Dose anyone else feel like neuropathy is taking over their life?

I am sure you have tried everything, but have you tired Voltaren arthritis pain reliever?
I put it on my feet before I go to bed with a pair of socks and so far it has helped.
Good luck.
jack

All my doctors get frustrated with me because I don't want to try new meds. I've just had too many serious reactions from a number of meds. Sometimes they trigger long term issues. Sometimes my reactions aren't even listed as a possible side effect. My cardiologist once told me he almost reported my scary reaction to the pharmaceutical company. It was serious. Why didn't he report it? Did he not believe me? If he doesn't trust me then I don't trust him. That told me why the unusual reactions are not listed in warnings -- because no one reports them. He said he would ask the drug rep if my reaction was possible. It was possible because it's what happened. Asking the drug rep who makes his living selling the drug is like asking the fox if the hen house needs more security. I also resist surgical treatments for fear of complications. Bad experiences. I'm just always the unlikely exception. My oncologist said I wouldn't have the scary heart reaction to a cancer med, only 4% get it. I did. I told him of the scary reaction I was feeling. You're fine he says. Then he did an EKG as is protocol on this med and he had to eat crow and tell me I had the rare reaction that causes you to drop dead. He had to lower the dose. He said I wouldn't get a collapsed lung from a biospy, only 10% chance. I did. You won't get painful keloids scars from the mastectomy. I did. After another lung tumor ablation -- I think your post-op symptoms are normal. After a week of fatigue and breathing issues, xray showed I did have a partially collapsed lung -- again. The stories are endless from different specialists and conditions. My body just overreacts to everything. Afib is another side effect of one of my cancer drugs, but I don't want to be on meds after the last drug or have any surgical intervention. I believe meds will just lead to new problems.

I'm frustrated, but can also understand why my doctors get frustrated. I'm not ever a textbook case. Not every doctor likes a challenge. I'm sure many of you feel the same way -- always the exception to the rule. I go in, get a diagnosis (sometimes) and then I decline meds and procedures that may or may not work because I'm scared to try them. It seems I just want them to wave their magic wand and fix me -- that's safe. I get it, that's frustrating to a doctor. So, I usually end up not seeing various specialists anymore because we're at a standstill. Same situation with my neuropathy. Sometimes I'm just relieved when we have a diagnosis and then deal with it as best I can. Past that, I need a miracle. Best of luck to all of you in finding your perfect treatment for your pain. Can't wait to hear what it is!

I am experiencing remarkable lessening of neuropathy by eliminating burnt food. I toast me bread only long enough to heat the bread so butter will melt. I no longer cook food to the point of any burnt parts. Apparently the burnt food parts trigger the release of amyloids (substances that kill nerves). Also apparently once the amyloids (may be spelled wrong) are no longer in our bodies the nerves regenerate. I have noticed a significant reduction in my nerve pain in only 2 weeks. I want to do more research on this. Anyone know anything else about this?

Are you saying the spine stimulator did not stop the neuropathy symptoms? I am just about to have one implanted!! Which company did you use? Boston Scientific, etc??? Did you try ablation?

I am so sorry you feel so unwell with the neuropathy. I know this illness can make one feel so discouraged and helpless about every thing in life. I know, because I feel the same as you many times. I have neuropathy in both my hands and feet and while I am lucky not to have the pain the numbness and tingling in them is so disturbing. My feet are both dropped and with the neuropathy in them I am unable to stand or walk by myself now. I became a handicapped person overnight due to chemo.
I lost my independence and selling my car was a sad day for me. Three years later I am still dealing with the after effects of this illness. I have come to the conclusion that
nothing can cure this thing and the best we can do is to take it one day at a time and be grateful for family and friends who love and understand us. I am seventy five years old this month and nerves can take a long time to heal so time is not on my side. So just know, there are a lot of us out here who feel just like you do. In writing this, I hope it makes you you realize you are definitely not alone with all your feelings and difficulties with life.
Hang in there and write a note in this forum when you are feeling down. So many others will share their stories with you to make you feel better. Hugs
Tessie63

Hi @tessie63 that was a very sweet response. Thank you.

I’m sorry to hear about your issues with numbness and tingling. It must have been so hard to have to stop driving. I’m lucky I’m still mobile and driving. Numbness can be so frustrating. Just trying to turn a page in a book is so frustrating when you can’t feel the pages. Or you have an itch but can’t feel the scratching so no satisfaction.

Glad you have family and friends for support. Wishing you better days with all of this.

It’s nice to hear support from people. My neuropathy has taken over my life. I am also bipolar. The stress adds even more symptoms. I have lost my home and my car. I am blessed to have family to give me a roof over my head. I can drive but my reaction time is much slower for braking. My family drives me to where I need to go. I have just been denied social security disability after waiting a year and half. I have no medical insurance anymore. I feel like a burden on my family. I feel myself going into a deep depression with my bipolar. My prayers to everyone who is battling any medical or mental illness.

Oh yeah - I wouldn't wish neuropathy on a dog that bit me. If I could exchange my neuropathy for the worst possible case of poison ivy, I would do so in an instant.

"The true wretchedness, indeed - the ultimate woe - is particular, not diffuse. That the ghastly extremes of agony are endured by man the unit, and never by man the mass - for this let us thank a merciful God!"

Edgar A. Poe

Hi Ann - Yes, for sure - it is something I wouldn't have guessed in a thousand years could be so debilitating. Have you access to a physical therapist? Mine is a myokinesthetist who uses a number of machines (for want of a better word) to help with my P.N. I don't know the names of them, but anyone in that line of treatment work, would. One thing she does is apply deep tissue laser treatments to my feet and hands once every week. Medicare doesn't cover it ~ I have to pay for it but it works so well I am endeavoring to find a way to come up with the money (about $40. each session). Medicare covers laser therapy that is considerably weaker (and doesn't work for me) ~ in fact, the "machines" aren't even the same. It does not help with imbalance, but - wonder of wonders - my hands are actually usable again for small motor skills that do not require me to put pressure on them or handle heavy things.

A very unfortunate side effect of this disease we share is that one becomes less mobile for fear of falling, and therefore loses muscle strength in the legs. My P.T. recently acquired a platform with handbags that I simply stand on, with knees not locked, and it shakes at whatever intensity and length of time she sets it to. It also has program settings where the shaking is of random intensities. According to what she told me, 10 minutes (which is the maximum recommended) of using this device is the same as 20 - 30 minutes of treadmill workout. Presumably this is because your leg muscles work in response to the movement in order to maintain your balance. You don't walk anywhere - you just stand in place, and it does help with strength. Medicare covers it and I use it twice every week in her office (the second time in a week is not considered an appointment).

In addition to these things, I also use a device called a Scoop which helps with leg and core strength. You sit and pedal it but instead of up-down, it goes side-side. My P.T. loaned me one for several weeks to use at home --- a year ago I had to have a partial hip replacement and this was used in therapy for that. It helps with leg strength and flexibility, and is available for anyone to purchase. According to its website, it is about $250. I have not purchased one but if I had an exercise room or finished basement, I would.

P.N. has definitely changed my life forever from what I had envisioned, but I am grateful beyond measure for the options that are accessible, and for the blessing of the support groups that are available through Mayo. Keep searching for things you haven't yet tried - better yet, pray to God through Jesus Christ, that He would reveal what you need and show you how to get it.

It's me again - the word that was supposed to come up for the shaking machine was handle bars, not handbags! Spell-check comes through again!