Newly diagnosed with Neuropathy - Advice?

Posted by Janet @duh1eye, Aug 22 12:24pm

I’ve been following this very informative Neuropathy Support Group since April, when I began experiencing numbness in my feet, and paresthesia of my (mostly lower) legs. I didn’t want to post until I had a diagnosis, which I’ve just received: mild sensorimotor length-dependent large fiber peripheral neuropathy. Fortunately, my condition is mild, and likely slow in progressing, but as I go forward, I want to know about, and do everything possible to stay healthy, and to prevent further symptoms (don’t we all!). I’ve read, and have learned from, many of your helpful comments, but as being newly diagnosed, I would like to reach out to ask you what you wish you had known or done differently as you began of your own journey with peripheral neuropathy. I know this is a very broad inquiry, and each one of you has a different story, but it would be great to get any pearls of wisdom you may want to share. Thank you for your support!

Interested in more discussions like this? Go to the Neuropathy Support Group.

@centre - I read your comment to Janet and what excellent advice. We all think about what to do in the now but we don't tend to think about the future. That is, what can happen down the road. Having PN for about 9 years, I can relate to many of your suggestions. Throw carpets in our house came up 4 years ago when I tripped and landed flat on floor. I have grab bars in all showers and so on. Instead of being a furniture tapper, I now use a cane more than ever. Progression is part of PN and for me, that was difficult. Always been active. On this forum, I've mentioned many times to look at what you can do, not what you can't do. I practice that every day, and it tends to keep me positive. I also make needed adjustments along the way. It's part of having PN.

REPLY
@judyingenes

Hello…you might be responding to my post about making sure I do strengthening and balancing exercises every day. And I do DO them. I did not, however, say that I liked to do them, that they were easy to do, that they were painless, or that I did them with anyone else around to see me cry through the pain while I did what I need to do to keep me out of a nursing home or hospital. I want to do whatever I can…pain or no pain…to kick the can a little further down the road with my family. I just might make it to see the Green Bay Packers win another Super Bowl!!

Jump to this post

I certainly admire your tenacity and can do spirit. I CAN do the exercises. It's later in the day and the next day that does me in. My average daily pain level is 7-8. After doing 10-15 "girlie" push ups and 10-15 half squats, the pain will ramp up to a strong 9. Same experince walking a litlle or cycling a short distance.Thats with a pain pump and meds. I have to spend most of the next day lying on the bed, gritting my teeth to not give in to the pain. I try not to let my wife kanow just how bad it is, although I suspect she does know.

REPLY
@centre

Hi Janet- you’ll notice many members have mentioned dealing with balance issues. These early days are a really good time to think about all you can do at home to prevent falls, which can lead to drastic consequences.
Big and little changes- up with the throw rugs, install grab bars in the shower/tub area, install higher toilets, rearrange furniture so there are no wide expanses to travel without something to lightly touch if needed. I switched sides of the bed I sleep on as the other is a straight route to the bathroom, I put anti-skid socks on before I get out of bed, I changed how I go up and down steps by moving to one side for touch balance and always use a rail if one is there. I don’t hurry anywhere or anytime- my neuropathy leg will cause the toes to “catch” and down I’ll go. When I walk, it’s always top-of-mind to keep good form- “exaggerated heel strike “.
I take my cell phone everywhere in or out of the house just in case. After a bad fall while walking, at my brother’s urging, I got a “smart watch”. It will register a fall, printing on the phone face will ask if you need help, you tap yes and it calls the number you have pre-entered (nearby relative or friend), if no connection, it calls 911 and gives your location coordinates.
I find the hardest thing about neuropathy is accepting that this is your new life, there is no going back to what you could physically do before, but with courage, resiliency, and determination, a good life is there to enjoy.

Jump to this post

What an excellent list of suggestions ! I've had painful PN for about 12 years and it's taken me that long to discover many of the things on your list. I've aways been an active person so the last sentence really resonated with me. Thank you!

