Were You Relieved When You Were Diagnosed With Nerve Damage

Today's post from themighty.com (see link below) reflects, by means of a personal story, what millions of neuropathy sufferers across the world feel before they receive their definitive diagnosis. It seems astonishing in this day and age that we have to jump through hoops of disbelief, suspicion, inaccurate evaluations and faulty diagnoses before a medical professional finally comes up with the answer but it still happens continually in 2016. Naturally, the more neuropathy hits the news, the more patients will have light bulb moments and emerge from the darkness but is the medical profession ready for it? Not by a long chalk! Not only are we prescribed the same medications that were issued 30 years ago but the time scale between symptoms and diagnosis is unforgivably long. Add on to that the general lack of expert knowledge among doctors and you have patient frustration on a massive scale. That said, it is changing and the medical profession and pharmaceutical companies are finally waking up to the problem and working on solutions but hey...it's about time! The author of this article's patent relief at being given a diagnosis is therefore perfectly understandable. Do you recognise yourself in her story? I have a feeling you will.
 

Why I'm Happy I Received Diagnoses of Neuropathy and Myopathy  
11/19/16 By Jen Hardy Contributor I write about Hereditary Neuropathies
 
Let me start by saying I do not want to be sick. I am not lazy, or trying to get attention. What I do want is a diagnosis, so medical professionals can treat my symptoms, and if possible, heal me. There are so many people who do not understand people with chronic illness and why we want a diagnosis so badly. I want to share my story so I can help other people understand how difficult it is to live with unidentified health issues.

As a young girl, I spent a lot of time during my non-school hours in bed and on the couch. My parents chalked it up to me being a lazy person, but when I would get bursts of energy, I’d be out doing all I could, and I didn’t feel lazy! In middle school P.E., I would always stop running because of sharp pain and a burning sensation in my chest. Again, I was labeled as lazy and told to work through the pain. (Twenty-five years later, we would discover I had asthma.) My parents had me in soccer and softball for several years, but I would get worn out quickly, begging to be benched after a few quarters or innings. As you see, there was a pattern. High school went on the same way, only with the emergence of back pain on top of everything else.

I started falling down in my early 20s. People just thought that was funny. “Look how clumsy she is,” they said. Everyone thought I was both lazy and clumsy. I had x-rays and all the standard blood tests, but nothing was showing up. After I had a couple of children, my energy plummeted, but after seeing a variety of doctors, and with a chart thicker than a Harry Potter book, I still had no diagnosis. The medical and family consensus was that I was fine, lazy, and maybe a little depressed. I was a little depressed; my body was betraying me and I didn’t know why. Not only that, but no one who was close to me believed what I was saying.

In my 30s, the pain became more intense. It was difficult for me to get around, and I was becoming more unsteady. My pain was mostly in my back, but slowly creeping in a little bit everywhere else too. “Where did it come from? Why was it there?” Those were my questions. What answer did I get? “You must want drugs.”

Through all of this, I would argue with anyone who told me to take so much as an aspirin. I was so anti-any-medicine that wasn’t absolutely life-saving that taking strong pain killers was out of the question. I wanted a permanent solution, not a temporary fix. Again and again and again I was asked, “Why do you want something to be wrong? Why do you keep looking for something to be wrong with you? Why can’t you just do what you’re supposed to do like everyone else?”

I was told by those close to me, “Obviously if the doctor says nothing is wrong, then nothing is wrong.” And, “I’m certainly not going to help you get things done when you are perfectly capable of doing them yourself. Stop being lazy and snap out of it!” But more symptoms kept emerging, and I just kept asking questions, and going to doctors, and not giving up. It’s not easy to keep that up when you feel miserable.

A good personal support system helps not only physically, but emotionally as well. When I was 40, I married a soldier. He not only fought for our country, but he fought for me. He went to doctors with me and explained things when I couldn’t, he helped me to remember to take my medicine when I was too tired to remember by myself, and he always had faith that we would find help and I would get better. With his help, I found a pulmonologist who discovered that I have asthma and sleep apnea. Treating those helped some of my symptoms, but there were still several things going on with my body that no one could figure out.

In my early 40s, my husband got sick with what we thought was a cancerous kidney tumor. I didn’t want to tell him that I’d fallen down the stairs twice in one week, but my sister-in-law did. He immediately sent me to the doctor, where I got an MRI of my back, and they finally found something. Ironically, they didn’t actually find it, they said it was still there! A diffuse atrophy that was found in my back seven years earlier that no one ever mentioned to me. The muscles outside of my lower spine had completely atrophied and been replaced by fat. How could this have happened? Why? We didn’t know, but it explained the pain, weakness, and falling I’d been experiencing for years.

I saw several neurologists. My second one actually told me I had too many symptoms and had to pare down my symptom list for him to be able to help me. “Which symptoms are the right ones?” I cried, but he didn’t know, so it was time to find another neurologist. It is so important for patients to keep searching until they find a doctor who listens to them. If I had listened to the first doctors, I might not be here today. I was misdiagnosed and put through risky treatments that didn’t help, and even a major surgery I didn’t need.

