The Shoe Problem For Neuropathy Sufferers

Today's post from pamspaulding.net (see link below) is a personal story of a woman trying to find the best shoes to suit her neuropathy symptoms. Many people will identify with her problems and although the suggestions are of American shoe brands, it does highlight the fact that we need to find footwear that is both reasonably stylish and comfortable and supportive. That's not an easy task!

When you have neuropathy-damaged feet, good (cute) shoes are hard to find. 
Posted by Pam Spaulding Saturday, June 8, 2013

 The stereotype is that lesbians wear "comfortable" shoes, as in unfashionable, or maybe work boots, I have no idea.

 Anyway, this lesbian has serious neuropathy in both feet. I've had insulin-dependent diabetes for 30 years, and thankfully my eyes and kidneys -- usual targets of long-term damage -- are fine, unfortunately the feet are what took the damage. My blood sugars have been in good control, but it's hard not to have some long-term effects having diabetes for this long. BTW, it runs on both sides of my family -- both of my parents had adult-onset but were not obese. My brother is fine; I seemed to be the one to get all of the horrid metabolic and immune disorders passed down. Even my RA, according to my rheumatologist, was spawned through the genes; my mom had sarcoidosis, which is in the same auto-immune family.

 Anyway, it's hard to describe what neuropathic pain feels like -- it's simultaneously numbness paired with extreme sensitivity at times to the touch, such as feeling like you're walking on hot coals, or someone is stabbing you with little knives on the soles of your feet. The duality of this is both frustrating and annoying because it can ramp up at any time. The worst-case scenario is an attack of it at night -- I've had pain so bad that even having the sheet touch my feet under the covers was excruciating.

 On the other hand, my feet are nearly completely numb to hot or cold, which can be dangerous. Burning hot water feels only warm on them; ice barely registers as cold. The numb aspect also makes it easy to slip in the shower, since my feet don't have the correct sensation to grip the wet floor well. I have to have bath mats all over the floor to make it to my slippers.

 One of the few topical things that help is capsaicin, derived from hot peppers. Mostly this is used by folks with osteoarthritis. In treating neuropathy, the heat sensation generated by it cancels out/breaks up the neuropathic signals causing the pain. Kate tried using it on a sore muscle and she couldn't bear the burning sensation; I barely feel anything warm on my feet, but after about a half-hour, some of the worst burning subsides and I'm able to finally sleep.

 But back to shoes... 

 Almost all my old shoes -- nice dress shoes, sandals -- had to be tossed out over the last couple of years because they either 1) hurt my feet by causing neuro-pain, or 2) didn't provide enough shock absorption to prevent knee and hip pain that I have from RA. What's left to wear? Well, lots of styles that look like Grandma Shoes. At this point, the only brand I trust to be comfortable are Easy Spirit's Athletic family. At least they come in all sorts of cool colors and styles.

 I took a risk on one shoe that looked kind of cool -- the Naturalizer BZees Mary Jane (right). While they aren't dress shoes or sneakers, they fall into middle ground for me. I'll wear these to work or out on the weekend. I've learned that comfort comes before style at this point. It's really not a choice.

 One of the brands that up until this about a year ago that I could reliably trust were Jambus and J-41s. I wore one pair last week and boy did I pay for it. They seemed comfy enough -- they have memory foam insoles -- but the next day my left knee and hip hurt so bad that I was limping for two days. I had to fall back on my trusty Easy Spirit Mary Janes to get enough support and shock absorption. I was crestfallen. I love those J-41s. I wanted to make a bargain with myself that I can still wear them in some limited way...oy.


 http://www.pamspaulding.net/2013/06/when-you-have-neuropathy-damaged-feet.html

Why Is An Idiopathic Neuropathy Diagnosis A Problem

Today's longer post from neuropathysupportnetwork.org (see link below) is written by Lt Col Eugene B Richardson, who is a well-known and respected activist when it comes to dealing with neuropathy, especially when related to agent orange. Here he discusses the diagnosis 'Idiopathic neuropathy' which basically means that they cannot identify or trace the origin of your neuropathy. The problem is, that this can then encourage assessors to see your neuropathy as being more psychosomatic than genuine. Lt Col Richardson quite rightly takes them to task for this and again quite rightly insists that just because doctors haven't got a good enough testing system to accurately test for the cause of the nerve damage, doesn't mean that the nerve damage is in any way lessened for that. There are descriptions of a person's neuropathy that are far more accurate than just 'idiopathic'. The type of neuropathy can be identified and named, it's just the cause that can't be definitively established. This article is useful reading for everybody who is living with neuropathic symptoms - definitely worth a read.
 

The Problem with a Diagnosis of Idiopathic Neuropathy!
Posted November 15th, 2013 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS 

 Idiopathic Neuropathy according to medical experts writing in the Journal of the Peripheral Nervous System should be considered as a disease entity in and of itself. It is recommended that this condition be diagnosed as Chronic Idiopathic Axonal Polyneuropathy or (CIAP) as a major health problem. (See reference 1.)

I would ask, what does the word ‘idiopathic’ add to this diagnosis? Why not Chronic Axonal Polyneuropathy or (CAP)?

With the greatest of respect for the writers of the article, following forty-four years of living with neuropathy , a diagnosis of idiopathic neuropathy is a ‘failed diagnosis’ given the diagnostic tools and information medicine has available in 2013. Having been at the receiving end of idiopathic, primarily due to limited clinical skills or failed testing and/or failed interpretation of these tests by the experts, in my view and that of many patients the use of idiopathic in diagnosis fails the patient and doctor.

Read on to understand your patient mission: Help influence better awareness, clinical thinking and knowledge about Peripheral Neuropathy and the available tests in the health care system by learning, sharing documents, information, sources, and asking good “I” questions of your doctor. Become a partner in your own health care and a facilitator of change. In the process you may even get the help you need for your neuropathy.

We patients understand that there are NO tests to diagnose Peripheral Neuropathy per se, as this must be done based on the patients symptoms and medical history. The available tests can only either rule out a cause for the symptoms or confirm that damage has been done to the large or small fiber nerves.

However, failure to find either a cause or damage does not rule out a neuropathy. The symptoms of Peripheral Neuropathy are often present without the damage to the axon (nerve) or myelin (nerve covering) as that may occur later in the course of the disease. It is this focus in searching for a cause that sets the patient and doctor up for a diagnosis of idiopathic. As noted below, medical science does not know the cause for many diseases, yet they do not use the term idiopathic!

If you read the transcript of a recent Facebook chat on Idiopathic Neuropathy lead by Dr. Shanna K. Paterson it highlights a serious problem in using such a diagnosis as every patient question and the doctor’s excellent responses are focused on getting a “real” diagnosis and “real help” for the symptoms of peripheral neuropathy. (Dr. Paterson is the Assistant Clinical Professor of Neurology at Columbia University Medical College and Neurologist at St. Luke’s Roosevelt Hospital Center).

