Sexual Problems for Men with Neuropathy

This is another topic which has been covered before on the blog but recently a 50 year old man from Arkansas mailed and said that despite having both neuropathy and HIV for some years, his doctor had told him that his erectile disfunction was a result of his age and a lifetime of smoking, nothing more. This may perhaps be the case but some doctors need to realise that ED can definitely be a result of neuropathic complaints and not dismiss someone's concerns with a cliche. Losing their potency is a really big deal for many men and having a genuine medical reason for it can perversely, ease the blow. This article is from medicalxpress.com (see link below) and shows the link between ED and neuropathy revealed by the results of Spanish research in this area.

Erectile dysfunction study shows high prevalence of peripheral neuropathy
November 15, 2011

Spanish researchers have uncovered clear links between erectile dysfunction (ED) and peripheral neuropathy, according to a paper in the December issue of the urology journal BJUI.

"Up to now the impact of damaged nerves in the peripheral nervous system on ED has been underestimated" says lead author Dr Consuelo Valles-Antuña, from the Department of Neurophysiology at the Hospital Universitario Central de Asturias in Oviedo.

"However our study of 90 patients shows that men with more severe symptoms of peripheral neuropathy, which can be caused by disease, trauma or illness, had greater self-reported ED and required more aggressive treatment.

"Our findings underline the importance of clinicians carrying out neurophysiological tests on patients with ED, particularly in the pelvic area."

The research team, which included experts on both neurophysiology and urology, studied 90 consecutive patients with sexual problems recruited from the hospital's Department of Andrology.

ED was diagnosed using the five-item version of the International Index of Erectile Dysfunction (IIEF-5) and the occurrence of peripheral neuropathy was predicted using the Neuropathy Symptom Score.

A range of neurophysiology tests were carried out to assess the presence of large and small fibre peripheral neuropathy.

The researchers found that:

•The average age of the men in the study was 54 years of age. Ten per cent were under 40 and only two per cent were over 70.
•No significant correlation between IIEF-5 scores and increasing age was found. In fact, younger patients had lower (worse) IIEF-5 scores, which could be due to higher expectations or a higher number of organic risk factors.
•Just under a third of the patients (30 per cent) had cardiovascular disease, 16 per cent had neurogenic risk factors (relating to the nerves or nervous system) 16 per cent had diabetes and 11 per cent had no risk factors. Just over seven per cent had been diagnosed with mental health issues.
•Patients with more severe symptoms of peripheral neuropathy showed lower (worse) IIEF-5 scores and required more aggressive therapies.
•Neurophysiological exploration confirmed that just under 69 per cent of patients had neurological pathology. Of these, 61 per cent had some type of peripheral neuropathy and eight per cent had myelopathy - problems with their spinal chord.
•Just under 38 per cent of the patients had polyneuropathy, which occurs when a number of the peripheral nerves throughout the body malfunction simultaneously. Of these nine per cent had small fibre neuropathy, damage to the small unmyelinated peripheral nerve fibres, and just over 14 per cent had pudendal neuropathy, affecting the somatic nerve in the pelvic region.
•The findings of the sympathetic skin response tests underlined the importance of checking nerve problems in the pelvic area, as response alterations were much more common in the penis than hand or foot.
•No association between neurophysiological diagnosis and IIEF-5 scores was detected, but a statistical association was found between neuropathy and the Neuropathy Symptom Scores.
."To our knowledge, this is the first study to assess the whole peripheral nerve fibre spectrum in a non-selected group of patients with erectile dysfunction" says Dr Valles-Antuña.

http://medicalxpress.com/news/2011-11-erectile-dysfunction-high-prevalence-peripheral.html

How Fast Do Your Nerves Degrade With Neuropathy

Today's post from relief.news (see link below) looks at the current means of testing for small fiber neuropathy and suggests that instead of just doing one nerve biopsy to measure the number of nerve fibers in a given piece of skin, it's better to measure over a period of time, to get a more accurate diagnosis of how the damage progresses. This seems to be common sense. In that way, you may avoid an unnecessary idiopathic neuropathy diagnosis (no known cause) and be able to tell the patient that they definitely have small fiber neuropathy, or not as the case may be. Unfortunately due to time and cost pressures, most neuropathy patients never get as far as a skin biopsy and a diagnosis is given based on their story and symptoms alone. Nothing wrong with this for the patient, as long as the diagnosis is correct and the type of neuropathy is pretty much certain. Most neuropathy patients have small fiber neuropathy but are generally told their nerve damage is peripheral neuropathy and seldom hear about the size of the nerve fibers. However, for many patients, it's the larger, longer nerves that are affected. Large fiber neuropathy nerves are responsible for motion control, touch, proprioception and vibration and small fiber nerves perceive pain and temperature changes.The small autonomic fibers control heart rate, blood pressure, gut function and they mostly involve temperaturel perception, giving many of the symptoms that most of us feel.
 If you look at the functions of the different nerves then, you'd rightly conclude that it's pretty important to get the testing diagnosis right. However, once the cause and area have been established, the treatment for most forms of neuropathy tends to follow the same route (unfortunately often with limited success). For that reason many doctors feel that because the symptoms are so peculiar and unique to nerve damage, they don't need to impose expensive and often inconclusive tests on a patient who's already suffering enough. This article however, argues the case for better and more comprehensive testing especially on a biopsy level but maybe that's more for the benefit of the doctors and scientists, who are interested in how the disease progresses, than the patient who just wants the pain and discomfort to be brought under control. Then again, the more science can get to the bottom of how nerve damage happens and progresses, the more likely effective treatments will emerge in the future. One thing is sure, present testing for neuropathy often falls short of being accurate but as a patient, you don't care - the diagnosis is obvious...now treat me...please!

Nerve Fiber Loss in Small-Fiber Neuropathy: It’s Not Just How Much, But How Fast
Matthew Soleiman · August 8, 2016

A recent study shows that looking at the change of nerve fiber density over time can help diagnosis.

If you ask someone with small-fiber neuropathy (SFN) what they feel in their feet, they may say pain, tingling, or numbness—symptoms that develop as nerve fibers degrade. When diagnosing SFN, it is routine for physicians to measure the number of nerve fibers in a patch of skin at a single point in time. However, some patients with clear symptoms of SFN can nonetheless have normal quantities of nerve fibers, suggesting that doctors need additional ways to help them make a diagnosis.

Now, a small study published recently in June, in the journal JAMA Neurology, builds the case that measuring the change in nerve fiber density over time, rather than only taking a snapshot at one single moment, could serve as an additional way to determine who has SFN.

How does small fiber neuropathy evolve over time?

Knowing that nerve fibers retract from the skin in SFN, the study authors sought to find out how this loss of fibers progresses. “One motivation [for the current study] was to define the natural history of this process,” says researcher and neurologist Michael Polydefkis, Johns Hopkins University, Baltimore, US, who led the study.

To this end, lead author Mohammad Khoshnoodi and colleagues measured the density of nerve fibers in skin biopsies from patients with SFN, and from healthy volunteers used as controls, at an initial evaluation. They did the same two to three years later at a follow-up visit, and compared the results to the first assessment.

Because symptoms of SFN commonly start in the feet and work their way upwards, the researchers were also interested in the pattern of fiber loss across different areas of the body. As a result, they took skin biopsies from three spots along the leg at varying lengths from the foot; the areas closest to the foot are known to have the longest nerve fibers.

Though study patients had SFN from different causes–either SFN associated with diabetes, SFN associated with pre-diabetes (the precursor stage to diabetes), or SFN without a known cause—they all showed similar decreases over time in the density of nerve fibers, compared to healthy volunteers who showed no such changes. This suggests that those with SFN lose nerve fibers in the skin gradually over time. Interestingly, the rate of nerve fiber loss did not differ at the three spots along the leg where the researchers made their measurements.

The new work, which confirms similar results from smaller, previously published studies, points to the change in the density of nerve fibers over time as a new variable to track in diagnosing SFN, says Anne Louise Oaklander, a pain researcher and SFN expert at Massachusetts General Hospital and Harvard Medical School, who was not involved in the study.

Are longer fibers more susceptible?

The lack of differences in the rate of nerve fiber loss between the different areas along the length of the leg was unexpected, says Polydefkis, given the prevailing view that SFN affects the longest nerve fibers first. “In my opinion, this shows us that SFN might be a more diffuse process than we thought previously,” writes Khoshnoodi in an email to RELIEF.