I finally went to a new doctor, my eighth neurologist, who sent me to another neurologist 300 miles away at a medical center that specializes in rare neuromuscular diseases. Finally, the wrong diagnosis was officially ruled out. We also found out answers to the health questions I’d had for years. I don’t have one neuromuscular disease, I have two: neuropathy and myopathy. That’s why I had too many symptoms. That’s why none of it made sense. That’s why no one believed that I was telling the truth. It seemed like too much. Like I was making it up.

We now have names for four out of five of my main diseases: asthma, arthritis, sensory neuropathy, and sleep apnea. The fifth is idiopathic myopathy for now. That means I have a muscle wasting disease and no one knows the cause. I’ve had medical testing, the likes of which I wouldn’t wish on my worst enemy, to get to the root of it, but we’re still waiting for the final results. If they’re negative, it means my disease is so rare, it hasn’t even been discovered yet. But my ninth neurologist has done the testing necessary to know I have a serious disease. My body is like a snowman in February; the thaw is coming, we don’t know when, and little bits of me melt away as we wait.

I don’t want to be sick. I don’t want to have an illness. But I do. And because I have fought to find someone to believe in and help me, I have found answers and now I have help managing my pain and fatigue. I still don’t know what’s causing my muscles to atrophy, but in July 2016 I found out that I have neuropathy and myopathy. That’s where most of my system-wide pain is coming from, that’s why I fall, and the muscles that are left work so hard I get fatigued doing the most mundane things.

I’m very happy to finally have a name for what’s been happening to my body for years. I’m not happy because I’m chronically ill. No one wants to be chronically ill, but we do want to be helped. And that’s what a diagnosis does. It helps us get the treatment we need, and live happier, more productive lives.

https://themighty.com/2016/11/ive-been-diagnosed-with-neuropathy-and-myopathy-so-why-am-i-so-happy/

HEALING THE HEART WITH FAT

Too much dietary fat is bad for the heart, but the right kind of fat keeps the heart healthy, according to a paper published in The Journal of Experimental Medicine.

Unsaturated dietary fatty acids, such as eicosapentaenoic acid (EPA), are known to protect against cardiovascular diseases. However, the mechanism and the specific fat metabolites responsible for this protection were unknown.

A group of Japanese scientists now show that mice engineered to produce their own EPA are protected against heart disease and have improved cardiac function. One particular EPA metabolite, called 18-hydroxyeicosapentaenoic acid (18-HEPE), was required for this protection.

18-HEPE was produced by immune cells called macrophages, which dampened inflammation and fibrosis in the heart. Treatment with 18-HEPE confirmed its heart-protective effects.

A diet enriched in 18-HEPE might thus help prevent heart failure in patients with cardiovascular diseases.

Difficulty Living With HIV And Neuropathy A Personal Account

Today's post from healthygaylifestyles.com (see link below) is a powerful personal account of living with HIV and AIDS (including severe neuropathy) in 2013. Not everybody sails through the rest of their lives on one HIV pill per day and very many people still have problems from side effects, or damage from earlier medication regimes, or from secondary conditions brought about by the virus itself. This account is a reminder that even with neuropathy in your life, you may still count yourself lucky that things are not a whole lot worse. Well worth a read.

Anatomy of An Illness (Part 1)
by Roger Goodman M.Div. Published on August 1st, 2013 | by Healthy Gay Lifestyles

I have not felt at all well for the last three weeks. I am running a low-grade fever of 99.5-100.2. My normal temperature is 97.1, so going up to 99.5 – 100.2 is , for me, running a fever. I am sweating all over my body with a permanent sheen of light sweat covering every inch of me. Along with the sweating I also have chills. I am also itching like crazy all over my body but the worst part is on the top of my hands and around the tops of my ears on my head. I just feel lousy and I don’t know what is going on with my body so I am a little freaked out. I always get a little freaked out when I begin to get sick, because I don’t know what it is going to lead to. The last time I felt sick it ended up to be severe sepsis that required a stay in the ICU. I don’t want that to happen again. I just wish something would break, either get sicker and need to be hospitalized or get completely well at home and not have the low-grade fever, headache, weakness in my legs, severe body pain, and itchiness that is part of what’s bothering me. I am so depressed and I don’t know if it is because I feel sick and cannot sleep during the night, or if I cannot sleep during the night, because I am depressed. I don’t know which is the catalyst for which.

