Diagnosed with a Hereditary Form of Neuropathy? Here’s How to Treat Longstanding and Progressive Nerve Symptoms.
If you have hereditary neuropathy, you may have received your diagnosis years ago in your 20s or 30s, or even in your teens. You’re probably already familiar with terms like these: HNPP (Hereditary Neuropathy with Liability to Pressure Palsies), Charcot-Marie-Tooth disease, DSD (Dejerine-Sottas Disease), or HMN (Hereditary Motor Neuropathy).
You probably also already know the kinds of symptoms that these hereditary neuropathies can cause:
- Pain in the hands and feet
- Tingling or numbness, especially in extremities
- Weak and emaciated muscles in the legs and feet
- Problems sweating
- Deformities of the foot (such as hammer toes) or spine (such as scoliosis)
But what you may not know is the vast advancements in treating hereditary neuropathy that have been made over the past few years. Though your condition is not curable, it is in many cases highly treatable.
Here are the general types of hereditary neuropathy that we usually see in our clinics. People with sensory neuropathy have limited input from touch and the other “six senses” that we normally gather information about the world. People with motor neuropathies have limited mobility or range of motion. People with autonomic neuropathy have trouble with their bodies’ ability to efficiently regulate things like their heart rate, blood pressure, digestion, and other body systems that normally take care of themselves without any input from us. And some folks have mixed neuropathies that affect more than one body system.
Genetic testing is the primary way to diagnose hereditary neuropathy, along with nerve biopsies and nerve conduction studies. All of these elements are needed for an accurate diagnosis. Your neuropathy specialist should also interview you for information about your family’s health going back two to three generations. It’s important to note that you might have a hereditary form of neuropathy even if you don’t know of anyone in your family with similar symptoms.
When it comes to formulating a treatment plan, keep in mind that hereditary neuropathy can’t be cured, but treatments are available to help you heal as much as possible and significantly improve your quality of life. Typically, your treatment plan should include several elements, including:
- Addressing any underlying medical conditions, such as diabetes
- Beneficial lifestyle changes, including nutrition and appropriate exercise
- Medication (in some cases)
- Physical or occupational therapy
- Other high-tech treatment options, such as laser light therapy
It’s vital to seek a diagnosis and treatment planning from a highly trained neuropathy specialist who can customize your treatment for your specific needs. Click here to find a NeuropathyDR® specialist near you.
What’s The Prognosis for Hereditary Neuropathy? is a post from: #1 in Neuropathy & Chronic Pain Treatment
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Have You Fallen For These Neuropathy Myths? Find the Real Facts Here.
There’s a lot of misinformation out there concerning neuropathy—what it is, what causes it, and most of all, what you can do about it.
In some cases, these neuropathy myths arise from confusion due to outdated information, misleading claims, and rumors perpetuated by neuropathy sufferers looking for a cure.
Take a look at the following neuropathy myths and the real facts known by current medical science, and decide for yourself.
Myth #1: Neuropathy pain happens naturally with age.
Neuropathy can happen to people of any age; it’s just a little more common in the senior population. And neuropathic pain is not inevitable with advanced age. Instead, it’s correlated with certain problems that can happen to older people, such as drug complications and metabolic issues. In fact, there’s plenty you can do to help prevent neuropathic pain from negatively impacting your quality of life as you get older.
Myth #2: My friend with neuropathic pain says that my symptoms can’t be neuropathy, because my pain is nothing like my friend’s pain.
Neuropathy can present with a variety of specific symptoms. These can include sharp pain, lack of normal sensation, unpleasant tingling, or inability to retain control over motor functions. Some individuals will have only one symptom, while others have multiple indicators of nerve damage. In the most severe cases, there can even be organ damage that impairs normal function. One person’s neuropathy may not look anything like another person’s neuropathic pain. That’s why it’s so important to get a diagnosis from a trained clinician with a background in treating neuropathy.
Myth #3: Only people with diabetes develop neuropathy symptoms.
It’s true that neuropathy is one of the symptoms commonly associated with diabetes. However, there are many other patients who are affected by neuropathy—including people in chemotherapy cancer treatment, people with minor physical problems like carpel tunnel syndrome, and those who have undergone an illness or injury.