But others remain skeptical about that conclusion. In an accompanying editorial, John Kissel, Ohio State University Wexner Medical Center, Columbus, US, and Gordon Smith, University of Utah School of Medicine, Salt Lake City, US, write that the density of nerve fibers, as well as how quickly the fibers were lost, were surprisingly high in the SFN patients, compared to past reports. If patients continued to lose fibers at the rate seen in the study, some areas higher up on the leg would eventually become devoid of fibers, something that is rarely seen. Thus the population examined in the study may not be representative of most SFN patients.

On the other hand, while it is true that SFN patients first report symptoms in the feet, Polydefkis says that this pattern may simply reflect that different areas of the body have different numbers of nerve fibers to start out with. That is, in healthy people, the thigh contains 30 percent more fibers than areas further down the leg. In SFN patients, perhaps it is not surprising that the fibers furthest down the leg appear to get hit the hardest, if there aren’t as many of those fibers in that area to begin with.

Regardless, the current results hold promise to help doctors improve how they diagnose SFN. —Matthew Soleiman

To read about the research in more detail, see the related Pain Research Forum news story here.

Matthew Soleiman is a neuroscientist-turned-science writer currently residing in Nashville, Tennessee. Follow him on Twitter @MatthewSoleiman.

http://relief.news/nerve-fiber-loss-small-fiber-neuropathy-not-just-much-fast/

Can Chiropractic Techniques Help With Neuropathic Problems

Today's post from diabetesnewsjournal.com (see link below) addresses the perennially thorny topic of whether chiropractitioners can be of help to neuropathy sufferers. It's fair to say that 9 out of 10 neurologists will dismiss this idea with a snigger but there are many cases of nerve damage patients being helped by chiropractic techniques but it may depend on the cause of the nerve damage and whether that can be helped directly. At least this article doesn't claim that chiropractic care can 'cure' neuropathy; it makes a claim for this sort of care to be an element in an overall strategy. If you see chiropractic clinics offering 'cures' for nerve damage, please ignore them and don't waste your money or run the risk of further damage. These clinics, or so-called medical practitioners can not provide a cure - there is no cure - end of argument. However if a chiropractioner offers his or her services as part of a wider treatment strategy, it may be worth discussing it with your home doctor or neurologist. Remember though, if you're paying for this treatment, you need to be convinced that it will help.

Chiropractic Care May Help Control Peripheral Neuropathy in Diabetics
March 17th, 2015 Leonor Mateus Ferreira 

While about 60% of patients who suffer from diabetes also develop peripheral neuropathy, a nerve condition that causes tingling, numbing and tickling in the extremities, the Raveling Chiropractic Center is implementing a new technique to treat the disease. According to the center, chiropractic care may offer several benefits to treat the disorder.

Chiropractor Paul Raveling administers chiropractic care at his center with patients who suffer from peripheral neuropathy to help with the management of pain as well by treating the underlying cause. In addition to pain and numbness, the condition can include a variety of other symptoms such as prickling and throbbing or a freezing sensation. In addition, it can also damage the brain’s capacity to communicate properly with regions of the body.

“Chiropractic care is an effective treatment for peripheral neuropathy because it targets the root cause for a patient’s pain symptoms; we do not simply rely on medication to numb this pain,” explained Raveling in a press release. “While chiropractic care is not a ‘cure’ for peripheral neuropathy, it is an important part of an effective treatment program.”

“Treatment programs that cover up the symptoms are ignoring the bigger problem. As a chiropractor, I follow a ‘whole body’ approach to treatment, which means we start by addressing the underlying trigger for a patient’s pain,” he continued, explaining that a diagnostic exam is conducted in order to identify the cause of the pain and understand which specialty of care is needed in addition to chiropractic care.

The chiropractor believes that early diagnosis and treatment may reduce the severity of the motor nerve and sensory nerve damage, as well as help patients with the management of the disease. In addition, Raveling noted that the pain symptoms associated with peripheral neuropathy indicate poor health conditions and need to be evaluated carefully.

Peripheral neuropathy is a condition often associated with diabetes, despite the fact it can also be caused by autoimmune disorders, tumors, nutritional imbalances or infections, and it can even be hereditary. The nerve disorder currently affects about 20 million people in the United States, according to the National Institute of Neurological Disorders and Stroke, and while the symptoms may seem unimportant, early diagnosis may prevent further complications.

“Everyone experiences peripheral neuropathy a little differently. For some individuals, the pain may come and go, while for others, the pain may be constant. As the condition worsens, individuals may experience coordination and balance loss, along with a freezing pain, muscle weakness or extreme sensitivity to touch. I urge anyone who may be experiencing these symptoms to seek immediate treatment,” added Raveling.

The University of Kansas and Irving-based company Reata Pharmaceuticals have also recently established a partnership to develop drug technologies discovered by a professor of medicinal chemistry Brian Blagg and professor of pharmacology and toxicology Rick Dobrowsky. These compounds, called “novologues,” are expected to become a treatment option for diabetic peripheral neuropathy as well.

http://diabetesnewsjournal.com/2015/03/17/chiropractic-care-may-help-control-peripheral-neuropathy-in-diabetics/

How To Help Problems With Standing If You Have Neuropathy

Today's short post from paincommunity.org (see link below) gives some practical tips for people who find standing for long periods of time both uncomfortable and painful (almost all neuropathy sufferers). In this case the advice applies to the kitchen. Worth a quick read.

TPC Comfort Cookin’ – Stand Your Ground: Comfortably
Posted by Janice Reynolds | February 11, 2014

Do you find that standing for any length of time can be difficult? Does that keep you from spending time in the kitchen cooking your favorite meals? I find that when your feet or hands hurt, your overall pain may worsen.

Tip #1: Look at what is under your feet.
One thing that can help is strategically placing a thick area rug in the kitchen. I highly recommend that it has a no skid backing and that the edges that do not roll up (which I have in my work area) or better yet–a gel mat. These can be found in stores or online by names such as “comfort “mat, “anti-fatigue” mat and “wellness” mats. They are widely available, in a variety of sizes as well as price ranges from low-cost to expensive. User reviews indicate that they have been helpful for back pain, a variety of foot problems, joint problems, and fatigue. I know when my rug has been taken up for cleaning that I notice the difference immediately.
Tip #2: Look at what is under your bum.
For those longer periods of time (like doing prep work) when it is really difficult to stand, a bar chair/stool (preferably with a study back) is wonderful. Just be sure, for you, it is easy to sit on, easy to get up on or down from and if it swivels that it does not move too freely that you miss your mark and down on the floor you go

http://paincommunity.org/tpc-comfort-cookin-stand-ground-comfortably/

Athletes Can Help With Pain Management

Today's post from eurekalert.org (see link below) looks at why it seems that athletes have a higher pain threshold than the general population and asks the question whether specific forms of exercise can reduce the need for pain-controlling drugs. Neuropathy patients have difficulty with most forms of exercise, so any new developments will need to be targeted towards the capabilities of people with chronic nerve pain. Studies will need to be carried out by people with a thorough knowledge of how neuropathy works but maybe electronic fitness equipment can be modified to stimulate the right muscles, nerves and organs.

 

Higher pain tolerance in athletes may hold clues for pain
management
Public release date: 17-May-2012

Regular exercise may help, according to new study in Pain

Philadelphia, PA, May 17, 2012 – Stories of athletes bravely "playing through the pain" are relatively common and support the widespread belief that they experience pain differently than non-athletes. Yet, the scientific data on pain perception in athletes has been inconsistent, and sometimes contradictory. Investigators from the University of Heidelberg have conducted a meta-analysis of available research and find that in fact, athletes can indeed tolerate a higher level of pain than normally active people. However, pain threshold, the minimum intensity at which a stimulus is perceived as painful, did not differ in athletes and normal controls. Their findings are published in the June issue of Pain®.

"Our analysis reveals that pain perception differs in athletes compared to normally active controls," says lead investigator Jonas Tesarz, MD. "Studies in athletes offer the opportunity for an evaluation of the physical and psychological effects of regular activity on pain perception, which might foster the development of effective types of exercise for relief in pain patients."
Researchers reviewed fifteen studies that evaluated experimentally induced pain threshold or tolerance in athletes compared to normally active controls. 568 athletes and 331 normally active controls were included. Eight of the studies were conducted in the USA, two in Canada, one in Australia, and four were conducted in Europe. The studies, which included both men and women, evaluated endurance sports, game sports, and strength sports. Twelve studies reported on pain tolerance, and nine studies examined pain threshold.
Athletes were found to have consistently higher pain tolerance in comparison to normally active adults. The magnitude of pain that athletes could withstand varied depending upon the type of sport in which they participate. For example, endurance athletes had a moderate tolerance for pain and their scores were fairly uniform. Athletes involved in game sports had a higher tolerance for pain than other athletes, but the results varied widely, suggesting that endurance athletes are more alike in their physical and psychological profiles, while athletes involved in game sports are more diverse.