Living with AIDS is a terrible thing. The consensus is that AIDS is over, that the epidemic is a thing of the past, but I and my friends who live with the disease know better. We get very sick from odd infections that always seem to need hospitalization. This never happened before I was diagnosed from my first opportunistic infection in 1995-96 when I had Herpes Simplex Virus Encephalopathy and went into a ten-day coma and died, but from which I came back to life. I slipped into the coma on Christmas Eve, 1995 and woke up ten days later in January 1996. I came back from death because I had much transformational work to do with the Queer community. My book and my film are important parts of that work. I completely missed Christmas and New Year’s Eve that year (my chosen family and I celebrated Christmas after I woke up from death and was back to a regular room in Unit 371 at Advocate Illinois Masonic Medical Center, the incredible AIDS Unit during the 80′s and 90′s which became my second address for seven years). For those years I fought for my life against deadly infections, including Kaposi’s Sarcoma for which I received radiation treatments and chemotherapy for three years. That all ended in 2002, but since then I have been hospitalized probably twelve times with various pneumonias, bouts of severe bronchitis, and COPD as well as general, critical bacterial infections. These come and go, but there is the ever-present Parkinsonism that fells me on a daily basis. My neurologist says I have it because of the trauma to my brain from the Encephalopathy. So, I take medication and use marijuana medicinally to stop the tremors, the rigidity in my joints, and to improve my cognition, but I still have a hard time using eating utensils and writing. My handwriting is illegible, so I type everything I have to write and when that is impossible I use Dragon for Mac, a voice recognition software, to speak what I have to write.

The pain in my feet from the peripheral neuropathy is excruciating today. The surfaces of my lower legs and feet are completely numb to the touch and simultaneously feeling that I have 1000 wasps stinging my feet all at the same time. It is like having searing hot coals sewn into my feet and people don’t understand why I have such a hard time walking. I don’t yet need to use a walker, but I cannot walk without my cane and CROW Walker for my Charcot Foot (Google this if you like-it is a most amazing device) and it allows me to walk. Without it I cannot go out. I’m so tired of hearing that AIDS is over now that the miraculous medications are available. That’s just a lie. It’s a way for people to feel safe in the midst of this scourge which still hangs over the face of the earth. Plus, the side effects (the effects, really) of the HIV meds are truly terrible. The medications are highly toxic. They are a form of chemotherapy, except they are taken orally rather than being infused intravenously. I’m in recovery from drug addiction and have been clean from drugs for the last 8 1/2 years since February 5, 2005, but now that medical marijuana is going to be legal in Illinois I don’t have to worry about getting busted. Todd, my loving and brilliant physician, can prescribe it for me. I don’t believe that using medical marijuana in any way affects my recovery program nor does it change my clean date. I will use marijuana purely as a pain reliever of physical body pain and to loosen my joints, not emotional pain or spiritual pain and certainly not recreationally, just the pain from the neuropathy and the Parkinsonism and the general overall pain in my body from having lived with this virus for 31 years.

My neurologist says that my loss of short-term memory, me acting out my dreams, the nightmares that are filled with darkness and terror when I can manage to sleep at night, carrying on conversations with phantom people just as I am falling asleep, as well as the loss of balance, confusion, the inability to hold a fork to balance my food and bring it to my mouth (hence I use a spoon for most things I eat), my depression, the rigidity and pain in my joints especially in my knees which is an insidious source of pain, my difficulty balancing on my feet, the weakness in my legs, the incessant fatigue and consequent incessant sleeping, and the terrible body pain are all consequences of the Parkinsonism. Perhaps using marijuana will alleviate some of the symptoms. It is powerful medicine. My brother is a licensed marijuana grower in New Mexico and he says that he has seen miraculous recovery from various illnesses in his patients including some skin cancers when applied as a cannabis oil.

I’m taking a break now. I’m tired and need to take a nap.

After a break in writing this, I am back. The break took longer than expected. I have to say that my wish above to either get sicker and need to be hospitalized in order to heal or get better at home came true, except it was the former wish that came true. I was going to take a nap, but instead ended up in the emergency room of the hospital I use. I was just discharged today having been admitted for an extremely elevated white count in my blood indicating an infection somewhere in my body (yet another one!!) and that has been what has been freaking me out this past three weeks . I saw Todd, my PCP (Primary Care Physician) in the hospital today and he discharged me because my white count issue has been resolved with IV Levoquin and he was afraid of super infection just from being in the hospital. I have to now take it orally for the next seven days. I was discharged this evening. I am so glad to be home with my dear Jerry and our children (our cats Murfee and Gizmo). Except for the intense fatigue, I feel so much better. The body pain from the infection (not counting the pain from the Parkinsonism and the peripheral neuropathy) is much alleviated and I can think clearly again.

This has been an extremely difficult year regarding my health: two pneumonia’s, two bouts of sepsis the first of which required a stay in the ICU for four days because I was so close to death and the second coming within twenty-four hours of being discharged from the first infection which was completely cured, removal of a ureteral stone which required two surgeries, excision of a squamous cell carcinoma on my scalp, a TURP (prostate surgery), and now this generalized infection. The TURP was not completely successful, however. I still have bladder pain when I urinate. I am seeing my urologist on Monday and I will see what he has to say. I hope I don’t have to go through another TURP. The consequences of the first TURP are not as devastating as I had anticipated. I can still have an orgasm (what a relief!), although it is dry. The sensations are there and the sex is great with Jerry, but there is no ejaculation. My entire body goes into intense orgasmic convulsions and my mind goes somewhere else completely. The depth of the spiritual experience with Jerry is complete but there is no ejaculation. Even without that, I experience “le petit mort” powerfully. Interesting, very.

