Living with Neuropathy - Welcome to the group

I'm just getting where it's hard for me to even walk. i have always exercised regularly and have the means to do so, just don't have the strength.

I am on Cymbalta, and it’s supposed to help with nerve pain and depression. I don’t know if it works at all because I was already on it when I got peripheral neuropathy. I have tremendous pain and numbness in both legs snd ankles.

Hi @spacewalker - Do you have any family or friends that to go out for walks? I have similar issues with walking due to my lower back. I do make it a point to get 5,000+ steps daily with my exercise bike/cross-trainer and when the weather is nice I try to take a walk around the neighborhood. There is a discussion that you might consider joining and meeting other members discussing walking:

Let’s Go Walking! Join me for a virtual walking support group: https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/

Here are some tips that help you build more strength -- 5 Strength-Training Moves Every Walker Should Be Doing: https://www.prevention.com/fitness/a20461006/strength-training-exercises-for-your-walking-muscles/

Good afternoon @carlyschneider. I'm @artscaping or just Chris. John Bishop has asked me to introduce my experience with MFR, Myofascial Release therapy. If you have seen the video in this section then you have a pretty good idea of how fascia connects everything in our bodies. When it becomes restricted or tight, it hurts. A therapist has to have very sensitive hands to be able to find the restrictions. If you have accepted your diagnosis then you understand that there is no cure for SFN.,,,,,,and that it progresses in different ways and on different time schedules for different individuals.

Five years ago, I started with MFR sessions every other week and that was enough to mitigate the symptoms of SFN so that quality of life was maintained. Now, I have two MFR sessions a week plus at-home treatments I can manage by myself or with props. I actually moved here lock, stock, and barrel in part because the MFR therapist is excellent. The other reason was that I could not handle the wildfires on my mountain.

Two realities: 1. sometimes when an area in the body needs a great deal of work, you may not feel results for 24 hours. 2. sometimes when a restriction is super tight, it does not release without some discomfort/pain. You just have to let your MFR therapist know your tolerance level and when the source of the pain has been reached. It is such a relief.

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

Thank you Chris @artscaping for your insight and for reaching out. Honestly, I don’t think I’ve accepted this yet. I’m sure many on here share my story of feeling like the rug was ripped out from under them. Last year, I was a healthy, active 42 year old woman chasing my 5 year old son around, exercising regularly, enjoying hikes and my new treadmill and bam, within a year, all of that stopped. I’m still in shock. I’m still figuring out the cause and looking into treatments.

Can you tell me how you got started on MFR? Had you tried other treatments? I haven’t seen the video so I will look for it. I’m interested in hearing about everything that is out there! IVIG was recommended to me. Medications were also recommend which is a path I don’t want to go down if possible, at least not yet. Thank you again for your time and I look forward to learning more about MFR.
Carly

Good evening. I get it and understand your need. I am going to ask @jenniferhunter, another mentor with significant experience to step in and explain to you why MFR may be right for you. She will also direct you to the discussion on Connect.
Chris

Thank you Chris, take good care 😊

@carlyschneider if there is a physical treatment that can make you feel alive again, it is MFR. Other things are important too like eating to reduce inflammation and eating foods that help your body detox. You have to get everything in balance. What happens with injuries, illness, stress or bad postural habits is our bodies can get stuck and stop moving properly. Muscles create waste products too after exercise and need to be stretched to re-establish circulation of fluids and carry those waste products away. Sometimes it is too easy to just believe a diagnosis that tells you there is no hope of returning to what was your normal. I see that as a challenge to figure out why and hope I can try to make things better for myself.

I was introduced to MFR therapy 11 years ago for treatment of thoracic outlet syndrome which is an entrapment of nerves and blood vessels between the collar bone and rib cage. There are several places where nerves can get compressed between overly tight muscles or muscles that develop scar tissue because of an injury. It does seem crazy, but imagine yourself in a stretchy suit of elastic strings, and that those strings also grow internally in your body and connect everything. That is the role of fascia and it can shift between being a semisolid to a liquid and reshape itself. It allows the fluid exchange of lymph which carries away waste products and also conducts electricity. Injuries and surgery create scar tissue in the fascia that makes knots, and then it doesn't move and glide. The body gets stuck causing pain and inflammation. What if we can unstick this problem? Yes there is hope because that is what myofascial release does when a therapist applies a shearing force which starts the fascia stretching and gliding again. It can't promise a cure for a disease, but if there is a physical part of the problem, it can help. It does get stuck, dehydrated tissue re-hydrated again.

Working with a PT who could feel my tight spots, educated me about the physical issues that I have, and I can feel where it is tight and when it releases which makes it tingle slightly. Sometimes if something is seriously stuck, it may be a bit uncomfortable when sh works on it. This understanding also helps me figure out how to stretch things on my own which helps my PT get farther ahead during our sessions. I have also been through cervical spine surgery and ankle surgery for a fracture, and MFR has been a part of all of that recovery.

Here is our MFR discussion. The first pages have the most information in links which I started to catalog the topic. This isn't invasive; it's just physical therapy, and if this helps you improve without medication... wonderful. I also am a patient of functional medicine which tries to prevent problems by addressing the source of the problem and correcting biochemistry without drugs to treat symptoms. Does MFR sound like something you would want to explore?
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

I am new to this group so a little background. I have a sever narrowing of the neural foramen bilaterally, small diffuse disc bulge but no associated spinal canal stenosis but severe right facet degeneration. My neuropathy presents as progressive numbness and tingling in feet and legs. Feet now feel like bags of sand and I am concerned the progression is advancing quickly. I maintain a 45 minute yoga routine with some mild weights. I take 600 mg of gabapentin and am at 2500 mg of acetaminophen. Sadly, am not getting satisfaction from medical practitioners. I have learned more reading posts in this group than i have learned from neurologist or spine surgeon. COVID 19 has certainly affected access to these practitioners. Finally, I live in Canada. We can rave about our medical system until you need it. It is certainly nice to have easy access to original diagnosis but the government funding determines progress of therapy

Hi @dunkinmacdougall, I see that you were welcomed to Connect by @amandajro and @jenniferhunter in another discussion. I'm not sure you saw their welcome and response so thought I would provide a direct link to the responses here:

-- https://connect.mayoclinic.org/comment/615617/
-- https://connect.mayoclinic.org/comment/615661/

I have degenerative arthritis in my lower spine and I also have small fiber peripheral neuropathy but numbness and a little bit of tingling are my only symptoms. I do have some aching in my lower back that keeps me from walking much or very far. It's good that you are advocating for your health and learning as much as you can about your condition. That is probably the best thing you can do to help yourself and maybe allow you to find something that provides you with some relief. Here are my sources for learning more about neuropathy:

-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Google Scholar for finding most recent medical research information: https://scholar.google.com/

From my perspective, the U.S. is no better than Canada when it comes to the medical profession and research on neuropathy. I'm just a patient with no medical background but my experience is that only the symptoms of neuropathy are addressed and they do that with drugs. Since there are no drugs to address my numbness symptoms I started doing my own research to find something that helps me. I've shared my neuropathy journey along with other members in the following discussion that you may find helpful.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/