• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Peripheral Neuropathy

Nielk

Senior Member
Messages
6,970
Has anyone experienced peripheral neuropathy? Is it part of Chronic Fatigue Syndrome?

I have been feeling numbness and tingling in hands, feet, lips and tongue for the past 2 months.

I had a nerve conductivity test done on my legs and it showed nerve damage. The doctor was surprised that I don't suffer from Diabetes (which I don't) because this is consistent with patients suffering from Diabetes.

I'm not sure if I should attribute this to my CFS or if I should look for another cause. In the meantime I'm scheduled for an MRI of the brain and neck tomorrow.
 

Nielk

Senior Member
Messages
6,970
I have

By which definition?

To be honest? I'm not sure. This is what I know about it.

What is Peripheral Neuropathy?

Damage to the peripheral nervous system interrupts communication between the brain and other parts of the body. This can impair muscle movement, prevent normal sensation in the hands and feet, and cause different feelings including numbness, tingling, cold and pain.
So all the strange feelings, you can experience from peripheral neuropathy aren’t just imagined. The nerves in your feet can become diseased or damaged as a result of other ailments such as diabetes.
 

Nielk

Senior Member
Messages
6,970
Here is more from National Institute of Neurology and Stroke:


What is peripheral neuropathy?


Peripheral neuropathy describes damage to the peripheral nervous system, the vast communications network that transmits information from the brain and spinal cord (the central nervous system) to every other part of the body. Peripheral nerves also send sensory information back to the brain and spinal cord, such as a message that the feet are cold or a finger is burned. Damage to the peripheral nervous system interferes with these vital connections. Like static on a telephone line, peripheral neuropathy distorts and sometimes interrupts messages between the brain and the rest of the body.
Because every peripheral nerve has a highly specialized function in a specific part of the body, a wide array of symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur.
Some forms of neuropathy involve damage to only one nerve and are called mononeuropathies. More often though, multiple nerves affecting all limbs are affected-called polyneuropathy. Occasionally, two or more isolated nerves in separate areas of the body are affected-called mononeuritis multiplex.
In acute neuropathies, such as Guillain-Barré syndrome, symptoms appear suddenly, progress rapidly, and resolve slowly as damaged nerves heal. In chronic forms, symptoms begin subtly and progress slowly. Some people may have periods of relief followed by relapse. Others may reach a plateau stage where symptoms stay the same for many months or years. Some chronic neuropathies worsen over time, but very few forms prove fatal unless complicated by other diseases. Occasionally the neuropathy is a symptom of another disorder.
In the most common forms of polyneuropathy, the nerve fibers (individual cells that make up the nerve) most distant from the brain and the spinal cord malfunction first. Pain and other symptoms often appear symmetrically, for example, in both feet followed by a gradual progression up both legs. Next, the fingers, hands, and arms may become affected, and symptoms can progress into the central part of the body. Many people with diabetic neuropathy experience this pattern of ascending nerve damage.
.
 

Nielk

Senior Member
Messages
6,970
Thank you Alex for directing me to your thread.

You mention warm water relief. When I'm in a warm water pool, all these symptoms are alleviated. Too bad I'm not a fish.:confused:
 

lansbergen

Senior Member
Messages
2,512
To be honest? I'm not sure. This is what I know about it.

What is Peripheral Neuropathy?

Damage to the peripheral nervous system interrupts communication between the brain and other parts of the body. This can impair muscle movement, prevent normal sensation in the hands and feet, and cause different feelings including numbness, tingling, cold and pain.
So all the strange feelings, you can experience from peripheral neuropathy aren’t just imagined. The nerves in your feet can become diseased or damaged as a result of other ailments such as diabetes.


I meant CFS definition.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
I have PN which is part of my Autonomic Neuropathy (Dysautonomia/POTS.)

Even if you are not diabetic you can be sensitive to glucose levels. My integrative doctors have me on a diet of no or low sugar, no bad carbs, and a lot of nutritious food. That is half of my answer. The other half is adding the correct supplements to heal and regenerate the nerves that are not healthy. This works for me.

