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Greetings plant lovers!

Today through January 26, I'm offering a thank you discount code for 10% off anything in my shop. 

Enjoy this week's newsletter to find the code! 

~~ How to use herbal marc, a sexy poem, and lovely photos from my hearth to yours ~~

Authentic Voices with Neuropathy Vid

Today's video is a short account by an HIV-positive woman who also has neuropathy. She has been inspired by listening to other women with the same problems. The positive message and outlook on life are refreshing. (See Transcript and link below)

Transcript

Other women help me because one, when they shared their story or their experience of living with HIV, it wasnt just their story, it was the fact of how long they lived with it and the fact that they were actually living with it. They would sit there and they would tell me the things that they did just daily. “Oh, I get up and work out.” I am like, “You work out? Dont you have neuropathy?” “Oh yeah, but I am going to tell you something right now. I am going to have to drop until, you know, before I stop walking. It hurts but you know, I tell myself every morning that until my legs are gone I am going to keep on walking.”And so it was things that women said, things that women did. That the fact that these were women that were actually living. I mean, because here I am at home, my blinds are closed and I am not really living. I am afraid to even come outside my house thinking that people are going to know I am HIV positive. And so, I kind of isolated myself and it was only my home, the doctor, grocery shopping, picking up the kids from school, coming back home, you know. So, I really tried to really isolate myself, and it was behind the stories of women that really made me see that there was more to life than just HIV and that HIV is a part of me but it is not me and who I am.

http://health.uneca.net/9302/Talking_With_Other_HIV_Positive_Women.html

Personal Account Of Living With Neuropathy

Today's post from trialx.com/curetalk (see link below) illustrates that although the causes may be very different, the effects of neuropathy are pretty much recognisable to all. This lady has chemotherapy-induced neuropathy and she clearly has severe problems. It's important to realise that not everybody ends up with such life-changing neuropathy (for most people, the symptoms are much milder) but many do and daily life becomes a struggle just to get through. She looks for the plusses and makes the very best of her condition - a lesson for us all.

Peripheral neuropathy (PN) revisited – Part One

Pat Killingsworth December 22, 2012
Yesterday I noted how “my peripheral neuropathy (PN) is off-the-charts lately.”

There is no denying that my PN is getting worse. I don’t notice it much because of the carefully balanced series of drugs and supplements I take to help control my symptoms.

I slept-in today. NICE!

But I payed for it. If I stay in bed too long in the morning, that means I haven’t taken any anti-PN meds for over eight hours.

My legs below my knees begin to feel hot and tingle. My feet feel like they are on fire. And my hands are so stiff and painful I often drop the pills that will help control my symptoms later that day.

Sunday we stayed in bed and watched the news shows on TV (we are both political junkies) in protest of losing an hour for daylight savings time.

By the time I tried to get out of bed I could barely walk. Every step was excruciating!

But like a miracle, within 20 minutes the pain and discomfort were under control. And an hour later I was out with Pattie, walking the dog along Pine Island Road, watching fiddler crabs scurry back into their holes at low tide.

There are two threads I would like to cover here. My worsening PN, and the way I am able to manage the symptoms so effectively.

I have written a number of times about tips various readers have shared with me to help control PN symptoms over the years.

Last June, I wrote one which featured a half dozen or more links to Myeloma Beacon columns and other articles I had read or written on the subject over the years:Tips To Help Minimize The Pain And Discomfort Caused By Peripheral Neuropathy From The People Who Know Best: Our Fellow Patients

Disregard the lines that you will see struck-through the Myeloma Beacon links. I checked them and they still work.

One of the most interesting articles I mention in that post covered an experience I had at the ASH meetings in 2010.

I was asked to participate in an IMF focus group about PN. It was a wonderful experience and I learned a lot. I will never forget the struggle several of my fellow patients had with their extreme PN symptoms. One poor woman could barely walk. Another couldn’t wear shoes because her pain was so bad–she wore slippers to the event.