Even with all these things that I have to deal with on a daily basis, my life is wonderful, creative, and productive. I am blessed to be alive so that I can carry on my work of writing and film making and, of course, to keep experiencing and living in my relationship with Jerry. I hope I have at least another twenty years of life and that Jerry does as well. We have much life to live fully and much loving to do. I am so grateful for my life. I live with my mortality every day, so each day is precious to me and Jerry is the center. Jerry is my rock. I am more than content with life. I have an incredible serenity and peace even with all the physical/psychological challenges I face on a daily basis. This is from my 12-Step recovery work. I am blessed, indeed.

___________________________________________

Roger Goodman, M. Mus., M. Div. attended Oberlin College during the tumultuous 1960s during the Civil Rights Movement and protests over the War in Vietnam. He was present at the watershed Stonewall Rebellion in NYC in June, 1969. He had an international career as a concert harpsichordist, teacher, and recording artist. He was on the faculty of The New School for Social Research in New York City, the American Conservatory of Music in Chicago, and the School of Music at DePaul University as Director of the Baroque Program, a post he held for 23 years. In 2009, Roger left the world of music to become a filmmaker. He is Executive Director of his 501(c)(3) corporation Tribal Elder Productions, NFP which he formed in 2010 and is the screen writer, and director for his documentary film “From the Ashes Risen” for which he is currently seeking funding through grants and the private sector. His new book is entitled, Thoughts of a Tribal Elder: One Queerman’s Journey From the Ashes Risen. Roger has been HIV+ since the early 1980′s and was diagnosed with full-blown AIDS in 1995 when he died during a lengthy coma, but, miraculously. he came back from death. He says the reason he came back was because he had important transformational work to do in the world for Queer people everywhere. His speaking and workshops on college and university campuses, his teaching/performing, his film, and his book are the fruits of that extraordinary journey with the Death Crone. A sex and drug addict in 12-Step Recovery, he has been clean from all drugs and sexual acting out for 8 years, since 2005. He is thoroughly grateful to his Higher Power that his life was given back to him so that he could do the work he has been given to do with enthusiasm, humility, and unending joy. Websites: www.queerwitness.com and www.tribalelderproductions.org.

http://healthygaylifestyles.com/anatomy-of-an-illness-part-1/

TACKLING LIVER INJURY WITH NEW DRUG

A new drug spurs liver regeneration after surgery, according to a paper published in The Journal of Experimental Medicine.

Liver cancer often results in a loss of blood flow and thus oxygen and nutrients to the liver tissue, resulting in deteriorating liver function. Although the diseased part of the liver can often be surgically removed, the sudden restoration of blood flow to the remaining liver tissue can trigger inflammation -- a process known as ischemia reperfusion injury (IRI). IRI results in part from the deposition of immune proteins called complement on the surface of liver cells, causing them to die and thus impairing liver regeneration.

Complement inhibitors effectively dampen IRI, but the benefits of this approach come at a cost, as certain complement proteins are also required for liver tissue to regrow. A group of scientists at the Medical University of South Carolina now show that a novel complement inhibitor reduces complement-mediated liver cell death and actually stimulates post-surgery liver regrowth in mice. The novel inhibitor limited the deposition of complement proteins and promoted the division of new liver cells. Even after removal of as much as 90% of the liver, treatment increased survival from 0% in untreated animals to an impressive 70%.

The selectivity of this novel complement inhibitor, and its unexpected ability to promote liver regeneration, suggests that it might represent a new treatment strategy for a variety of liver injuries in humans.

Take Care Of Your Toes And Feet With Neuropathy

Today's short post from journal.diabetes.org (see link below) contains advice you really need to follow if you have neuropathy in your feet. Many articles on this subject refer to diabetic neuropathy but as we all know by now, diabetes is just one of the many forms of neuropathy that can cause you to either lose feeling, or suffer extreme feeling in your feet. Listening to a friend's recent story of having painful and infected toenail wounds from clipping too close, led me to publishing this article. It's a very common problem but one that's easy to forget. Read carefully - with the Winter coming on in the northern hemisphere, care of our feet is especially important.

How To Avoid Foot Problems If You Have Neuropathy
Ingrid Kruse, DPM CLINICAL DIABETES VOL. 18 NO. 3 Summer 2000

Inspect Your Feet Daily.
Look at your feet every day. Check for blisters, cuts, scratches, or cracks in the skin (commonly in the heel). Remember to check between your toes. A mirror can help you see the bottom of your feet, or you can ask a family member or friend to help you.

If you experience flu-like symptoms or increased blood glucose levels, be sure to check your feet. They may provide the only warning signals you will receive when a foot infection is present.

Make the daily foot inspection a regular part of your morning or evening routine, just like brushing your teeth. This simple task has kept many people with diabetes from losing their feet by helping them identify problems early on.

Wear Proper Shoes and Socks
All shoes should be comfortable at the time of purchase. Choose a shoe with a soft leather upper, or try athletic shoes for everyday wear. Do not try to "break in" uncomfortable shoes. Buy your shoes at the end of the day when your feet tend to be more swollen than in the morning.