The finding that regular exercise is clearly associated with higher pain tolerance, but pain thresholds are affected more ambiguously, likely has clinical implications, according to Dr. Tesarz. "Numerous studies of the effect of physical exercise in pain patients demonstrate a consistent impact on quality of life and functioning without an improvement in pain scores. It may be advisable in exercise treatment for pain patients to focus on the development of their pain-coping skills that would affect tolerance, rather than the direct alleviation of pain threshold," he notes.

"Further research is needed to clarify the exact relationship between physical activity and modifications in pain perception, and to identify the involved psychological factors and neurobiological processes. However, the observation that pain perception is modifiable by physical activity provides promise for the use of non-invasive methods with few side effects for patients with chronic pain conditions," concludes Dr. Tesarz.

http://www.eurekalert.org/pub_releases/2012-05/ehs-hpt051512.php

Can A Gluten Free Diet Help With Your Neuropathy

Today's post from themodernlucy.blogspot.nl (see link below) is a personal account (with no link to HIV) by a woman with neuropathic problems. She found that adopting a gluten-free diet helped considerably. A gluten free diet is not easy and may not be for everyone but there are certainly considerable numbers of people who's condition has been improved by cutting out gluten. If going the whole hog is too difficult, then reducing your intake of meat and dairy foods may help anyway.

How Peripheral Neuropathy Has Changed My Life
Thursday, June 7, 2012

Since about 4 months after my surgery, I have had peripheral neuropathy off and on. It basically feels like tingling and numbness in all my extremities, numbness in my face, and tingling on my scalp. Most doctors that I saw shortly after my experience felt that it was all psychological, but as time went on, I felt better and better psychologically but still had this feeling. I also had severe digestive issues.

I was told the only way to stop my stomach pain was to have surgery again. And, I was told that nothing would stop the peripheral neuropathy but more and more drugs. I refused both courses.

Today I can say that a gluten-free diet has improved both of these issues. I have tested it now for about the 4th time, and every time I go off the gluten-free diet, my peripheral neuropathy and brain fog get worse, and by the 4th time, they become unmanageable (I could barely get through the day). When I maintain the diet, these issues become nonexistent. Also, on the diet, I have no stomach pain or digestive issues.

Why does gluten-free help? I have no idea. I could be a celiac, but there is really no way to know. I am not willing to eat gluten for long enough to have a biopsy to verify that diagnosis because I just feel so horrible when I eat it. I have always had stomach issues, so it is very possibly that I've always had an issue with gluten. It could be postmenopausal gluten intolerance which is also very common. I plan to take it up with my doctor on my yearly appointment.

The fact that I feel so much better without the gluten is really amazing. I never thought I could get here. I do believe everything happens for a reason, and maybe I needed to have that surgery to get to where I am today with my health.

Our whole family is trying to eat a more whole foods diet. I am working on a new meal plan. I posted earlier about how I had finished a meal plan. Well, that was before I realized how crucial being gluten-free is to my well being, and it was before we decided not to eat as much meat and dairy products. We are now trying out new recipes and working on a new meal plan. I will start posting recipes soon.

 http://themodernlucy.blogspot.nl/2012/06/how-peripheral-neuropathy-has-changed.html

Ways To Piss Off People Living With Neuropathy!

Today's post from huffingtonpost.com (see link below) may seem light-hearted at first but can be real source of aggravation for people living with chronic pain and neuropathy. Have a copy printed and ready to hand out to the next 'well-meaning' friend or relative who dares to use any of these approaches!

8 Ways to Annoy a Friend With a Chronic Illness
Lisa Copen Founder of National Invisible Chronic Illness Awareness Week and Rest Ministries -  Posted: 09/10/2012

Roughly half of the U.S. population lives with at least one chronic condition, such as diabetes, lupus, multiple sclerosis, chronic back pain, migraines, and others. So one would assume that most people know basic etiquette skills when it comes to what to say to one who is chronically ill.

For instance, we all know that you shouldn't kick the tire of a wheelchair someone is sitting in, so why is it okay to tell someone with an invisible illness, "You don't look sick to me."

Here are some ways to quickly annoy an ill friend, and possibly even destroy the relationship.

1.) Remark on her treatment. "I'd be sick too, if..."

"If I saw all those doctors ... sat around waiting rooms ... never had to get out of bed ... took all those medications..." "If I was as sick as you say you are I would be trying acupuncture, supplements, something natural." "Those doctors know how to cure you but they wouldn't make any money then."

2.) Tell her she needs to fight the disease.

When she makes a wise choice about her limitations and pacing herself, she doesn't need your motivational speech. For example, if she cancels plans on you, don't fire back with, "You are letting the disease win! You have to fight it. You have to want to be well! Be strong!"

3.) Get excited to go somewhere because you can use her disabled parking permit.

None of us wants these placards, and we use them on only the most painful days. If you are driving, we may ask you to drop us off and then park the car, so the spot can be saved for someone else who needs it. Don't insist to use it, jump out of the car, and smile haughtily at a passerby, and then brag to friends, "Guess where we got to park?"

4.) Say, "You are so lucky because..."

"You are so lucky because you don't have to work... You don't have kids. You are so lucky you don't have to travel." Or here is a common one, "You are so lucky to be diagnosed with this at such a young age." Um... okay.

5.) Tell her that her illness is caused by stress.

"You need to slow down, you need to cope better, you are under too much stress." Basically it sounds like you are saying, "Most people -- including myself -- can cope with stress fine, but you do so poorly at it, you've brought this disease on yourself."

6.) Call attention to her assistive devices.

"You don't really need that cane. I think you are relying on it too much." "Once you start to use a wheelchair, you will forget how to walk." "I am not going to push you, so if you want to ride you will need to just learn to drive a scooter." Her appearance is also up for grabs if you don't value the friendship. "I would just die if I had to wear those shoes. I love my heels too much." "Maybe if you put a little effort into your appearance you'd feel so much better."

7.) Tell her about the cure you heard about.

Trust me, she has already heard about it -- the water, the juice, the chocolate, the supplements, and yes, even the reindeer antlers and mushroom tea. You may feel the need to share what you have heard, but she will likely tune you out as "one of those people," especially if you tell her you are a distributor.

8.) Ask her how she is and then try to one-up her story.

"Oh, you don't know pain until you have had run a marathon." "You think you're tired? Try being a single mom, while working." "Oh, that is nothing! You won't believe what happened when my neighbor's brother's son had surgery!"

Watch your words. When you go to another country the culture and language is different. Words that you say at home may be considered impolite or even obscene. People have had different experiences and so they interpret your words differently. So it is in the world of the the ill.

When you tell a workout buddy, "Hey, don't give in. No pain, no gain, right?" they interpret it much differently than one who lives with a chronic illness.

Talk to your friend. Say, "I have realized there are times when I have said the wrong thing. Can you tell me some things that encourage you -- and what irritates you? I don't want to be one of those friends you would rather avoid."

It sounds corny, I know. A bit like an assignment a counselor would give you. But we all want to be acknowledged, validated, and understood. If you ask this, your friend may still fall over, but it will be out of her surprise, not because you insisted she leave her cane in the car.

Lisa Copen is the founder of Invisible Illness Awareness Week, celebrating their 10th year September 10-16, 2012. Join her at http://invisibleillnessweek.com for the 5-day free virtual conference and download a free 80-page ebook, "263 Tips To Do More Than Just Get By."

http://www.huffingtonpost.com/lisa-copen/etiquette_b_1864792.html

How Do You Cope With Severe Neuropathy

Today's very useful, if lengthy, post from neuropathyjournal.org (see link below) is the first of two very different articles looking at how we learn to cope with our health problems as neuropathy patients. The advice given here is generally very valuable and definitely worth a read, whatever the extent of your pain and discomfort. You may not agree with everything but it's likely you'll find some very useful tips and ideas for coping with neuropathy in amongst it all. Recommended reading!

Coping With Neuropathy Pain, Anxiety, and Depression
By Scott Berman MD, Psychiatrist and Neuropathy Patient, (sibshrink225@msn.com); From Support for Neuropathy: Facebook Chat October 6 2011

Author of: Coping with Peripheral Neuropathy and Member of the Board of Directors, Network for Neuropathy Support, Inc.