Medical experts must be trained to adequately interpretation the available tests whether it be the EMG, nerve conduct test, skin biopsy, blood work, spinal tap, evoked potentials, doctors examination, and the patients’ medical history of symptoms.

Understanding the results and meaning of these tests and information, combined with patient medical history often point to a more precise diagnosis, possible treatment options or at a minimum an idea that might help the patient.

I always loved Mims Cushing’s’ definition of idiopathic. In her book You Can Cope with Peripheral Neuropathy she defines it as being “idiot” for ‘idio’ and “pathetic” for ‘pathic’. In fact this bit of harsh humor hits the nail right on the head.

From the real world of the neuropathy patient it is difficult, with all due respect to health care professionals, to not agree with Mims definition of the term.
 
Idiopathic to doctors of course means of “unknown cause” and is a legitimate word when seeking the cause of some disease, but it is never used in MS or cancer and other ‘recognized or accepted’ diseases when the cause is not known! Why? Does research not focus on the cause of all disease to find answers that we still do not have?

The other issue is that for lawyers’ idiopathic means “no objective proof of a problem” providing the foundation for legal denial of help for the patient. Talk about frustrated patients! In both situations, this leaves the neuropathy patient without help that may be possible with a more precise diagnosis.

Medicine must cease at the clinical level the focus on neuropathy as simply a component of another disease. Peripheral Neuropathy must be acknowledged as a disease entity in and of itself, a disease of a major system of the human body.

Based on the available tests the doctor should be able to diagnose any of the following rather than fall back on the term Idiopathic Peripheral Neuropathy.

Examples to name a few, without including the word “idiopathic” which adds nothing but uncertainty, would include the following. You can add acute (two months) or chronic (beyond two months) or progressive (remits and relapses with increasingly worse symptoms) to any of these focused findings. While not exhaustive this list will provide you with the point being made.

peripheral neuropathy or polyneuropathy
axonal neuropathy or polyneuropathy
sensory neuropathy or polyneuropathy
motor neuropathy or Multifocal Motor Neuropathy
sensory/motor neuropathy or polyneuropathy
immune mediated neuropathy or polyneuropathy
large fiber neuropathy or polyneuropathy
small fiber neuropathy or polyneuropathy
autonomic neuropathy
autoimmune sensory neuronitis
entrapment neuropathy (carpel tunnel syndrome) (common in diabetic and immune mediated neuropathies)
Guillian Barré Syndrome
Distal Symmetric Polyneuropathy
Chronic Inflammatory Demyelinating Polyneuropathy and variants

Or when there is a possible suspected cause of the neuropathy:

Diabetic neuropathy
Celiac neuropathy
Chemotherapy/Radiation induced neuropathy
Neuropathy in a nutritional deficiency
Neuropathy in alcoholic abuse
Hereditary or genetic neuropathy
Neuropathy in Agent Orange exposure***
Toxic neuropathy
Drug induced neuropathy
Entrapment neuropathy
Neuropathy with IgM Monoclonal Gammapathy
Vasculitic neuropathy
Neuropathy in AIDS
Neuropathy in Lyme Disease
Diphtheric neuropathy
Sarcoid neuropathy
Neuropathy in cancer
Paraneoplastic neuropathy,
Neuropathy in myeloma or POEMS
Neuropathy in amyloidosis

(* **Supported by the findings of the Institute of Medicine in 2010 and confirmed by the Veterans Affairs Administration law in 2012 as presumptive to Agent Orange exposure. For guidance in submitting a claim to the VA go to this link: http://neuropathysupportnetwork.org/blog/2013/01/guidelines-for-veterans-va-proposed-law-agent-orange-and-peripheral-neuropathy/#more-1086 and send an E Mail to gene@neuropathysupportnetwork.org for more guidance.)

When left with a diagnosis of Idiopathic neuropathy, the patient is left without affirmation that is important in the strange world of neuropathy symptoms, robbing patients of self-esteem.

To name something that is real to the patient, is to provide an emotional/cognitive handle on the strange world of the neuropathy patient and their families.

From the experience of some neuropathy patients, a diagnosis of idiopathic often results in a not too subtle a suggestion that the patient has a mental illness (since all tests are normal and there is no cause in must be mental) and the statement is used as a club against the patient to send them on their way. Many neuropathy patients have been here including me.

I even remember the doctor in the military who asked me, “Why do you want something wrong with you?” when he said, “All tests are normal.” It was easier to attack the patient than acknowledge a lack of clinical knowledge and skill or that all they had determined was that these tests were normal, nothing more.

Even more shocking, an esteemed teaching neurologist at a major University Neuropathy Center in 2001 noted that the patient had reflexes upon compression. He then dismissed the obvious diagnosis, attacked the patient by writing in the medical record “patient is claiming to have something they do not have”, without knowing that sometimes reflexes are absent, sometimes they are diminished, and sometimes they are normal. He ignored all the objective tests to reach this conclusion and he is a highly respected teacher of neurology.

The impact on reflexes is hardly a standard on its own for the clinical diagnosis for the neuropathy patient and to ignore the actual results of the objective testing that was done and the long medical history was incompetence at the highest level.

To further frustrate the patient, if an employer finds about such a diagnosis, this can cost the employee their career. Been there and done that in my military and civilian career with supervisors who wanted to play doctor? Since the cause is unknown, it must be failure to handle stress both supervisors concluded.

Understand I did not receive even a diagnosis of idiopathic in the 1970’s all the way to 1999, so maybe with this use of idiopathic for a diagnosis, we patients can celebrate progress?

A diagnosis of Idiopathic neuropathy misses the clues of what might be done for the neuropathy, as options to consider are lost. It too often shows that the doctor does not have the clinical expertise to read the tests with current knowledge about neuropathy. This diagnosis fails the patient clinically in both diagnosis and any possible treatments or responses to the neuropathy.

Medicare in 2013 still leads the way in supporting the dismissal of neuropathy by not paying for the blood tests that a doctor orders under the neuropathy profile!

POINT: The real value of this chat on Idiopathic Neuropathy is that it raises the question as to why do we need such a diagnosis, when testing in 2013 combined with the patients’ medical history, a more precise and helpful diagnoses is possible, even if “chronic axonal neuropathy” is used?

The Peripheral Nerve Society has developed a great source of reliable information and challenges via their journal and other experts have done the same. (See the Journal of the Peripheral Nervous System.)

