Numbness, Tingling, Pain – Raising Awareness of Peripheral Neuropathy

By: Jean Johnson for Body1

“Sometimes I get worried that I won’t be able to feed myself someday,” said Kathleen Johnson of Portland, Ore., (the author’s mother) who was diagnosed with peripheral neuropathy 14 years ago. “But then it seems to plateau and things back off some.”

Be In The Know

Understanding Neuropathy Some people with neuropathy 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. Sensory symptoms include sensory loss, often described by patients as a sense of numbness or a “Novocain-like” feeling. Glove and Stocking Sensation: The odd feeling some patients with neuropathy had that they are wearing stockings or gloves or slippers when, in fact, their hands and feet are completely bare. Patients with peripheral neuropathy can burn or cut themselves without knowing it. In Kathleen Johnson’s case, Neurontin and Isotoner gloves have proved to be her saving graces.

The symptom Johnson experiences the most in her hands is “the burning.”

“Anything I touch hurts. If I touch metal – that is the worst thing you can do – very painful. This whole thing is painful.” She pauses to reflect and brushes silver gray curls off her 88-year-old forehead.

“I would say that a person that has neuropathy is never out of pain.”

Mrs. Johnson is letting her story be published on the Body1 Network, but she’s also sharing it with the Neuropathy Association, a group formed to raise awareness of this strange, often discounted disease. There are currently 22 million Americans suffering from peripheral neuropathy, and that does not include diabetics who often get another type of neuropathy related to circulation problems.

Peripheral neuropathy affects people of all ages including former soccer professional Emily Oleksuik. Still, according to the Neuropathy Association, “information is hard to come by.”

Thus, the organization’s designated May as the Peripheral Neuropathy Awareness Month to help. Learn more about the Neuropathy Association at www.neuropathy.org.

Peripheral Neuropathy – How it Works

At issue are problems with the nerves in the outlying areas of the body distant from the central nervous system of the brain and spinal cord. Symptoms usually appear in the hands and feet, specifically in the finger tips and toes in the early stages. They can come on suddenly or as in Johnson’s case, take a gradual progression over many years.

Numbness, tingling, and burning are the main symptoms, although weakness in the arms or legs along with a poor grip and muscle cramps can develop. Neuropathy Association literature describes these sensations, called paresthesias, as “pins and needles, prickling, pinching, cold, sharp, deep stabs, electric shocks or buzzing. They are usually worse at night, often painful and severe.” Pundits also speak of a lack of balance and altered gait, along with atrophy or wasting of certain foot muscles that can lead to limb deformities.

Information on the etiology is sketchy. Trauma like carpal tunnel problems, autoimmune responses, diet insufficiencies, and other types of metabolic dysfunction are suggested as possible causes, as is heredity in some cases. But whatever the root of the problem, the word is that if people notice even the slightest symptoms they should not put off going to their physicians.

“People who notice signs and symptoms should not wait to see what develops,” writes Mary Ann Donovan and Norman Latov, M.D., Ph.D. in the Neuropathy Association’s booklet, Explaining Peripheral Neuropathy. “Much as you may wish it, chances are that if your neuropathy is chronic, it is not going to go away by itself. Instead the longer you wait, the worse it is apt to get and the harder it will be to treat successfully.”

Kathleen Johnson’s Story

Unfortunately, 14 years ago the Neuropathy Association was not even in existence and Mrs. Johnson was not aware that the numbness she felt in her toes and eventually her hands was cause for concern.

“It was about 14 or 15 years ago, and I was having trouble getting shoes that were comfortable. I don’t know how many pair I bought and gave away because they didn’t seem to fit,” she recalled. “Then one day I was walking across the parking lot at the church, and I realized that my walk had changed. I can’t describe it, but my walk was different from how I’d always walked. I just blamed it on the shoes, though, and can’t say if my toes were numb then or not. This disease progresses so slowly and is so subtle.”

After a few years went by, however, Johnson’s toes had gotten numb enough for her to mention it in passing when she was in to see her physician for another matter.

“She put me up on the table, and there we were. She had me close my eyes and she took something sharp and poked around. I couldn’t feel a thing on my toes but when she got back by my heels there was sensation.”

