Living with Neuropathy - Welcome to the group

Just found out about this group. I have Charcot-Marie-Tooth and would love to compare notes if anyone else has this condition. Mine is Late Onset Type 2. Thanks much.

Im Allison and I’m here because my feet are numb and they say it’s because of the beginning hs of type 2 DN

Allison. same here. I have neuropathy in both feet 24/7.

I have neuropathy in both feet. It began in 2007. No cause is known. Tests show it has not severely progressed but overtime it became worse for me. I began Gabapentin in 2020 and I take 400 mg of alpha lipoic acid each day at my neurologist’s suggestion. I have also found a calming effect using Biofreeze over the counter. I can have some pain as well as numbness. But I feel my feet are now fairly calm. Gabapentin made them stop “talking” to me constantly.
I basically try to think it is not the worst thing a person could have. On rare occasions I take an approximately ver tge counter genetic pain relief at night.

Gabapentin has been a big help to me along with magnesium,

I have neuropathy which is getting worse lately. Does anyone out there have good exercises to help with circulation. Also what medications are everyone happy with in helping with the burning and coldness in their feet, if any. Also having trouble with walking and balance lately. Any recommendations or info to help with this situation ?

I have liver disease and kidney disease from a medication I was given. I have 3 types of Neuropathy after being in a coma for a month when my liver shut down. As a result I have and others with Peripheral Neuropathy and more. I had a brain MRI last week and I was told I have damage to the globus pallidus which will only get worse even with a transplant. I have lost most of my balance as a result. I have been told even with a transplant this can get worse. Short detail I am numb from my neck down but I have Peripheral Neuropathy and 2 other types. I can feel my muscles and bones however. I have muscle wasting as a result of liver disease as well. The pain in my legs starts at the center of the bottom of my foot and goes up my legs. I am woke up and must stand up to help. I take Gabapentin and Tegretol for the shaking I have. It is like the symptoms Parkinson’s patients suffer from so I begin therapy with the Parkinson’s patients soon. I see a Neurologist, Movement disorder Neurologist etc. I didn’t have the muscle and nerve biopsy because my health is not good enough. Do you have any brain damage as a result as well? My ammonia levels are high despite Lactulose and Xifican so this is one major cause of the brain damage. I could start another treatment with Neomycin and another antibiotic but my kidneys would get damaged. Kidney damage or brain damage I pick kidney damage.

Good evening @pinkton, My goodness, it has been quite a while since you posted here on Connect. Welcome back....nice to hear from you. You know....neuropathy has a way of getting worse. There still is no cure for this condition. However, there are some medications and treatments that can help you cope with the progression of pain and movement issues.

Let's start with exercises. I have a PT from the Mayo Clinic who helps me with the appropriate exercises that keep me moving without the risk of falling. They are not too difficult and can be done at home. The site for selection by my Mayo PT is called Medbridge. Basically, they help you improve your stability and avoid falls.

I also do some "wake up" Yoga daily except on Tuesdays when I participate in an hour of Yoga class with lots of stretches. I have been with my teacher for about 8 years and she is simply amazing. On Thursdays, I do an hour of mindfulness meditation with the same instructor. I then spend about 20 -30 minutes on other days practicing meditation on my own. I don't think I can emphasize enough how these activities, Yoga and Mindfulness. prepare me every day to battle my SFN (small fiber neuropathy).

Have you been browsing through Connect even though you haven't posted for some time?

You may want to investigate MFR (myofascial release therapy). Here is a link to that section on Connect.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I now have two sessions a week, with two therapists. I would not be able to drive my car or walk along the river without MFR.

What medications have you found to be helpful up to this point? Have you discussed the need to address this subject with your clinician or other medical professionals? For me, this is really a challenge. I have never been one you would call a pill popper and I have had lots of negative reactions over the years, especially after surgery.

About 10 years ago when I received my SFN diagnosis, a couple of friends who are nurses took me under their wing and taught me how to select and use medical cannabis. I now use different dosages and components during the day and at bedtime.

As you know.....we are all so very different in our reactions to medications. I try to stay on top of the treatments and medications I need in order to cope with increasing levels of pain and discomfort.

Please let me know if any of these suggestions are helpful.
May you be free of suffering and the causes of suffering.
Chris

Hi Chris, I am not a pill pusher either, so I do not take any medication for my neuropathy, although I have been prescribed several along my journey. I started having problems in 2011, when one day my legs and feet blew up like balloons. I think I should look into cannabis too, does it help for you ? I would be interested as to what brand you use and what doses. If that would be something you would care to share in a post. I’m trying different exercise to combat my balance issues. My feet are numb pretty much all of the time at this point, so if you have this issue could you tell me what you do.
This condition is very frustrating and I hate it, so any help or tricks would be very useful to me. I may not beat this, BUT I’m not giving up !!
Thank you for responding.........

I had chemotherapy for breast cancer 30+ years ago, and was later diagnosed with PN. Is that the cause of the severe lower extremity cramping? I take meds for RLS, but nothing for the PN. I’m also beginning to get hand cramping; its all very frustrating.