Lifestyle and Neuropathy interview with an expert in the field

Okay, most HIV patients who also have neuropathy, try to change their lifestyle in some way, to try reduce some of the worst effects of the disease. That's normal; it's not obligatory, it's just a normal reaction to try something out if someone advises you that it will help...so how does a bad diet, drinking and recreational drug use affect people's neuropathy? These are just some of the questions in this interview for Aidsmap.com files (see link below) with Dr Hadi Manji, one of only a handful of neurologists in the UK with extensive clinical experience of HIV-related neuropathy.

ATU: How can you tell whether the neuropathy is caused by HIV or by the medicines used to treat it?

Dr Hadi Manji:The presentation of HIV neuropathy is very similar to drug-related neuropathy, but there are some clues to tell whether it is the drugs or not. Sometimes the drug-related neuropathies come on very rapidly, almost explosively.My impression is that drug-related neuropathies may also be more painful. And if there's involvement of the fingers, that, to my mind, would be more drug – than HIV-related.

ATU: How many people have both HIV and drug-related neuropathy together?

HM: In my experience, a lot of people – up to 60% – who develop neuropathy that is attributed to the drugs are still left with neuropathy when they stop the offending drug, despite some improvement. My feeling is that these individuals probably had asymptomatic HIV related neuropathy that was unmasked by the drugs.

ATU:What other factors can make neuropathy worse?

HM:The bottom line is, if you've got nerve -related problems for whatever reason – HIV or antiretrovirals – and you add another factor that damages nerves, you are more likely to cause further damage. For example, when I see patients, I ask about alcohol intake, because alcohol damages nerves, making you more vulnerable to neuropathy.

ATU: How much alcohol is too much?

HM: It would seem reasonable that anyone who drinks more than the recommended 21 units a week for men [14 for women] may be more vulnerable. It's impossible to be categorical about these things because the other factor in alcohol-related neuropathy is vitamin B deficiency due to poor diet.

ATU: Does that also mean that people who use recreational drugs, and have a poor diet, could get neuropathy?

HM:There's no evidence that recreational drugs themselves cause neuropathy. However, the poor nutrition that can accompany drug-taking could certainly be a factor, since it is deficiency of the B vitamins which is important for nerve function.The cause of neuropathy in people who eat badly for any reason is usually thiamine (vitamin B1) deficiency.

ATU:Would you suggest that people whose diet is likely to be poor, for whatever reason, supplement with a vitamin B-complex tablet?

HM: I think that's reasonable, but with a caveat. One of the B-complex vitamins, B6, if taken in excess, causes neuropathy. At one stage in New York, B6 overdose was a common cause of neuropathy, because people were taking too much in their supplements. It's also worth checking B12 levels if you're a vegetarian, or if you have chronic diarrhoea.

ATU:What else do you check for when you see your patients for the first time?

HM: Diabetes is a cause of neuropathy, so I always check my patients' blood sugar. I also check to see if there are any other drugs that could cause neuropathy. For example, isoniazid, which is used to treat TB, can cause neuropathy.

ATU: What about co-infection with hepatitis C?

HM: Although there is a mechanism by which hepatitis C can cause neuropathy, it is very rare. I haven't seen more neuropathy in coinfected patients.

ATU: Are all the d-drugs equally likely to cause neuropathy, and of all the HAART medications, is it only d-drugs that can cause neuropathy?

HM: Of the antiretrovirals, only ddC, ddI and d4T are associated with neuropathy.The others aren't. ddC used to be the worst offender, but use of that drug has reduced significantly. In fact, compared with the early studies, incidence of neuropathy from all of these drugs is reducing for two reasons. First, lower drug doses are being used. Secondly, people aren't quite so immunosuppressed when they start the drugs, so they don't run the risk of this asymptomatic HIV-related neuropathy, as it is less likely to occur in people with higher CD4 counts.

ATU: How do you treat people with neuropathy who have no option but to
remain on d-drugs?

HM: Often, if the person is doing well as far as CD4 count and viral load are concerned, both the patient and HIV doctor are not that keen on stopping the d-drug.You could consider reducing the dose of the offending drug, but then there are concerns about resistance. Otherwise, all we can do then is to control the symptoms by using other drugs to make life a bit more bearable.

ATU: Do you prescribe antidepressants?

HM: I think they have a role to play, so I wouldn't write them off completely. I tend to use one of the tricyclics, amitryptyline.The crucial
thing is to start at the lowest possible dose (10mg), since it causes drowsiness. However,this does work in the patients' favour,particularly if they take it at night, because they can get a decent night's sleep.

ATU: Given the promising pain-reducing qualities of smoked marijuana presented at the recent Retroviruses Conference, would you support its use in the UK?

HM: In terms of other neuropathies, I have had patients who have said that smoking cannabis may be helpful.These results from San Francisco are preliminary, and it's never been trialled in a formal setting. Since there is no definite evidence to its benefit, I currently wouldn't be able to recommend it.

ATU: Before HAART, about one third of people reported HIV-related neuropathy. Why hasn't the incidence of neuropathy decreased in the HAART era?