There is a strong overlap between neuropathy pain, anxiety, and depression. Each of the three can raise the risk for having the other two. 30-60% of patients with chronic pain develop feelings of depression and anxiety. Pain and depression co-occur 30-50% of the time and each can cause the other.

Anxiety: Anxiety is to be expected in the face of being diagnosed with a chronic illness. Anxiety can take many forms. There is a difference between anxiety and chronic anxiety. It may be specific worries about the illness such as:

• Fear of relapse or worsening

• Fear of disability

• Fear of isolation

• Fear of stigma

• Fear of pain

There is no reason to suffer from chronic anxiety. There are very good treatments, including:

Non-medication methods:

Psychotherapy, including Cognitive-Behavioral Therapy (CBT): CBT involves learning to recognize the negative thoughts that lead to anxious feelings. Behavior therapy can include relaxation technique, gradual exposure to feared situations, and other techniques that allow mastery of fearful situations.

Relaxation training, which includes breathing exercises and progressive muscle relaxation

Mindfulness based stress reduction (very well studied): http://www.mindfullivingprograms.com/index.php

Mindfulness based stress reduction combines aspects of meditation and yoga. It is usually done in an 8 week group format although some people are offering online courses. The books and tapes are also available for sale although I recommend finding a trainer. Many hospitals and complementary/alternative medicine centers use it. It has a good track record in helping people with chronic illnesses cope better.

• Spiritual and faith based help.

• Exercise, Massage and Yoga.

Medication treatment:

“Benzos” (benzodiazepines) include valium, klonopin, Ativan, Xanax

SSRIs (Prozac, Lexapro, Celexa, Paxil, Zoloft): help with panic attacks, PTSD, generalized anxiety disorder, others

DEPRESSION

• Is it mental or physical?

• Is it psychological, neurological, or medical?

• Are the symptoms really caused by your mind?

• Why these questions are a sure sign of people who are not up to date about the mind-brain-body connection.

• Why treating depression is often ignored? There are a number of reasons.

• The patient is unaware that he or she suffers from depression.

• The patient is embarrassed to ask for help.

• The physician fails to make the diagnosis.

• The physician fails to treat the depression or under-treats it.

• The patient is embarrassed to go to a psychiatrist.

• The patient’s doctor or family is embarrassed to talk about psychiatric care with the patient.

• The patient is afraid that the doctors think their neurological symptoms are “all in their head.”

Psychiatrists have terms for illnesses that are essentially psychological but show up with lots of physical complaints: “somatoform disorder,” “somatoform pain disorder,” and “hypochondriasis.”

I have worked with lots of patients who have been labeled “head cases” by other doctors and I have learned a lot. First, my own illness convinces me that someone can be essentially mentally healthy, get stricken with a chronic and incurable illness, and then develop an incredibly long and unbelievable story (except to fellow sufferers) about their illness. I am frankly skeptical about “psychological” pain disorders. The many patients in whom I have uncovered underlying other medical problems have been very high.

POINT: Depression in neuropathy (as well as in other rare and “invisible” diseases) is often confused with the disease. That is, continued problems in function are often attributed to “psychological” or “psychosomatic” (misused word) issues. Patients often feel insulted when psychotherapy/psychiatric care is suggested. Bottom line: all pain is real (unless you are faking), and physical symptoms most often have physical causes. The role of the psychiatrist/psychologist/counselor is to help with the emotional issues that arise from the stress of a medical disease.

Symptoms of depression:

• Persistent depressed mood or loss of pleasure in previously enjoyable activities

• Sleep changes (difficulty sleeping OR sleeping too much)

• Loss of interest

• Feelings of guilt or worthlessness

• Low energy

• Poor concentration

• Appetite (very little or increased)

• Agitation, pacing OR slowing down, moving very little

• Suicidal thoughts or plans

POINT: In neuropathy sleep changes, low energy, poor concentration is common but having 5 out of 9 symptoms above should trigger an evaluation for depression.

Depression is treatable in the face of virtually every known physical disease, including cancer and AIDs. So you should expect to be able to have your depression treated with good responses.

The best treatment for depression is a combination of psychotherapy and medication. Some people prefer therapy or counseling without medication because they already feel over- medicated. Other people feel so bad they can’t even talk in therapy and do better when started on medication.

Antidepressants work (based on a study of antidepressants in pooled neurological disease

Some antidepressants also treat pain or anxiety

Antidepressants:

• SSRIs (Prozac, Lexapro, Celexa, Zoloft, etc.)—well tolerated but don’t do much for pain

• Tricyclics (Amitriptyline, Nortriptyline, others)—may help with pain and depression

• SNRIs (Effexor, Pristiq, Cymbalta)

• Others: Remeron, bupropion, vilazadone

Coping

Self-Management Strategies

• Used in many chronic illnesses with very positive results

• Can reduce disability and improve psychological well-being

• Can help with catastrophising, fear, and avoidance

• Dysfunctional beliefs about pain can become a central problem

• Pain self efficacy questionnaire: Pain Self-Efficacy Questionnaire You can take it now and at later points to see if you are making progress

• Stanford University Chronic Pain Self-Management Program : CPSMP

• Online Disease Management Program: Click here to sign up for online disease management program

Topics include:

• Managing frustration, fatigue, pain, and isolation

• Appropriate exercises for maintaining flexibility and endurance

• Appropriate use of medications

• Techniques for dealing with friends, family, and health professionals

• Healthy eating

• Making informed treatment decisions

• Disease related problem solving

• Advanced directives

POINT: It is not clear to me whether this program specifically addresses the needs of the Peripheral Neuropathy community. At some point we might want to develop our own materials for a Neuropathy Self-Management Program. The topics are a good outline of a lot of what we might cover!

Reorganizing your activities:

• Things I can no longer do (for example, power walking).

• Things I couldn’t do before, but can now (have time to write and do crafts).

• Things I do the same as before (like sitting in the sunroom watching a sunset).

• Things I can still do, but differently (can go to a mall, but need a wheelchair).

• Things I can do differently, just not ready to yet (such as go to a Phillies game)

(from Debbie Dawson, RN, Peripheral Neuropathy Patient)

Jobs/Recreation:

• Ask yourself exactly what part of your previous job/activity you enjoyed

• Talk with vocational/occupational specialists

• Don’t beat up on yourself

• Organize yourself and set small goals you can meet

• Try something new

• Know your ADA rights if you stay employed, and use the Job Accommodation Network (www.jan.wvu.edu Or 800-526-7234)

AVOID EXTREMES:

• You can tough it out with too little help OR become overly dependent on your doctor and family

• You can keep your illness a secret and avoid thinking about it OR you can discuss it openly and become self-pitying

• You can ask for help and risk being a burden OR be too independent and isolate yourself

• You can push yourself to the limit and risk getting sicker OR you can do too little and be more of an invalid than necessary

• You can be angry about your illness and then bitter OR you can focus only on counting your blessings and risk being self-delusional

(From The Chronic Illness Experience by Cheri Register)

SELF ADVOCACY

• Keep up to date

• Keep routine health care up to date (flu shot, other vaccines)

• Quickly and aggressively treat any other condition—you can’t afford to wait!

• Remember, just because you have neuropathy doesn’t mean you can’t get other illnesses.

• Reduce “excess disability” that is impairments in function from other causes such as other illnesses

Beware of advertisements and self reports of improvement from particular drugs or treatments:

• Self reports often are positive and careful studies often show no benefit—for example modafinil seems very helpful for fatigue in MS in self reports but showed no real benefit in a careful study

• Self reports can be influenced by placebo effects.

• Self reports can be influenced by those who actually report: it is possible that people are more likely to post a report of a benefit than of no benefit. People with great benefit or great side effects might post more often than people with mixed results. People with minimal symptoms in the first place might be less likely to be active in a support group either in person or online. Since we don’t know the characteristics of those reporting or choosing to join, we can’t draw good conclusions about actual results

• Advertisements are from people selling a product!

• Anything that promises 100% response is 100% garbage

CONCLUSION: Buyer Beware! While it is very useful to search the internet, Facebook, and support sites such as patientslikeme.com and disease specific sites, you have no guarantee of safety or scientific validity. On the other hand you might find useful information that general physicians might not be aware of.

