Living with Neuropathy - Welcome to the group

Hello @gflandre62, Welcome to Mayo Clinic Connect. Short answer to your question does an injection of Wharton's Jelly cure neuropathy - Nope. I have no medical training or background like most of us but I have never seen, heard or read about any treatment that will cure neuropathy. There are a lot of treatments that relieve the symptoms of neuropathy (pain, tingling, numbness, etc..) but nothing cures it.

The one caveat (in my opinion) is if the neuropathy is caused by a pinched or damaged nerve where it can be fixed by surgery or other treatment such as Myofascial Release Therapy (MFR). There is another discussion for MFR therapy here:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Hello Everyone -- I wanted to let you know about a new COVID-19 group that has been created to help you stay informed with different related discussions to help us get through this difficult time so that we can help each other. If you don't see the discussion topic you and have a question, please create a new discussion under the new COVID-19 group.
https://connect.mayoclinic.org/group/covid-19/

My name is Kenzie. I was diagnosed with fibromyalgia at 18, small fiber neuropathy & erythromyalgia at 31, and R/A at 34. Most recently, I am struggling with my sacral plexus nerve in my spine that goes down my leg to my foot and I am bedridden again at 42. It’s been 3 months so far. I had a nerve block that appears to be helping a little but not enough for me to walk yet.

I have so much frustration with the amount of awareness and research that is given to peripheral neuropathy and finding a cure. I tried to raise awareness when I was well, but people just don’t have any idea the amount of excruciating extreme torture most of us experience on a daily basis.

If there’s any one out there.....please help us!!

Sorry to hear about your illnesses and frustration. Have you tried acupuncture. I have had partial relief from my neuropathy. Some insurance policies cover the cost. Good luck

Hello @kscott42, Welcome to Mayo Clinic Connect. I know it's difficult when you are pain and not finding something that helps. It's good that you are doing research and trying to learn as much as you can about your conditions. There is research being done but I'm sure it's taking a backseat under the current health crisis. There are a couple of good reference sites available if you don't already know about them.

Neuropathy Commons -- https://neuropathycommons.org/
The Foundation for Peripheral Neuropathy -- https://www.foundationforpn.org/

@jenniferhunter, @jimhd @rwinney and @artscaping may have some suggestions for you.

You mentioned struggling with your sacral plexus nerve, have you had a back injury?

Hey Kenzie @kscott42. Welcome to Connect! Happy to have you join.

Given your story, I think this may be a good place for you to Connect with others who share your frustration, pain and concern for lack of peripheral neuropathy research. I'm right there with you on that.

I'm hanging on to my forties but, it's about to end and turn over to that "half century mark"! And you know what...I could care less about the # because I've got so many bigger fish to fry regarding my health and quality of life.

I've experienced several diagnosis, diseases and whole new perspectives on how to live with what life handed me. It sucks pretty bad on many a day. ☹

As far as suggestions...well, I've had my fair share of nerve blocks and RFA's. In your case, you have to do what you have to do in order to walk. You sound like a veteran of pain at a young age but, I will throw out some things that aid in my overall SFPN attack. Note that I can barely walk beyond 10 ft regardless, however, I feel that a small amount of each component contributes.

1. myofacial release
2. supplement regimen
3. warm to hot (if tolerable) bath/shower
4. topical relief cream/lotion/oil
5. healthy diet (reduce sugar/salt/processed food)
6. mild stretching (I can't excercise)
7. meditation and mindfulness
8. listening to my bodies needs and acting
9. heat/ice
10. balancing my capability of activity/rest

Then of course there are drugs...I need opiod therapy and anti seizure. Evenings I need medical marijuana or days also, when opiods aren't enough.

I'm done with injections and infusions. No game changer for me. So, now I think outside the box and am pending admittance to Mayo Pain Rehabilitation Program. Had my nurse interview today actually and she agrees that I have now gone into Central Sensitization. Another hurdle to jump but, hey at this point...what else can I do, but hopefully continue to gain knowledge.

I'm really sorry for your life challenges and hope that even just hearing about others griefs, helps a bit. It does for me when I'm really down. Always nice to know you are not alone.

I wish you well and please know that we are here for you. Comfort in numbers.
Rachel

@kscott42
PS: Thank you for attempting to raise awareness when you were able. I really have no clue how to generate awareness and push this disease to the forefront.

Sorry, I just keep having thoughts on lacking research and urgency for peripheral neuropathy. It, for the most part, is an invisible disease which is not as prominent to reaction. It's human nature to react to a visual. I've witnessed first hand someone on crutches or with a cast getting immediate sympathy and recognition of pain over myself. My own husband responds more when my legs are fully wrapped in heat because he visualizes and reacts with empathy. The intense pain, burning, cramping, weakness, stabbing, electric shocks etc...is not typically seen externally by a stranger. Plus, for the most part, neuropathy is not a known killer, but a debilitater. Game changer!
This is only my opinion.
Rachel

Very well put I share your pain
Take care

@rwinney Rachel, you are so right. My mom in law, God rest her soul, got livid when people used handicapped parking who were not in wheel chairs. If she could not see it, it didn't exist. She had MS, and used a walker. I used to try to reason with her that not all illness can be seen, but it was like talking to a wall. My mom had severe emphysema, and needed handicapped parking to get immediately into air conditioning, so that she could breathe! Some people lack empathy, intelligence,.....so many things. What amazes me is that there really are no drugs specifically for nerve damage. But my neurologist said, "nerves are very smart, and very hard to deal with!!!!" Who knows. I know that I am willing to try everything and anything not to hurt. Sometimes I try to keep my feet really still, because if I don't move them, some of the horrid senses that I feel, can't be felt. I do whatever helps. I would put mustard on them, if it helped. And if handicapped parking helps, people need to use them. I think we need to practice forgiveness from lack of empathy, idiocy, whatever....A forgiving heart can be peaceful.....Lori Renee