1. < Neuropathy

Sudden onset of neuropathy

Posted by honghtt @honghtt, Feb 26 11:01pm

Hello everyone,

48 yo, F. About 14 days ago, I suddenly had tingling and numbness on my two feet. Then it quickly moved up to my hands. At night, my feet are burning, and muscles twitching. The numbness and tingling are constant. I couldn't sleep at night! My PCP said that I'm having neuropathy, prescribed me with Amitriptyline and referred me to a specialist. First meeting will be next Tuesday.

I'm totally shocked since this came all of a sudden. I'm not drinking and very active. I had gestational diabetes but my A1C has always been around 5.4-4.6. I had Graves disease which turned into Hypothyroidism after treatment. I'm taking Levothyroxine for the last 20 years and my hormone has always been in the normal range.

I'm totally shocked as this came all of a sudden. Initial bloodwork looks fine. No deficiency in any nutrients. I'm reading all of the stories on Reddit and they gave crazy anxiety. However, given all of the symptoms, I'm 99 percent sure that I'm having neuropathy.

I'm not sure what I'm trying to ask for here. I'll do all of the tests to find out the cause (if any). But I'm so scared, frustrated and sad right now. How can I get back to my feet and move on?

Hong

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raisanicole | @raisanicole | 6 days ago
In reply to @honghtt "Hi @raisanicole My symptoms are as below: - Constant numbness in my toes and fingers -..." + (show)
@honghtt

Hi @raisanicole

My symptoms are as below:
- Constant numbness in my toes and fingers
- Tingling and warm patches on my legs and arms
- Burning sensation in my feet, up to my ankles/ knees. It's worse at night. I'm taking Amitriptyline 10mg to help with my anxiety and the burn. I also use Lidocaine lotion and it does help reduce the burn
- Muscles twitching at night

Symptoms are symmetrical.

I was very active. I biked, walked, did yoga and lifted weights. These days I can only walk since my feet are so sensitive. I do have health anxiety.

Are you experiencing the same?

Jump to this post

So sorry to hear about your symptoms. Meant to ask you: are your symptoms happening everyday?

I do have health anxiety too. I've seen many therapists, they do not master it. Is there something that has worked for you?

REPLY
1 reply
honghtt | @honghtt | 6 days ago
In reply to @raisanicole "So sorry to hear about your symptoms. Meant to ask you: are your symptoms happening everyday?..." + (show)
@raisanicole

So sorry to hear about your symptoms. Meant to ask you: are your symptoms happening everyday?

I do have health anxiety too. I've seen many therapists, they do not master it. Is there something that has worked for you?

Jump to this post

@raisanicole

My symptoms are constant, sadly :-(. I've always been eating clean (low carbs and no added sugar), exercise every day, yet I don't know why this happens 🙁

Are you working? I'm working full time. I'm taking public transportation and walk from the bus stop to the office and back. Right now my strength/ motor is not impacted, but walking too long will cause discomfort underneath my feet :-(. I need to get a new pair of shoes!

Right now I'm taking Amitriptyline and it helps calm down the burning sensation and got me to sleep at night. I'm seeing a therapist for my anxiety but don't really benefit from it. Sigh...

REPLY
gregd1956 | @gregd1956 | 5 days ago

There is difference between injury of neuropathy (of something & where) or falling down (on back & legs/feet) or sickness (somehow) or families of decades. Many of us have reasons and what happened. For me, my feeling is not there in my rightfoot. I fell down from my rear-ends. That took me several weeks later. That causes me less feeling and falling down hits me - sometimes hitting the back of my head… it’s horrible.

Thx,
Greg D. @greg1956

REPLY
1 reply
scain | @scain | 4 days ago

I just today had my first visit with a neurologist and it took 6 mos. Wait to get in. She ordered extensive blood work and testing called NCS and EMG tests that you all may already have had. She also wrote a script for PT. She said there are a lot of causes for PN. Diabetes is number 1. Since I was diagnosed with diabetes 2 just over 18 mins. ago. I am not so interested in the why if it as the fix for it. I know it sounds simplistic of me and truth be told everything I've read about PN there doesn't seem to be a fix. Okay I will deal with the loss of some mobility and imbalance but I am so worried reading your posts and the literature the neurologist gave me that this might progress to the hands and arms. I mean at that point won't I need 24/7 assistance. Going to a nursing home us too much for me to even think about. Please let me know if you have experienced in hands and arms how did you function on your own? Really frightened now

REPLY
2 replies
honghtt | @honghtt | 4 days ago
In reply to @scain "I just today had my first visit with a neurologist and it took 6 mos. Wait..." + (show)
@scain

I just today had my first visit with a neurologist and it took 6 mos. Wait to get in. She ordered extensive blood work and testing called NCS and EMG tests that you all may already have had. She also wrote a script for PT. She said there are a lot of causes for PN. Diabetes is number 1. Since I was diagnosed with diabetes 2 just over 18 mins. ago. I am not so interested in the why if it as the fix for it. I know it sounds simplistic of me and truth be told everything I've read about PN there doesn't seem to be a fix. Okay I will deal with the loss of some mobility and imbalance but I am so worried reading your posts and the literature the neurologist gave me that this might progress to the hands and arms. I mean at that point won't I need 24/7 assistance. Going to a nursing home us too much for me to even think about. Please let me know if you have experienced in hands and arms how did you function on your own? Really frightened now

Jump to this post

If you have found the cause of your PN, in this case diabetes, controlling your blood sugar is the best bet to slow down the progress.