I never dreamed that might be me! But lately I’m not so sure…

In the post I describe my worsening PN:

“Last week I finished my third of four scheduled RVD (Revlimid/Velcade/dexamethasone) chemotherapy cycles. The first two, three week cycles didn’t seem to cause much increase in my PN.

But there were hints my twice a week Velcade infusions might be leading to a PN problem.

One day I had a cramp or “stitch” in my side which lingered for hours. Another morning I experienced sharp pains on the bottom of my feet. Both issues resolved themselves without further incidence.

That is, until the start of cycle number three.

BAM! Mid-week my hands became so stiff I could barely bend my fingers. One week later, I experienced what I can best describe as “full body neuropathy.” My body felt like a tuning fork for days. One morning I woke-up and my face was numb for hours. And in the meantime, my hands and feet became increasingly numb. It was becoming difficult to walk. My PN now reached above my knees, with hot flashes shooting down my right leg very few hours. Freaky, disarming–and more than just a bit inconvenient.”

Fortunately, something as simple and groundbreaking as switching to sub-q Velcade helped a lot. For the most part, it put an end to my “full body neuropathy” and also improved the amount of tingling I felt in my feet.

But unlike a majority of myeloma patients, my PN seems to be aggravated by Revlimid. And unfortunately, once my symptoms worsen, they rarely improve very much–even after I stop using Revlimid for a while.

This is a rare week-off of my RVD (Revlimid/Velcade/dexamethasone) therapy. No Velcade or Revlimid this week. Today is Thursday. My hands are exceptionally stiff, even after taking my meds. It even hurts a bit to use the keyboard.

My feet are numb and feel like they are asleep. It is time I admit to myself the reality that my PN is becoming more difficult to manage.

Tomorrow I will rummage-through my medicine cabinet and list all the anti-PN meds and supplements that I am currently taking. I will also share some of the suggestions I have been receiving from readers to help.

By working to improve my worsening PN symptoms, maybe others who are suffering from PN can improve their quality of life as well. Worth a try, right?

Feel good and keep smiling! Pat

http://trialx.com/curetalk/2012/03/peripheral-neuropathy-pn-revisited-%E2%80%93-part-one/

How to Work that Body with Neuropathy

More stating the obvious in today's post from articlesnatch.com (see link below) but nevertheless we know we have to try. The problem with painful neuropathy is that it can turn you into a couch potato before you realise what's happening. It's not laziness, it's the pain but underneath we all know we have to make some effort because extra weight and weak muscles only make the neuropathy symptoms worse. This article is gentle and doesn't beat you over the head with must-do's - definitely worth a read every few months!

"but, Doctor, It Hurts When I Exercise…"
By: John Hayes Jr

What do you do when your neuropathy or some other painful condition just makes it hurt to work out?

It helps to not only lose weight but keep your weight under control…

It strengthens your bones…

It improves your cardiovascular health…

It has even been shown to fight depression…

And if you happen to have diabetes, you know how important exercise is in managing your glucose levels.

But what do you do when your neuropathy or some other painful condition just makes it hurt to work out?

If you struggle with neuropathy, complications from diabetes, post-chemo nerve pain or any other painful medical condition, it can be really easy to just sit around and do nothing.

Because it just hurts too much to be active.

But it doesn't have to be that way. Do some exercise that doesn't need ache from your joints. Try it now but don't give yourself into so much pain just like what you feel.

Most of us would agree that it be far better to prevent suffering like this by doing the necessary amount of exercise every day. Follow this movements to start you with:

Yoga

Yoga will keep you limber and stretches the muscles in slow, easy, fluid movements. You can do it as slowly as you like. You don't have to qualify as a Cirque Du Soleil acrobat to get the benefits of a good yoga practice. Just do the postures to the best of your ability. If it has been awhile since you've exercised, don't expect to be limber overnight. Give yourself time.

Yoga stretches the muscles and increases muscle strength simply by using the body's own weight. No extra equipment, no extra weight on painful joints or swollen feet. Just what you already carry. That's tailor made for people suffering from nerve pain.

