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?

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

@fredamm

I'm an 82 year old woman in relatively good health with a mostly positive attitude except when I feel sorry for my self. Darn!..I have neuropathy in my feet and mostly lower legs. They used to just burn horrible. Lyrica, pregabilin, has helped the burning. Now it feels like I'm walking on gravel and have the pins and needles and sharp pains in my feet and legs off and on. I wear compression hose that gives some relief. Walking seems to help, but it is horrible to just be standing still. Very hard to cook with standing still. It seems to have gotten worse with the cold weather in MI. My left side is the worse as I have an arthritic knee and bursitis in hip. I had a neurology test and some of the pain comes just from damaged, old, nerves and some comes from my spine.
I just want to continue living the best I can with the least amount of pain. My little terrier cheers me up. Any suggestions on how to do. this would be appreciated. I was a teacher and was upright during most of my assignments. LOL. Loved it!

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I get laser treatments , vibration treatments. Decompression treatments. I also get massages and acupuncture every week. I have a foot and leg massager. I also have a foot spa that heard and bubbles the water . I use a balm of magnesium lotion and Mary jands salve. It is a combination of 70 % thc and 30 % cbd . It all helps.

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Vitamin c for dissolving any blockages in bloodstream while avoiding sugar and drinking chicken broth instead for instant energy.. realize if you've had a car accident or impact injury, you will have calcium crystals jammed into cells and would have had bruising..feet are usually show a $4 pet laser over feet about 12 seconds. Deep enough penetrating to melt fats and let blockages loose if you walk right after that..usual cause of diabetic circulation problem that has nothing to do with it.. also realize you can't drink electrolytes where too much..causes cramping, spinal feedback when dehydrated..the cause of epileptic fits. .and easily fixed with proper electrolytes usage only every 3rd or 4th day a bottle. Have home water checked too.. and heavy metal check like lead solder in plumbing meetings? emt experience, 28 years married to medical transcriptionist Specializing in physics, that gives the answers, fixed own health and took care of daughter, 28 years anemia.. can be fixed in a week by diet, blood disorders/no longer a need for chemo.. same with all cancers and proven.. and just need doctor verification but already people proven..

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@titansofideastookevindshort

Vitamin c for dissolving any blockages in bloodstream while avoiding sugar and drinking chicken broth instead for instant energy.. realize if you've had a car accident or impact injury, you will have calcium crystals jammed into cells and would have had bruising..feet are usually show a $4 pet laser over feet about 12 seconds. Deep enough penetrating to melt fats and let blockages loose if you walk right after that..usual cause of diabetic circulation problem that has nothing to do with it.. also realize you can't drink electrolytes where too much..causes cramping, spinal feedback when dehydrated..the cause of epileptic fits. .and easily fixed with proper electrolytes usage only every 3rd or 4th day a bottle. Have home water checked too.. and heavy metal check like lead solder in plumbing meetings? emt experience, 28 years married to medical transcriptionist Specializing in physics, that gives the answers, fixed own health and took care of daughter, 28 years anemia.. can be fixed in a week by diet, blood disorders/no longer a need for chemo.. same with all cancers and proven.. and just need doctor verification but already people proven..

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Welcome @titansofideastookevindshort, Thanks for sharing your experience and what has helped. Do you mind sharing a little more about your diagnosis, do you have a type of neuropathy?

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Theodore is my name, with long-standing peripheral neuropathy affecting mostly my legs, and looking for helpful information.

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@theodore1238

Theodore is my name, with long-standing peripheral neuropathy affecting mostly my legs, and looking for helpful information.

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Welcome Theodore @theodore1238, I've had small fiber peripheral neuropathy for 20+ years or more but only started worrying about it and was diagnosed in 2016. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/

The two best sites I've found for learning more about neuropathy have helped me considerably.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

One thing that helps me a lot with the feet are really comfortable shoes. Mostly I wear the memory foam Sketchers. I also make sure that I keep my legs moisturized with a good skin lotion.

Have you been diagnosed or started any treatments for your neuropathy?