Have you ever heard of idiopathic cancer? How about idiopathic MS or idiopathic Alzheimer’s? Okay, with MS there are liaisons on the brain so there is a test to confirm the diagnosis, but there is no focus on the cause. With cancer the same is true, but with Alzheimer’s the symptoms are there as in PN, but tests are not available to actually confirm the diagnosis until autopsy. So the real problem is that we do not have an actual test to diagnose Peripheral Neuropathy so we focus on CAUSES.

Over the year’s comments such as peripheral neuropathy is best thought of as something caused by other disease processes and therefore is not really a disease encourages the wrong focus. Every disease is caused by or involves other disease processes and these ‘accepted’ diseases do not use the term idiopathic even when our knowledge is limited or absent.

There are many diseases for which we do NOT understand or fully understand the cause or causes and that are caused by or involve other disease processes.

As Dr. Thomas Brannagan of Columbia University states, the simple reason is that too many health care professionals do not have the clinical training for the proper diagnosis and treatment of the neuropathies.

The challenging question is, “Why not train them?”

I recently went on several health care websites and with very few exceptions, every major disease is listed, but there are too many who do not even list Peripheral Neuropathy and I struggled to have these sites to consider listing it when there are more patients with Neuropathy than MS. They always list MS. Why? (See the Journal of the Peripheral Nervous System Vol.17, Supplement 2, at Page 44 top left hand column.)

So why is idiopathic neuropathy even necessary when a more helpful diagnosis is possible when a trained physician knows how to use and interpret the EMG, the Nerve Conduct Study, the spinal tap, the nerve/muscle biopsy, the blood work, a skin biopsy, a genetic test, and actually think about the subjective information provided in the patients’ medical history?

Dr. Norman Latov of Weil Medical College at Cornell University, shared in 2006 that for “one quarter to one-third of patients, no cause can be found and the neuropathy is called “idiopathic.” He notes that these are usually “axonal and may be sensory or sensorimotor” and “classified according to the clinical presentation”, with “therapy primarily symptomatic.” But again, I ask, why refer to them as idiopathic with the strong focus on the cause for peripheral neuropathy when this is not true of other accepted diseases processes for which we often do not have a cause?

Why not think out of the box with trial treatments such as was suggested in the article years ago in the use of IVIg? I suffered for decades and then years while a doctor with limited clinical skill thought all neuropathy patients MUST have diabetes and others used the term idiopathic. My disease was a form of CIDP and the treatment was IVIg. What other trials of treatment are available given a general idea of what is happening in the neuropathy patient?

Patient Challenge:

I strongly recommend that patients never rest on a diagnosis of “idiopathic” neuropathy, as in the experience of many neuropathy patients, it means someone may have failed to do the diagnostic work and/or does not understand the meaning of the tests we do have available. For me such thinking resulted in my severe disability and unbelievable suffering without support over decades with failed diagnosis and lack of thinking outside the box.

I remember the neurologist who was not clinically trained who wanted in a desperate way to make me a diabetic while resting on idiopathic. He delayed treatment another four years until I gave him the article on a trial of IVIg that worked for me. He was not aware of the usefulness of the spinal tap for such a neuropathy 2004. Then in 2005 for the first time my doctor, Dr. Waden Emery III, Neurologist in Lighthouse Point, Florida asked, “Why did they not do a spinal tap?” Limited clinical training!

In 2013 military veterans who are seeking help were told by VA doctors and claim reviewers that unless they are diabetic they cannot have Peripheral Neuropathy! This is frightening clinical misinformation for these patients.

You may want to provide the doctor with a copy of the document recently published in Neurology Today, March 15, 2012, volume 12(6); pp 30, 32-33 by Mark Moran. Read the entire article at: How to Diagnose Peripheral Neuropathy? No Simple Answers Unfortunately, this great article does fail to mention the diagnostic value of the spinal tap, a procedure that would have resulted in my earlier treatment years before my disability was serious. If you want a copy of this document, send an e-mail to gene@neuropathysupportnetwork.org

If you want a good description of the symptoms and causes of Peripheral Neuropathy, read Dr. Norman Latov’s book (Listed on the Resource Tab) or go to these articles including linking to the website of the National Institute of Health. Give this information to the doctor if needed. Click here for the Link to the NIH:

Click here for the article on the NSN website:

Well, the Doctor may be insulted or get angry.

Yes, it may take a bit of skill using “I” messages such as “I wonder if it would be helpful to _____?” rather than ‘you’ messages to the doctor. ‘You’ messages are usually rejected and making the person defensive while ‘I’ messages sets the person free while stimulating thinking! This is true even if the thinking occurs after your appointment is over.

I remember when the military Men of the Chapel went fishing to catch sea bass off of Baltimore one year and we brought the large catch of fish to shore and gave it to the Priest who was feeding the poor of the city. In his office was a sign that read, “I give you fish and you sell fish. I am angry. So I refused to give you fish because you sell them. You are angry. Better you angry”.

Your mission: Help influence better awareness, clinical thinking and knowledge about Peripheral Neuropathy and the available tests in the health care system by learning, sharing documents, information, sources, and asking good “I” questions of your doctor. Become a partner in your own health care and a facilitator of change. In the process you may even get the help you need for your neuropathy.

REFERENCES:

Reference 1: Journal of the Peripheral Nervous System, Vol. 17, suppl. 2, Page 43-49 “Idiopathic Neuropathy: New Paradigms, New Promise”, 2010 and other issues of this scientific journal of the Peripheral Nerve Society.

Reference 2: Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop, by Norman Latov, MD PhD, AAN Press 2007. (Order from amazon by clicking here:).

Reference 3: “How to Diagnose Peripheral Neuropathy? No Simple Answers: Experts Offer Some Guiding Principles”, in Neurology Today, March 15, 2012, volume 12(6); pp 30, 32-33 by Mark Moran. (Send E Mail to gene@neuropathysupportnetwork.org)

Reference 4: Peripheral Neuropathy: A Practical Approach to Diagnosis and Management by Dr. Didier Cros, M.D. Editor, Lippincott Williams & Wilkins published 2001

Reference 5: You Can Cope with Peripheral Neuropathy: 365 Tips for Living a Full Life, by Marguerite (Mims) Cushing (Neuropathy Patient) and Dr. Norman Latov, MD, PhD, published 2009. (Order from amazon by clicking here:).

Reference 6: “Sick and Tired” Part I and 2, Season Five TV show, The Golden Girls.(Order from amazon by clicking here:). 

PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.

Copyright 2013: Network for Neuropathy Support, Inc., dba Neuropathy Support Network.

http://neuropathysupportnetwork.org/blog/2013/11/the-problem-with-a-diagnosis-of-idiopathic-neuropathy/

Neuropathy A Massive Problem In The USA

Today's post from prweb.com (see link below) looks at recent conclusions by the Neuropathy Association that neuropathy is a far larger problem than at first thought. Statistics are deceptive things: they can prove one thing or another but you have to look very closely at what they are based on  and whether they're someone's opinion based on extrapolation of one set of figures or another, or actual hard and fast facts. That said, a few million either side of the truth still makes neuropathy a huge problem in the world today and every country or region can probably draw the same conclusions from the US numbers. That makes it all the more astonishing that so many so-called 'experts' claim that the problem is exaggerated or over-rated. 
 