The first time you wear your shoes, wear them only for 1 hour and only around the house. Take them off and inspect your feet for blisters or red areas. Slowly increase the wearing time, giving yourself about a week before you wear a new pair all day.

Do not wear sandals with thongs between the toes because they can rub deep gashes.

Never wear shoes without socks. Socks should be changed daily. Avoid wearing socks with holes or those that have been mended. In sporting good stores, you can find socks that have extra padding under the heel and ball of the foot for better shock-absorption.

Do not forget to check your shoes before you put them on by sliding your hand into them. Feel for nail-points and foreign objects such as keys, small toys, bird seed, or pebbles.

Practice Proper Foot Hygiene.
Wash your feet daily with mild soap, and dry them carefully, especially between the toes. Apply a moisturizing cream everywhere except between the toes. Too much moisture between toes will encourage the growth of microorganisms that can cause infection.

Trim your nails straight across with a slightly rounded edge. If you have trouble seeing, have neuropathy, or have difficulty trimming your nails yourself (because of thick fungus on your nails, for example), see a podiatrist. Avoid all types of "bathroom surgery," such as trying to fix an ingrown nail yourself or trimming your own corns and calluses. The results can be disastrous.

Do not walk barefoot—even in the house—because of danger from stepping on pins, needles, tacks, glass, or other items on the floor.

Be Mindful of Other Dangers to Your Feet.
Neuropathy can affect the set of nerves that detect heat. When these nerves are damaged, you cannot always tell when something is too hot, making burn injuries more likely. Always check bath water with your hands, or use a thermometer if you also have neuropathy in your hands.

Other heat-related problems that could cause serious burns include walking on hot pavement in the summer, using heating pads or hot water bottles to warm your feet, or putting your feet too close to radiators or space heaters in the winter.

If your feet feel cold at night, wear a pair of socks to bed. This is most likely due to neuropathy and not to poor circulation. Neuropathy can cause hot or cold sensations in your feet.

Permission is granted to reproduce this material for nonprofit educational purposes. Written permission is required for all other purposes.

http://journal.diabetes.org/clinicaldiabetes/V18N32000/pg119.htm

Vast Numbers Of Americans Live With Daily Chronic Pain

Today's post from drugs.com (see link below) looks at the huge numbers of Americans living with chronic pain on a daily basis. From this, you can also assume that similar proportions apply to many other first world regions and this highlights how ironic it is that nations with the best health services and facilities still have such a high proportion of chronic pain sufferers. A possible cause of this could be put down to lifestyle choices but most neuropathy patients will agree that their pain is a secondary result of another disease or condition. The article talks about the majority of these 25 million having back and joint pain but given that we know that 20 million Americans are living with neuropathy, they will all be experiencing some form of pain, or uncomfortable symptoms. Makes you wonder what the cross-over statistics really mean. Nevertheless, 25 million American chronic pain sufferers means 25 million people receiving medication of one sort or another and over a long period of time. The problem is obvious!

25 Million U.S. Adults Struggle With Daily Pain 
TUESDAY Aug. 18, 2015, 2015

 Pain is widespread in much of America, with more than 25 million adults -- 11 percent -- suffering on a daily basis, a new national survey reveals.

And approximately 14 million adults -- roughly 6.4 percent -- experience severe pain, which can be associated with poorer health and disability, researchers found.

Other national studies of chronic pain have yielded similar results, said study author Richard Nahin, an epidemiologist with the National Center for Complementary and Integrative Health at the U.S. National Institutes of Health (NIH).

"What makes this study unique is that I also looked at how often adults have mild pain," he said.

Nahin found that about 54 million adults -- nearly one-quarter -- reported "mild," but not incapacitating, pain.

Whether pain is increasing nationally is difficult to say, Nahin said. But the good news is that roughly half of those living with severe pain indicated in the survey that they were nevertheless in good or excellent physical health overall.

And even better news: The poll found that 44 percent of American adults say their lives are pain-free.

The estimates are based on the responses of nearly 9,000 adults who took part in the 2012 National Health Interview Survey. The poll is conducted annually by the U.S. Centers for Disease Control and Prevention.

The NIH says more Americans are affected by pain overall than are touched by diabetes, heart disease and cancer combined. Also, chronic pain is the leading cause for long-term disability.

Nahin said joint pain and back pain are the most common sources of discomfort.

"About one-third of all adults have joint pain in a given year, and a bit more than a quarter of all adults have back pain," he said.

For the study, published in the August issue of the Journal of Pain, Nahin asked survey participants about the frequency and intensity of pain experienced in the preceding three months. He coded reported pain into five categories of severity, based on persistence and the degree to which it was "bothersome."

About one in 10 adults experiences "a lot" of pain, researchers found, and nearly 56 percent reported some pain in the preceding three months.

Overall, the researchers found that whites, women, and the elderly were more likely than others to report relatively severe pain.

The survey also found that adults experiencing the most severe levels of pain are likely to be more disabled, in worse overall health, and in need of more health care, compared with people dealing with relatively mild pain.

