Moderate neuropathy in both feet only 50 y.o.

Hi Chris (@mrsharky28). My fun began 3 years ago when I was 48, although mine is head to toes on my left side, jumping around, and progressing. My doctors gave up early and offered me only a pain clinic which I declined. Steroids will completely stop my neuropathy temporarily so also not diabetic in nature. I have been treating mine with any and every supplement that will reduce inflammation, which worked great for over two years but since has been increasingly harder to control. Hopefully you find answers and a treatment that works for you.

-Aaron

Good evening @mrsharky28, and welcome to Connect. First of all, my name is also Chris.....short for Christie. I am sorry that your introduction to pain on your left side keeps jumping around and progressing in severity. Can you explain that a bit more thoroughly? When you say jumping around do you mean just on your left side or from one side to another? I remember when my symptoms began on just the toes of my right foot. That wasn't too bad until my entire foot was numb and painful. I was concerned about being able to drive. In the last few years, the pain and numbness have also "attacked" my left foot and started their journey up to my ankles and onto my calves and knees.

Have you been using prednisone? What other supplements have you found helpful? I want to introduce you to @johnbishop who has numbness but no pain with his diagnosed SFN (small fiber neuropathy). He has great experience with supplements and may be able to add to your treatment options.

In these last two years, have you also developed any "tingle tangles" in your feet or legs? I am wondering if you have been asked to try gabapentin. What about sleeping......are you able to get enough rest at this time? Do you engage in any stretch Yoga or other exercise programs, e.g. walking? There is one yoga stretch called "legs up the wall" that I do every morning.......just to let my legs know I am ready to use them and expect their cooperation.

Would you be able to share with me the way in which your diagnosis was determined? Did you have a skin punch biopsy.....or EMG testing?

Finding answers that measure up to give you a positive quality of life is very important. This forum stands ready to help you as members commit to sharing experiences that may not help everyone......but just may help you.

When is your next appointment with a neurology specialist or other medical professional?

May you be safe, protected, and free from inner and outer harm.
Chris

Hello @mrsharky28, I would like to add my welcome to Connect along with @aaroncush and @artscaping. Hoping you will find some answers here that help relieve your neuropathy symptoms. My neuropathy journey is similar to yours in that it started in my late 40s with numbness in the toes but I let it go for a long time until the progression got worse. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/.

My best suggestion for you is to learn as much as you can about your condition and what treatment options may help. My two best sources for learning more:
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You might also find the following neuropathy discussions helpful:
--- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/
--- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
--- Ketogenic Diets and Pain: https://connect.mayoclinic.org/discussion/ketogenic-diets-and-pain/.

Hi Chris, I think the jumping around and steroids was my comment, not the original poster. It migrates from site to site, never just constant in one location so it could be my face (trigeminal nerve) or in my upper chest, or in my forearm, etc. Medrol (methylprednisolone) has been the drug used. Each time less effective than the last.

Welcome mrsharky28. My name is Alma. My PN started at 65 with symptoms similar to yours. I am now 73 and under the care of a neurologist. I have taken a multitude of meds throughout the years and presently I am taking Lyrica and using Voltaren gel. I also take Tramadol for severe pain and burning. I have accepted that this is not curable so I am trying to make it manageable. I take a good multivitamin, do regular exercise, try to eat a good diet with little red meat and work on my mental health. I feel my feet all the time but I engage my mind in something that makes me not think about my burning toes.
I don't know if this helps but I offer it. You are doing the right thing by starting to see a neurologist. It is important to find one who will listen to you and talk to you. Good luck and prayers. You were offered many websites to search. Do lots of research and learn as much as you can. Not everything will be the right answer for you but might give you a tidbit of information.

Hello mrsharky28,

I am 55. I can provide some insight about Peripheral Neuropathy with no harm to discourage you. But, I am a diabetic II since 2017 (after stroke) which was not known beforehand. My PN (feels as walking barefoot on broken glass) started approximately 2018 with my toes then affected my feet. They became tingling and numb but I just ignored it and thought it would just go away in time. I was deadly wrong!

Then, early 2019 is when PN start to escalate it moved upwards to calves and thighs then waist. Sadly, I became impotent and barely able to walk and painful nerve shocks started to occur within my entire legs. And I started to lose a lot of weight. I used to weigh 170 and weight shrunk drastically to 109 with severe PN and diabetes.

Initially, I visited emergency rooms, hospitals, clinics, neurologist, etc as PN became so unbearable and extremely painful ! ALL doctors and specialist only provided band-aids to help ease the discomfort such as gabapentin, juniva, insulin, deloxine, etc which was a waste of time and of course, lots of money. The ultimate cure was to amputate toes, feet, and/or legs. THIS IS ABSOLUTELY NOT AN OPTION AS I COULD NOT LIVE WITH IT !!!

I wear special shoes with cushions to help walk as I still do not feel my feet (tingling and numb) and barely my legs plus unfortunately impotent until this day. Now, I am insulin dependent as I check my glucose 3 times a day. I have short and long lasting insulin injections to help drop my glocuso especially when I eat and as far as PN, I ignore the discomfort and pain. And take rubbing reliefs such as Vapor Rub and Icy Hot, etc. and heavily rely on sleeping pills in hope I do not overdose on them....

To say the least, I constantly worry that these medical conditions will eventually get the best of me but continue to pray that I will be ok.

Please exercise and eat healthy!

Good Luck!

@mrsharky28 - I noticed in your post that you are a PT assistant so knowing how PN can progress could be an advantage when it comes to physical therapy. I have sensory motor neuropathy with no pain and bi-lateral drop foot and in the past 8 years, every neuro doc I've been to has told me that in my case, no cause means no cure. This applies to many of us, so you are not alone! I'm not diabetic but oddly enough, all docs drill me on that saying my symptoms are that of a diabetic with PN. My A1C is always around 100 - 105. I have been in and out of PT since 2017, now back in for balance therapy. Medicare caps at a yearly dollar limit which makes no sense. One important thing I've found out and that is exercise could be one of the best ways to slow down progression. Perhaps you can now put your knowledge to work to your advantage. Wish you the best!

@mrsharky28 - I meant to say that A1C is always between 5.7 and 6.0 NOT 100 - 105.

work with a pt specializing in neuropathy with home health or outpatient to do exercises 3x per day and maybe a half ppill of Effexor 2 x per day if not contraindicated with other meds you take-God bless you as I know how you feel dear-Mike storman

Thanks for the clarification. Don't know how I got that a bit mixed up.
Chris