Myth #4: There is a simple cure for neuropathy.
Unfortunately, although there are many websites and books out there claiming that they alone can provide a “cure” for neuropathic pain, the truth is that there’s no real cure. It’s also important to keep in mind that neuropathy looks different for every individual sufferer, so how could a website or book possibly offer a miracle cure for YOU and your individual pain? Any cookie cutter solution is likely to be a scam or just plain ineffective. Always talk with your physician before beginning any type of neuropathy treatment program.
Myth #5: If there’s no cure for neuropathy, then there’s no point in trying to treat my symptoms.
Actually, many neuropathy sufferers have been able to significantly improve their quality of life and even reduce the severity of their symptoms. There’s no “cure,” but there is a proven effective treatment regimen that blends home care and lifestyle changes with clinical treatment protocols to ease neuropathy pain.
You’ve already taken the first step by reading this article. An informed patient is a powerful patient! For more concrete, practical information about neuropathy and how you can turn your symptoms around, take a look at the neuropathy owner’s manual: I Beat Neuropathy!
Top 5 Neuropathy Myths is a post from: #1 in Neuropathy & Chronic Pain Treatment
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If You Are Experiencing Peripheral Neuropathy Symptoms Following a Major Surgery, You Are Not Alone. Keep Reading to Learn Why This Happens and What You Can Do About It.
Recovering from surgery is always a bit of an ordeal. It can feel like a huge triumph just to avoid infection, wean off those post-surgery medications, and start feeling somewhat normal again.
Unfortunately, surgery can sometimes cause brand-new neuropathy problems, including:
- Nerve pain
- Extreme sensations of warmth or cold in the skin of extremities
- Inability to sense vibration or touch
- Burning or tingling in feet and hands
There are a lot of reasons why you could be experience neuropathy pain after surgery. Let’s take a look at three of the most common reasons.
First of all, the use of general anesthetic, especially prolonged use in lengthy surgeries, can cause hypoxia. This is a condition in which the anesthetic prevents certain types of nerves in your body from getting the right amount of oxygen, leading to damage.
In addition, nerve compression, leading to neuropathic pain, can be caused by conditions like carpel tunnel syndrome and sciatica. Experiencing neuropathy symptoms after a surgery that intended to alleviate these conditions could simply be a new awareness of existing symptoms that were not adequately addressed by the surgery.
The question is, now that you know you have neuropathy—a real condition, not something that’s “all in your head”—what can you do about it?
There are several steps you can take right now to alleviate your neuropathy pain.
First, make an appointment for a consultation with a trained neuropathy doctor who can accurately diagnose your nerve damage issues along with any global health problems (such as diabetes) that can exacerbate your symptoms. Trained NeuropathyDR® clinicians are knowledgeable in customizing available treatments to address your unique neuropathy symptoms and health needs.
Next, begin to educate yourself so that you can be your own most effective healthcare advocate. Learn all you can about neuropathy treatment, including home treatment options and beneficial lifestyle changes that can keep your symptoms at bay.
Be sure to check out our Self-Guided Care page to learn more about at-home peripheral neuropathy treatment options, including the FDA-approved NDGen Home Care Kit.
Peripheral Neuropathy Symptoms After Surgery is a post from: #1 in Neuropathy & Chronic Pain Treatment
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Don’t Overlook This Key Nutrient’s Impact on Your Neuropathy Diet!
Would you believe that 20 years ago, I was treating diabetic neuropathy with a specialized neuropathy diet? Then and now, one of the components of a therapeutic diet for neuropathy includes inositol.
Unlike vitamins (which have to be absorbed from dietary sources), inositol is one of a few substances that our own bodies can produce. We naturally synthesize inositol, a type of carbohydrate, from glucose.
The thing is, we don’t really make high enough amounts to be considered a therapeutic dose, so we have to supplement through dietary intake.
Why is inositol so important? In particular, why is it vital for people with neuropathic pain who need a healing neuropathy diet?
In short, this substance helps your body to lower cholesterol and break down fats. Inositol also has a positive effect on the way that insulin interacts with certain types of cells—which is why diabetic neuropathy sufferers need to know about this important supplement. If you’re dealing with diabetes and its side effects, you already know that insulin is a pancreatic hormone that has several vital roles in the body, including fat storage and control of blood sugar.