For those looking to mitigate chronic pain, Nahin said various health approaches can be tried with -- or in place of -- prescription painkillers. Many people turn to yoga, massage and meditation to relieve pain, for example.

"Evidence-based clinical practice guidelines from the American College of Physicians and the American Pain Society found good evidence that cognitive behavioral therapy, exercise, spinal manipulation and interdisciplinary rehabilitation are all moderately effective for chronic or subacute [lasting more than four weeks] low back pain," Nahin noted.

In addition, American College of Rheumatology guidelines advocate tai chi, acupuncture and/or walking aids for knee arthritis, he said.

People in search of a pain plan will often need to mix it up, said Dr. Edward Michna, director of the Pain Trials Center at Brigham and Women's Hospital in Boston, and a board member of the American Pain Society.

"Certainly not all pain requires opioids," Michna said, referring to narcotic medications such as hydrocodone (Vicodin) and oxycodone (OxyContin, Percocet).

"They have a role to play, of course," he added. "But what is needed is an individualization of care and a multidisciplinary approach that might include physical therapy, mind-body therapy, alternative medicines of various kinds, and other types of nonnarcotic medications."

The best treatment "will usually be a combination of these things. There is no one right answer," said Michna, who was not involved in the study.

More information
There's more on pain management at the American Chronic Pain Association.

Posted: August 2015

http://www.drugs.com/news/25-million-u-s-adults-struggle-daily-pain-57937.html

Living with Peripheral Neuropathy Part 1

Part One of a two part, American TV programme about living with neuropathy (Part Two tomorrow).
It talks mainly about neuropathy as a result of diabetes and every few minutes you feel like saying, 'What about us?' but that said both videos are interesting because they look into the basics of neuropathy presented by both doctors and patients. It does us no harm whatsoever to learn how diabetics are affected by neuropathy, if only to understand the differences with HIV-related neuropathy. You also get to hear personal experiences of people affected by different forms of neuropathy and compare their situations to your own.

It was posted on a neuropathy support network blog on July 5th, 2011 by LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS (see full link below)and this is what he said:

PBS – WMHT – HEALTH LINK, ALBANY, NEW YORK produced a video “Living with Peripheral Neuropathy”. This is the best video I have ever seen on Peripheral Neuropathy as Dr. James Wymer, MD, PhD and Neurologist from Albany Medical College shares insights into the many issues surrounding Peripheral Neuropathy. He is joined by Dr. Robert Busch, MD, Endocrinologist and a panel of Peripheral Neuropathy patients from the local Albany Support Group and by Peripheral Neuropathy patients who called into the panel discussion. What makes this video of great value is the greater depth of insight and the seriousness given to the epidemic of Peripheral Neuropathy as a major health issue. Discussed are the facts, types, causes, symptoms of Peripheral Neuropathy beyond diabetes while addressing this major cause. The critical point of the video is the FACT that the patient MUST seek to find the cause of their Peripheral Neuropathy, as this is the only way of addressing the disease beyond treatment of symptoms and/or pain to prevent severe disability. A must see at any Neuropathy Support Group meeting.

Watch the full episode. See more Health Link.

http://neuropathysupportnetwork.org/blog/category/peripheral-neuropathy/

Can Topical Agents Help With Neuropathy

Today's post from diabeticconnect.com (see link below) talks about topical pain relief, which for many neuropathy patients, is a desirable alternative to pills, although it has to be said that the ingredients of topical creams are often the same as some pill alternatives. It all depends on your history of neuropathy really and where it affects you most on your body. What's worked and what's failed and whether your doctor will offer the option of topical creams or not. For some, the medications that are absorbed through the skin give more relief, if only because they avoid stomach problems; while for others they just feel better and give you the idea that your pain is being tackled at source so to speak. The point is that if we're guinea pigs anyway (as far as neuropathy medications go) and we're working through lists to find that one thing that works best for us, why not try topical creams. That said, medications such as capsaicin have to be applied very carefully and if you're forced to use stronger agents like fentanyl patches, you need to do it under supervision - just because it's a cream doesn't make it any less powerful. Apart from that, the possibility of side effects still exists with topical agents. Talk it over with your doctor and do your own research and then make a decision based on what works best for you.

Topical Pain Agents for Pain Relief  By Lana Barhum
  
Learn your topical treatment options to manage painful diabetic neuropathy.
 
Lana Barhum is a legal assistant, patient advocate, freelance writer, blogger, and single parent. She has lived with rheumatoid arthritis and fibromyalgia since 2008 and uses her experiences to share expert advice on living successfully with chronic illness.

When you’re experiencing pain in your joints and muscles, topical pain relievers are a good alternative for pain management. These medications are delivered through a variety of dosage forms, including patches, gels, lotions, creams, sprays, and ointments. Topical agents have been used for decades to help prevent and treat a wide variety of health conditions, including pain from arthritis, diabetes, and other chronic conditions.

Topical pain medications are absorbed through the skin and are best for relieving joint and muscle pain close to the skin's surface, including the hands, elbows, knees, and feet. If you are reluctant to take pills, you may opt for an over-the-counter cream or patch. You could also have your doctor prescribe a stronger topical medication.