Neuropathy in U.S. Skyrocketing 
New York, NY (PRWEB) May 13, 2013


Increase in Diabetic Neuropathy Escalates Neuropathy Epidemic Impacting Millions According to The Neuropathy Association.

"Neuropathy impacts 1 in 15 Americans--it is a leading cause of adult disability".

According to The Neuropathy Association, there are now 15-18 million Americans with diabetic peripheral neuropathy (DPN) due to the increasing prevalence of diabetes. 60-70% of the 25.8 million adults and children in the U.S. with diabetes have DPN.* The growing DPN statistic significantly raises the overall number of people with neuropathy in the U.S.

“In the past, we estimated that there were 20 million Americans with all forms of peripheral neuropathy,” notes Tina Tockarshewsky, president and CEO of The Neuropathy Association. “However, with DPN numbers alone now at nearly 20 million, it’s time to acknowledge the need for better data quantifying this epidemic. We are all gravely underestimating the millions of people struggling and suffering with neuropathies. It’s time to ‘do the math’ when counting neuropathy’s prevalence, and finally address it as the public health emergency it is.”

May 13-17 is the ninth annual Neuropathy Awareness Week, an event launched by The Neuropathy Association to promote greater attention to and prevention of this growing national epidemic. For 18 years, The Neuropathy Association has been an active national patient advocacy organization working to change perceptions about this progressive, chronic and often extremely painful neurological disease.

Peripheral neuropathy, or “peripheral nerve damage,” impacts well over 20 million Americans (at least 1 in 15), making it one of the most common chronic diseases and a leading cause of adult disability. Neuropathy disrupts the body’s ability to communicate with its muscles, organs, and tissues. Symptoms can include numbness, tingling, weakness, and pain often beginning in the hands and feet. With early diagnosis, it can often be controlled and quality of life restored. If ignored, symptoms can intensify to loss of sensation, weakness, unremitting pain, and/or disability.

Of the over 100 known types of neuropathy, diabetic neuropathy represents over a third of all neuropathies, making diabetes the leading cause. A third of neuropathies are “idiopathic” (unknown cause). Other neuropathies include autoimmune-related, hereditary, cancer or chemotherapy-related, entrapment or trauma-related, and neuropathies related to causes such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases (including Lyme and HIV/AIDS).

The millions of Americans with peripheral neuropathy include:

15-18 million with diabetic peripheral neuropathy;
79 million with pre-diabetes who are at risk for developing DPN (source: CDC);
230,000-575,000 with HIV-neuropathy, or 20-50% of HIV patients (source: CDC);
420,000 with chemotherapy-induced neuropathy, or 30% of cancer survivors (source: American Cancer Society);
125,000 with Charcot-Marie Tooth hereditary neuropathy (source: CDC).

“Living with neuropathy can cause tremendous frustration for patients. Many feel isolated because relatives, loved ones, and often even caregivers are not familiar with neuropathy or neuropathic pain,” observes Dr. Thomas Brannagan, III, The Neuropathy Association’s medical advisor.

“Living with chronic pain impacts a patient’s day-to-day functionality,” shares Dr. Sudhir Diwan, chair of The Neuropathy Association’s neuropathic pain management medical advisory council. “Patients get caught up in a vicious cycle of co-morbid conditions connected to their underlying neuropathic pain, resulting in physical and psychological problems including impaired concentration, anxiety, depression, a decline in cognitive abilities, and sleep difficulties. Lack of sleep can, in turn, cause irritability and increased pain sensitivity.”

“Neuropathy’s prevalence is escalating at an alarming rate. Awareness must increase to ensure earlier diagnosis. Until we find the disease-modifying treatments and cures that currently don’t exist, our only cure is prevention,” adds Tockarshewsky. “Additionally, ‘doing the math’ to calculate neuropathy’s insidiousness must also factor the economic burden with the human toll. Medical costs and workplace productivity losses are also increasing. Neuropathy and neuropathic pain patients are often high health care system users as they seek relief from persistent suffering. Those debilitated by neuropathy or coping with chronic pain are challenged with working full-time, and may become unemployable or stay under-employed.”

About The Neuropathy Association

Founded in 1995, The Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support, education, advocacy, and the promotion of research into the causes of and cures for peripheral neuropathies through its nationwide network of members, regional chapters, 15 medical Centers of Excellence, and 150 patient support groups.

References:

Center for Disease Control and Prevention’s (CDC) 2011 National Diabetes Fact Sheet
http://www.diabetes.org/diabetes-basics/diabetes-statistics/

http://www.prweb.com/releases/NeuropathySkyrocketing/DiabeticNeuropathyRises/prweb10725805.htm

Fatigue A Neuropathy Problem

Today's post from neuropathysupportnetwork.org (see link below) is written by LtCol Eugene B Richardson whose good work we have featured before on the blog. It talks about an often underestimated side effect of neuropathy (and also HIV), fatigue. The article looks at various ways of dealing with this yourself, especially when family and friends are often less than understanding. Chronic fatigue can severely affect the quality of your life, especially over a long period and finding strategies to cope with it may lessen the accompanying depression and frustration.

 

Fatigue in Peripheral Neuropathy

Posted September 25th, 2012 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Unfortunately fatigue is a central part of many neuropathies and especially the immune mediated neuropathies. It is central to many other illnesses that affect the body’s immune system. The causes are often complex and many.

Dr. Scott Berman, in his book Coping with Chronic Neuropathy notes in chapter VIII “Dealing with Fatigue and Insomnia” that this symptom is one of the most difficult and challenging for the neuropathy patient. Dr. Berman is a Psychiatrist, a member of the Advisory Board of NSN, lives with untreatable CIDP.

He notes:

…that in one study looking at fatigue in autoimmune neuropathy 80% of 113 patients had severe fatigue. The fatigue was independent of motor or sensory symptoms and was rated as one of the top three most disabling symptoms. (“Fatigue in Immune-Mediated Polyneuropathies,” Neurology 53: 8 November 1999, I.S.J. Merkies, et al).

For decades in living with untreated Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Autonomic Neuropathy (AN) and Progressive Polyneuropathy due to exposure to Agent Orange in Vietnam, I can attest to the facts noted above. While other major symptoms respond to treatment with Immune Globulin (IVIg), the symptom of severe fatigue continues as one of the symptoms that responds only temporarily to the infusions followed by several days of total fatigue following infusion and then with some lessening until the next infusion.

