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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

helennicola | @helennicola | Sep 10, 2020
In reply to @mayofeb2020 "@helennicola. Yup. That's me. At least it doesn't bother me when i sleep. I am a..." + (show)
@mayofeb2020

@helennicola. Yup. That's me. At least it doesn't bother me when i sleep. I am a side sleeper and i can't sleep on the side with the bursitis. I've done and used all the stuff you mentioned. Hope my ortho doctor will help. I'm not into shots but I am willing to take it if it will give me some relief....

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mayofeb, sleeping is when it bothers me the most, right side, left side or back sleeping all cause pain which I can’t figure out. Sitting is no problem, walking for more than 2 hrs. causes discomfort. I’ll let you know how I fare with the shot which I’m not sure when that will be, maybe another week. This also seems to be idiopathic as it began suddenly for no apparent reason! Helen

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Hank | @jesfactsmon | Sep 10, 2020
In reply to @jesfactsmon "@avmcbellar Great Toni, just be careful not to use too much in a single cup, it..." + (show)
@jesfactsmon

@avmcbellar Great Toni, just be careful not to use too much in a single cup, it is strong. Hank

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@avmcbellar Toni, Linda just pointed out another tip she wanted me to tell you. She says to sip the Shifa tea, don't drink it fast. If you sip it you will extend the relief out longer. Best, Hank

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avmcbellar | @avmcbellar | Sep 10, 2020
In reply to @jesfactsmon "@avmcbellar Great Toni, just be careful not to use too much in a single cup, it..." + (show)
@jesfactsmon

@avmcbellar Great Toni, just be careful not to use too much in a single cup, it is strong. Hank

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@jesfactsmon Hank, thanks for the tip. I will be careful. Not concerned with the taste. It will be arriving next week. By the way, I felt more energy when I was taking 600mg ALA instead. I have noticed an increase in burning pain from the neuropathy while on the 300mg dose. This morning I went back to 600mg with food. I waited one hour later to take 1200 mg ALC with food again. So far I am free of digestive burning. You mentioned ALC gave you an energy boost. Have you tried a higher dose of ALA? I had read for neuropathy need a 600 mg dose. It makes me feel better anyways except for when I get the burning in my stomach, lol. Overall the 600mg ALA gives me more energy. We are all different. Won’t know until we try. Toni

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Catcando | @catharbert | Sep 10, 2020

My name is Cathy and I am new to this group. I have been reading the posts that talk about ALA and wonder how you know what the dosage should be. Have you discussed taking this supplement with any doctor? I am kinda scared about taking something not prescribed specifically by a physician familiar with neuropathy. I used to take several supplements but none of them seemed to have any effect at all. I would be very glad to hear how some people got started with ALA and the amount of improvement they feel it provides. Thanks for everyone's contribution to this blog. It is very informative and comforting.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 10, 2020
In reply to @catharbert "My name is Cathy and I am new to this group. I have been reading the..." + (show)
@catharbert

My name is Cathy and I am new to this group. I have been reading the posts that talk about ALA and wonder how you know what the dosage should be. Have you discussed taking this supplement with any doctor? I am kinda scared about taking something not prescribed specifically by a physician familiar with neuropathy. I used to take several supplements but none of them seemed to have any effect at all. I would be very glad to hear how some people got started with ALA and the amount of improvement they feel it provides. Thanks for everyone's contribution to this blog. It is very informative and comforting.

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Hi Cathy @catharbert, I take R-ALA 600 mg twice daily along with other related supplements for neuropathy. I think it's always best to talk with your doctor or pharmacist before starting any kind of supplement. I ran mine by my doctor who sent them to a Mayo pharmacist and was told there shouldn't be a problem with me taking them. The pharmacist did say he thought the Omega 3/6 supplement I was taking was a little high but it should be OK.

Here are some links with ALA research you might find helpful.

Critical appraisal of the use of alpha lipoic acid (thioctic acid) in the treatment of symptomatic diabetic polyneuropathy
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3176171/
Linus Pauling Institute » Micronutrient Information Center - Lipoic Acid: https://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid
Linus Pauling Institute » Healthy Aging Program - Aging, Stress Response, and Mitochondrial Decay:
-- https://lpi.oregonstate.edu/research/hap/aging-stress-response-and-mitochondrial-decay

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1 reply
helennicola | @helennicola | Sep 10, 2020
In reply to @catharbert "My name is Cathy and I am new to this group. I have been reading the..." + (show)
@catharbert

My name is Cathy and I am new to this group. I have been reading the posts that talk about ALA and wonder how you know what the dosage should be. Have you discussed taking this supplement with any doctor? I am kinda scared about taking something not prescribed specifically by a physician familiar with neuropathy. I used to take several supplements but none of them seemed to have any effect at all. I would be very glad to hear how some people got started with ALA and the amount of improvement they feel it provides. Thanks for everyone's contribution to this blog. It is very informative and comforting.