SUGGESTION: Gather information from groups and online, and review it with qualified health professionals

CAVEAT: Even qualified health professionals have prejudices and distortions. University of Maryland Medical Center has a very popular Integrative and Complementary Medical Center featured in recent magazine article and multiple hard core “Western medicine only” doctors were quoted as dismissing it as quackery

EVALUATE: Is the drug safe in general? Have a lot of people taken it for other conditions? What are the risks? What are the costs? Is the treatment part of a big money-making scheme?

2ND CONCLUSION: You have to decide if using a medication or a treatment which is experimental or off-label is right for you. But go in knowing all the risks and benefits.

Staying Up to Date

Getting the internet to send you updates:

Google Alerts:

• Go to: http://www.google.com/alerts

• Follow directions to put in search terms (for example, neuropathy, neuropathic pain)

• Enter preferences and your email

• Get updates as Google finds them

PubMed Alerts:

• Go to www.pubmed.gov

• Register and get a username and password

• Log in

Go to: http://www.nlm.nih.gov/bsd/disted/pubmed.html

• Take the tutorials to learn how to search for articles

• Return to PubMed (http://www.ncbi.nlm.nih.gov/pubmed)

• Search for terms like Guillain Barré treatment

• Click on “save search”

• Follow prompts for how often you want new results sent to you by email

• Get on the email lists for the various neuropathy organizations!

RESOURCES:

Information

• The Neuropathy Support Network and FREE DVD “Coping with Chronic Neuropathy” (http:www.neuropathysupportnetwork.org)

• Peripheral Nerve Society: http://pnsociety.com/

• Societies/websites for particular neuropathy causing diseases (cancer, diabetes, Lyme disease, fibromyalgia, etc.)

• Foundation for Peripheral Neuropathy (foundationforpn.org) has extensive resource guides and lists many external resources under “Tools”

http://neuropathyjournal.org/coping-with-neuropathy-1-0-pain-anxiety-and-depression/

Strength In Knees And Ankles Less With Neuropathy

Today's short post from medicalxpress.com (see link below) may seem a no-brainer to many people living with neuropathy but it's always useful to have a symptom recognised and verified. Many neuropathy patients notice that their ankle and knee strength diminishes the longer they have the disease. Many people also put that down to age, or rheumatism or other causes but the fact is that extensor muscles in those areas are affected by nerve damage and the lack of, or incorrect nerve signals which normally control physical response. The link between nerves, muscles and instability then becomes another symptom of neuropathic problems.

Ankle, knee strength generation slower with diabetic neuropathy 

Oct. 14 in Diabetes Care (HealthDay)—

When walking up and down stairs, patients with diabetic peripheral neuropathy (DPN) are slower at generating strength at the ankle and knee compared to control participants, which may increase the risk of falls, according to a study published online Oct. 14 in Diabetes Care.

Joseph C. Handsaker, from the Manchester Metropolitan University in the United Kingdom, and colleagues examined 63 participants (21 patients with DPN, 21 controls with diabetes, and 21 healthy controls) walking up and down a custom-built staircase. Analysis included assessment of speed of strength generation at the ankle and knee and muscle activation patterns of the ankle and knee extensor muscles.

The researchers found that patients with neuropathy displayed significantly slower ankle and knee strength generation than healthy controls during stair ascent and descent (P; 0.05). Ankle and knee extensor muscles were activated significantly later by patients with neuropathy during ascent and they also took longer to reach peak activation (P; 0.05). Patients with neuropathy activated the ankle extensors significantly earlier during descent, while ankle and knee extensors took significantly longer to reach peak activation (P < 0.05).

"These changes, which are likely caused by altered activations of the extensor muscles, increase the likelihood of instability and may be important contributory factors for the increased risk of falling," the authors write. "Resistance exercise training may be a potential clinical intervention for improving these aspects and thereby potentially reducing fall risk."

http://medicalxpress.com/news/2014-10-ankle-knee-strength-slower-diabetic.html

The problem with Statins

You have probably heard of Statins. Statin drugs work by blocking a key enzyme in the production of cholesterol. Cholesterol is a natural product of the liver and in the right amounts does not pose a problem to the body. The body, however, sometimes produces too much cholesterol and that is often caused by poor dietary choices (you know what you eat!).

Statin drugs block the enzyme linked to the liver’s cholesterol production, thus inhibiting the liver’s ability to produce LDL. Your LDL cholesterol levels will often be measured in a standard HIV blood test and you may have heard that LDL levels should be lower and HDL cholesterol levels should be higher. Statin drugs can achieve this for people with cholesterol problems. Studies have also shown that statin drugs can help the body reabsorb cholesterol that has accumulated on the artery walls.

As HIV patients we have to be more aware of our cholesterol levels than most. HIV patients are at a higher risk for cardiovascular disease in part due to lipid abnormalities that can occur with the use of certain antiretroviral therapies so Statin drugs may be prescribed to help maintain healthy cholesterol levels.

However... Statins themselves can cause Neuropathy!

Time to talk to the doctor again, if you are advised to take these drugs. If you don't already have neuropathy, there isn't too much risk until you begin to show symptoms but if you already have neuropathic problems, it's important to discuss the consequences of statin use with your doctor. It's also important to realise that statins can have other side effects too; especially muscle pain or weakness. Sometimes just one more side effect can be one too many for the long-suffering HIV patient. Always ask - there may be an alternative available.

The following article is from Science Daily: http://www.sciencedaily.com/releases/2002/05/020514075710.htm
from the American Academy of Neurology.

Statin Drugs May Increase Risk Of Peripheral Neuropathy

Statin drugs can increase the risk of developing peripheral neuropathy, according to a study published in the May 14 issue of Neurology, the scientific journal of the American Academy of Neurology.

Peripheral neuropathy results from damage to the peripheral nerves and causes weakness, numbness and pain in the hands and feet. Statin drugs are prescribed for millions of Americans to lower cholesterol.

People taking statins were 14 times more likely to develop peripheral neuropathy than people who were not taking statins, according to the Danish study. However, the overall risk of developing neuropathy is rare, said study author David Gaist, MD, PhD, of the University of Southern Denmark in Odense

"The positive benefits of statins, particularly on reducing the risk of heart disease, far outweigh the potential risk of developing neuropathy," Gaist said. "These findings shouldn't affect doctor or patient decisions to start using statins. But if people who take statins develop neuropathy symptoms, they should talk with their doctor, who may reconsider the use of statins."

For the population-based study, the researchers used a patient registry to identify all of the first-time cases of peripheral neuropathy with no known cause (such as diabetes) in Funen County, Denmark, over a five-year period. Each case was matched to 25 people of the same age and sex with no neuropathy as a control group. The use of statins was then determined for each group.

They identified 166 cases of first-time neuropathy with no known cause. Of those, 35 had a definite diagnosis, 54 were probable cases and 77 were possible cases. Nine of the people with neuropathy had taken statins. They had taken statins for an average of 2.8 years.

For those with a definite diagnosis of neuropathy, the statin users' risk of developing neuropathy was 16 times higher than for the control group. When all cases of neuropathy were taken into account, the statin users' risk of developing neuropathy was four times higher than the control group's risk. Taking statins for longer periods of time and taking higher doses of them increased the risk of developing neuropathy.

Statins lower levels of low-density lipoprotein (LDL) cholesterol by blocking the production of a liver enzyme used by the body to make cholesterol.

For more information about the American Academy of Neurology, visit its web site at http://www.aan.com.

An Older Persons Struggle With Neuropathy Vid

Today's video comes via the neuropathyassociation Facebook page (see link below) and shows  a real life story of an older lady suffering from severe neuropathy. Sometimes we need to see this sort of video to understand what people with neuropathy are going through in their daily lives and sometimes, after watching it, we may realise that our own situation is perhaps not as bad as we think. Certainly worth 4 minutes of your time.


Circle of Care
Angela Macropoulos (a caregiver in our community) submitted this video featuring her mother Josephine Macropoulos' ongoing neuropathy fight to the American Academy of Neurology Foundation for its 2011 Neuro Film Festival.



https://www.facebook.com/NeuropathyAssociation

Choices People With Chronic Pain Must Make

Today's post from psychologytoday.com (see link below) is another well-thought out article by Toni Bernhard and looks at the choices people living with chronic pain face on a daily basis. As with all so-called 'self help' articles, many readers have a built-in resistance to being told what to do and how to do it but this article does make some very valid points. People living with long-term neuropathy may recognise many of the dilemmas mentioned here and may find the advice given, quite helpful.

5 Tough Choices You Face When Chronically Ill or in Pain
Chronic pain and illness require the courage to make tough choices.
Published on January 28, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

Suffering from chronic pain or illness—or, as is often the case, both—is hard work. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships skillfully. This requires us to make tough choice after tough choice. Here are five of them that we continually face.