Dr. Norman Latov in his book “Coping with Peripheral Neuropathy”, states what I have heard other neurologists share, that the fatigue we feel, first appearing as weakness, increases as the weakness of motor nerves expands. At this point with only a few muscles doing the whole job of lifting a leg or arm or carrying on autonomic functions, the body becomes weak and eventually extreme fatigue occurs.

On the other hand, to state the obvious, pain in some neuropathies does not help us sleep. Neuropathy patients must seek medical help in finding medications or other options which works for them. The medical establishment is slowly recognizing the reality of neuropathic pain and the strange symptoms from damaged peripheral nerves. Yet, as long as we do not have sufficient medical tools and clinical skills for diagnosis and treatment of the neuropathies, neuropathy patients will always face the challenge of dismissal for their often strange complaints.

Impact on family and friends:

Families and friends, as we all have learned, may not understand this reality since we “look so good” and may even believe/suggest that you are just lazy or unmotivated or worse. The best thing you can do for them is to have them watch the DVD Coping with Chronic Neuropathy which will be an education about the impact of any neuropathy on our lives.

Educating yourself about neuropathy:

At any rate, fatigue is something we struggle with every day and often regulates/determines our daily activities.

While fatigue in neuropathy and other chronic illnesses is not fully understood by the experts, from a practical standpoint, here is what I have learned to do or not do in coping with fatigue. If you have found other things that help, send us a message and we will add it to the list.

1. DO NOT think negatively about fatigue, thus feeling guilty about your fatigue. Go take a nap! (See DVD “Coping with Chronic Neuropathy”).
 

2. Learn when your “fatigue” periods occur, as these often establish a pattern at certain times of the day. Then go LAY DOWN and stop moaning about it, as it is what it is until it isn’t.
 

3. I have learned that you do not even have to actually “sleep”, but just allowing your body to rest/stop for an hour takes care of the exhaustion as the body recovers. But whatever works for you, do it without guilt or apology.
 

4. For nighttime, have a standard bedtime routine in preparing for sleep that tells your body that it is time to sleep.
 

5. Do not eat a large meal just before bedtime or take a stimulant that keeps you awake or might interfere with sound sleep (i.e. caffeine, for some alcohol).
 

6. Do consider drinking a glass of milk as for many this encourages the body to sleep.
 

7. Do consider one of those special recordings of quiet music or rain falling or similar if it helps.
 

8. Do consider using a ticking clock if that helps. (As a child in the 40s I got my best sleep on the floor in front of the big radio in the living room listening to Dragnet or was it the Lone Ranger, maybe the Big Story. Today most TV programs have the same effect, sleep!)
 

9. Muscle spasms and/or restless leg can make sleeping difficult and rob you of needed sleep. Speak to your doctor and have tests done for calcium, salt, potassium levels and other deficiencies which can make it difficult for muscles to work properly. This is especially true if you are on a diuretic which can empty your body of needed minerals. Getting up and having a glass of orange juice worked for my mother and works for me. If the lack of something is not the problem, have the doctor find out what may be causing these muscle problems.
 

10. I have found that if I wake up with my mind creating solutions to an issue or writing poetry (happens) and not able to sleep, I go to another room or go do some work on my computer (write out the solution or poetry) until I begin to feel sleepy again. It works for me.
 

11. For some insomnia is a real curse. There are medications that one can use as Dr. Scott Berman mentions in his book, so speak to your doctor. Frankly, I would work on natural solutions first and be creative to see what works for you. But if ALL else fails these medications may help and be a heaven sent blessing.
 

12. (So what do you do or not do that helps? Send it to us and we will enter it here!) (See original page/link below)

 

http://neuropathysupportnetwork.org/blog/2012/09/fatigue-in-peripheral-neuropathy

Is Polypharmacy A Problem For Neuropathy Patients

Today's post from nytimes.com (see link below) poses a question that all nerve pain patients should perhaps ask themselves: are you over-medicating? By over-medicating, I don't mean are you taking too many prescription drugs (although that can be an issue) but are you mixing, matching and adding to the drugs your doctor has already prescribed? Because of the nature of neuropathy, you're most often dealing with one disease on top of another disease (frequently the cause of the nerve problems) and you're already taking quite a few drugs to tackle both problems. When you add the world of supplements and herbal remedies to the mix, you may be creating multiple health issues for yourself down the line. We go for supplements because the regular drugs just don't work well enough and we read about this or that that has been shown to help some patients elsewhere. Problem is...we don't tell our doctors and even if we do, there's no guarantee that the doctors know enough about the myriad of supplements to be able to advise objectively. According to this article, older people are most vulnerable to polypharmacy because they tend to build up lists of drugs they never come off and keep adding to them as the problem gets worse. Are we indulging in self-harm on a massive scale backed by the advertising might of the supplements industry. And yes, this blog is as guilty of promoting the possibility of supplements as anyone else because people are always searching for that one extra thing that might help with neuropathic pain. The important thing is to do your research, tell your doctor and sort the wheat from the chaff - if something doesn't improve your situation...stop taking it...don't keep on adding to the list.

The Dangers of ‘Polypharmacy,’ the Ever-Mounting Pile of Pills
Paula Span THE NEW OLD AGE APRIL 22, 2016

Dr. Caleb Alexander knows how easily older people can fall into so-called polypharmacy. Perhaps a patient, like most seniors, sees several specialists who write or renew prescriptions.

“A cardiologist puts someone on good, evidence-based medications for his heart,” said Dr. Alexander, co-director of the Johns Hopkins Center for Drug Safety and Effectiveness. “An endocrinologist does the same for his bones.”

And let’s say the patient, like many older adults, also uses an over-the-counter reflux drug and takes a daily aspirin or a zinc supplement and fish oil capsules.

“Pretty soon, you have an 82-year-old man who’s on 14 medications,” Dr. Alexander said, barely exaggerating.

Geriatricians and researchers have warned for years about the potential hazards of polypharmacy, usually defined as taking five or more drugs concurrently. Yet it continues to rise in all age groups, reaching disturbingly high levels among older adults.

“It’s as perennial as the grass,” Dr. Alexander said. “The average senior is taking more medicines than ever before.”

Tracking prescription drug use from 1999 to 2012 through a large national survey, Harvard researchers reported in November that 39 percent of those over age 65 now use five or more medications — a 70 percent increase in polypharmacy over 12 years. Continue reading the main story

Lots of factors probably contributed, including the introduction of Medicare Part D drug coverage in 2006 and treatment guidelines that (controversially) call for greater use of statins.

But older people don’t take just prescription drugs. An article published in JAMA Internal Medicine , using a longitudinal national survey of people 62 to 85, may have revealed the fuller picture.

More than a third were taking at least five prescription medications, and almost two-thirds were using dietary supplements, including herbs and vitamins. Nearly 40 percent took over-the-counter drugs.