I haven't been able to see the neurologist yet. I'm sure the wait is very long. I'm still working full time these days even though I'm dead tired due to sleep deprivation. My arms and hands are tingling and burning, but I'm still cooking, doing light yoga. But you're right. The uncertainty of the future is what I'm terrified of.

REPLY
1 reply
honghtt | @honghtt | 4 days ago
In reply to @gregd1956 "There is difference between injury of neuropathy (of something & where) or falling down (on back..." + (show)
@gregd1956

There is difference between injury of neuropathy (of something & where) or falling down (on back & legs/feet) or sickness (somehow) or families of decades. Many of us have reasons and what happened. For me, my feeling is not there in my rightfoot. I fell down from my rear-ends. That took me several weeks later. That causes me less feeling and falling down hits me - sometimes hitting the back of my head… it’s horrible.

Thx,
Greg D. @greg1956

Jump to this post

I'm sorry to hear about your accident. I haven't got any infection or trauma, so my PN is a mystery for now. I'm very tired these days but trying my best to keep my chin up. It's gonna be a long road with lots of uncertainty...

REPLY
scain | @scain | 4 days ago
In reply to @honghtt "If you have found the cause of your PN, in this case diabetes, controlling your blood..." + (show)
@honghtt

If you have found the cause of your PN, in this case diabetes, controlling your blood sugar is the best bet to slow down the progress.

I haven't been able to see the neurologist yet. I'm sure the wait is very long. I'm still working full time these days even though I'm dead tired due to sleep deprivation. My arms and hands are tingling and burning, but I'm still cooking, doing light yoga. But you're right. The uncertainty of the future is what I'm terrified of.

Jump to this post

Thank you for your honesty. Even with no answers or advice for one another I think saying our honest feelings might be the best medicine that we can give right now

REPLY
egr651 | @egr651 | 3 days ago

I would ask your doctor about getting a skin biopsy for small fiber neuropathy! I have that condition and your symptoms sound like they fit. Using ice periodically has helped me reduce the intensity of nerve pain. Biofreeze has also been very helpful! I take gabapentin (nerve pain meds) and methocarbomal (muscle relaxer- as needed) and that has helped to significantly reduce the pain. Seeking out a pain psychologist/therapist might also be helpful.

REPLY
egr651 | @egr651 | 3 days ago
In reply to @scain "I just today had my first visit with a neurologist and it took 6 mos. Wait..." + (show)
@scain

I just today had my first visit with a neurologist and it took 6 mos. Wait to get in. She ordered extensive blood work and testing called NCS and EMG tests that you all may already have had. She also wrote a script for PT. She said there are a lot of causes for PN. Diabetes is number 1. Since I was diagnosed with diabetes 2 just over 18 mins. ago. I am not so interested in the why if it as the fix for it. I know it sounds simplistic of me and truth be told everything I've read about PN there doesn't seem to be a fix. Okay I will deal with the loss of some mobility and imbalance but I am so worried reading your posts and the literature the neurologist gave me that this might progress to the hands and arms. I mean at that point won't I need 24/7 assistance. Going to a nursing home us too much for me to even think about. Please let me know if you have experienced in hands and arms how did you function on your own? Really frightened now

Jump to this post

Hi! I have small fiber neuropathy in my entire body and while is it a huge pain (literally and figuratively), pharmaceuticals and holistic treatment can make a huge difference. While I am disabled, I am able to make a living, some things just take problem-solving. I don’t know if/how your condition may or may not progress, but hopefully I can provide some reassurance that even if it did progress, it doesn’t necessarily mean you’d have to live in a nursing home. 🙂 yoga, meditation, mental distraction, social connection, and nervous system regulation helps a ton! Learn your triggers and what calms your nervous system and they may help reduce pain levels

REPLY
1 reply
scain | @scain | 3 days ago
In reply to @egr651 "Hi! I have small fiber neuropathy in my entire body and while is it a huge..." + (show)
@egr651

Hi! I have small fiber neuropathy in my entire body and while is it a huge pain (literally and figuratively), pharmaceuticals and holistic treatment can make a huge difference. While I am disabled, I am able to make a living, some things just take problem-solving. I don’t know if/how your condition may or may not progress, but hopefully I can provide some reassurance that even if it did progress, it doesn’t necessarily mean you’d have to live in a nursing home. 🙂 yoga, meditation, mental distraction, social connection, and nervous system regulation helps a ton! Learn your triggers and what calms your nervous system and they may help reduce pain levels

Jump to this post

Thank you for your hopeful response. I do not work. I am retired and
turning 77 in a couple of months. I am taking a break from washing the
kitchen floor with a Swiffer. So I do some of my own housework. My partner
of 30 yrs. David still works full time so I am at home most days. The
neurology visit that I mentioned was odd. She did some cursory reflex
testing and had all of my medical records to review. But honestly I got as
much info on this site as I did from her. She wrote 2 scripts. One for NCS
and EMG tests and one for physical therapy. But then she told me to make a
follow up appt. With her for 6 months. Really? How invested can she be in
my PN if I am not even seeing her again for 6 mos? Yes I get it that I have
to be my own advocate but what are tge tests for uf we arent going to meet
to review? Yes I am frustrated but not giving in. I will go to PT and
hopefully get some more insight from the therapist and of course here. 😀

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