So, what are your options? And will they work to manage your pain?

Non-steroidal anti-inflammatory agents

Diclofenac is a topical non-steroidal anti-inflammatory medication available for topical pain management. Diclofenac is available in both patch and solution/gel formulas. The patch (Flector Patch) was first approved by the FDA in 1998 and can be used for the treatment of sprains and strains, but the solution/gel (Voltaren Gel) was designed for arthritis pain. Diclofenac works by reducing substances that cause inflammation and pain in the body. It is only available as a prescription and carries the same risk as other non-steroidal anti-inflammatory drugs (NSAIDs). 

Topical anesthetics

Topical anesthetics are local anesthetics that are used to numb the surface of a body part. They are available in creams, ointments, lotions, and sprays. Transdermal patches that contain lidocaine can offer chronic pain relief but are only available with a prescription. The lidocaine transdermal patch (Lidoderm) works by stopping the nerves from sending pain signals to the brain. You should only use one patch a day. Using too many patches or wearing a patch for too long may result in overdose, in which too much lidocaine is absorbed into the blood. In case of an overdose, discontinue use and call 911. 

Counterirritants

Counterirritants contain substances that create a hot or cold sensation in one location to temporarily lessen pain and inflammation. Counterirritants are generally non-prescription and available for topical use to manage muscle pain. Counterirritants contain capsaicin, methyl salicylate, menthol, and/or camphor. Capasagel, Benjay, Icy Hot, Biofreeze, and Tiger Balm are all brand-name topical pain agents containing one or more of these ingredients, but there are other brands including generics. These products are intended for short-term use of mild pain. Use of heat with these products should be avoided.

Narcotic analgesics

The FDA has only approved two narcotic analgesics for chronic pain. Fentanyl patches have been around since the 1990s and buprenorphine patches were approved in 2010. Both of these medications carry a high risk for abuse and misuse. The Fentanyl patch is usually prescribed to patients who are dependent on opioids (medications that reduce the intensity of pain signals to the brain) and require continuous opioid treatment. Buprenorphine patches are usually given to those who require long-term chronic pain management.
Treatment considerations

Topical medications are available in a variety of dosage formulas and more are being researched to improve pain management. Not everyone will experience good pain relief from using topical pain agents.

Here is what you can do to get the greatest effect from using these medications:

• Follow usage instructions carefully.

• Wash your hands before applying them.

• Do not apply patches, creams, gels, sprays, or lotions to damaged skin.

• Never use topical pain agents with heating pads or tight bandages.

• Do not use non-prescription topical pain agents for more than seven days.

• Monitor yourself for signs of toxicity (tinnitus, nausea, vomiting). Products containing methyl salicylate can absorb into the bloodstream.

• If you are allergic to aspirin or take blood-thinning medicines, check with your doctor before taking topical pain agents containing methyl salicylate.

http://www.diabeticconnect.com/diabetes-information-articles/general/1883-topical-pain-agents-for-pain-relief

SCIENTISTS GENERATE FIRST HUMAN TISSUE IN L AB WITH STEM CELLS

Scientists used pluripotent stem cells to generate functional, three-dimensional human stomach tissue in a laboratory -- creating an unprecedented tool for researching the development and diseases of an organ central to several public health crises, ranging from cancer to diabetes.

Scientists at Cincinnati Children's Hospital Medical Center report Oct. 29 in Nature they used human pluripotent stem cells -- which can become any cell type in the body -- to grow a miniature version of the stomach. In collaboration with researchers at the University of Cincinnati College of Medicine, they used laboratory generated mini-stomachs (called gastric organoids) to study infection by H. pylori bacteria, a major cause of peptic ulcer disease and stomach cancer.

This first-time molecular generation of 3D human gastric organoids (hGOs) presents new opportunities for drug discovery, modeling early stages of stomach cancer and studying some of the underpinnings of obesity related diabetes, according to Jim Wells, PhD, principal investigator and a scientist in the divisions of Developmental Biology and Endocrinology at Cincinnati Children's.

It also is the first time researchers have produced 3D human embryonic foregut -- a promising starting point for generating other foregut organ tissues like the lungs and pancreas, he said.

"Until this study, no one had generated gastric cells from human pluripotent stem cells (hPSCs)," Wells said. "In addition, we discovered how to promote formation of three-dimensional gastric tissue with complex architecture and cellular composition."

This is important because differences between species in the embryonic development and architecture of the adult stomach make mouse models less than optimal for studying human stomach development and disease, Wells added.

Researchers can use human gastric organoids as a new discovery tool to help unlock other secrets of the stomach, such as identifying biochemical processes in the gut that allow gastric-bypass patients to become diabetes-free soon after surgery before losing significant weight. Obesity fueled diabetes and metabolic syndrome are an exploding public health epidemic. Until now, a major challenge to addressing these and other medical conditions involving the stomach has been a relative lack of reliable laboratory modeling systems to accurately simulate human biology, Wells explained.