Not all are imperiled by polypharmacy, of course. But some of those products, even those that sound natural and are available at health food stores, interact with others and can cause dangerous side effects.

How often does that happen? The researchers, analyzing the drugs and supplements taken, calculated that more than 8 percent of older adults in 2005 and 2006 were at risk for a major drug interaction. Five years later, the proportion exceeded 15 percent.

“We’re not paying attention to the interactions and safety of multiple medications,” said Dima Qato, the lead author of the JAMA Internal Medicine article (Dr. Alexander was a co-author) and a pharmacist and epidemiologist at the University of Illinois at Chicago. “This is a major public health problem.”

She was stunned to discover, for instance, that the use of omega-3 fish oil supplements had quadrupled over five years. Her research suggests that almost one in five older adults now takes them.

Users probably believe fish oil helps their hearts. But Dr. Qato pointed out fish oil capsules lacked regulation and evidence of effectiveness, and can cause bleeding in patients taking blood thinners like warfarin (brand name: Coumadin).

Though drug interactions can occur in any age group, older people are more vulnerable, said Dr. Michael A. Steinman, a geriatrician at the University of California, San Francisco, who wrote an accompanying commentary.

Most have multiple chronic diseases, so they take more drugs, putting them at higher risk for threatening interactions.

The consequences can also be more threatening. Say a drug makes older patients dizzy.

“They’re more prone to fall, because they don’t have the same reserves of balance and strength” as the young or middle-aged, Dr. Steinman said. “And if they do fall because they’re dizzy, they’re more likely to get hurt.”

Some common combinations that cropped up in the study and could spell trouble: aspirin and the anti-clotting drug clopidogrel (Plavix), both blood thinners that together increase the risk of bleeding with long-term use; aspirin and naproxen (Aleve), over-the-counter drugs that when combined can cause bleeding, ulceration or perforation of the stomach lining.

Dr. Qato recalled reviewing the medications of a 67-year-old man taking both the cholesterol drug simvastatin (Zocor) and the blood pressure medication amlodipine (Norvasc) — the most common combination of interacting drugs that emerged in her study.

Statins, along with their cholesterol-lowering properties, can cause muscle pain and weakness; Norvasc heightens that risk. A different blood pressure drug — there are many alternatives — would be a safer choice, Dr. Qato said. Yet almost 4 percent of the older adults in her study took both drugs.

Moreover, though her patient wasn’t experiencing problems, he was also taking garlic and omega-3 supplements, which can interact with prescription medications.

“Did you tell your doctor you were on them?’” Dr. Qato recalled asking. “He said, ‘No, why should I? If it was important, why didn’t he ask me?’”

A reasonable question. A recent study in JAMA Internal Medicine, however, found that more than 42 percent of adults didn’t tell their primary care doctors about their most commonly used complementary and alternative medicines, including a quarter of those who relied most on herbs and supplements.

Usually, that was because the physicians didn’t ask and the patients didn’t think they needed to know; in a few cases, doctors had previously discouraged alternative therapies, or patients thought they would.

And they might, especially for older patients with complex regimens. “I’m not a big fan of supplements,” Dr. Alexander tells patients taking lots of vitamins, supplements and herbal remedies.

“I think the vast majority of evidence raises serious questions about their effectiveness or, in some cases, their safety. They’re less well regulated than prescription medications. I think you’d be better off stopping them.”

Patients often resist, he said, and “they’re the captain of their own ship.” So he explains the risks and benefits, and negotiations ensue.

Often, though, patients don’t know that a daily aspirin, Prilosec OTC or fish oil can interact with other drugs. Or they’re confused about what they’re actually taking.

Dr. Steinman recalled asking a patient to bring in every pill he took for a so-called brown bag review. He learned that the man had accumulated four or five bottles of the same drug without realizing it, and was ingesting several times the recommended dose.

Ultimately, the best way to reduce polypharmacy is to overhaul our fragmented approach to health care. “The system is not geared to look at a person as a whole, to see how the patterns fit together,” Dr. Steinman said.

In the meantime, though, patients and families can ask their physicians for brown bag reviews, including every supplement, and discuss whether to continue or change their regimens. Pharmacists, often underused as information sources, can help coordinate medications, and some patients qualify for medication reviews through Medicare.

“We spend an awful lot of money and effort trying to figure out when to start medications,” Dr. Alexander said, “and shockingly little on when to stop.”

http://www.nytimes.com/2016/04/26/health/the-dangers-of-polypharmacy-the-ever-mounting-pile-of-pills.html?_r=0

The Problem Of Diabetic Neuropathy

Today's post from exploreb2b.com (see link below) is entitled 'the menace of diabetic neuropathy' but actually applies to all neuropathies irrespective of the cause. It's sometimes slightly irritating when articles or sites seem to imply that neuropathy is unique to diabetes, although it has to be admitted that by far the majority of neuropathy patients have it as a result of diabetes. However, this should not prevent you from reading neuropathy articles with diabetes in the title because the information they provide is relevant to most neuropathies. The only difference is advice about regulating blood sugars but that is in order to prevent neuropathy and has little effect once neuropathy is established. At that point, the treatment options are the same for most people living with the disease.
 

The Dangerous Menace of Diabetic NeuropathyAuthor
Health Quest New York 

Diabetes is dangerous, and if not kept in check it could bring about serious nerve damage and affect the body in various ways.

Diabetes is not a disease but a condition. It is important to know that it can lead to a whole lot of serious ailments if not kept in check. So just how serious could these maladies get?

The Avatars of Diabetic Neuropathy

For starters, there are six major manifestations of diabetic neuropathy. And they all are disorders with serious implications.

• You have peripheral neuropathy in which the peripheral nerves get affected, particularly those of the lower legs. This normally depicts itself through numbness or a tingling sensation in the lower legs or the feet. Symptoms of peripheral neuropathy could also include sensation loss in the lower legs or the feet.

• Then you’ve got autonomic neuropathy which affects the nerves controlling vital body functions including heart rate, emptying of bowel and bladder, digestion and blood pressure. You may begin to experience dizziness, nausea, low blood pressure, fainting and even difficulty in swallowing.

• Moving on to femoral neuropathy, this symptom is a dysfunction of the femoral nerve which results in lesser control while you walk. You could also experience groin pain, and hip pain which would make it difficult for you to walk, sit or move around. You may also experience a tingling or numb sensation in the knee, foot and calf.

• If you thought these were really hard to manage, there’s more. The nerves exiting your spine could get compressed or irritated, resulting in neck and back pain.

• What if some joints of your body are unstable or swollen? That’s what happens with the diabetic neuropathy condition called Charcot’s Joint or neurogenic arthropathy. Apart from swelling and instability, the bone in the joint goes through atrophic and hypertrophic manifestations while the joint also experiences hemorrhage and heat.

