Sudden onset neuropathy and scared

Thanks, you’re right on the shoes. I’ve been wearing an older pair of New Balance that are not as cushioned as they once were. Doctors have told me that damaging nerves from outside takes a major accident and not just walking but I have experienced additional numbness in both feet from walking. I have also ordered a pair of OrthoFeet shoes with orthotics. Hopefully those will make a difference. Many thanks!

My theory is that alleviating the pressure on the feet allows the small regenerating nerve fibers to heal. Just a theory! Wearing the right shoes certainly allowed me to turn a corner in my recovery and also function at work. Otherwise, I would be awake much of the night with nerve pain. I don't use my custom orthotics, which are too hard. I insert Dr. Scholl's massaging gel insoles on top of the heavily padded insoles in the SAS shoes. I have placed cashier's mats underneath the kitchen and bathroom sinks where I tend to stand for longer periods of time. Kohls.com has a good selection of stylish cashier's mats. It took me a year to learn these tips. I hope they help you!

Hello @formerfisherman and those who posted replies. I came across your posts and was wondering if you could update us on everyone’s progress. I am in another forum on Blood Cancers as I was diagnosed with MGUS in 2021. I have had occasional mild numbness on the bottom pads of my feet and toes and a burning feeling in my feet since 2020 but I kind of chalked it up to the fact that I walk 3 miles every day and I am almost 70. However, just in the past 6 months something has changed and the peripheral neuropathy is moving half way up my right leg and in my right hand. I saw a neurosurgeon last year who could not find anything in my brain to cause issues but did find degenerative and bulging discs in my neck. I already knew I have this problem as well in my lower spine along with scoliosis and a recent diagnosis of osteoporosis. While the intermittent numbness is not affecting my balance or mobility, I am finding that there are other strange symptoms occurring such as digestive issues, worsening insomnia, fatigue and twitching in my right hand under my thumb that is interfering with my sleep. Very scary when we cannot understand what is happening in our bodies. I am scheduled to see the neurologist again on Tuesday and my GP scheduled me with a Rheumatologist in Dec but that’s a long wait…. Thanks to all and you are all in my thoughts and prayers.

I know how scared you are feeling. I now have neuropathy in both feet and it started just out of the blue. I have no health conditions, have always been a runner and I teach exercise for seniors and I am baffled. The doctors say I must live with it. I have found my meditation practice has helped me enormously. To be able to quiet the mind and the ridiculous wanderings of what could happen in the future is so torturous and useless. If I can help you in any way please let me know.

Janet thank you for sharing this. I too was in great health and very active with dancing and hiking, snorkeling, kayaking... and then out of the blue I had tingling in my left foot. Which in seven short months has spread to all my extremities, shortness of breath and feeling wobbly (kind of like in the past just in January when I would stand on a Bosu ball at the gym to do my weights). I was diagnosed with small fiber polyneuropathy, probably idiopathic. So, having worked for 10 years as the director of social work in a physical rehab hospital - you guessed it, my profession has me in overdrive thinking "I need to get a ranch house before it gets worse. I need to get a grab bar for the shower - I'll find a fashionable one. I wonder where I can find a fun fashionable cane." And "oh no - what if it's autonomic! And what if my neurologist didn't get this diagnosis right?" And I am awake at night worrying. Of course I'm not even physically at that point yet, or maybe never! So my question is - how do I find a meditation instructor? And is there a particular type of meditation that I should practice?

I am so sorry you are going through this. I find it comforting that there are others on this site who are experiencing similar things, have some thoughts, share their experiences and coping strategies - and we have the support to know we are not crazy! It's challenging to have an "invisible" condition that our friends may not understand, or even believe! I'm grateful that my physicians have not chalked this off to being "all in my head" as I too have a history of depression and anxiety. I hope you have good physicians too.

Hi Robin. I feel that we have so much in common. I know how the thoughts can get away from us. Fear is the biggest hurdle we face. All of the other details we can handle. We can not get lost in the "what if's" of this condition, or any chronic condition, this is why managing our thoughts is crucial. The mind should be our servant, not our master. We are the master. Yes, I can share some information with you but I'm not sure what I'm allowed to say on this format. It's the first time I've done this kind of communication. I would suggest mindful meditation and visualization technique. Feel free to write to me if you would like. janwebb23@yahoo.com

I also developed neuropathy in both feet and lower legs out of the blue. I too was worked up for everything and my neurologist believes that it’s possibly an auto immune situation so I’m now being worked up by a rheumatologist. I do PT and acupuncture. I’ve had it now for nine months and have sort of learned to live with it. The only time it does not bother me at all is when I sit in the car or when I drive which is really weird. I have no pain just numbness

@janetlee23
Meditation can be of great value with pain, stress and other medical issues. I am so sorry to hear you now have neuropathy! Having your physician tell you that you "must live with it" is appalling.
May I ask did your physician do any testing to have determined the diagnosis of neuropathy? Did they prescribe any medications for the neuropathy. Have you seen any specialist such as neurologist or peripheral vascular surgeon for a second opinion? Please be your own advocate and do your own research, today you don't just have to live with the pain and other difficulties that neuropathy brings to us. It took me over a year for me to get a final diagnosis and as a provider myself I continued to badger my primary care physician until I was referred to a neurologist of my own choice. Healthcare is a very difficult world and again your must be your own advocate......Please keep us updated
Kim

Thank you so much for all of your great advice and understanding! Yes. I have had all thr testing. I have seen 2 neurologists and a podiatrist. I have been prescribed gabapentin( which was useless). I work with cancer patients so I talk alot about being your own advocate and not settling. I continue on with my research on neuropathy and although it seems like this is a condition with little known new discovery I will March onward. I'm looking into Loma Linda research and have set up a phone interview with their neuropathy center next week. I teach meditation and visualization for a non profit.