Tai Chi

Tai Chi is a very slow moving martial art. Each and every movement is done slowly and through a complete cycle, works every muscle group in the body. Even though it is not a strenuous exercise program, the health benefits for your bones and muscles are undeniable.

Once again, Tai Chi uses the body's own weight to strengthen the muscles. Your sore joints and swollen tissue aren't subjected to increased weight. And because the movements are slow and fluid, no added pain from sore muscles to complicate the symptoms of neuropathy that you already suffer from.

Swimming

If your joints are so painful that walking is not a good option for exercise, try swimming. Your movements are easier in water and you will put little weight or pressure on your feet. Make sure that the water is warm, not cold. Prolonged exposure to cold water will have a detrimental effect on your circulation and make a bad situation worse.

Swimming is also a wonderful way to strengthen your cardiovascular system and do so without taxing your limited strength. If you suffer from pain in your legs and feet, the buoyancy of the water takes some of the pressure off your extremities. Just being in the water can provide some relief from the pain in your nerves.

Stretching

Stretching exercises are a great way to increase muscle strength without causing your tender nerves more pain. Try to do some bending when you are in Bed and relax your body thoroughly.

This is a good stretching program that will give you a good total body stretch without ever getting on your feet. Manage an stretching exercise 6-8 times. Do not wait until it's too late before you start the stretching exercises:

• Start with your fingers and toes and gently stretch and contract them
• Next, move to your wrists and ankles and make circles with the joints
• Bend your elbows, bring your hands in to your shoulders
• Bend your knees, one at a time, toward your chest
• Bring your arms up to your ears and down, gently stretching your shoulder muscles
• Raise each leg, keep it straight, and raise it as far as you can.

None of these stretches requires a broad range of motion but will increase the circulation in your arms and legs and work your joints.

Stretching does not requires so much effort from your body. Try to be relaxed while taking time to loosen your muscle and balancing your blood circulation. When you deal with debilitating pain, just doing those two things can lead to great improvement in your overall health condition.

Start small, take it easy and do the exercise you choose at your own pace. Be gentle with yourself. If you do an exercise, it allows you to loosen the muscles and to prepare them for the daily activity that lies ahead. It is also important to spend enough time on stretch exercises because the better prepared our muscles are, the more vigorously we can train them. And that's the best way to ensure a good outcome from any medical treatment.

Dr. John Hayes, Jr. - Envy Award Nominee who writes "Living and Practicing by Design" and "Beating Neuropathy.

http://www.articlesnatch.com/Article/-but--Doctor--It-Hurts-When-I-Exercise-hellip--/1955747

Problems With HIV Drug Side Effects Try Acupuncture

Today's post from pacificcollege.edu (see link below) is a general article about the benefits of acupuncture for relieving the side effects of HIV combination drugs. It also specifically references neuropathy which may be of interest to regular readers. Many younger people, especially in the West, where HIV drugs have been significantly refined to reduce side effects considerably over the last few years, may well shrug their shoulders here and say that they have no side effect issues from combination therapy. However, the vast majority of people across the world who are living with HIV haven't achieved that luxury yet. They have to remain on older drug combinations because of resistance issues if they change, or non-availability and they may well have been living with side effects for so long that it's become part of their daily lives. In these cases, this article may be of value. It is important to consult a qualified acupuncturist who knows what he/she is doing and although it is relatively inexpensive compared to many therapies, cost may still be an issue. However, if you can afford it and feel you may benefit, why not try acupuncture/acupressure therapy. If you achieve relief from the symptoms, you may well be able to cut out, or reduce, other (non-HIV) drugs used to control pain.