• Finally there is – foot drop. This causes inability to lift your foot’s front portion. You’ll be dragging your toes as you walk – not a pleasant sight to behold or a great feeling to experience.

Diabetic neuropathy is a condition that could significantly affect your quality of life. You’ve got to keep your blood sugar levels in check since you never know when your diabetes could become more serious and you begin to experience strange sensations and unpleasant feelings.

Treatment Options

Treatment for diabetic neuropathy is varied since there are different manifestations of this condition, as mentioned above. But we have only scratched the surface. The six conditions we’ve mentioned only make up an overall view. In fact, there are many more specific symptoms for aspects of these conditions out there and treatment is therefore different and ranges from minor to major.

Generally, treatment for diabetic neuropathy at advanced multi-specialty healthcare centers would involve nerve pain relief medication to reduce nerve damage. These medications would enable the nerves to repair themselves and include tricyclic antidepressants, narcotic pain medication and opioids and similar drugs. Chiropractic treatment can help improve brain-to-body communication and vice versa while also activating the nervous system. Physical therapy may also have to be performed for improving the body’s blood circulation, strengthening the affected muscles of the foot and leg, and restoring sensation.

https://exploreb2b.com/articles/the-dangerous-menace-of-diabetic-neuropathy

Gastroparesis An Autonomic Neuropathy Stomach Problem

Today's post from blog.diabetv.com (see link below) looks at a specific symptom of autonomic neuropathy (nerve damage where the involuntary functions of the body are affected) that many neuropathy patients may suffer from but have no idea what it is and why it happens. It's called Gastroparesis and basically means that, due to nerve damage in the digestive system, food either stays too long in the stomach, or is not properly digested, leading to a whole raft of problems. One of the problems is that the tests for this are not pleasant, some might say 'invasive' and I would hazard a guess that most doctors won't take the trouble to carry them out because there are so many other possible causes of the symptoms that first come to mind. Read this short article and if you think you may fall into this category, be as persuasive as you can in getting yourself tested. Autonomic neuropathy is one of the worst forms of nerve damage to diagnose because it can affect so many bodily functions at the same time but that doesn't mean that it shouldn't be taken seriously.

AUTONOMIC NEUROPATHY: HOW IS GASTROPARESIS DIAGNOSED?
Posted by Dr. Leonel Porta

Autonomic Neuropathy is one of the most common types of Neuropathy in diabetics. As the name implies, the autonomic nervous system is responsible for monitoring the functioning of the organs that act largely unconsciously and regulates bodily functions such as the heart rate, digestion, and respiratory rate.

When stomach function is impaired due to this nervous complication in diabetes, Gastroparesis (a condition in which your stomach cannot empty itself of food in a normal fashion) occurs. Today, we will focus on how to know if you have Gastroparesis and which tests will help the doctor diagnose this diabetic complication.

In DiabeTV we’ve talked about Gastroparesis and its complications, however, it is important to remember that Gastroparesis is a condition that consists of a delayed gastric emptying, that is, the stomach takes too long to empty its contents. What causes this? It’s caused by a damage to the vagus nerve, which controls the movement of food through the digestive system.

When a diabetic patient has complications such as Autonomic Neuropathy which are affecting the vagus nerve, the muscles of the stomach and intestines do not work properly, so that the movement of food is stopped or delayed. Remember, that when blood glucose levels remain raised for a prolonged time, damage occurs to the blood vessels that carry oxygen and nutrients to the nerves. Also, chemical changes can occur within nerves which alter their structure and function.

Some of the many symptoms that give indications of Gastroparesis, are nausea, vomiting of undigested food, poor appetite, weight loss, premature feeling of fullness when eating, bloating, heartburn, gastroesophageal reflux, and stomach spasms.

The tests that the doctor carry out to diagnose Gastroparesis are varied and depend on the severity of symptoms and conditions of the patients. These include:

Barium X-Rays: This test consists of an X-ray done after drinking a substance (barium) that allows the anatomy of the small intestine to be hightlighted and outlined. The presence of a blockage in any part of the small intestine will result in the accumulation of the barium solution which shows the gastric delayed emptying.

Gastric Emptying Scan: this is a nuclear medical test that shows whether the solid and liquid foods remain for too long in the stomach caused by a lowered emptying rate. The patient ingests a radiolabeled test meal food and by using a scanning technique the rate of gastric emptying is measured.

Gastric manometry: This is a test to measure the electrical and muscular activity of the stomach during the digestive process. For this test, an endoscope is inserted through the mouth into the stomach. This provides information about the strength and frequency with which the stomach muscles contract under fasting or feeding conditions.

Upper Gastrointestinal Endoscopy: this examination allows an screening of several causes Gastroparesis which appear as symptoms. Under an anesthesia a thin flexible probe is introduced via the mouth into the stomach. The endoscope allows an inspection of the upper gastrointestinal tract, looking for possible ulcers, swelling, tumors, hernias, or other abnormalities. If necessary, samples for biopsies may be taken.

Like the upper endoscopy, an ultrasound or a blood test will allow your doctor to rule out other possible causes of delay in gastric emptying, different from Autonomic Neuropathy.

Treatments for Gastroparesis include the use of insulin, oral medications, changes in the diet, and modifying eating schedule. In more severe cases, feeding tubes orally or intravenously insertes can be used. Gastroparesis associated with diabetes is an entirely preventable complication. The priority of all diabetic patients should always be to control their blood glucose levels. Only then they will avoid unnecessary complications and ensure their own welfare.

http://blog.diabetv.com/autonomic-neuropathy-how-is-gastroparesis-diagnosed/

What Is Neuropathy A Growing Problem

Today's post comes from thebody.com (see link below) and marks the start of twelve daily posts from The Body regarding neuropathy and HIV. Even if your neuropathy is not related to HIV, you may find a great deal of the information interesting because irrespective of the cause, the symptoms of neuropathy are common to most people with nerve damage. This post talks in general terms about what neuropathy is and in the next two days will expand to include the link between neuropathy and HIV and the ways in which neuropathy is currently treated.

What Is Neuropathy? A Growing Problem

By Dave R. December 17, 2011

Let's keep it simple here. If you've had neuropathy for some time, you'll already know what we're dealing with but if you're just beginning to encounter strange sensations in your feet or hands, or numbness which makes it feel like you've got wet sand in your socks when you walk, you may be wondering what on earth's happening to you. You may also be concerned that it's something that may happen to you in the future, or maybe already know a family member or friend with neuropathy and want to understand what's involved to be more supportive.