Other patients who have been helped by inositol include women with polycystic ovary disease (PCOD), as well as those with non-standard lipid profiles like those found in metabolic syndrome. In addition, mental health challenges like bipolar disorder and depression have sometimes been treated with inositol due to its known capacity to positively support brain function and nerve health.
For your neuropathy diet, some of the best sources of inositol include fruits, nuts, and several types of vegetables. Naturally, if you are struggling with neuropathy related to diabetes, you will need to limit fruit intake because of its sugar content.
Looking for more information about the effectiveness and format of the ideal neuropathy diet? Click here for I Beat Neuropathy, a comprehensive guide to self-treatment through diet and lifestyle changes.
Neuropathy Diet Essentials: What You Need to Know About Inositol is a post from: #1 in Neuropathy & Chronic Pain Treatment
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Knowing the Benefits Isn’t Enough to Elicit Lifestyle Change for Chronic Pain… So What Is?
By Carol Jeffrey
The World Health Organization (WHO) has defined “health” as not merely the absence of disease but as a “state of complete physical, mental, and social well-being.” That’s a rather rigid utopian view, however; an increasing amount of research is showing that patients fare much better when a multifactorial treatment approach is used to combat disease. In sharing my experience, I will expound on the physical, mental and social factors associated with making a healthy lifestyle change for chronic pain in our mindset and diets.
Whenever I heard the word “diet” my thoughts went directly to lack of comfort food, deprivation and fear of failure, but these were misguided thoughts. This reminded me of a study which showed that one’s mindset could alter a person’s visual acuity. “Because the letters get progressively smaller on successive lines, participants expected only to be able to read the first few lines on a traditional eye chart. When the participants viewed a shifted and reversed chart, they were able to see letters in which they previously couldn’t identify. This showed that mindset manipulation can counteract physiological limits imposed on vision.” (Believing Is Seeing…, Langer E, Dept. of Psych, Harvard.) Shifting my view allowed me to see not only the gains of feeling better from eating a well balanced diet, but the losses that I had incurred from making poor nutritional choices. I used this information to reframe the word “diet” into new thoughts of nutrition, health, and well-being. The success of healthy eating depends not only on our mindset, but understanding how the mind-body connection affects our eating habits.
Let me briefly explain what the mind-body connection is about. It’s important to “be present to one’s self” in a way that fosters self-awareness and acceptance…this allows us to change. I used to work in a physician’s office, and I usually scarfed down my lunch between patients and phone calls. This ended up being a mindless task of squelching my hunger pains with food devoid of nutritional value, leaving me lethargic by the end of the day. Often, after the long commute home I would be too tired to cook, so I’d stop for fast food, only to ingest more food devoid of nourishment. My mindlessness carried on into the late evening when I would find myself absentmindedly munching on snacks as I relaxed. My poor eating habitsextended Into my weekend, not due to lack of time but due to the social pressures of eating out with friends…where healthy food choices were limited. I was not psychologically present while eating nor mindful of my food choices.
Unfortunately, prolonged psychological stress, years of detrimental lifestyle, and poor eating habits had greatly contributed to my poor health. This eventually led to physical disability, unemployment, and the inability to do many of the things that I once loved. I was finally ready to break this cycle, and needed to become aware of the circumstances which led to my poor lifestyle choices and eating habits. I began paying attention to my internal dialogue (i.e., I don’t want to let them down, I’m expected to “…” I know I should choose the salad but I’ve had a difficult day so I deserve to eat what I want. I’m feeling anxious…Ice cream is always soothing. I’m not overweight so it isn’t like I’m pigging out). When I quit accepting my excuses, I became more mindful of my thoughts and choices, and discovered that I had much more control over my health than I had previously realized.
By this time I had reframed my thoughts about diet, understood the mind-body connection, was mindful of my choices, realized I had control over many aspects of my health. Yet, I was still depending upon my physician to heal me, or at least make me feel better with pharmaceuticals. Which leads me to the next issue I needed to address.