1. Do we keep our health problems private or do we talk openly about them?

If we talk about our health problems, some friends and family members may respond judgmentally or even turn away from us. And even those who don’t turn away may change the way they relate to us. We want to be treated as whole people and as adults, but if we share our health struggles with others, we risk being treated like a shadow of our former selves.

On the other hand, if we keep quiet about our health issues, we risk leading others to misunderstand what we can and cannot do. In addition, by keeping quiet, we’re passing up the possibility of receiving much needed support—both emotional and practical.

If you’re like me, it can be exhausting, both physically and mentally, to continually assess and decide what you will and what you will not share with others about your health.

2. Do we ignore a new symptom or have it checked out by a doctor?

If we raise a new symptom, will our doctor think we’re being oversensitive or that we've become a hypochondriac? On the other hand, a new symptom could be the sign of something serious. I read in one of my chronic illness books about a woman who ignored a new symptom because she decided it was best to assume it was related to her chronic illness. She also said that she waited so long to see her doctor because she “didn’t want to bother him.” The new symptom turned out to be stomach cancer.

What to do when a new symptom appears necessitates making another tough choice: wait or act immediately? We have to listen carefully to our body and decide for ourselves.

3. Should we risk trying alternative and unconventional therapies?

There’s no right or wrong course of action here, but it’s a choice that, for me, has been costly, both to my pocketbook and, at times, to my health. I used to spend hours and hours, using up what little energy I had, combing the Internet for cures. As I wrote about in my piece “Finding the Health Information You Need on the Internet,” anyone can create a website, set up a payment plan, and ask for your credit card number. People spend thousands of dollars on false cures. I know because I've done it.

On the other hand, I’ve also read about people who’ve been helped by alternative or unconventional treatments, so it may not be wise to decide to disregard them entirely. These are tough choices: what to take, what not to take, how to assess the monetary costs, what to tell our doctor about what we’re taking or not taking.

4. Do we push our body to the limit or do we always play it safe?

Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do. About two years ago, my granddaughter Camden was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides, pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” What I got for my effort was a week of payback with exacerbated symptoms.

On the other hand, I find that if I always play it safe, my body gets so used to the strict regime I put it on that I lose my ability to be flexible at all. For example, if I always nap at noon sharp, then if I’m fifteen minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully mix up the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap.

If it’s possible for you, I recommend a middle path of gently challenging your body now and then so that you don’t fall into a fixed pattern of behavior that underestimates what you might be able to do. But, as with the other tough choices, I find this constant assessing and adjusting, assessing and adjusting to be exhausting in itself, both mentally and physically.

5. Should we aggressively fight to regain our health or should we accept our fate?

Constantly fighting to regain our health is also exhausting, physically and mentally. But the alternative of passively accepting that this is the way we’re going to be for the rest of our lives doesn’t feel like a wise choice either. Again, I recommend a middle path. It took me a while to realize that I could acknowledge and accept my health as it is right now, while at the same time continuing to try to regain the health I had before I got sick. These two courses of action aren’t contradictory.
It wasn’t until I began to accept—without aversion—however I happened to feel on any given day, that I was able to begin looking for ways to enjoy my life again. But an integral part of that life is keeping an eye out for new treatments. It can be a challenge to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my health...but I'm working at it.

***

It's hard work to continually assess, evaluate, and choose a course of action while already sick or in pain. My wish for you is that you be as kind to yourself as you possibly can as you struggle with these tough choices.

http://www.psychologytoday.com/blog/turning-straw-gold/201301/5-tough-choices-you-face-when-chronically-ill-or-in-pain

PESTICIDES FOUND IN MILK DECADES AGO MAY BE ASSOCIATED WITH SIGNS OF PARKINSONS DISEASE

A pesticide used prior to the early 1980s and found in milk at that time may be associated with signs of Parkinson's disease in the brain, according to a study published in the December 9, 2015, online issue of Neurology, the medical journal of the American Academy of Neurology.

The link between dairy products and Parkinson's disease has been found in other studies," said study author R. D. Abbott, PhD, with the Shiga University of Medical Science in Otsu, Japan. "Our study looked specifically at milk and the signs of Parkinson's in the brain."

For the study, 449 Japanese-American men with an average age of 54 who participated in the Honolulu-Asia Aging Study were followed for more than 30 years and until death, after which autopsies were performed. Tests looked at whether participants had lost brain cells in the substantia nigra area of the brain, which occurs in Parkinson's disease and can start decades before any symptoms begin. Researchers also measured in 116 brains the amount of residue of a pesticide called heptachlor epoxide. The pesticide was found at very high levels in the milk supply in the early 1980s in Hawaii, where it was used in the pineapple industry. It was used to kill insects and was removed from use in the US around that time. The pesticide may also be found in well water.

The study found that nonsmokers who drank more than two cups of milk per day had 40 percent fewer brain cells in that area of the brain than people who drank less than two cups of milk per day. For those who were smokers at any point, there was no association between milk intake and loss of brain cells. Previous studies have shown that people who smoke have a lower risk of developing Parkinson's disease.

Residues of heptachlor epoxide were found in 90 percent of people who drank the most milk, compared to 63 percent of those who did not drink any milk. Abbott noted that the researchers do not have evidence that the milk participants drank contained heptachlor epoxide. He also stated that the study does not show that the pesticide or milk intake cause Parkinson's disease; it only shows an association.

"There are several possible explanations for the association, including chance," said Honglei Chen, MD, PhD, with the National Institute of Environmental Health Sciences and a member of the American Academy of Neurology, who wrote a corresponding editorial. "Also, milk consumption was measured only once at the start of the study, and we have to assume that this measurement represented participants' dietary habits over time."

Chen noted that the study is an excellent example of how epidemiological studies can contribute to the search for causes of Parkinson's disease.

This study was supported by the National Institute on Aging, the National Heart, Lung, and Blood Institute, the National Institute of Neurological Disorders and Stroke, the Department of the Army, the Department of Veterans Affairs, and the Kuakini Medical Center.

Do Women Deal With Pain Better Than Men

Today's fascinating article comes from health.com (see link below) and discusses the reasons why women react to to pain differently to men. Women have long claimed that they can suffer pain with more fortitude than men but are there reasons for that and is it true? It's a useful discussion, especially when applied to how the sexes cope with neuropathic pain. If women truly feel pain more intensely, yet deal with it better, are there any lessons to be learned? Is there something in the female physiology that facilitates this?

How Women's Pain Differs from Men's

Women feel pain more intensely—and in higher numbers—than men, but it's not exactly clear why

Women have been saying for years that if men were responsible for giving birth, the human race would have died out long ago because guys couldn't take the pain.

It's a clever dig—because, well, it's impossible to prove. But in fact, lab experiments suggest that women are more—not less—sensitive to pain than men.

"Contrary to popular opinion, it is very clear that women have a lower pain threshold and tolerance than men," says Roger Fillingim, PhD, a pain expert and professor of community dentistry and behavioral science at the University of Florida, in Gainesville. When study volunteers are exposed to an increasingly painful stimulus (such as a heat source) in experiments, Fillingim says, "women say 'stop' sooner."

This may explain in part why chronic pain conditions such as arthritis and migraine are more common among women, in some cases dramatically so. Fibromyalgia—a chronic condition marked by widespread pain, as well as fatigue and other symptoms—affects seven times as many women as men, for instance.

Exactly why women feel pain more intensely—and in higher numbers—than men remains a mystery. It's not simply that women aren't as "tough." Pain is a complex phenomenon, and how a person responds to it involves physical, psychological, and even cultural factors.

"Women experience more pain then men," Fillingim says. "We know a lot of different whys, but we don't have a single answer."

Questions remain, but the female body and mind do appear to process pain differently than a man's. And these differences can affect every aspect of pain, from the physical sensation itself to how women cope with chronic pain and what treatments are likely to be most effective for them.

Different bodies, different pain
Sex hormones may be responsible for much of the difference in how women and men experience pain, experts say.

Estrogen levels, which fluctuate according to the menstrual cycle and also dwindle as a woman enters menopause, have been linked to changes in how a woman feels pain, says Jennifer F. Kelly, PhD, a clinical psychologist at the Atlanta Center for Behavioral Medicine.

The relationship appears to be complicated, however. Some studies have shown that women are more sensitive to pain when their estrogen levels are low (during menstruation, for instance), while others have shown the exact opposite. It's still unclear whether estrogen makes pain better or worse, Fillingim says.

