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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.

jjwest | @jjwest | Oct 22, 2019
In reply to @cathylc58 "Hi Colleen, I'm so glad that you're here for us. I'm brand new to this group,..." + (show)
@cathylc58

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

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i TRULY AM SORRY YOU ARE HAVING SO MUCH PAIN..I DID NOT KNOW YOU CAN GET THIS INTERNALLY, I WOULD LIKE TO KNOW MORE ABOUT THIS..I HAVE IT IN FEET UP YO KNEES, AND BOTH HANDS. KEEP SEARCHING

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steeldove | @steeldove | Oct 22, 2019

@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?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 22, 2019
In reply to @cathylc58 "Hi Colleen, I'm so glad that you're here for us. I'm brand new to this group,..." + (show)
@cathylc58

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

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Hi Cathy @cathyic58 — Neuropathy can be depressing just because it makes you feel so helpless. You are not alone in how you feel. The more you can learn about your health condition, the better you can advocate for yourself and hopefully find something that helps with your neuropathy symptoms.

I shared a short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed in an earlier post in this discussion. Here is a link to the post with the video: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=101#comment-321457

He also has many Youtube videos that you can find by searching using his name. I shared my story of my diagnosis of idiopathic small fiber peripheral neuropathy and what has helped me in an early post here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

To your question, can neuropathy kill you, I don't think any of us can answer that question. Most members including myself have no medical training or background so can only share our personal experiences. You mentioned that you are currently being tested for neuropathy. It might help you if you can make a list of all of your concerns and questions so that you can discuss them with your doctor at your next appointment. I tend to need to write my questions down so that I don't forget to ask them when I see my doctor.

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 22, 2019
In reply to @steeldove "@colleenyoung I'm disappointed in the Mayo Clinic!! I've had a truly discouraging situation with the Spine..." + (show)
@steeldove

@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?

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@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

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1 reply
steeldove | @steeldove | Oct 22, 2019
In reply to @johnbishop "@steeldove I'm sorry to hear about your discouraging Mayo experience. Have you considered contacting the Office..." + (show)
@johnbishop

@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

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@johnbishop Thanks, John, I'll try calling the Rochester Office of Patient Experience. I've been a patient at Mayo for several years, and had absolutely wonderful experiences when I had two total shoulder replacements, so this bad experience came as a shock. I'll let you know if the OPE provides any help.

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ashley302 | @ashley302 | Oct 22, 2019
In reply to @artscaping "Good evening @ashley302, I haven't seen an update for you in your search for information about..." + (show)
@artscaping

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

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Good evening @artscaping ,
I've had numerous labs and testing done to find a root cause of the small fiber neuropathy but nothing has come back to say that's what caused it. I do exercise and eat pretty healthy. I have a strong faith in God and that helps me stay positive and cope.

I really hope they come out with some treatment that can repair the nerves.

I'm doing okay without taking medication. It never really helped with my neuropathy symptoms so I would rather find a natural remedy.

I have not explored the medical cannabis option. Would that require a prescription?

My anger about the condition comes and goes. Most days I"m okay but at times this condition can be overwhelming and I can lash out.

Thank you for your concern and help on this. Ashley

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2 replies
ashley302 | @ashley302 | Oct 22, 2019
In reply to @jeffrapp "Hi Ashley I'm also very sorry you have developed peripheral neuropathy, especially at such a young..." + (show)
@jeffrapp

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.

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Hi Jeff,

I have been to UCLA which is a big hospital in Los Angeles where they have specialists. So far no reason to know what is causing my neuropathy. So I've tried different remedies and whatever seems to naturally help the pain.

You are right about not to be angry. It doesn't make it any better so I do feel like I'm able to find ways to cope and stay calm and hopeful about this condition.

Thank you for your tips!

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Moderator
Lisa Lucier, Moderator | @lisalucier | Oct 22, 2019
In reply to @notborntoburn "Thanks, I am not on any meds at the moment,except blood pressure. Drs offer no help..." + (show)
@notborntoburn

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

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@notborntoburn - just wanted to check back in with you since you'd mentioned feeling tired, having a neuro appointment a month out and looking for some hope. How are you doing?

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notborntoburn | @notborntoburn | Oct 22, 2019

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

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 23, 2019
In reply to @notborntoburn "Still feeling the burn! Dr suggest lidocaine injections but I don’t think they work for very..." + (show)
@notborntoburn

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

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Im sorry for butting in, but something you said struck me.

I receive weekly lidocaine infusions and get partial relief although I will agree it is short lived. When I stopped for one week I realized how important they are, regardless.

I question myself all the time about the joy of having partial pain reduction and why cant it be more or last longer. Mind you I still need to take Hydrocodone (along with Cymbalta and Lyrica) but, it manages my pain better in conjunction with lidocaine.

I try my best to just be thankful and not focus on what lurks around the corner each week after my few "better" days are up. So, I agree with your "get greedy" statement. Hard not too when starved for relief.

My neuropathy seems to be different in the fact that I have wide spread pain through my body and it is not contained to my feet.

I suppose trying lidocaine is about what it's worth to you. I'd hope it would bring your feet some relief, albeit temporary.

Not gonna lie...this rollercoaster of neuropathy is really wearing me down mentally and physically.

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