Severe neuropathy in feet and less severe in fingers.

Hi @stargate1965z. It’s so frustrating to not be taken seriously. With neuropathy the pain isn’t visible, making it easily dismissed by others except the person suffering! I only had neuropathy for about a year as a side effect from a medical adventure. But it was horrible and terribly disruptive to every day activities and wears a person down!

There’s a very active neuropathy support group in the forum. Here is one of many discussions where I think you’ll get a lot more feedback.
Here’s a link to the main group: Neuropathy:
https://connect.mayoclinic.org/group/neuropathy/
And one of the subgroups that might be helpful for you. Feel free to jump into any conversation and tag that person with their @name if you want to speak directly with them. Or click the blue reply box in the reply that you’d like to answer. Members will get a notification for that tag if they’re signed up to get them)
Living with Neuropathy.
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
Do you know what brought on the neuropathy? Medications or illness?

Hi Lori

Thanks for the forum links. I do follow a Facebook neuropathy group. I have diabetes and I guess I can attribute it to that. Yeah it’s sad that doctors seem like they either don’t believe it’s as bad as it is or just don’t get it. I have something that was posted to the Facebook forum that really makes it clear.

‘Hello, my name is peripheral neuropathy I'm an invisible disease that attacks the nerves anywhere and everywhere in your body damaging them and causing you excruciating pain.

I don't show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.

Others around you can't see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyway I please. And, I will. Constantly.

I can cause severe pain that makes you want to die.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia. I can cause you so much pain all night long that nothing can take it away.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Even if I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.

I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.

I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife, electrocuted you, constant electric jolts, stinging you, sawing at you, throbbing, cutting, aching, burning. I can make you believe you have had gasoline poured on you and lit with a match. I can make you feel as though you have a very bad sunburn when you haven't been in the sun. Making you look crazy is fun for me.

Some of my other inflammatory disease friends often join me, giving you even more to deal with. Such as fibromyalgia and diabetes.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons. Whatever the cause, I'm here to stay.

I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.

There are so many other ways I can make you sick and miserable, the list is endless - If your body is all of a sudden dealing with things that were never issues before...yep…. that's probably me.

You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating and how much I am hurting you and causing you to suffer and how ill and exhausted you really feel.

I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Even after explaining to those you interact with regularly that I’m the most painful thing you've ever felt and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.

The only ones who could even begin to understand the torture I put you through are others who suffer from the same thing. Be glad that you have them to commiserate with, at least you’re not alone.’

That really says it all!
Ryan

Wow that’s really long! ☺️. Sorry about that!

No worries! That was an excellent piece. It completely and emotionally sums up the experience and impact of neuropathy!

@stargate1965z
Do you have your diabetes and glucose levels under control? Are you being properly treated for diabetes by an endocrinologist? This will make neuropathy worse if not controlled. Have you tried compression socks to help minimize the sensations? What about nerve pain creams like capsaicin or those with lidocaine? Have you tried taking alpha Lipoic acid, acetylene l carnitine, magnesium and other supplements that help relieve some nerve pain? Have you ever been prescribed Cymbalta or Duloxetine which can help with nerve pain (and depression with chronic pain)? Do you have a therapist or psychologist to help you cope with chronic pain?

Hi stargate65 - I too have several hand and foot pain but have been given a different diagnosis. I’ve had to stop working (and am applying for disability) and my life has drastically changed. Anyway, just wanted to let you know some things I have tried and will try. I was already on duloxetine for depression, and the doctor increased my dose - not sure if that really helped. Gabapentin has helped some, and tramadol at night. I also do very deep breathing which at least helps with the anxiety that comes with severe pain. I’ve seen a podiatrist, who gave me corticosteroid shots in each foot and it helped for a while. I am hopefully about to embark on a course of TMS (transcranial magnetic stimulation) and possibly acupuncture. I’m happy to continue a discussion privately if you wish.

Hi lwmarcrum

I do take Gabapentin at max dose (3 pills 4 times a day)and Duloxetine @ 120 mg a day. I take Tramadol 4 times @ 50mg daily. But I actually only take 3 Tramadol because I take 3 at one time at night since it’s worse then. I take Trulicity once weekly. I’ve tried Lyrica but it didn’t work. I’m not interested in acupuncture and I’ve tried vitamin supplements here and there but not a lot. I’ve had this horrible, terrible, awful, rotten, miserable, crappy, sucky, dreadful, nasty, unpleasant, disgusting, mean thing for about 10 years. Sorry I couldn’t help using all those descriptions lol. I don’t really drink alcohol 🍷 much but it crosses my mind sometimes as in helping but I’m not really interested in doing that. I have tried medical marijuana but it gave me a headache most times. Ok talk later!

My glucose is probably not great. Compression socks, I’ve tried a few times but no go. I use a product called Nervive which works good for a bit and other times I use foot spray to help with the hot/burning sometimes and that helps some. No therapist or psychologist because I’m not interested in that plus only my wife works so that gets expensive. Thanks though I appreciate all the suggestions!