Living with Neuropathy - Welcome to the group

Hello @oliviasnava, Welcome to Connect. It warms my heart to read that you are looking for ways to help a new student with chemotherapy induced neuropathy learn to play the piano. There is another discussion that may be helpful -- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/

I did find 5 hand and finger exercises that might be helpful. Most of them I try to do myself a few times a day to keep my hands working better. I have small fiber peripheral neuropathy but only have the numbness and no pain but I also have carpal tunnel in the hands which causes them to stiffen up some.
-- Hand and Finger Exercises for Neuropathy: https://www.sitandbefit.org/hand-finger-exercises-neuropathy/

There is another discussion also that may benefit your student -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/. Also, the following sites are great references for learning more about neuropathy and available treatment options:
-- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Is your student on any medications or treatment for the neuropathy pain?

Hi John,

Thank you for the resources =D I'll give these all a deeper look before our next lesson. The 5 finger exercises is exactly what I was looking for! I may have to bring along a racquet ball to see if that helps her at all.

I only briefly talked with her mother regarding her condition, and she mentioned that she was on morphine at times to help manage the pain, but at this point she's only on mild pain medicines to help manage the chronic symptoms. Which is to say, playing the piano is exacerbating her symptoms enough to be noticeable and disruptive.

I did some hand stretches with her today that my piano teacher had taught me, and they seemed to help some. I also was aware to take many breaks and not have her play for more than a couple minutes at a time. I imagine she and I will have to work up to playing an entire 5 minute piece though. She is very motivated, and I am quite happy to say the pain doesn't seem to be hindering her very much, but I still don't want her to feel it if she doesn't have do.

Thanks for the help!

I was diagnosed with neuropathy over ten years ago. My neurologist has continued to tell me there is no treatment for my symptoms. I have some numbness in my feet and a little in my fingers. My major problem is balance, which has gotten significantly worse in the last couple of years. I now have to use a walking stick any time I go out and sometimes use a rollator. I go to a new neurologist in July(who has recently come to Duke after six years at Mayo) and hope she can tell me something that will help. Have any of you found anything that helps with balance issues?

Good evening @mamabear143. Welcome to Connect and you are absolutely in the right group for small fiber neuropathy. Before I introduce you to others with SFN, please tell me about your diagnosis. Did you have a skin punch biopsy? Was last March the time when you began treatment and/or medication to help with the symptoms of SFN?

My story is now quite lengthy as I have been coping with SFN for at least five years. I can assure you that I have learned a lot from this amazing group of caring and compassionate, folks also for five years. Knowledge is power and we are all advocates of sharing experiences.

What would you like to know about right now? What is at the top of your list?

May you be free of suffering and the causes of suffering.
Chris

Thank you 🙏 my dr referred me to get a punch biopsy , hopefully soon because it’s progressively so fast.. do most sfn biopsies include 3 areas for testing..?

Unfortunately my dr is hesitant about medication but my pain has been pretty debilitating, especially with the summer heat now ..

I’d like to know what’s been the best medication for easing the burning pain for most without really and side effects.. I also have alot of symptoms of autonomic neuropathy, not sure if that’s ok for this group also..

Thanks again

Hi there @mamabear143,

Thanks for getting back to me. I am glad you are getting the punch biopsy. And yes, there can be three areas for testing. It may not be discovered in all three areas which is then worth discussing with your clinician. And I certainly understand how debilitating SFN pain can be. I have been vacationing at a lake with the family and it has been sticky hot some days.. I had to miss both my MFR sessions this week and the pain was quite unnerving.

So I resorted to my best pain medication, sleep medication, and the only one that can knock that tingle, tangle stuff for a loop and that is medical cannabis. I have controlled the SFN pain and other SFN symptoms completely with a 1:1 CBD/THC tincture for about five years now. I can adjust the dosage to whatever the situation demands. What a relief.

The only Rx I use is Duloxetine (Cymbalta) in the morning. That keeps my anxiety under control which is important because anxiety begets pain which begets more anxiety and on and on.

Would you consider or have you tried medical cannabis?
May you be safe, free, and protected from inner and outer harm.
Chris

Hi there @mamabear143,

Thanks for getting back to me. I am glad you are getting the punch biopsy. And yes, there can be three areas for testing. It may not be discovered in all three areas which is then worth discussing with your clinician. And I certainly understand how debilitating SFN pain can be. I have been vacationing at a lake with the family and it has been sticky hot some days.. I had to miss both my MFR sessions this week and the pain was quite unnerving.

So I resorted to my best pain medication, sleep medication, and the only one that can knock that tingle, tangle stuff for a loop and that is medical cannabis. I have controlled the SFN pain and other SFN symptoms completely with a 1:1 CBD/THC tincture for about five years now. I can adjust the dosage to whatever the situation demands. What a relief.

The only Rx I use is Duloxetine (Cymbalta) in the morning. That keeps my anxiety under control which is important because anxiety begets pain which begets more anxiety and on and on.

Would you consider or have you tried medical cannabis?
May you be safe, free, and protected from inner and outer harm.
Chris

Thank you 🙏 my dr referred me to get a punch biopsy , hopefully soon because it’s progressively so fast.. do most sfn biopsies include 3 areas for testing..?

Unfortunately my dr is hesitant about medication but my pain has been pretty debilitating, especially with the summer heat now ..

I’d like to know what’s been the best medication for easing the burning pain for most without really and side effects.. I also have alot of symptoms of autonomic neuropathy, not sure if that’s ok for this group also..

Thanks again

The three punch biopsy sites on each leg help determine if your SFN is length-dependent or not. I wouldn’t spend a lot of time studying about those differences until you get the results. Then you can zero in on the type you most likely have, and learn more about the treatment that works for it.

As far as meds go, I have concluded, after years of trial and error, that medications are probably necessary. You may end up trying lots of different meds for this nerve pain. And what works for you will probably change over time. I suggest that you pay close attention to your body and any reactions, both good and bad. Make some notes, or even charts, if that works for you. Prepare to spend some time (and money) on physical therapy, massage, acupuncture - whatever works for you.

If someone tries to tell you that something you did - (like your diet, or excess weight, or lack of exercise, etc) caused this, just politely shut them down. You didn’t cause this, and a well-meaning friend or family members with some articles cannot cure you. If that were the case, no one would need to be on this forum!