Living with Neuropathy - Welcome to the group

Hi Cathy, welcome to the group! I am certain that you will find caring, wonderful support and great information here on the blog as I myself have.

My neurologist recently prescribed ALA for me to and I am taking 600 mg once a day. I do not feel my pain is any better. My neurologist said I could increase it and have been thinking about doing that.

Recently there has been discussion about which type of ALA to use and I sent this link someone posted from Oregon State Linus Pauling Institute Micronutrient Information Center about which type of ALA is best: https://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid

Here is her response: "Most of the research that was done on alpha lipoic acid that showed benefit was done on the S-ALA/R-ALA mixtures. I did try to look to see if there were any studies comparing taking R-ALA only to S-ALA/R-ALA mixtures, but I could not find any."

So I had just ordered the R-ALA from Amazon and will use that but switch to the S-ALA/R-ALA mixture next.

I 'm just wondering how much more to increase it to be safe but yet accomplish less pain. Probably 600 mg twice daily. Of course since I am on so many medications and so many supplements, I will run it by my pharmacist like I do with every new thing I add to my regime because I have learned over time that some of my supplements do in fact have the potential to lessen or increase the effect of some of my prescriptions.

How long did it take 2 work for you? And, in your understanding, is this something you will have to increase in dosage overtime?

I wish you all the best and especially zero pain!

Warmest regards, Sunny flower. 😊

Thank you Colleen. I was diagnosed in July with small fiber neuropathy and don’t know anything aboutitexceptit burns like hell. I became ill in February and was first diagnosed with gastroparesis, then after about a month the burning started and they thought it was related to the new meds I was on for it. I wound up in the ER 3 times in one week because I could not stand the burning. I could not sleep and it literally was driving me insane. After seeing a few doctors I finally was sent to a neurologist where he did some nerve tests and a few skin biopsies from my leg. That was what nailed the diagnosis and I was put on gabapentin. I’m still trying to figure out the right dosage and just increased to 1500 mg a day. The side effects only seem to last a few weeks. The most annoying one is if I am talking for a long time all of a sudden my mouth stops working for a minute and I have to take a minute and then start talking again. I am hoping to learn more about my condition and how to relieve it. One question I have is does humidity make the burning worse?

@jimhd @bustrbrwn22
Life, for people in pain, constant, relentless pain, is an endless no-win struggle. Having been there once in my life only, I can nevertheless remember the sense I had of feeling I had no options, nowhere to turn for relief from my emotional pain and depression, it dogged me every day, daytime and nighttime. The only escape I got was my 12-14 hours of sleep each night. It's strange, normally I would feel like I wanted to continue, wanted to make it to the next day. But then I had a few nights where I was not so sure (but, I never actually acted, somewhat because I wasn't sure how to procure a gun, thinking that was the way to do it). I do not envy someone in that mode. But to you two in particular I would say, simply, remember you have friends here who want to see you on that next day, want to know your struggles as much as you can reveal. I remember the one thing that kept me from the brink when I was the closest was thinking about how I would not get to see my little sister again, her sweet face. That pulled me back I think.

I am not presuming at all that I can say anything to help someone who is on the brink. I nevertheless do care. Hank

Dear Precious Jim, thanks for sharing this. I am so sorry to hear of your horrible reaction to Lyrica!! It doesn't comfort me to hear the doctors say that some serious reactions to medications are rare. Did they say your adverse reaction to the Lyrica was because of another drug you were already taking?

It is very common for someone who has had a failed suicide attempt to think the exact same thing you did when you woke up. I'm so sorry for what you've gone through and the battle you fight each day.

Jim, do you have a "no harm" contract in place? I'm sure you know what that is yes? I hope you do and that you will honor it.

Jim, I am not a licensed therapist nor authority on the your situation. I can only share what I've learned working in the field of mental health and what my own experience has been.

I know you already know that evidence indicates that brain biochemistry is a significant factor in depressive disorders. I interpret this as being your mental health issues that you struggle with, are not your fault. My prayer is that you would no longer blame yourself for your situation.

I wish you God's comfort and peace through Christ, that I experience in my daily mental, spiritual and physical battles. It is His incomprehendabl love that carries me through the many fires we humans walk through while on this earth. You'll be in my prayers. You are a blessing to all of us here on Connect! You really are!!!

You have had victory over many of the battles you've fought and that alone is an inspiration! Deeply caring and warmest regards, Sunnyflower

@sunnyflower @bustrbrwn22 @jesfactsmon

Thank you all for your concern and encouragement.

@sunnyflower. The reaction was just related to Lyrica, and everything went back to normal after being off it for 2 days. That's the first time anything like that has happened to me. When I start a new medication I'm aware of the effects they have the first few weeks - usually cognitive deficit and maybe drowsiness - but as my body adjusts to it, those things fade away.

My way of dealing with suicidal thoughts: I think about how it would impact my wife and family; I tell myself I will stay safe until...whatever goal I have, usually an upcoming visit with our kids and grandchildren; I promise myself to put the thoughts on hold until tomorrow.

Hank, I've never owned a gun, which is probably a good thing, since that's the most common method for men. Pills are usually readily accessible for me, so that's been my mode. @bustrbrwn22. 200 sleeping pills! Someone found you? I'm sure that's why your doctors don't want to prescribe narcotics for you. They care about your safety. Have you ever been able to set goals for staying alive? When I started doing that, I could only project to one day, and after some months of that I could do a week, and so on. Being able to set a goal 6 months out was a big accomplishment.

I know that when neuropathy pain got bad it affected my depression and suicidality. There's an ongoing link between pain and mental ill-health for me. I talk with my therapist about that often.

Gotta quit for tonight. Thanks again, everyone.

Jim

Hello everyone, my name is Laura and I'm in need of help and understanding of Neuropathy. I know it comes in different ways and it causes different problems in everyone. I went to my doctor today for pain in my stomach area, and the doctor put me on gabapentin 300 mg for right now and raise it after two weeks to see if that helps with pain. My main concern is eating and doing exercise.
I get pain after I eat any kind of food, so in order to not have pain I don't eat. Then there is exercise...if I try to gather things up from the yard, floor or reach to the bottom drawer like I'm trying to touch my toes mutable times I get pain with bulging of the muscles / abhisions from mutable surgeries is causing me lots of issues. It's getting to the point to where I want to sit in a corner and never come out. I even had a doctor tell me it's chronic pain to where my brain is making excuses to why I can't eat so I have to force myself to eat.

I hate taking medication because I don't want to get addicted to them like my family/friends are addicted.
Drugs and alcohol runs through my family.

Is there any help for me, or is this something I have to learn to deal with?

@david33
Laura, I want to extend a warm welcome to you. Everyone here knows plenty about neuropathy generally and pain specifically. First I must say that you are way over my pay grade for giving out help, I care for my wife who suffers peripheral neuropathy (PN) pain in her feet. It sounds like your pain is primarily in your digestive areas? How did you find out it is PN related? Did you get a diagnosis. What were your multiple surgeries for exactly?

Maybe you could start at the beginning and tell your story from there, how it all started, your dealings with doctors, what medicines have you taken previously, who you have in your life for support. Lay it all out from the start up until now. Then people here will have a better picture of what you are dealing with and will be able to give their 2 cents worth to you. Some of the advice I seen given out here has been nothing short of incredible and right on.

I am very sorry for the agony you are in right now. I hope you receive help. Best to you, Hank