy (MSA), a rare, fatal disease.
If you have any advice or experience with the stages of MSA and what I will be dealing with going forward, I will very much appreciate hearing from you.
Thank you.

Chris Trout, Volunteer Mentor | @artscaping | Apr 2, 2023

In reply to @pinkton "Hi Chris, I am not a pill pusher either, so I do not take any medication..." + (show)

Good evening once again. I am right here and I will post in response to your requests and feedback. How's that?
Let's start with your feet. Yes, mine are numb most of the time. They have tingle tangles and a leather-like feel that is very tight. In order to be able to drive, my MFR therapists work on those feet twice a week. I do have to remember to lift them high enough, especially when going up and down stairs. Because my hands are also numb and I find it difficult to grip or grasp anything, I use a 1:3 CBD/THC balm at night time made by Papa and Barkley....at papaandbarkley.com. If you go there you will see two websites. One is for mailable CBD and so it is papaandbarkleycbd.com. However, I do want the entourage effect which means THC.

Oh....I almost forgot...those feet are also cold 90% of the time. The only crazy thing I do is have my toenails painted. On the big toe, I have a layer of rhinestones. I remember that my Mom always wanted her nails done so I set that up for her when she was in Assisted Living.

So....that is one way I use medical cannabis. The other way is determined by pain and the feeling of heaviness. For example, when a storm is coming, the Barometric Pressure (BP) will begin to fall. The effect on my SFN is overwhelming and I resort to a 1:1 CBD/THC tincture in an eye dropper. Once the BP begins to rise once again, I can go back to using a 2:1 tincture. I think I have been using Care by Design for years. Each dosage is consistently the same.....something that is reassuring. I can help you with dosage amounts when that time comes for you. Or you can visit a Cannabis dispensary and speak to their specially trained pharmaceutical staff.

For balance, I use a program from a company called "Medbridge". My PT selects the exercises and then we follow up with telehealth to make sure I am doing them correctly. I overdid it one time recently and my neuropathy raised its unruly head to let me know not to do that anymore.

So....how's that for starters? The only medication I take is for anxiety. Bisperone is a new one for me and I am doing a one-month trial. So far, I am impressed. Previously I took Duloxetine for several years. Anxiety leads to pain and pain leads to anxiety so this is an important element.

And one other tip and trick is to ask Jay, my life partner, to rub my feet for me. It might cost you a special dessert every once in a while but it is worth it.

I think that's enough for this evening. We are getting ready for the next storm so tomorrow will be a day of heaviness and pain. I will have a one-hour MFR session to help me get my body ready.

Please let me know your responses and wonderments........I am always here for you.

Chris

John, Volunteer Mentor | @johnbishop | Apr 3, 2023

In reply to @roserogers "Hello, In March 2022 I was diagnosed with Parkinson's Disease by a General Neurologist. At that..." + (show)

Welcome @roserogers, I don't have any experience with MSA but there is another discussion you might find helpful:
-- Parkinson's along with Multiple Systems Atrophy (MSA): https://connect.mayoclinic.org/discussion/parkinsons-plus-msa/.

Here is another site that has a lot of information and may help answer some of your questions:
-- Multiple System Atrophy - Types and Symptoms: https://www.multiplesystematrophy.org/about-msa/types-and-symptoms/.

Did the Movement Specialist offer any information or suggestions on what to expect?