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Living with Neuropathy - Welcome to the group
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?
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I have severe small fiber neuropathy/periferal neuropathy that Thad spread throughout my body, face and head.
I’ve barely ever stand alcohol in my life so although it may be a contributing factor to some, it wasn’t for me.
Synthetic B6 often found in energy drinks, supplements and hidden in some coffee can contribute highly.
Cut out all synthetic meds/supplements.
We aren’t all made the same IOW we all process and methylate things differently.
I also encourage you to see a NATURALPATH and have your MTHFR checked out.
If your HOMOZYGOUS or Compound Heterozygous, this could be the underlying reason 🙏
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1 ReactionThanks Grover. Had an MRI yesterday . A pulsing. artery is rubbing on the crossing trigeminal nerve. Wore off it's insulating myelin. But I am 82 so will keep on cheap ( free here) pain killers.
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1 ReactionGrove, forgot to say nerves are coated with myelin. Vitamin B12 is needed to make it. Many people are B12 deficient. Usually vegans. Of the 3 types, METHYLCOBALAMIN is the most easily absorbed. Go for it. Good luck.
I’ve had neuropathy for 10 years and had to up my gabapentin to 2400 mg daily. I am trying to lower it gradually. I’m at 1800 mg now. Not sure if that’s strong enough. I’m 85 years old and not putting up with pain the rest of my life no matter how many milligrams I have to take.
I'm 69 and have type 2 diabetes. Nerve pain in both my feet and hands keeps me awake most nights. I've tried compression socks and gloves,.lidocaine cremes and patches, otc pain meds all of which help a little but not enough. Any other suggestions that I could try?
Maybe we should re-title this chat room to neuropathy living with you was plainly you didn’t ask you to move in it just kind of crashed and now you have to deal with the consequences. Seems I’m always cleaning up after it. It’s a messy roommate when you think you’re all quiet And everything‘s right it comes to wake you up at night even though you put up a fight is a strange disease or is it a condition I’m not quite sure, but it was certainly an unwanted addition I struggle with a day and night take medicine to make me feel all right, but there are times and there are days when it feels like I’m living in an ugly haze the pain gets bad. I try to walk you through but it’s got more endurance so what am I to do? Try to have fun try to enjoy the life and get the darkness And move on with my life.
I like your suggestion, @andyjustin, that this room might be retitled "Peripheral Neuropathy Living With Us." 🙂
Peripheral neuropathy (PN) reminds me of what people say about vampires – with a twist. Vampires can only enter your home if they're invited in. However, once they’re inside, they never have to leave. In contrast, PN doesn’t wait for an invitation; it imposes itself on our lives. Yet, similar to vampires, once PN enters your body, it’s there to stay.
Through my experience, I’ve found that understanding and accepting the permanence of PN have been crucial in moving forward with my life.That hasn't stopped me from doing all that I can to lessen the symptoms of of PN or to stop its progression. I intend to fight my unwelcome guest, my PN, even if I there's nothing I can do to make it go away for good.
Cheers to us all!
Ray (@ray666)
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1 ReactionOr maybe .... Living Well with Neuropathy 🙃 https://www.foundationforpn.org/living-well/
So I think we’re all in agreement neuropathy with its many variables sucks but we all have to learn to live with it personally try and find the humor in it all it makes you laugh so hard all you wanna do is cry or it makes you cry so hard all you wanna do is laugh insidious great word anyway I loved everybody’s comment commenting I love that. Everybody understands the spin. I’m trying to put on it. Turning a triple negative finding the positive but in reality it sucks I mean if someone offered me some really disgusting alternatives like being in a bucket of crap up to my neck for a week and exchange for being neuropathy free I would make it two weeks hell as long as I got five minute breaks every once in a while. I’d stay in there for a month a lifetime a long time and it’s stuck and it sucks to be stuck with an unwanted guest for that long on that note I hear my dog barking and I’m not talking about my feet. I’m talking about my four crazy months so once again diversion different attention and I’m out of here to all. Have a great day.
That’s for crazy months who make my life better and you make living with neuropathy just a little bit easier so everybody should go out and adopt the dog or donate money to an animal rescue by the way that’s what I do with a lot of my time since I retired. I have horses alpacas pigs chickens we we rescue them we repurpose them. We actually deal a lot with wild American horses known as mustangs. We get them before they shipped off to Canada and Mexico for someone’s dinner just sharing a little bit more of my life all good.