Living with Neuropathy - Welcome to the group

Hi Colleen,
I'm so glad that you're here for us. I'm brand new to this group, and I'm feeling very depressed. I'm a 61 year old female, who has had diabetes since 2006. I started having neuropathy symptoms in August of 2018. As of right now, I have neuropathy in both feet, both small and large intestines, bladder( I have a folley catheter), skin, and as of this morning, my throat. I am so depressed. I feel like neuropathy is stealing my life from me. I used to be so active, and love to go to lawn sales, and markdowns stores, and having lots of fun. But not anymore. I have a catheter bag on my leg, and now I need a walker. I can only sing two verses of the songs at church, because I run out of breath, and I used to love singing, and was in the choir. But not anymore. I'm currently being tested for neuropathy in my heart and lungs. Colleen, I have a question for you, can neuropathy kill you? Because I think that's what it's doing to me.
Thank you for listening to me.
Cathy

Hi Colleen,
I'm so glad that you're here for us. I'm brand new to this group, and I'm feeling very depressed. I'm a 61 year old female, who has had diabetes since 2006. I started having neuropathy symptoms in August of 2018. As of right now, I have neuropathy in both feet, both small and large intestines, bladder( I have a folley catheter), skin, and as of this morning, my throat. I am so depressed. I feel like neuropathy is stealing my life from me. I used to be so active, and love to go to lawn sales, and markdowns stores, and having lots of fun. But not anymore. I have a catheter bag on my leg, and now I need a walker. I can only sing two verses of the songs at church, because I run out of breath, and I used to love singing, and was in the choir. But not anymore. I'm currently being tested for neuropathy in my heart and lungs. Colleen, I have a question for you, can neuropathy kill you? Because I think that's what it's doing to me.
Thank you for listening to me.
Cathy

@colleenyoung I'm disappointed in the Mayo Clinic!! I've had a truly discouraging situation with the Spine Center and Neurology. Despite my messages and telephone calls, it's taken the Spine Center almost a year to respond to a neurologist bouncing an issue back to them for "next steps" and then only through a department secretary telling me over the phone that the Spine Center doctors did not agree with the neurologist's suggestions. Certainly not the kind of care/service one expects from the Mayo Clinic!! To whom can I direct my complaint?

@steeldove I'm sorry to hear about your discouraging Mayo experience. Have you considered contacting the Office of Patient Experience at Mayo Clinic? It's worth a try. You'll find the contact information for all 3 Mayo campuses on this webpage: https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Good evening @ashley302, I haven't seen an update for you in your search for information about and treatment for SFN. I think you asked about natural remedies. Have you discovered any self-help treatments? At the top of my list are Yoga, Mindful Meditation and Myofascial Release (MFR ). The yoga and meditation are must-dos for connecting the body, mind, and spirit. I am happy to share more with you if you would find it worthwhile.

You are sooooo young. Perhaps there will soon be a medication that encourages nerves to regenerate. How do you think your small fiber nerves were injured?

You have made a decision to stop taking medication. How are you doing without medication? I understand your desire to be unencumbered with side effects and the possibility of dependency. I reached that point early in my SFN journey. That was when I engaged a "coach" to help me find the right natural remedy and that is medical cannabis. Have you explored that option? I am now four years down the cannabis road and have found a regimen that works best for me.

I am concerned about your anger and depression. How do you feel as you read this? How can I help? I am here for you.
May you have relief from pain. Chris

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

Thanks,
I am not on any meds at the moment,except blood pressure. Drs offer no help Ichanged neuro dr but appt is a month away.
I am tired and keep looking for some hope

Still feeling the burn!
Dr suggest lidocaine injections but I don’t think they work for very long so not sure about the benefits.
Just once wouldn’t it be great to sleep and not wake up burning?! But then I would get greedy and want feel that freedom again!!
Thanks for the support I really really value this group