REPLY

There is hope also, you know. It turned out my foot pain was two broken feet! First one, then the other. Well, I got those fixed. Those falls for neurological problems can break our human parts, too. You don't need the extra problems. I've had severe numbness in both hands, come, and then go away. They are not all permanent pains. I can't say what made it go away, except likely it's in my spine. Overall, yes, I am getting older, and slower, with more wrinkles I can't get rid of. Over time, we have to learn and relearn how to live in safer ways in whatever one's "home" is. Whether it's a whole huge house, an apt, a room, or a trailer in a relatives back yard. I've downsized so many times I can't remember them all. This year, I got to upsize this time into a Senior's community (that I chose).

Lately, some generous relatives, and friends I've met through them, have blessed me with electronics I never would have bothered to get for myself. A better cell phone, a new TV again, a faster WIFI connection, a Fire stick (free movies and shows), etc. Last year, they gave me a special mattress for my old bones.

Most of all, find things to be grateful for, while your life changes. And if they are changes you chose, it makes it all a whole lot better to life with.

REPLY

Forget it, you are screwed. No cure, just try to keep moving and don't fall down.

REPLY

I'm in the same boat I'm 81 , I got out of bed one morning,but my right foot on the floor,got a very severe pain that Shot down my leg, could not walk,or put pressure on my leg, Got a walker,went to the VA the doc said I had Neuropathy , gave me a script for some yellow caps, some ointment,it's been 3 months ,Of HORRIBLE PAIN,The Walker Helps, but my whole life as changed,what can i do?+

REPLY

Stop ALL refined sugar. ALL. It is amazing!

REPLY
@kenny449

I'm in the same boat I'm 81 , I got out of bed one morning,but my right foot on the floor,got a very severe pain that Shot down my leg, could not walk,or put pressure on my leg, Got a walker,went to the VA the doc said I had Neuropathy , gave me a script for some yellow caps, some ointment,it's been 3 months ,Of HORRIBLE PAIN,The Walker Helps, but my whole life as changed,what can i do?+

Jump to this post

Hello @kenny449, I would like to add my welcome to Connect along with @grannyzoo and others. I saw your other post in another discussion that you are now taking almost 1000mg gabapentin a day and it doesn't help your pain at all, and you are also having a fuzzy feeling now.

If it's only one leg, I'm wondering if something other than neuropathy is causing your leg pain.
Is the severe pain only in one leg? Have you told your VA doctor about the fuzzy feeling side effects?

REPLY
@johnbishop

Hello @kenny449, I would like to add my welcome to Connect along with @grannyzoo and others. I saw your other post in another discussion that you are now taking almost 1000mg gabapentin a day and it doesn't help your pain at all, and you are also having a fuzzy feeling now.

If it's only one leg, I'm wondering if something other than neuropathy is causing your leg pain.
Is the severe pain only in one leg? Have you told your VA doctor about the fuzzy feeling side effects?

Jump to this post

I tried to explain that the pain starts only from my lower back on the right side ,comes around and settles in my quad and the pain shoots down my right leg only as far as my knee,no pain in foot or lower leg, waiting on getting a MRI,my doc says the pain is definitely coming from the nerves

REPLY
@kenny449

I tried to explain that the pain starts only from my lower back on the right side ,comes around and settles in my quad and the pain shoots down my right leg only as far as my knee,no pain in foot or lower leg, waiting on getting a MRI,my doc says the pain is definitely coming from the nerves

Jump to this post

It kind of sounds like sciatica pain.
"Sciatica refers to pain that travels along the path of the sciatic nerve. The sciatic nerve travels from the buttocks and down each leg. Sciatica most often happens when a herniated disk or an overgrowth of bone puts pressure on the lumbar spine nerve roots. This happens "upstream" from the sciatic nerve."
-- Sciatica: https://www.mayoclinic.org/diseases-conditions/sciatica/symptoms-causes/syc-20377435

You might want to check out some of the discussions on sciatica. Here's a link that shows the list - https://connect.mayoclinic.org/search/discussions/?search=Sciatica%20pain.

REPLY
Please sign in or register to post a reply.