HM: It's a combination of people living longer, and use of the d-drugs.We may see even more neuropathies appear as people with HIV are living longer.This is because there may well be increased risks for other causes of neuropathy that we currently see in non-HIV peripheral nerve clinics – diabetes, for example. So, when doctors see patients who are ageing with HIV, they will have to consider not just HIV or the drugs they take, but the other causes, too.

http://www.aidsmap.com/files/file1000724.pdf

Exercise And A Better Lifestyle Improve Neuropathy

 Today's post comes from denverpost.com (see link below) and is written by a certified fitness trainer. It talks about what you can do to help neuropathy problems in terms of exercise. You may think it's a little simplistic but the fact is that exercise is important for neuropathy patients, even if it is just to strengthen your frame and muscles so that they can bear the weight of your body better when your feet and legs aren't playing by the rules. As a whole, there is some good advice here for people who haven't yet accepted what they ought to be doing. You can only do what you can do, so if it is too much then take it easier and try to build up to more each week.

 

Exercise and weight control relieve peripheral neuropathy

By Linda J. Buch

 Q: I have diabetes and have been told I have peripheral neuropathy as a result. What kind of exercising can I do? — J.J. Gruber, Newark, N.J.

A: The Neuropathy Association reports that more than 20 million Americans have peripheral neuropathy, which is defined as a problem with the nerves that carry information to and from the brain and spinal cord to the muscles, skin, joints and internal organs. This causes numbness, pain, weakness and poor coordination. It is important to contact a neurologist for diagnosis and treatment as soon as symptoms are noticed to avoid or slow permanent damage.

According to the National Institute of Neurological Disorders and Stroke, peripheral neuropathy can be caused by:

• Physical injury or trauma to a nerve, often from repetitive motion or pressure from a cast or crutches
• Tumors
• Toxins and/or exposure to poisons
• Autoimmune responses such as lupus and rheumatoid arthritis
• Nutritional deficiencies, especially of vitamin B
• Alcoholism
• Vascular and metabolic disorders such as diabetes
• Genetics

The staff at the Mayo Clinic recommends the following steps to treat this disease:

1. See your physician for medication and pain relievers, including lidocaine patches and possible antidepressants.

2. Eat a healthy diet. Be sure to include B-12 food sources (meats, fish, eggs, low-fat dairy and specially fortified cereals) to get a diet rich in fruits, vegetables and whole grains. B-12 supplements may be required if you are a vegetarian.

3. Take care of your hands and feet. Check every day for blisters, cuts and calluses. Do not wear tight shoes or socks.

4. Exercise. Consistent and regular exercise can relieve pain and will also keep weight under control, which will relieve pressure on the feet and improves circulation to the extremities.

5. Reduce or eliminate alcohol consumption, which adversely affects circulation.

6. Quit smoking. Smoking also adversely affects circulation.

7. Massage hands and feet daily. Massage not only improves circulation but also stimulates the nerves and can temporarily relieve pain.

8. Avoid prolonged pressure on hands and feet. Be careful with crossing your legs, standing for great lengths of time or leaning on your elbows too long. This can make your current situation worse and cause new damage to the nerves.

Archived reports at the independent medical research database, the Cochrane Library, suggest that strength training can be effective for those with this disease. Even though most of the research on strength training for neuropathy was tested on people with diabetes, the research results have been consistent: Those who participated in the resistance- training program moderately improved muscle strength. Improvements in being able to perform basic daily activities — such as walking to and from cars — were also reported.

Other suggestions are walking a little bit each day (followed by massaging the feet), water exercise classes, yoga or other stretching regimens, tai chi and/or qigong, Pilates and using a stationary bike. Always start slowly and increase speed or intensity of any exercise cautiously. Squeezing a soft ball has been found to be helpful for the hands. Warm baths and acupuncture can help too.

Linda J. Buch is a certified fitness trainer in Denver

http://www.denverpost.com/fitness/ci_18016919

 

 

 

 

 

How To Change Your Lifestyle To Help Neuropathy Pain

Today's post from neuropathydr.com (see link below) is a 'self help' post designed to make you re-evaluate any daily habits you might have that may influence the amount of pain and discomfort you may have. Now nobody is suggesting that your pain isn't real and that your neuropathy symptoms can be cured by simply changing your attitude towards them. If there is any gain to be made by following the suggestions in this article, it's that you may be able to reduce the strength of the symptoms by adjusting certain habits you have and equally adjusting your lifestyle to make choices that will benefit you. Reading the article will probably make you wonder if, indeed, there are a few things that you could do better. Must be worth a try!

Lifestyle Change for Chronic Pain: How Do You Do It?
Posted by Editor on October 16, 2014

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.

REFRAMING

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.

MIND-BODY CONNECTION

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 absent mindedly munching on snacks as I relaxed. My poor eating habits extended 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.

BEING MINDFUL

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.

MISGUIDED DEPENDENCE

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.

ENCULTURED

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?

SELF-HEALING BEHAVIOR

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.

MOTIVATION

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.

GOAL SETTING

“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.

What is your experience with lifestyle change for chronic pain? Talk with us at our Facebook page.

http://neuropathydr.com/lifestyle-change-for-chronic-pain/