The physician packed Johnson off to a specialist in electrodiagnostic medicine. After an hour of extensive measuring and evaluation, the physician pronounced the diagnosis as advanced peripheral neuropathy and prescribed Neurontin.

“If I hadn’t had Neurontin for the last eight to nine years,” Johnson said, “I would be climbing the walls with the pain and burning. I just don’t know what I’d do if I didn’t have those pills.”

It was during this period that Johnson’s hands began to feel the effects of the disease as well. “Just like my feet, at first it was so slight that you weren’t sure. But by the end when I was still at home, I would burn my hands on the stove burners because I just couldn’t feel the heat and they were those flat kind.

“That was when I started wearing Isotoner gloves too,” she said. “I don’t know why I discovered that wearing them eased the tension and numbness in my hands. I might have had them on for driving and all of a sudden realized what was happening, but I don’t recall. All I know is that the Isotoner gloves that are knitted elastic put enough pressure on your fingers and hands. So for years, every fall when they came out, we’d stock up in all the colors. Finally, last year we found a medical supply house on the Internet that sells them without the fancy leather on the backs. So that’s what I wear now.”

Johnson also remembers her feet growing worse back in those years. Balance is a common problem in those with peripheral neuropathy and it certainly affected her. “My toes were so numb that I couldn’t tell what my feet were doing sometimes. So I’d just tip over. I still drove and could grocery shop, using the cart to hold onto. But at home it got so bad that I had to start wearing one of those call necklaces with the button you push for help if you fall.

“The last month I lived at home alone I fell five times. I got worried that the firemen who would come to get me back on my feet would get tired of a person that was a chronic user. But they said no, they never turned anybody down. If a person needed help, that’s what they were there for – that’s what they told me.”

Johnson’s last fall was one from which she never entirely recovered, and today she is confined to her bed. The numbness in her feet has traveled up her legs and the muscles in her feet have atrophied significantly. When she sits up in a wheelchair, her left ankle will not straighten out, but instead buckles to the side.

But she does enjoy being able to read all the books she never had time for when her husband was living and they were raising a family of four children. Among other authors, Johnson is an avid Ellis Peter fan and follows the main character Brother Cadfael as his life with the 12th century Benedictine monks at the Abbey of St. Peter and St. Paul in Shrewsbury unfolds.

She has to be careful in her choice of books, though. Her grip is so weak that heavy ones aren’t worth the bother most of the time. “Once in awhile if it’s an especially good book, I do read it. I may not be able to read it straight through and will have to intersperse it will some lighter-weight books, but I can do it,” Johnson said.

“But I don’t have a good grip any more,” she added. “I drop things. Or I can reach for a piece of paper and can’t pick up until I’ve tried three or four times. Then there’s my towels and my book and back scratcher. I drop them. I dropped a can Pringles this afternoon. And doing anything, like making a peanut butter and jelly sandwich the other day, takes forever. I think that sandwich took me an hour to make and I had everything I needed right here in front of me.

“My water, too. I have to use the ones with handles on them because I can’t grip a regular bottle or glass. But even then I have to be careful how I pick them up. The other day I knocked a full bottle on the floor. The lid came off, and we had a little flood.

“I manage, but sometimes it takes me forever to put a single envelope where I want it. It isn’t easy,” Johnson said. “And my writing. I sign my name, but occasionally it’s illegible. I’ve had to quit writing letters except the ones I dictate to my two young helpers age 10 and 12. On my job writing the alumni letter for my college class, my daughter helps.”

So Johnson gets by with a little help from her pals and a lot of patience. Also, she is appreciative of the information the Neuropathy Association has sent her. “Now I know that even though my symptoms might worsen from time to time, it doesn’t mean my hands are going to be useless. And my experience with plateauing matches what they say in their materials.

“Also just knowing that there are others who have the same response to the disease as I have had makes me feel so much better. They use vocabulary in their literature that describes my symptoms and experiences perfectly. And they draw connections between things I didn’t realize might be associated with neuropathy like the weakness in my legs and other things. I am so very grateful that I found this group and have joined the membership.”

Indeed, Johnson will be seeing her physician soon and plans to see if he would like to have booklets from the association sent out to his office to help inform other patients. In this way, she is doing her part for the May awareness month. Doing her part to not only educate herself, but also spread the word to others who might be in need. Thank you Kathleen Johnson.

Last updated: 30-May-06