Living with Neuropathy - Welcome to the group

Mat not may.

HI everyone my name is Jennifer I have been living with my neuropathy since 2014 since I was first diagnosed however now the current pill I am on doesn't work anymore and everything that deals with the peripheral polyneuropathy is going hay wire. I can hardly balance now; I am unable to do much without a cane or walker and I am only 41 going on 42 years

i am an 88 year old female who worked until age 79 as a CCRN. I have severe idiopathic peripheral neuropathy that is both painful and disabling. I am looking for assistance controlling it. Help would be greatly appreciated.... MMGunia

Has you therapist treated the lumbar spine? Does it change your symptoms? I am a PT who specialized in the McKenzie approach for diagnosis and treatment of the spine. Bulging discs will cause radicular symptoms if the bulge is compromising the foramen and touching the nerve root.

Hello Madge @madgemgunia, Sorry to hear you haven't found anything that helps your PN pain yet since you joined Connect last year. I think you mentioned in another post that you have tried alternative therapies and topicals with no relief. I was wondering if you have heard of Myofascial Release Therapy (MFR). @artscaping and others have found that it helps them and may be able to share their experiences. Here is the discussion if you want to read through the description of what it is and how it can help - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Hi @denisept, Welcome to Connect. Thanks for sharing your experience and information with the McKenzie approach for diagnosis and treatment of the spine. I was not familiar with it but after reading a little more about the specifics, it does make a lot of sense. Do you mind sharing what you were searching for when you found Connect?

Hi John,
I found Connect when I was searching for treatment of post Covid Syndrome. I had Covid in early November 2021 and I have lingering headaches, dizziness and cognitive problems. I was looking for neurological symptoms when I saw some folks struggling with possible radiculopathies and added my input. I am McKenzie certified and pursued the certification after I personally was treated successfully by a colleague.

@jeffrapp
Jeff, thank you for your private message. So that other members may benefit, I wanted to respond publicly to your thoughts about mindfulness training being the only thing that may help you with small fiber neuropathy symptoms. I understand your thought process given so many other things have failed.

There are many self-help tools to build upon in addition to cognitive behavioral therapy and mindfulness. CBT is a hugely successful tool, one that has helped me tremendously. I liken pain management to the expression "it takes a village to raise a child". It takes a village "of tools" to manage chronic pain and symptoms, these include:

Exercise, strengthening, cardio, daily stretching, proper nutrition, moderation, modification, managing emotions and stress, behavioral changes, distraction, scheduling, mindfulness, diaphragmatic breathing, meditation, reduction of chemicals, understanding how pain originates, stopping pain behaviors (anything you do, say, or think that reminds you of pain), humor, socialization, good sleep hygiene, perseverance, positive attitude, goal setting, positive support system, acceptance.
And now you know why I say it takes "a village".

I was given this blueprint over a 3 week period at Mayo Clinic's Pain Rehabilitation Center. It was a crash course and continues on for the rest of my life because my chronic conditions aren't going anywhere. Although I understand not everyone can attend Mayo PRC, I feel that making small changes one at a time is a great place to start for positive change. Which of the tools listed can you see yourself improving upon or adding to your self-help regiment in addition to mindfulness?

Hi, my name is Evie. I recently been diagnosed with neuropathy in my fingers and in my feet and toes. I also have restless leg syndrome, but in the last two months it's gotten severe. It's constant. All day and night. My doctor gave me Gabapentin 100mg ×3 a day but I recently got a migraine injection called Emgality that's been giving me chest pain and the Gabapentin seems to be making it worse. I've tried Gabapentin years ago at 400mg when I just had the RLS and didn't have any problems, but stopped taking it when I exercized my legs well. But now nothing works. Any advice?

Thanks, Rachel, for your excellent answer.
That's a big list, and all of it is true.
I have "started" some, but not all, and it helps. I was hoping you knew some "secret" method or teacher. The usual magic bullet, that I know does not yet exist.
Back to work.
Thanks again.