Let’s have a chat about what if anything works to improve your life wi

Posted by rybren @rybren, Apr 22 7:39am

Many if not all of us with idiopathic neuropathy have seen hundreds if not thousands of Dr’s for our neuropathy. So what really has improved your life? Be specific to help all. There are more companies selling us crap that they claim will help. Seems an honest discussion about what really has impact is needed. For me, I have stopped seeing specialist as it has not proven successful. Still see GP for Gabapentin RX.

So let’s get into the reality of what is working. For me it is not seeing more Dr’s. So let’s help each other with what has really worked for you so we can all learn. Maybe we can find some comfort for all.

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

cb3 | @cb3 | Apr 28 10:59am

In reply to @rybren "I tried many if not all of the vitamin and supplement “solutions” for two years post..." + (show)

Nah. I'm not going to take it anytime soon. It's not more expensive than what I'm taking now for 900mg ALA. If you read the reviews, they're not bad. I have a hunch, but I'm not sure, I think this new group is giving Andew Lessman a run for the money in competition. < grin>

What do you mean you use a "tens like device"? What is that? OOPS! I just did the google and found it. I've never heard of such a device. Does it give immediate relief and how long does the relief last, approximately?

NJ Ed | @njed | Apr 28 1:05pm

@cb3 You are right and after 75 years, I'm finally starting to listen and pay attention as well.

cb3 | @cb3 | Apr 29 5:21am

In reply to @njed "@cb3 You are right and after 75 years, I'm finally starting to listen and pay attention..." + (show)

Well, Ed, I think we are finally growing up. < big smile> Hugs

rybren | @rybren | Apr 29 7:13am

In reply to @cb3 "Nah. I'm not going to take it anytime soon. It's not more expensive than what I'm..." + (show)

I have been using a device that allows electrical impulses to be applied. I use it with cold water, you can use warm water if better feeling for you.
It relieves my symptoms for awhile allowing better sleep. It takes about 30 minutes. It is the only thing that seems to work. Been using for 3-4 years every night.

Nerve generator, in the context of neurostimulation, is a small, battery-powered device that delivers electrical impulses to specific nerves to treat various conditions like pain, seizures, or sleep apnea. It's a component of neurostimulation systems, which also include leads or electrodes that carry the impulses to the target nerve and a control device for adjusting stimulation parameters.

rainyb91566 | @rainyb91566 | Apr 29 10:31am

In reply to @sporty "Does the pain ease when you get moving after a few minutes?" + (show)

Movement significantly reduces my pain, although the numbness persists. Sitting upright with my feet flat on the floor also provides some relief, though to a lesser extent. However, lying down exacerbates the pain to an excruciating level, making sleep nearly impossible.

To manage these symptoms, I currently use medical cannabis edibles and diphenhydramine (Benadryl), which allow me to obtain a few hours of sleep each night. Often, I am only able to sleep while seated upright at the side of my bed, supported by pillows, with my feet flat on the floor.

andyjustin | @andyjustin | Apr 29 12:53pm

In reply to @bobrogers "I agree the doctors are not giving us any hope whatsoever I can’t believe that we..." + (show)

I have AN autonomic neuropathy. It’s a neurologist, endocrinologist, and at the end of the day my primary care doctor made it clear. This is your new normal. There are no cures. I’ve given up on looking for them. I’ve given up on other doctors or more doctors that matter is in the current state of affairs, there is no cure each of us have to learn how to function and make choices regarding supplements painkillers. The best choices is live a healthy lifestyle I personally have my blood work, checked every three months to make sure I don’t have any vitamin deficiencies or other elements that might show up in blood work, but besides that I and we do the best we can. There is no simple victory, but we have to keep running the race

scain | @scain | Apr 29 9:24pm

In reply to @leicia "Can you tell me what symptoms you have? I have fuzzy feeling in fingers and feet..." + (show)

Okay, I have peripheral neuropathy in my feet and up to my ankles. I wouldn't describe it as pain but more numb and sometimes my toes actually feel webbed (not that I have had webbed feet but it is that feeling). I am not sure what you mean by fuzzy. When I described the sensations to my neurologist as pins and needles, she corrected me in that pins and needles means pain but restless legs or feet is a different feeling. Tricky to describe to you but I would read some of the posts from others when talking about peripheral neuropathy and see if any of those posts describe the feelings that you are having. Good luck. Not easy to pinpoint, treat or deal with!!!!!

Mafalda | @mafalda | Apr 30 3:25pm

In reply to @bajjerfan "Has anyone had success from someone who offers chiropractic based treatment for neuropathy? Does your neuropathy..." + (show)

a good physiotherapist could help!

Mafalda | @mafalda | Apr 30 3:30pm

In reply to @kathieb48 "I also have gotten little help from my neurologist. When I asked what tips she could..." + (show)

Exercise, Exercise, and exercise! it brings your legs strong again!

cap5457 | @cap5457 | Apr 30 5:22pm

In reply to @mafalda "Exercise, Exercise, and exercise! it brings your legs strong again!" + (show)

I totally agree…..
We have to keep moving as much as physically possible. I do my best to keep the legs & feet engaged. Took a 3 mile trail walk today. Yes my feet are hurting a bit now. But I’m determined to keep moving. PN does enough damage & contributes to muscle lose.