Basically, neuropathy is nerve damage. You can equate it to an electrical short circuit, which causes a breakdown of normal service in the nervous system. It's a highly complex condition with many causes and equally many variations and although the symptoms are like no other disease, it can be very difficult to diagnose. Once diagnosed, a prognosis is almost impossible because its progress is dependent on your personal situation. It's another auto-immune disease, where in this case, the immune system more or less attacks the nervous system.

Our nervous system is made up of two parts: the central nervous system and the peripheral nervous system. The central nervous system comprises the brain and the spinal cord and the peripheral nervous system concerns the nerves which spread out from the central nervous system. Confused already? Hopefully not yet.

In general there are two types of neuropathy. If we're talking about damage to a single nerve, then we would call it mono-neuropathy; if several or more nerves are damaged then it is called poly-neuropathy. The peripheral nerves (extensions growing out of a nerve cell or neuron) are also called neurites and they can be compared to electricity cables because neurites also have an external insulating material called myelin. Myelin protects the neurites against both physical damage and electrical impulse damage to the tissue. Neuropathy occurs if the nerve cells or myelin are damaged or destroyed. That's why you can compare it to a domestic short circuit, which makes it easier to visualize.

Most people have one or another form of peripheral neuropathy: nerve damage in the longest nerve channels, furthest away from the brain and spinal cord. This is characterized by the well-known symptoms found in the extremities (the hands, arms, legs and feet) but can also be seen in the internal organs. The symptoms can vary, with amongst others, tingling or loss of feeling; a burning feeling (especially on the feet and hands); itching, chronic pain, or combinations of some or all of them.

Unfortunately, the potential problems don't end there.

Neuropathy can also attack the so-called Autonomic Nervous System, a term for the part of the nervous system that works involuntarily -- we have no control over it. This system controls things like heartbeat, blood pressure, digestion, certain muscular and lung functions, liver and kidney operations, sexual activity and so on: to put it simply, things which work in the body without us being consciously aware of them.

If neuropathy begins to affect the autonomous nervous system, then a whole range of activities may cease to function normally. Blood pressure problems, (dizziness on standing upright); drying up of sweat, saliva and tear glands; urine retention (not being able to empty the bladder completely); impotence, constipation, stomach contents retention (not being able to clear the bowels); heart rhythm problems; breathing difficulties and so on.

Most people on the street have never heard of neuropathy and certainly most HIV-positive people are unaware that it's a real possibility in their lives; which is strange considering that is generally accepted that around twenty million Americans (and therefore a proportionate number in other countries in the world) suffer from neuropathy in one form or another. Most of them have neuropathy as a result of diabetes, or chemotherapy treatment, or alcoholism, or physical trauma, (up to a hundred causes in all) but the disease still remains relatively unknown; why?

As you know all publicity costs; and because there is no cure and therefore, no world-beating medication for the drug companies to compete over, there is no new money to be made, so few pharmaceutical companies are going to promote neuropathy as a cause. Instead, they boost their older pain killers, anti-depressants, or epilepsy drugs, which work for some people in suppressing the discomfort -- no cash to lose there. Apart from that, there are very few high-profile role models (Angela Lansbury and Johnny Cash are hardly likely to bring in the big bucks!) and the media doesn't find images of neuropathy patients to compare with the AIDS orphans in Africa.

That's another major problem for neuropathy campaigners: neuropathy is a disease which, if you stand still, doesn't usually have any outward signs: no rashes, lumps, or malformed limbs, or swelling, or wasting; you can look the picture of health and yet still be in agony from neuropathy. It can be a major issue convincing people, from doctors to family members and loved ones, that you've really got a problem. Little wonder that the anti-depressants are sometimes more useful for the depression resulting from the disease, than helping the symptoms!

The longer you live with the disease, the more you grow to understand what's happening to you but in the beginning, it's like sifting through mud trying to find answers and solutions. Many doctors will still just shrug their shoulders, sympathize and tell you that you'll just have to learn to live with it; which for a patient already living with HIV, is the most negative and depressing thing they could hear. Why don't doctors realize that?

The problem is that patients living with HIV need doctors who will look at their situation holistically because every side effect, medication, or virus-related problem is linked to another medical area. Luckily, most HIV specialists are fully aware of that and have become "Jacks of all trades" in the medical world. You don't just treat the virus HIV; you treat everything that comes with it and for some people that's like the contents of a small medical dictionary! Neuropathy, in whatever form, is the unexpected sniper that hits you just when you thought everything was settling down in your medical life. It doesn't come with the virus, or when you begin the drug regimes, but appears later, as a result of the medication, the virus itself, or a host of other reasons. It's a mean, life-changing disease that has different causes and is different for everyone and that's precisely what makes it so difficult to treat and why doctors are just as frustrated as we are.

That said; neuropathy doesn't affect everyone with HIV. Current estimates and statistics show that at least a third of HIV-positive people will encounter neuropathic problems but that means that two thirds won't! Still, one in three, or four is pretty significant and the longer people survive with HIV, the more cases of neuropathy (amongst other things) are appearing. Then, if you do have neuropathic symptoms, they may begin with as little as numbness in one toe ... and stay that way; or tingling in the feet and hands, combined with numbness and paradoxically, pain which eventually lead to muscle weakness and some form of permanent disability. It's just that sort of disease; it ranges from mild to wild, with everything in between. The doctors try to treat the symptoms with a variety of drugs and/or supplements and alternative therapies and what works for one person, doesn't work for another with exactly the same symptoms -- are you getting the picture? Unfortunately, however much the many symptoms can be helped or not, the disease itself is, in 2011, still incurable.

This article is not meant to depress people but it is meant to be realistic. If you know what you're dealing with, then it's much easier to find a place for it in your life. Moreover, worst-case scenarios are just that: you will probably be able to find something to help your own neuropathy experience become more bearable. It may take a while, as you try this, that or the other treatment but most people will findsome relief amongst the many options available. It's very important to learn as much as possible about your condition and if your doctor tells you there is nothing he or she can do, that may be strictly true in terms of curing the problem but that is never an acceptable approach in terms of living with the disease; change doctor and find someone who will support you in your efforts to control the worst aspects of neuropathy -- with a bit of luck, your HIV specialist may be the very person. Armed with facts, you can work with the medical specialists, rather than passively accept a one-sided relationship. However, most first-port-of-call doctors are not neurologists and may have a limited experience of neuropathy. Plus, busy as they are and under the burden of time restrictions, their very human instinct may be to usher you out as quickly as possible, to try to clear the day's backlog of patients. If you can save them some time by doing your own research beforehand and maybe setting your symptoms down on paper, you'll earn respect and establish a constructive treatment program much more quickly.

After all, you're already living with HIV; you deserve some acknowledgement for what you've already gone through but as Sir Francis Bacon said in 1597, "Knowledge is power."

http://www.thebody.com/content/65219/what-is-neuropathy-a-growing-problem.html?getPage=1