Acupuncture to Ease the Side Effects of AIDS Drugs
No date or author provided

As drug cocktails continue to be used as a course of treatment for those who have HIV and AIDS, more patients are suffering through debilitating side effects that are caused by these medications. Often patients complain of a wide range of symptoms including, night sweats, nausea, vomiting, depression, insomnia, anxiety, peripheral neuropathy, muscle pains, and sinus congestion. However, acupuncture is now being used to alleviate some symptoms brought on by the powerful drugs. These treatments have been shown to boost the immune system and help fight the side effects brought on by HIV and AIDS.

Redge Norton of the San Francisco AIDS Foundation uses acupuncture, massage and nutritional therapy to combat the side effects of the powerful drugs. "It really helped to get my appetite back to normal," said Norton. "And I feel more like myself again."

Acupuncture is commonly thought of as an alternative form of therapy, although its history as a treatment for physical ailments predates the era of laboratory-produced drugs by several thousand years. Practitioners of this ancient tradition choose from a variety of treatment modalities when developing an individual treatment regimen for a patient. In addition to acupuncture, these modalities include therapeutic massage, stress reduction techniques, and the application of heat and herbs that is known as moxabustion.

A significant number of primary care providers have come to recognize that such therapies should not be thought of as alternatives to Western medicine, but rather as complementary therapies - therapies used in conjunction with, not instead of, conventional drug treatments.

Acupuncture may help relieve bloating, cramping, and appetite loss among HIV-infected people taking drug cocktails to keep the virus in check. In 2005 a study was presented at a meeting of the International AIDS Society. This study included 50 HIV-infected men and women taking HIV medications. About half had been diagnosed with full-blown AIDS.

At the start of the study, all of the participants complained that the drugs caused at least two digestive side effects: nearly 80% had gas, more than 40% had bloating, 50% had cramps, nearly 50% had appetite loss, and 10% had actually lost weight

The participants then received six weeks of acupuncture. For three weeks the acupuncture included four sites commonly associated with improvement of digestive symptoms, such as nausea, vomiting, and bowel upset. For another three weeks they received acupuncture at four sites nearby sites not noted for affecting digestive conditions.

The patients were unaware of which type of acupuncture they were receiving at any given time.

But after just three weeks of acupuncture treatments, only 60% had two or more digestive symptoms. Both sets of acupuncture points improved digestive symptoms. However, acupuncture at the sites targeting digestive symptoms was more effective in controlling loss of appetite, abdominal cramps, and bloating.

In addition, among the 20% of people who said they weren't taking their AIDS medications as directed at the start of the study, half reported improvement after acupuncture treatment. This points out, states researcher Elizabeth Sommers, research director of the AIDS Care Project/Pathways to Wellness in Boston, since they feel better after acupuncture, people are more likely to take their drugs properly, resulting in better disease control.

In this study, none of the participants complained of side effects from the acupuncture.

Pain, a frequent symptom in people with HIV disease, appears to be particularly responsive to the effects of acupuncture. While the exact mechanisms by which acupuncture relieves pain remain obscure, there is clinical evidence to show that it does work. Specifically, acupuncture has become a popular treatment for people with peripheral neuropathy, which is a common complaint of people with HIV. Neuropathy, or nerve damage, manifests as pain, tingling, or numbness in the extremities, usually the feet. After acupuncture treatments patients report less tingling and more flexibility in the joints.

Among the many attractive features of acupuncture therapy are its safety and its relatively affordable cost. Convenience is also a consideration: it is not necessary to plan one's life around acupuncture treatments, which is an additional benefit to individuals who must plan their lives around their HIV and AIDS drug therapy schedules.

Among the many attractive features of acupuncture therapy are its safety and its relatively affordable cost. Convenience is also a consideration: it is not necessary to plan one's life around acupuncture treatments, which is an additional benefit to individuals who must plan their lives around their HIV and AIDS drug therapy schedules.

http://www.pacificcollege.edu/news/blog/2014/04/26/acupuncture-ease-side-effects-aids-drugs

People With Neuropathy Are Charlie Too

 This may be a simple blog about neuropathy but today's post is about the freedom to speak out against evil - nothing more, nothing less - something we have to defend as a basic human right. The attack in Paris was an attack on our freedom to tell the truth, when the truth needs to be told. 