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Hi Cathy, my neuro did not prescribe ALA, I had started taking it 600 R-Ala 2x day after doing some research on my own. I have found if definitely helps with the pain and there are no side effects as far as I know and many benefits other than for neuropathy. My dr. did think it a good idea but you should check first with your dr. or pharmacist as John suggests. Helen

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sunnyflower | @sunnyflower | Sep 10, 2020
In reply to @mayofeb2020 "@sunnyflower. I was prescribed Fosamax. I actually fell last year trying stupidly to carry something heavy..." + (show)
@mayofeb2020

@sunnyflower. I was prescribed Fosamax. I actually fell last year trying stupidly to carry something heavy to my house. Landed kind of on top of the item with my right hip. Got an Xray, nothing broken, thank goodness. My daughter's mother in law had breast cancer and according to her, she lost 25 percent of bone density due to various treatments . She was on Fosamax too. She takes some supplements for joint pain. Fosamax is supposed to be taken for 3 to 5 years only, after which time, patient has to switch to something else which indicates that it's not a good drug to take long term. That alone worries me. I'm sure alot of people take this but I'm very sensitive to drugs. I'm not on any steroid. I have a small frame.. 5'2 and 105 lbs soaking wet so i don't really have much "cushion" when i fall so i have to be careful!

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So glad you did break a bone when you fell, sorry you fell! Girl, my birth weight was 202# JK, LOL! Yes, without a cushion is a cause for concern. Yikes. I am so glad to hear you are not on steroids!! Had I only known. Thx for sharing. I am a young 67. Uded to be 5'3" but after 3 back surgeries, last a fushion, and DJD/DDD, I 'm now 5'1". Definitely vertically challenged!
Stay well and I pray for no fractures and ZERO pain for you! Blessings, Sunnyflower 🤗

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sunnyflower | @sunnyflower | Sep 10, 2020
In reply to @jimhd "@bustrbrwn22 @catharbert I tried Lyrica 5 years ago, and was starting to have relief from my..." + (show)
@jimhd

@bustrbrwn22 @catharbert I tried Lyrica 5 years ago, and was starting to have relief from my pain, but I had a bad reaction to it and had to be in the hospital for a few days. Bummner that I couldn't take it. I was incoherent, no memory, couldn't form a complete sentence, dizzy, heart went into a bad rhythm in the ER.

Weight gain is no trivial issue, whether it's from poor diet or from a medication. Back in 2004, I was trying to find an antidepressant, testing one after another for 6 weeks, and I think it was Lexapro that made me hungry all the time and I gained 15+ pounds. Another one made me very suicidal, on the exact shedule in the list of warnings. Not good, as I was suicidal to begin with.

It's been around 5 or 6 years since my last OD. I know people don't like to hear what my first thought was when I woke up, but it was, "I'm such a failure. I can't even get suicide right!" That's a thought that's hard to keep filed away in a locked drawer. It resurfaces periodically. I don't feel at risk, but suicidal thoughts tend to ride piggyback on depression and anxiety. I hope that you're at a safe place now.

Jim

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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

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2 replies
bustrbrwn22 | @bustrbrwn22 | Sep 10, 2020
In reply to @sunnyflower "Dear Precious Jim, thanks for sharing this. I am so sorry to hear of your horrible..." + (show)
@sunnyflower

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

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Jim. Please reach out if you need support

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fiesty76 | @fiesty76 | Sep 10, 2020
In reply to @jesfactsmon "@fiesty Glad you found the articles. I thought this one was the most informative of the..." + (show)
@jesfactsmon

@fiesty
Glad you found the articles. I thought this one was the most informative of the two: https://www.psychologytoday.com/us/blog/sleep-newzzz/201805/what-you-need-know-about-magnesium-and-your-sleep

I just got the mag. glycinate from Amazon today and I plan to take 200mg a little before bedtime after taking 160 mg of mag. citrate in the morning. If I experience any issues, which I do not expect, I will dial back to 100 mg at night and see how that does. Best, Hank

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Thanks, @jesfactsmon. I'm placing an order to Amazon tomorrow and will add the mag. glycinate to the order.

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