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@titansofideastookevindshort

Vitamin c for dissolving any blockages in bloodstream while avoiding sugar and drinking chicken broth instead for instant energy.. realize if you've had a car accident or impact injury, you will have calcium crystals jammed into cells and would have had bruising..feet are usually show a $4 pet laser over feet about 12 seconds. Deep enough penetrating to melt fats and let blockages loose if you walk right after that..usual cause of diabetic circulation problem that has nothing to do with it.. also realize you can't drink electrolytes where too much..causes cramping, spinal feedback when dehydrated..the cause of epileptic fits. .and easily fixed with proper electrolytes usage only every 3rd or 4th day a bottle. Have home water checked too.. and heavy metal check like lead solder in plumbing meetings? emt experience, 28 years married to medical transcriptionist Specializing in physics, that gives the answers, fixed own health and took care of daughter, 28 years anemia.. can be fixed in a week by diet, blood disorders/no longer a need for chemo.. same with all cancers and proven.. and just need doctor verification but already people proven..

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Forgive the interruption and for going off-topic.
This post is intended to be informational only. I certainly don't expect everyone to be up to date on current Epilepsy terminology. But as a person with Epilepsy (Not an “Epileptic”) I'd like to briefly discuss a couple of words that were mentioned earlier related to Epilepsy. The words “fits” and “Epileptic.”
The word “fits” is inaccurate and has negative connotations as does “Epileptic” since it is a defining and stigmatizing label. A great number of people find these words offensive who have the condition. Additionally, “fits” describes only convulsive seizures which only account for 25% of all seizures.
Thank you for your understanding,
Jake

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@johnbishop

Welcome Theodore @theodore1238, I've had small fiber peripheral neuropathy for 20+ years or more but only started worrying about it and was diagnosed in 2016. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/

The two best sites I've found for learning more about neuropathy have helped me considerably.
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

One thing that helps me a lot with the feet are really comfortable shoes. Mostly I wear the memory foam Sketchers. I also make sure that I keep my legs moisturized with a good skin lotion.

Have you been diagnosed or started any treatments for your neuropathy?

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I was diagnosed in the nineties but only during the last 5 years it has gotten difficult, meaning only short 20-30 minute walks, lots of numbness up to my knees but no pain. Six months ago I was examined again by neurologists who confirmed my case but offered nothing as remedies. I am looking for any basic exercises and/or external physical or medicinal applications to improve or at least slow down the neuropathy. Thanks.

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@theodore1238

I was diagnosed in the nineties but only during the last 5 years it has gotten difficult, meaning only short 20-30 minute walks, lots of numbness up to my knees but no pain. Six months ago I was examined again by neurologists who confirmed my case but offered nothing as remedies. I am looking for any basic exercises and/or external physical or medicinal applications to improve or at least slow down the neuropathy. Thanks.

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@theodore1238, My neurologist basically told me the same thing, there's nothing he can do to help with the numbness and said just to call if it gets worse. That's what brought me to Connect and searching for what coud help. The Foundation for Peripheral Neuropathy has some information on exercises that might be helpful here -- https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

They had a webinar on May 21, 2021 you might find helpful also.

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@jakedduck1

Forgive the interruption and for going off-topic.
This post is intended to be informational only. I certainly don't expect everyone to be up to date on current Epilepsy terminology. But as a person with Epilepsy (Not an “Epileptic”) I'd like to briefly discuss a couple of words that were mentioned earlier related to Epilepsy. The words “fits” and “Epileptic.”
The word “fits” is inaccurate and has negative connotations as does “Epileptic” since it is a defining and stigmatizing label. A great number of people find these words offensive who have the condition. Additionally, “fits” describes only convulsive seizures which only account for 25% of all seizures.
Thank you for your understanding,
Jake

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You're trying to focus by redirection to find fault with observations when they aren't wrong..to draw attention away from the facts that are right.. there is NO category where one label fits all, just listing contributing possibilities that the individual can consider, each individual has different conflicting illnesses and ALL illnesses have effects between each other and change appearances of each illness which is determined by nutrition and amount of exercise and environmental exposure..

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@johnbishop

Welcome @titansofideastookevindshort, Thanks for sharing your experience and what has helped. Do you mind sharing a little more about your diagnosis, do you have a type of neuropathy?

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I had a lifetime of dealing with illegal drug dealer and corrupt experimentation after they and corrupt government deliberately hit me double nuclear off power lines at matterhorn Dr orlando by Orlando Utilities Department when it was including electric power supply residential back then about 38 years ago..

