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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.

bustrbrwn22 | @bustrbrwn22 | Aug 22, 2021
In reply to @athenalee "I’d recommend you speak directly to them. Many doctors are becoming more favorable to medical marijuana,..." + (show)
@athenalee

I’d recommend you speak directly to them. Many doctors are becoming more favorable to medical marijuana, as long as it is legal in your state.

Also, I’ve researched cannabis extensively. It definitely interacts with many medications, including pain meds. I am on immunosuppressive meds and I have neuropathy, as well as extreme muscle pain due to an autoimmune disease. I’d love to take cannabis for pain. But I can no longer do so as it interacts with one of my immunosuppressive meds.

Cannabis will interact with any medication metabolized by the CYP3A4 or CYP3A5 enzymes, which is more than 50% of medications. Drugs.com is a good app to check for drug interactions.

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Thanks for responding. Cannabis is illegal in Wisconsin and is so conservative probably never will be. I also am on immunosuppressive medication for several autoimmune disorders so it sounds like it wouldn’t be a good choice for me.

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greenacres | @greenacres | Aug 22, 2021
In reply to @audriana "Hello @greenacres I'm having a more difficult time sleeping than my usual insomnia. I thought I..." + (show)
@audriana

Hello @greenacres
I'm having a more difficult time sleeping than my usual insomnia.
I thought I would check in and see how your husband and you are doing. Your expression of gratitude for some simple strategies was very gracious and gratifying.
I have a follow-up appointment with a neurologist in October. He'll probably attribute my symptoms as poly pharmaceutical in nature. I don't have much confidence in the new doctor, so I'll go to my journal and write my questions, comments and concerns.

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Hello Shrley @audriana I'm sorry that you're having trouble sleeping. These are challenging times even without the additional health issues.
Just a quick reply now but will write more later. Wishing you free from pain and suffering. Michelle

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bustrbrwn22 | @bustrbrwn22 | Aug 22, 2021
In reply to @luann262 "Nope! 3300 mg - I take 600 am,noon , then 900 at dinner , 1200 at..." + (show)
@luann262

Nope! 3300 mg - I take 600 am,noon , then 900 at dinner , 1200 at bed. I worry about the side effects.

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How in the heck do you stay awake

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athenalee | @athenalee | Aug 22, 2021
In reply to @bustrbrwn22 "Thanks for responding. Cannabis is illegal in Wisconsin and is so conservative probably never will be...." + (show)
@bustrbrwn22

Thanks for responding. Cannabis is illegal in Wisconsin and is so conservative probably never will be. I also am on immunosuppressive medication for several autoimmune disorders so it sounds like it wouldn’t be a good choice for me.

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I’m sorry. I thought I did read that you said that, but I couldn’t remember. So, that’s true for medical marijuana too? So ridiculous, as it does benefit so many people with a wide range of illnesses. And, certainly better than a whole host of other pain meds “legally” prescribed.

I hope that you soon find a solution that helps.

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1 reply
luann262 | @luann262 | Aug 22, 2021
In reply to @bustrbrwn22 "How in the heck do you stay awake" + (show)
@bustrbrwn22

How in the heck do you stay awake

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It’s called anxiety! And pain, stress, adhd !

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bustrbrwn22 | @bustrbrwn22 | Aug 22, 2021
In reply to @athenalee "I’m sorry. I thought I did read that you said that, but I couldn’t remember. So,..." + (show)
@athenalee

I’m sorry. I thought I did read that you said that, but I couldn’t remember. So, that’s true for medical marijuana too? So ridiculous, as it does benefit so many people with a wide range of illnesses. And, certainly better than a whole host of other pain meds “legally” prescribed.

I hope that you soon find a solution that helps.