It's too important to ignore so forgive me if you're missing your daily neuropathy article - I'm sure you'll understand.

Dutch cartoonist Joep Bertrams

This cartoon depicts a murdered cartoonist sticking his tongue out to his killer. The text in Dutch says "immortal", referring to freedom of speech. 

Toughing it out with Neuropathy

Today's post from aidsmap.com (see link below) is a hard-hitting personal account of an HIV-patient with neuropathy. It's the sort of story that people without neuropathy may need to read but is difficult reading if you're in the same boat. It's just very close to home for many people and while it's perversely comforting to know that someone else is going through the same thing or worse, it's an uncomfortable feeling to be confronted with the 'what might be' scenario. Don't get me wrong, everyone will have the utmost sympathy for this guy and would do anything to help if they could and like in the old cliche, 'can feel his pain' but it does touch a raw nerve. It highlights how important it is for neuropathy patients to find and keep an effective support system - it's not a disease that's easy to bear alone.

Living with Peripheral Neuropathy
by Chip

I didn’t know, at first, why my feet hurt so bad. I would wake up every 90 minutes or so every night.

Because of the ‘way’ they hurt I thought they were just cold. I tried wool socks. Wore wool socks at work. (Came to find out later heat exacerbates the pain.)

Then one day, sitting in a bar reading a gay-rag advertisement for HIV meds, I saw it. PERIPHERAL NEUROPATHY. That had to be it.

Why didn’t my doctor tell me about possible side-effects I should watch for? Is there some medication that could help? Would I always deal with this pain?

My doctor confirmed the diagnosis and said that some patients deal with the pain anywhere from 6 to 18 months. He explained the reason for the way my brain was ‘sensing’ that my feet hurt. He prescribed an antidepressant that works on nerves that may eradicate the pain.

I was so hopeful! How desperately I needed a full night’s sleep! Well, the medication DID help me sleep but the pain persisted.

After two or three medication trials and a pain specialist intervention, as well as about 10 years later… I still suffer the with pain of peripheral neuropathy. Everyone has heard of a cure, something that helps, how I can deal with this pain. I’m beginning to understand now, that I have become a completely different person because of this pain. Consider for yourself the possibility of a headache or toothache for ten long years. At times I joke that the original antidepressant was prescribed to prevent me from going crazy with this pain.

Don’t doubt for a second that I haven’t considered suicide. I’m not going to make this a long philosophical discussion that has become my life (my HIV status is playing second fiddle now). Everyone listens, everyone cares, everyone hopes and prays for me, people love me, and for that I am grateful.

Someone with a physical abnormality has no way to hide so that people won’t look and wonder or show compassion. Maybe that WOULD actually be harder to deal with on a daily basis than to just be in pain with no one noticing. Maybe I’m the cry-baby now, wanting somehow to make people know about my pain. Funny thing is that when the same people who know of my condition ask "how are you doing?" and I answer "okay", I sometimes want to scream “THEY HURT AS BAD AS ALWAYS AND EVEN WORSE TODAY!”

It would be very easy (let me tell you, very VERY easy) to give up. You may want to as well if you are reading this in between medicating yourself, whether physically, mentally or spiritually. I’m still here. I don’t wanna stick around all by myself. Hang in there. Tough it out with me. Rub some dirt in it. We’ll be OK some day. If not in this world, well for sure in the next…

http://www.aidsmap.com/Living-with-peripheral-neuropathy/page/2053217/

Strategies For Living With Neuropathy Vid

In today's video from beatingneuropathy.tv (see link below) Dr. John Hayes gives some very useful advice for people living with neuropathy, chronic pain and other related diseases. He stresses the importance of having a strategic plan for getting the best out of your situation and that involves considerable input on your part, especially relating to lifestyle. Worth a watch.