Most doctors test glucose and do not test A1c, you do both. Then if the numbers are good, that is great, but you have to still change the diet and add all of the supplements. These work together. Most Doctors do not know how to heal the nerves, but it can be done.
 

Tammy

Senior Member
Messages
2,176
Location
New Mexico
Neilk, I've had my share of very strange neurological symptoms.....but mostly in the first seven years of the illness. I experienced numbness that first started around my temple area and around the lips....then areas of my back...........then spreading to my entire body! It scared the hell out of me............I went to 5 different neurologists and they never could find anything. I don't have these symptoms anymore but they sure can be unnerving (no pun intended). Some of my symptoms were just so bizarre.......I really thought that something would show up on the MRI of brain.............but NOTHING. Tammy
 
Messages
99
Location
Twin Cities
Nielk: numbness, tingling, burning, pain, itching and loss of sensation in extremities are also very common in withdrawal from long-term benzo use.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Has anyone experienced peripheral neuropathy? Is it part of Chronic Fatigue Syndrome?

I have been feeling numbness and tingling in hands, feet, lips and tongue for the past 2 months.

I had a nerve conductivity test done on my legs and it showed nerve damage. The doctor was surprised that I don't suffer from Diabetes (which I don't) because this is consistent with patients suffering from Diabetes.

I'm not sure if I should attribute this to my CFS or if I should look for another cause. In the meantime I'm scheduled for an MRI of the brain and neck tomorrow.
I have experienced it off and on, the tingling and numbness. Not sure what it's from.
 

Nielk

Senior Member
Messages
6,970
Nielk: numbness, tingling, burning, pain, itching and loss of sensation in extremities are also very common in withdrawal from long-term benzo use.

Right, I thought about that but,

#1 the issue is getting worse and worse as time is elapsing
#2 would this explain the nerve damage in my legs? (shown on the nerve conductivity test)

I know that Benzo withdrawal can have strange effects but, I'm in doubt as to put the blame of everything that I will be feeling for the next year on the fact that I withdrew from Benzos although maybe I'm wrong?
 

richvank

Senior Member
Messages
2,732
Hi, Neilk.

Possible causes are deficiencies in one or more of the B-complex vitamins. B12, B6 and B2 are very important for the nerves.

Best regards,

Rich
 

Nielk

Senior Member
Messages
6,970
Hi, Neilk.

Possible causes are deficiencies in one or more of the B-complex vitamins. B12, B6 and B2 are very important for the nerves.

Best regards,

Rich
Hi Rich,

Thanks,

So would a B-complex vitamin as well as B12 be helpful?
 

Crux

Senior Member
Messages
1,441
Location
USA
Hi Nielk;

When I had numbness and tingling of nerves in the hands, feet, lips, and tongue, I was in an advanced state of B12 deficiency. It was very distressing.

I'm not sure, but have you had trouble adjusting to the B12 protocols here?

I found that adding a Zinc supplement to the mix helped me tolerate the higher dosages of B12 and Folate. I no longer get headaches, anxiety, insomnia, and constipation as a side-effect from the B12/folate.
 

Tammy

Senior Member
Messages
2,176
Location
New Mexico
Rich, I seem to remember something about a connection between glutathione and the myelin sheath that covers the nerves. Tammy
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Here is a link to a doctor that wrote a piece in the Townsend letter about 2 years ago and it looks as if he has expanded it a little for this site, but I thought it was well written and what he wrote made a lot of sense because he explains his reason for chosing these supplements. His name is Dr. John Hahn DPM ND:

http://www.podiatrytoday.com/article/5254?page=4

Here is the article he wrote for the Townsend Letter:

http://www.biomedsearch.com/article...diabetic-peripheral-neuropathy/220641766.html
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
There are good supplements I take. Some are in that article. The article didn't list Benfotiamine, important. Also, B6 toxicity is not rare like it said. Doesn't take much really.