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.

lorrainehackett | @lorrainehackett | Mar 31, 2023

Thanks for the information. I will be on alert for side effects

lorrainehackett | @lorrainehackett | Mar 31, 2023

In reply to @lorrainehackett "Thanks for the information. I will be on alert for side effects" + (show)

Thanks for the info. Will be alert

lorrainehackett | @lorrainehackett | Mar 31, 2023

In reply to @dabbs "Have you tried exercise stretch bands? Their inexpensive and can help maintain muscle tone…David" + (show)

I do a lower body stretch with bands from my physical therapist.

Have cubital tunnel right elbow which limits upper body exercise.
Of course I walk 4 to 6 miles daily and bike or exercise bike. But does not help upper body.

PT gave me a lot of bands

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