Episode 49: Do YOU have a REAL Neuropathy and ChronicPain Treatment Strategy?  
Posted by John Hayes Jr Friday, March 7th, 2014

Do YOU have a REAL Neuropathy and Chronic Pain Treatment Strategy? Has anyone ever suggested an organized and focused treatment plan? Well in this video Dr John Hayes Jr talks real about what you must know to make informed care choices and Neuropathy treatment decisions!




 http://beatingneuropathy.tv/2014/03/episode-49-do-you-have-a-real-neuropathy-chronicpain-treatment-strategy/

Does Pregabalin Lyrica Really Help with Neuropathic Pain

Pregabalin or Lyrica, is one of the most frequently prescribed drugs to help with neuropathic pain. It's an epilepsy/seizure drug that has found a new lease of life in the treatment of neuropathic disorders but there are strong arguments both for and against its usefulness. Many people can't live with the side effects and many people find that it just doesn't work for them. That, set against the people for whom there is a marked improvement, makes it a difficult medication to evaluate. The fact that they're still studying it and that the first American Academy of Neurology guidelines will not emerge until April, 2012, makes you wonder why it is so widely issued by doctors and neurologists. It forms part of what is now accepted as a standard pathway through the possible options for neuropathy patients: somewhere between anti-depressants and morphine! Pregabalin/Lyrica definitely remains a viable option but it's advisable to ask every question that worries you and research as much as you can because at best, you will be suppressing symptoms and not curing them, by using a drug with known side effects. However, for many people if that takes away the pain, then it's worth it. The article comes from emaxhealth.com (see link below).

Pregabalin May Benefit Diabetic Nerve Pain
By Denise Reynolds RD on April 14, 2011

The American Academy of Neurology has issued new guidelines on the most effective treatments for diabetic nerve pain and has found that a seizure drug can treat the neuropathy and improve quality of life for patients with diabetes. The guideline was presented at the American Academy of Neurology’s Annual Meeting in Honolulu.

Diabetic Neuropathy Is Undertreated in the United States
Pregabalin, brand name Lyrica, is an oral medication used for treating pain caused by neurologic diseases as well as seizures. It is also used for treating fibromyalgia. It is believed to work by binding to calcium channels on nerves and possibly modifying the release of neurotransmitters. The US Food and Drug Administration approved pregabalin in December 2004.

Diabetic nerve pain, tingling or burning pain in the hands and feet caused by nerve damage from hyperglycemia, is estimated to affect 16% of the more than 25 million people in the United States living with diabetes. It is believed that about two out of five cases go unreported and untreated.

The recommended initial dose of pregabalin for neuropathic pain is 50 milligrams, three times a day. The dose may be increased to a maximum of 100 mg three times daily after one week. The most common side effects are dizziness, drowsiness, dry mouth, edema, blurred vision, weight gain and difficulty concentrating.

While the evidence is strong that pregabalin is effective in treating diabetic neuropathy, doctors should determine if it is appropriate for their patients on a case-by-case basis. Certain medications can interact with Lyrica, requiring careful monitoring by a physician

The American Academy of Neurology guidelines note that other seizure treatments such as gabapentin and valproate, antidepressants such as venlafaxine or duloxetine, and painkillers are probably also effective. Transcutaneous electric nerve stimulation (TENS) should also be considered as an option for treating diabetic nerve pain.

“We were pleased to see that so many of these pain treatments had high-quality studies that support their use,” said lead guideline author Vera Bril MD FRCP of the University of Toronto. “Still, it is important that more research be done to show how well these treatments can be tolerated over time since diabetic nerve pain is a chronic condition that affects a person’s quality of life and ability to function.”

The AAN guidelines will be released in 2012 and will appear in the April issue of the journal Muscle and Nerve from the American Association of Neuromuscular and Electrodiagnostic Medicine as well as the April issue of PM&R, the journal of the American Academy of Physical Medicine and Rehabilitation.

http://www.emaxhealth.com/1506/pregabalin-may-benefit-diabetic-nerve-pain