I had been encultured into believing that it was my physician’s job to heal, and the pharmaceutical company’s job to relieve my pain. If I failed to get better, it wasn’t my fault, or was it? “In 2012, the pharmaceutical industry spent more than $24 billion on marketing to influence physicians, and over $3 billion in advertising to consumers.” (Cegedim Strategic Data) Traditionally, very few non-M.D. or non-D.O. practitioner appointments or treatments have been covered by insurance. These practices enculture and direct us into accepting the limitations that Western medicine on its own has to offer. It also moves us further away from more natural treatments and the means of self-healing. The strategies used by insurance and BigPharm are contrary to obtaining optimal health, since integrative medicine has shown to be most effective in managing disease. Now that I understood why I was so dependent on my physician, what could I do about it?
Fabrega Horacio, Jr. wrote an interesting article (Sickness and Healing and the Evolutionary Foundations of Mind and Minding) which shows how non-human primates (i.e., chimpanzees) are reliant on self-healing behaviors that not only remedy illness but prevent many illnesses, through social functions and diet. I had been relying on my doctors to heal me and a pill to ease my pain, instead of taking personal responsibility, and using preventive and self-healing behaviors…like the chimps. I understood that eating a healthy diet along with living a well balanced life was essential for pain reduction, but I still wasn’t motivated to change.
Pain is fundamentally unpleasant, and is designed to protect by promoting motivation and learning. I was now enlightened to the fact that my lifestyle and poor diet were fueling the raging fire within my damaged nerves. However, like many others, I have an aversion to change and even though the reward of pain relief should have provided enough motivation to elicit change…it wasn’t. It is said that most people are motivated by one of two things, “inspiration” or (in my situation) “desperation.” My chronic pain was extremely difficult to handle, but it was the lack of being able to engage in life that made me desperate enough to make changes. My attitude and desire toward change had evolved from I wish, I want, to I must. My reason to change had now been clarified and my need for change had transformed from I should, I intend, to “I am” making a lifestyle change for chronic pain. However, what would keep me motivated? This is where goal setting came into play.
“Remember the word ‘SMART.’ Successful goals are Specific, Measurable, Achievable, Realistic and Timely.” This is based on research conducted by Dr. Edwin A. Lock of the University of Maryland.
- Specific: I asked myself what my life was currently missing and what I wanted in my life. Connecting life goals to specific health-related goals clarified the reason I wished to be well and what I would do once my health improved. Thereby answering the questions what, where and why.
- Measurable: I then determined how I would accomplish and measure my success. (i.e. Add three new organic, non processed foods to my grocery cart each week. Actively work with my doctor on natural pain relief techniques at each visit. Exercise as tolerated but do it two times a week. Do one thing each day to prepare me for a less stressful career.)
- Achievable: I then asked myself if I had the skill, tools, and resources needed. (i.e. I researched YouTube, and I borrowed books from the library to learn about natural pain relief techniques, meditation, healthy diet, etc., and sought out physicians who practiced integrative medicine.)
- Realistic: To avoid frustration, I focused on honest goals that I believed were obtainable. There was plenty of evidence to show that changing my lifestyle and eating a healthy diet would decrease my pain and improve my quality of life. It was realistic to train for a less stressful career. Total health and no pain was impossible; however, controlling diet, decreasing narcotic use and learning healthier ways of dealing with pain were within my control.
- Timely: I gave myself one year to turn my health around and begin a new career. This goal challenged me but it was possible. I set daily, weekly and monthly goals which were frequently reviewed and revised as necessary.
There aren’t any shortcuts to change, including a lifestyle change for chronic pain. I had to reframe my negative thoughts, become more self-aware and mindful of my decisions, accept personal responsibility for my health, incorporate self-healing behavior, determine what would motivate me, set and commit to my goals.
The rewards of an improved quality of life came by default as I achieved my goals. I have not yet reached the utopia of health that the WHO refers to, but I have significantly decreased my pain level and again live an active and meaningful life. This article reflects my journey, but more importantly, I hope it encourages and guides you to make your own changes so that you too may live life to its fullest.
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Lifestyle Change for Chronic Pain: How Do You Do It? is a post from: #1 in Neuropathy & Chronic Pain Treatment
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