The incident happened the same time as when you believe was filmed with Mariah Carey and Whitney houston.. and was the white flash that they complained it was too hot in the video and guaranteed that it melted the electric cables on every light and CANNOT be duplicated...

Look on You tube..

Since fixed and figured out all 100% physics and fixed all problems.. but your's and many others are basically a problem that type of emp hit everyone and resulting atomic damage put a lot of compounds together that had never been together along with creating new compounds..

For the world to recover..these new compounds have to be figured out then atomically balanced..why SO MANY contaminated food and water sources.. the covid 19 vaccine DOES have a valid purpose.. when a typical food source or other is contaminated or other.. an new food source or other compound has to be found to put it back into balance..and why additional varances..why the variances? Because all these chemicals are the heavier acids emitted by the oceans going molten along with volcanoes..

The progression of radiation is by FREE RADICAL WATER DAMAGE, water damaged by constant emp's around the earth..

Aids itself was free radical where they illegally dumped nuclear fuel in Africa where they "screwed the monkey" thinking them having no intelligence, while the same ones would die in their environment proving who's stupid with disrespect..

Nuclear fuel dumped too close to a water supply sets off slow water destruction of the water in a person's body.. it CAN be kept in balance with maintenance..

Example? Most aren't known or advertised.. but a couple examples in Africa and a mother, daughter, grandmother in the US who had what they called a growth disease with abnormal tumors but otherwise good health..

In the US luckily, seeing as they were the only ones with the problem.. meant luckily a private well most likely contaminated by dumping nuclear waste or storing it too close to a water supply..

But as the water damage increases..it eventually starts damaging tissue cells.. the cell damage is treated by iodine..BUT IT DOES NOT TREAT THE PROGRESSING WATER DAMAGE

CIGARETTE SMOKE or other burning is a nuclear teardown to next scale down.. giving components to what had a free radical take off and don't stop effect.. once there it's NEVER perfect and requires maintenance.. the other is by electrolysis but am not going to discuss it now, for it has to be totally explained or inexperience can result in death,.

Almost all waters say purified but way over mineral levels to be safe and end up shorting out peoples nervous system..you'll know that's part of your problem if it's way worse dehydrated..

Try distilled water for drinking for a while..that's steam.. water ONLY ..it'll be bland tasting, for minerals give water the flavor.. one thing vital though is potassium.. found in bananas, vital for heart rhythm but too much or too little will cause heart arythmias..

So an occasional banana for potassium just to make sure you have that.. that's also not talking about the acids WRONGFULLY put in hair care products.. when they were introduced those acids WERE NEVER MEANT TO BE IN THE BODY..

They was with those acids meant to fast clean oil off of hair..you was down there..and it DOESN'T all wash off. and dries.. then when you sweat while consuming sugar, your sweat containing the sugars you ate does the same as in the body..

Sweating, the unrinsed acid gets on skin by sweat, sugar in sweat coats it and same as in the body, it shoves it back into the skin by absorption, chemists didn't realize that once introduced that way..like keeps attacking like and in the skin keeps building up until you have the equivalent of dumping battery acid in your lap until you get a CHEMICAL BURN...HERPES!

Once introduced.. it contaminates throughout the body..and in the nervous symptom duplicates mutiplesclerosis, which is caused by 2 methods, electrical shock excessive or herpes equivalent.

In the nervous system again nerves are made to carry electrons..acids aren't..and it breaks up those acids causing demilization of the brain and spinal cord.. without maintenance it's quite fast dehibilitating, and potential death.. but what I said that I'm not going to talk about now because it has to be FULLY explained to be safe..

Best thing to remember is when active, fluids are FAST pumped to kidney and bladder.. so to minimize symptoms drink water frequently and avoid caffeine except at treat times..

Dehydration a main aggravating factor in neural symptoms..

The equivalent of metals closer together to short out, then you end up getting a spinal feedback..which can be tingling skin or cramps or cramping

Young kids get heart attacks that AREN'T.. SPINAL FEEDBACK HALF THE TIME JUST LOCKED IT IN CONVULSION, those nowadays ignorant of mineral overload on the body, both natural and thinking electrolyte water safe to drink all the time..and that's when it's deadly..

Today's youth lost correct understandings about health...

The incident I talk about is also what damaged all dimensions damaging stored information everywhere..

Thanks for your offer.. and a hug to you for having done so..

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