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I do too. I’m having an episode right now. And there’s nowhere to go

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jenatsky | @jenatsky | Aug 24, 2021
In reply to @alicealna "Hello, and I’m so glad to find this group. My neuropathy is not diabetes related. I’m..." + (show)
@alicealna

Hello, and I’m so glad to find this group.
My neuropathy is not diabetes related. I’m 69, generally healthy, but with severe arthritis in
neck and lower spine.
The neuropathic symptoms in my lower left leg have grown more pronounced and more constant in recent months. It’s silently driving me nuts! Not sure whether to be concerned or not, or how much.
Have just completed a course of Medrol (first time in two years) so pain is not currently an issue. It’s just a constant mental preoccupation — I find I can’t successfully ignore it, and the distraction’s getting to me.
Would love to know how others deal with this side of the condition.
THANKS,
Alice in Maine

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I recommend you try cannabis THC and/or CBD or both combined. I have a similar situation as yours due to spinal stenosis and OA having has lumbar fusion in the early 90's. I'm as active as I can be walking minimum 2 miles daily. Cannabis takes your mind off the pain and allows you to function and do your ADL's.

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Mary Klimek | @brklimeks | Aug 26, 2021
In reply to @mcd123 "Hi Luann...im glad I'm not finally losing it!!! I have thought of cutting my toes off..." + (show)
@mcd123

Hi Luann...im glad I'm not finally losing it!!! I have thought of cutting my toes off many times!!! Never experienced pain like it. I have had neuropathy for many years but just numbness for years. Over the past several years pain and burning has entered the picture. I am taking Gabapentin 1800mg daily. Many years on tramadol,but my pain doctor has decided I need to come off of that. I have been weaning myself off and of course the neuropathy pain has increased greatly. I also take klonopin .5 mg Which I am also wanting to stop. I am trying many things. Right now have found a little relief with voltaren cream and cbd cream,on my toes and burning areas. Also using ibuprofen and Tylenol. The pain,has altered my life...not for the best to say the least. It is so difficult to know what to do. My neurologist want me to start Cymbalta ...my thoughts are why bother If It won't help me. I live in the flirida panhandle and have toyed with the idea of going to the mayo clinic in Jacksonville. Let's stay in touch ..it us so good to share information. Cathy

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I too have painful neuropathy in my feet. I was on 3600 mg of gabapentin and Cymbalta. Wanted to use marijuana so doctor took me off both. Long story short I ended up in a psychiatric hospital with suicidality. MJ didn’t work for me. I ended up getting a spinal cord stimulator which greatly helped. Just found out after 20+ years of meds I have stage 3 chronic kidney disease. I was doing well with healty eating but now I’m soothing myself with food. I feel like a hamster on a wheel. Aargh!

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Aug 26, 2021
In reply to @brklimeks "I too have painful neuropathy in my feet. I was on 3600 mg of gabapentin and..." + (show)
@brklimeks

I too have painful neuropathy in my feet. I was on 3600 mg of gabapentin and Cymbalta. Wanted to use marijuana so doctor took me off both. Long story short I ended up in a psychiatric hospital with suicidality. MJ didn’t work for me. I ended up getting a spinal cord stimulator which greatly helped. Just found out after 20+ years of meds I have stage 3 chronic kidney disease. I was doing well with healty eating but now I’m soothing myself with food. I feel like a hamster on a wheel. Aargh!

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@brklimeks, I'm sorry to hear that you also have stage 3 chronic kidney disease. You might find the following discussions helpful.

-- Confused About Diet for Stage 3 or 4 Chronic Kidney Disease (CKD): https://connect.mayoclinic.org/discussion/confused-about-stage-3-ckd-diet/
-- Just diagnosed Stage 3 CKD: Should I be referred to a nephrologist?: https://connect.mayoclinic.org/discussion/just-diagnosed-with-stage-3-ckd/
-- Chronic Kidney Disease (CKD): How do I stop progression?: https://connect.mayoclinic.org/discussion/ckd/

I think a lot of us feel like a hamster on a wheel at times. It's understandable to feel down about it. You mentioned you were doing well with healthy eating before you were diagnosed. Are you able to get back to healthy eating?

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mistic | @mistic | Aug 26, 2021

Hi. I’m new…Im 46 years old and am dealing with femoral neuropathy and am in so much pain. In July, I suffered from mini strokes and actually ended up on life support for 10 days. I developed femoral neuropathy because of the way I was laying so I must have compressed a nerve. I’m taking 900 mg of gabapentin 3x a day. Does it really take up to 6 weeks to begin working? And does it take away the stabbing and sharp pains that feel like I’m being electrocuted?? I can’t live like this, it’s awful! Thanks in advance for any helpful input.

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