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. 😊

Oh dear, I forgot to write the words, "to my neurologist" how about the link I sent to her that someone posted. Sorry if it was confusing! I'm really talented that way LOL!

Take Care, 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?

I am taking my first magnesium pill tonight. Don’t want to get my hopes up. It’s 250 mg I think

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?

Good evening @orffehc44. Greetings and a huge warm welcome to Connect. We are your neighbors and family friends without medical credentials. Our experiences are our own, to be shared with others who ask for help, support, and information.

You have had a bumpy road to your diagnosis of small fiber neuropathy. The fact that your neurologist sensed that it was time for the skin biopsy was a bit of good luck. Many of us wander around for years searching for answers.

Your gabapentin dosage of 1500 mg. Is that at one time or morning and evening? Gabapentin was my first medication. I couldn’t handle it during the daytime so we switched to bedtime. I have also modified the dosage over the years to 900 mg as I found effective alternatives.

Is the burning in your peripheral appendages, e.g. arms, wrists, hands, and legs, ankles, and feet? How would you describe your discomfort? Tingling, Pin pricks, numbness or what you call burning. Do you awaken with discomfort? Are you sleeping well now with the gabapentin?

You mentioned that you want to know how humidity affects SFN. I think that what you are experiencing is a lowering of the barometric pressure. If it is 30 and above, you should feel better. If it is around 29, sometimes you just feel like you are dragging your body around and everything hurts.

It would be helpful to know a bit more about you and your lifestyle. We have some typical journeys that folks have been willing to share. Post back and I will look for some with helping potential.

May you be free of suffering and the causes of suffering.
Chris

Hi Hank,
I know exactly how this feels. I have pain that keeps me awake, and when I won't go to bed until my body gets exhausted that's when I will climb into bed and pass out, when it's time to get up (it feels like I'm being pulled from a deep sleep) I don't feel or move, and I fall back to sleep again (when I think of the time of the day it might be, I pull or have someone to pull me into a sitting position), I pray that I don't wake up, but once I'm awake I thank God that I can be with my family no matter how much pain I'm in. I'm thankful for my family for helping me when I feel low about myself.

@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

@bustrbrwn22 @jimhd
bustrbrwn22, I private messaged you back in response to yours to me. In it I mentioned my friend Jim here and I am glad you guys are getting to talk to one another. Jim is a tremendous resource in our community for discussions regarding touchy subjects like mental health and depression as well as opioid use. I am happy to be among you people, I'm really thankful for Connect and I am happy for you guys to "connect".

Jim, really great to hear some of the ways you go about dealing with suicidal tendencies. I hope others can cue off of these tips for themselves. I'm continually blown away by you.

Best, Hank

@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