Psychological factors also likely play a role in gender-based pain differences. More so than men, who are apt to focus on the immediate physical sensation of pain, women tend to think about the consequences pain will have on their lives, Kelly says.

"If a man hits his hand, his hand hurts," Kelly says. "But if a woman hits her hand, she focuses on the emotional aspects...and how it is going to impact day-to-day functions. Women tend to experience more pain as a result, possibly because the emotions associated with pain are usually negative."

While this may sound like a cliche straight out of Men Are from Mars, Women Are from Venus, it's backed up by studies that have used brain scans to identify the regions of the brain that respond to pain. When women and men receive the same pain stimulus, women show more activity in the emotional centers of their brains, while in men the cognitive and analytical areas of the brain tend `to light up.

Other health conditions—most notably depression—may magnify the emotional response to pain. Women are more likely to be diagnosed with depression, which is a risk factor for chronic pain conditions, says Kelly, who gave a presentation on gender and pain at a recent meeting of the American Psychological Association in San Diego.

How women cope
Strategies for coping with chronic pain also differ between the sexes. These differences are potentially important, since how a person copes with pain can actually influence how much pain they feel.

For instance, women are more likely than men to turn to friends, family, and other sources of social support to talk through how their pain is affecting them, Fillingim says. That's generally a good thing, but some studies suggest that women are also more likely to exaggerate their chronic pain and the negative consequences it has on their lives.

This excessively pessimistic or melodramatic thinking—"catastrophizing," some pain experts call it—can backfire and make pain worse. It tends to elicit hostility from spouses, family, and friends (rather than support), and it's linked to higher levels of pain and depression.

The roles that women play in their families—as well as in society more broadly—can also shape how they cope with chronic pain, says Carmen R. Green, MD, a professor of anesthesiology and ob-gyn at the University of Michigan, in Ann Arbor. In some cases, expectations for women's behavior and their responsibilities can actually lead them to downplay their pain and try to fight through it—the opposite of catastrophizing. "Women will always take care of their kids, so it appears that they are functioning better because they have no choice," Dr. Green says.

In some ways, women cope with pain more constructively than men do, Dr. Green says. "Women enter the health care arena sooner than men, which may be a positive coping step, and they tend to have a more varied and larger social networks," she says. The latter means they may have more shoulders to lean on when their pain is acting up.

Finding the right pain treatmentDespite the many differences in pain between genders, treatments aren't always tailored to women and men. And women in particular are at risk for having their pain poorly assessed and undertreated, Kelly says. (It probably doesn't help that the majority of pain physicians are men.)Pain medications often have disparate effects—and side effects—in women and men, according to Kelly. "Physicians working with females have to be aware that women have more side effects from medications, and have to work with them differently and find something that can be a benefit with the least amount of side effects across the board," she says.

Doctors prescribe pain medicine based on how the drugs are metabolized by a 150-pound man, Dr. Green adds. "We have to do more clinical trials on women to see if age—and whether they are pre, peri-, or post-menopausal—affects how they respond to medications to treat their pain," she says.

In many cases, non-medical treatments such as cognitive behavior therapy may be especially beneficial for women, Kelly says. This brief, focused therapy addresses coping skills and seeks to change the thought patterns associated with pain (such as catastrophizing) and the impact they have on a person's quality of life.

"We need to teach women to be good advocates for themselves about their pain and how it impacts their life, so that they can see their doctor and say 'This is where it hurts', 'This is what makes it feel better,' 'This is what I can do' and 'This is what I can't do," Kelly says.

http://www.health.com/health/condition-article/0,,20424823_3,00.html

A diabetic with neuropathy

Friday's stories

Three short posts from the blog: Diabetic neuropathy: What's it all about hey!(see link below) which is an honest and plain-spoken, account of a diabetic patient's experiences with neuropathy. This site gives you a little more than the average 'health' blog and gives you that comfortable feeling that you can relate to his life on various levels. He is is a diabetic with neuropathy and not HIV but this is a case where neuropathy is, in the end, just neuropathy whatever other ailment you have at the same time and shared experiences can often be very helpful in helping you deal with what's happening in your own life.

Seen my doc Sept.24th 2009

Went to see my consultant yesterday.. talked about the how there is no support network for neuropathy sufferers.. he gave me a few pointers and has given me more motivation to get something started for people like me..
I also went to see a gastroenterology doc today..i am on 2 diff sets of antibiotics for the next month to see if that can ease the stomach problems.. sometimes when the stomach does not empty properly bacteria grows and adds to the situation... there is a common theme though when i see a consultant...
"its difficult to test for that" or we dont have a test for that" "or there is not much we can do about that"
but i am not giving up just yet anyway!!

oh the pain Feb 8th,2011
i find it really hard to explain the pain.....
just cause i do not cry n scream does not mean i am not in pain
after suffering with extreme pain for 3 years now its not about a pain free day its about how strong the pain is.... if that makes sense...
so i am never without pain... but the levels just increase or decrease and it something your body HAS to get used to....
today was a day of well i want to cut my feet off days...... and those of you who understand know... i was in asda.. and had to lay on the floor as my feet were so bad i could not even stand anymore... let alone walk... and pushing the trolley.. if i was not with JO i would have just left the trolley and left... ....
now as i write this,... is am fine n dandy.... but 3 hours ago...................
well give me a saw... and leave me alone..... and it would have been a diff story

just cause you cant see my pain does not mean i am not crying inside with agony.......

depression ... stress.. the invisible thing.... Nov.4th,2010
i have written about this before.... i am no doctor and no expert.. but i can only talk about what i have experienced and what i have seen...
depression and stress are conditions that are very difficult to understand... very much like having nerve pain... it exists.... but its hard to treat.. and hard to explain.. and everyone deals with it in their own way... some have drugs.... some dont... some get angry... some go quiet... there is noo right or wrong way... but.. this is know... ignore it and it will consume you and it will affect you and everyone around you... so find your way... dont be afraid to talk about it... do`nt be afraid to ask for help.... if you break your leg do you get it sorted... yes and over time it will heal... if you dont will heal wrong and be crocked and painful for the rest of your life.....
from someone who used to clam up.. and try and deal with things himself.. from being too proud to ask for help... to burying my head in the sand for along time... the thing i did was be open about it all and learn how to talk about it all... whether it be my "man Issues"... or temper.. or not being able to cope with the pain....
i mean i am talking to myself now... this is how i deal with it ... we are all different.... but no matter how you deal with it... you are not alone in this...
i have said this for a while now... "DONT SUFFER IN SILENCE"
you are not alone....

http://diabetes-and-neuropathy.blogspot.com

Coral Compound may help with Neuropathic pain

Today's post from esciencenews.com (see link below) is one of those where we have to ask the reader if they know anything more than is told here. It was published in 2009, so one assumes that some progress has been made in the development of a Capnellene compound as a pain relieving drug. It certainly sounds interesting.

Neuropathic pain: The sea provides a new hope of relief
Published: Tuesday, August 4, 2009 - 19:09 in Health & Medicine

A compound initially isolated from a soft coral (Capnella imbricata) collected at Green Island off Taiwan, could lead scientists to develop a new set of treatments for neuropathic pain – chronic pain that sometimes follows damage to the nervous system. Currently this form of pain is very poorly controlled by the usual analgesics (aspirin like drugs (NSAIDS) or even opioids like morphine) and novel treatments are urgently required. The conclusion of a paper published today in the British Journal of Pharmacology is that this new compound could be a candidate. Recent research suggests inflammation in the nervous system is a major causative factor for this condition. Inflammation activates supporting cells, such as microglia and astrocytes, that surround the nerve cells. These activated cells release compounds called cytokines that can excite nerves carrying pain sensation (nociceptive pathways) and cause the person to experience mildly uncomfortable stimuli as very painful (hyperalgesia), or stimuli that would normally induce no discomfort at all as painful (allodynia). Thus, cold drafts or lightly brushing the skin can produce intense pain, severely affecting the person's quality of life.

The treatments that give some relief to some patients are a very mixed bunch, nearly all found empirically and with many other effects. Amitriptyline, an anti depressant now used for urinary incontinence, has given relief in neuropathic pain; similarly, two drugs designed for treating epilepsy - gabapentin and pentagabalin have also proved effective for some sufferers. However, many patients do not respond to these currently available drugs.

"New, effective and safe painkillers are urgently needed for patients with neuropathic pain," says Dr Zhi-Hong Wen, who played a key role in a research study searching for novel compounds that have potential for use in pain relief. Dr Wen and colleagues work at the Department of Marine Biotechnology and Resources, National Sun Yat-Sen University, Taiwan.

Although the chemical they studied, capnellene, was originally isolated in 1974, it is only recently that scientists have started to appreciate its potential. Capnellene is interesting because its structure is very different from pain-relieving drugs currently in use. Initial experiments suggested that it may have pain-relieving properties. Working with Yen-Hsuan Jean MD, PhD and other colleagues, Dr Wen tested capnellene and a second very similar compound, in isolated microglial cells and in experimental models of the condition in rats.

They found that the compounds significantly reduced pain-related activities in isolated microglia, and that these compounds also significantly reversed hyperalgesic behaviour in the experimental rats.

"To provide better quality of life, we need new drugs that can act rapidly and have specific functions with low side effects. Moreover, we need better management for chronic pain conditions," says Dr Wen.

"Today there are few pharmacological agents that can help people suffering from neuropathic pain, but we believe that these marine-derived compounds could lead to the development of a new range of drugs of great potential," he adds.

http://esciencenews.com/articles/2009/08/04/neuropathic.pain.the.sea.provides.a.new.hope.relief

Opioid Dependency Whats It Got to Do With HIV

Today's post from thebody.com (see link below) is the second part of an examination of opioid dependency (see yesterday's post). This time it concentrates more on why this may be a problem for people living with HIV and what they should look out for and be aware of when taking these drugs. Being HIV+ unfortunately doesn't rule out getting other diseases as well, as  people with neuropathy and HIV are painfully aware of. That's why it's so important to arm yourself with as many facts about your treatment as possible.

Opioid Dependency: What's It Got to Do With HIV?

By Dave R. February 1, 2013

Internet links shown in these posts are designed to provide more detailed information if required.

This article is Part Two of a two-part piece. Read Part One, "The Opioid Solution and HIV: From the Frying Pan Into the Fire."

"Only the patient knows how intense and frequent a pain is - a pain is what the patient says it is." -- Palliative caregiver

So what is the 'real and present danger' to us as people living with HIV, its co-morbidities and any resulting extra health problems? If your pain does not respond well enough to analgesics and other drugs (anti-depressants, anti-convulsants and other drugs meant to interact with nerve signals to the brain), you may be advised to move onto opioids of one sort or another. This shouldn't alarm you too much, despite the content of Part One of this article.

Opioids work really well, if they are kept under control and you are consistently monitored by your doctor or specialist. He or she should make every effort to ensure that you don't become addicted whilst still getting the most relief out of the pain killing effects. The problems often begin if the doctor writes you a prescription and then leaves you to get on with it. You should always discuss any potential side effects and problems before beginning with opioids. You should get his or her reassurance that you will be carefully monitored and that the right level of opioid medication will be found with as little risk of addiction as possible. Anything less is really unacceptable but the reality is often harder than this advice suggests. If you're given a ten minute appointment, it may be difficult to discuss things in any detail because the doctors are under so much time pressure. However, in this case, you can be sure that a little time spent establishing ground rules now will save much more of the doctor's time later if it goes wrong. If you want to get off the drugs at a later date, make sure that the close monitoring continues: weaning yourself off opiates is no casual matter and isn't easy; you're going to need support. In your own interests, make sure you get it.

The American Institute of Addiction Medicine points out that the World Health Organisation recognises opioid addiction as a brain disease. Addiction also involves a physical, psychological and behavioural need for an opioid and can dominate a person's life. They also say that opioids prescribed as painkillers are similar to heroin and can be equally addictive.

Addicts will go to any lengths to satisfy their need, including shopping around the various doctor's surgeries and clinics, stealing from friends, family and work and using the internet to order them from whatever suspect source. The withdrawal symptoms of coming off opioids should never be underestimated. It's always possible but it's going to be hard -- you'll probably need help, guidance and understanding. Never try to go cold turkey with opioids; you don't need to; just get the right advice. Some people, however, will continue their addiction rather than face the social stigma of admitting their problem and seeking help.

The medical authorities and pharmaceutical companies are finally reacting to the problem and working on ways to reduce the potential for pill abuse by developing safer alternatives with longer delayed release effects, to try to cut out the possibilities for instant highs. They are also busy studying the best ways of directing and re-directing pain signals to the brain by creating more refined opiate derivatives but this will take time, especially as each new product has to go through hoops before it is officially approved.

In the meantime, millions of people suffer from substance use and abuse and many more are affected by someone else's problems. The best we can all individually do is keep our eyes open in our own circles. If you know someone who has been prescribed opioids for chronic pain, tactfully try to let them know that you will be there for them during any difficulties and watch out for signs of a personal struggle with the drugs. Of course this is true for all substance abuse; from over-eating, to alcohol and smoking, to heavier medication abuse. If for whatever reason you personally take opioids for recreational purposes, I can't judge but please make yourself aware of the facts and the dangers and if you feel that control is slipping away and the drugs are taking over, at least tell someone you trust. You really don't want to become another drug abuse statistic, especially if you are also living with HIV; life is surely difficult enough!

I don't want to come over as alarmist; the statistics surely speak for themselves and opioids are powerful analgesics that when properly and sensibly prescribed and administered, can bring much needed relief from physical pain and emotional suffering. However, they aren't aspirins and need to be treated with the greatest of respect. If you take them because your pain is unbearable, you have to see them as a positive treatment; you may not have any choice, but knowledge is power and being aware of what they can do if not wisely used is half the battle against potential problems. If you're honest with yourself, you may become more aware by looking at other things in your life. Do you find it difficult to resist smoking, drinking, eating, for instance? I know I have a history of being open to temptation and may have a 'suggestible' personality. Perversely, that knowledge helped me stop smoking, drinking and certainly helped when coming off Oxycontin. Knowing that you are susceptible to mild addictive behaviour may keep that thought in the back of your mind when dealing with opioids. Never be afraid to pester your doctors for help - they can't read your mind.

Finally, the following by Jane Ballantyne and Steven LaForge from the official journal of the American Pain Society sums up how difficult the whole subject is.

"When patients are maintained on opioids for the treatment of pain, there is currently no satisfactory means of distinguishing true addiction from problematic behaviors caused by a variety of factors other than addiction. Unfortunately, advances in understanding the neurobiological foundation of addiction have not been matched by any improvement in physicians' ability to recognize and diagnose the condition. There is no single diagnostic marker of addiction, no definitive change on brain imaging and as yet no genetic markers to provide a reliable prognosis of risk. When it comes to iatrogenic opioid addiction, the clinician is faced with even greater difficulty: the behaviors encountered do not resemble those outlined in the criteria for addiction to illicit drugs...

... One of the great difficulties of quantifying, recognizing, and treating iatrogenic opioid addiction is the subjective nature of the judgment on whether behaviors have crossed an ill-defined boundary between problematic opioid use and addiction. This judgment then becomes dependent on the reporting person's experience, prejudices, and knowledge."
Ballantyne JC, LaForge KS. Opioid dependence and addiction during opioid treatment of chronic pain.Pain. 2007;129(3):235-255

Opioid dependency is clearly a huge problem, partly because of the dichotomy of its causes. How can you balance the medical need for perfectly legal and effective drugs, with the potential for side effects and addiction? Addicts may become addicted because the opioids have overcome the original medical need and prescription parameters, or because they're seeking a buzz or a high? The end result for both can be addiction, even if the original motives were poles apart.

The lines are blurred and nothing is just black and white but there is no doubt that it's another underestimated problem of the modern age, which is having wide ranging effects of certain groups in society. The authorities are, as is often the case, reacting instinctively by using sledge hammers to crack nuts by locally banning this and that and criminalising doctors and chemists, who have to turn legitimate patients away.

It is complex and we have to hope that the pharmaceutical companies will ignore their cash cows and quickly come up with safer but equally effective alternatives. Let us hope that people living with HIV are amongst the most knowledgeable and level headed in society and that the problem within our community will be constrained, even if it can't be removed.
Further Information

Opioids911-Safety

Opioid Risk Management

The Urgency of Pain Control in Adults With HIV/AIDS

This and other posts are based on my opinions and impressions of living with both neuropathy and HIV. Although I do my best to ensure that facts are accurate and evidence-based, that is no substitute for discussing your own treatment with your HIV specialist or neurologist. All comments are welcome.

Read Part One of this piece, "The Opioid Solution and HIV: From the Frying Pan Into the Fire."

http://www.thebody.com/content/70427/opioid-dependency-whats-it-got-to-do-with-hiv.html