The key to growing human gastric organoids was to identify the steps involved in normal stomach formation during embryonic development. By manipulating these normal processes in a petri dish, the scientists were able to coax pluripotent stem cells toward becoming stomach. Over the course of a month, these steps resulted in the formation of 3D human gastric organoids that were about 3mm (1/10th of an inch) in diameter. Wells and his colleagues also used this approach to identify what drives normal stomach formation in humans with the goal of understanding what goes wrong when the stomach does not form correctly.

Along with study first author Kyle McCracken, an MD/PhD graduate student working in Wells' laboratory, and Yana Zavros, PhD, a researcher at UC's Department of Molecular and Cellular Physiology, the authors report they were impressed by how rapidly H. pylori bacteria infected stomach epithelial tissues.

Within 24 hours, the bacteria had triggered biochemical changes to the organ, according to McCracken. The human gastric organoids faithfully mimicked the early stages of gastric disease caused by the bacteria, including the activation of a cancer gene called c-Met and the rapid spread of infection in epithelial tissues.

Another significant part of the team's challenge has been the relative lack of previous research literature on how the human stomach develops, the authors said. Wells said the scientists had to use a combination of published work, as well as studies from his own lab, to answer a number of basic developmental questions about how the stomach forms. Over the course of two years, this approach of experimenting with different factors to drive the formation of the stomach eventually resulted in the formation of 3D human gastric tissues in the petri dish.

Wells emphasized importance of basic research for the eventual success of this project, adding, "This milestone would not have been possible if it hadn't been for previous studies from many other basic researchers on understanding embryonic organ development."

The Impact of Fluctuating Symptoms on People with HIV

One of the problems about neuropathy is that in the beginning, the symptoms can fluctuate. You can have periods with relatively few problems and other times where the neuropathy is clearly a part of your life. The same applies for many people in general with HIV, where neuropathy may only be just one of the health problems they have to live with. Today's post talks about the findings of a survey by the National Aids Trust and comes from aidsmap.com (see link below). The survey found that these fluctuating symptoms can have a significant effect on people's working lives as well as their mental state at any given time. The recommendation is that more studies need to be done.

Fluctuating symptoms have major impact on quality of life and fitness to work, survey finds
Gus Cairns:Published: 07 September 2011

Common but non-specific symptoms of uncertain cause can dominate the day-to-day life of some people with HIV, a survey by the National AIDS Trust has found. In many cases symptoms such as fatigue, insomnia, depression, diarrhoea and neuropathy make it hard to work and perform other daily activities, the report of the survey finds.

The survey also found a significant degree of overlap between symptoms; generally, if people had one symptom, more than two-thirds of them were likely to have at least one other. One other finding was that the majority of respondents found that the symptoms were not only fluctuating, but were also completely unpredictable. This made planned activities, both at work and socially, difficult. About 60% of respondents were employed.

This study is a pilot survey of an independent working group brought together to review the Work Capability Assessment (WCA), the medical procedure under which claimants are assessed for Employment and Support Allowance. The WCA had been criticised, especially in an independent review conducted by occupational health expert Professor Malcolm Harrington, for being inflexible and for not being designed to accommodate illnesses characterised by fluctuating symptoms. See www.aidsmap.com/Whats-happening-to-benefits/page/1793223/ for more on the WCA and the Harrington Report.

Survey results in detail

The NAT study asked people with HIV to complete an online survey about their experience, during the previous six months, of five symptoms commonly associated with HIV: fatigue, anxiety or depression, insomnia, gastro-intestinal problems and neuropathy (nerve pain). There was space to mention other symptoms too.

It is not surprising that in a study inviting people to self-report, the majority of the 265 respondents had at least one of the symptoms on the list. The most common was fatigue, suffered by 57%, followed by depression or anxiety (55%), gastro-intestinal (GI) problems (48%), insomnia (46%) and neuropathy (33%).

More significant was the fact that more people experienced these symptoms as fluctuating rather than constant. Respondents described conditions as ‘constant’ with frequencies ranging from about 38% in insomnia to 24% in the case of GI problems, but as ‘varying over time’ with frequencies ranging from 53% in fatigue to 31% with neuropathy.

Fatigue was mentioned as a particularly common and troubling symptom. Very few respondents could usually predict when fatigue would hit them. One commented that “When I have it I am quite incapacitated and have no choice but to limit, stop or cancel plans to do things.” Another said “it is always there, lurking...if I do anything for more than an hour it begins to kick in.” One respondent managed to hold down a job but always required a nap of one to two hours immediately after coming home. Although 40% of respondents thought a combination of HIV and HIV medications caused their fatigue, 30% said they really had ‘no idea’ what caused it.

Depression and anxiety were nearly as common as fatigue, though respondents did not say they affected work so much. The main feature of these were their frequency: 90% of respondents said they had experienced either or both at some point in the last month. Given that a third of respondents said that bouts of depression or anxiety lasted more than a week at a time, many people must be living with severely disordered mood a lot of the time.

Diarrhoea, nausea and other GI problems were the symptoms most likely to be linked in people’s minds to HIV treatment. Thirty per cent of respondents thought these were the exclusive cause of their problems and 45% thought HIV and HIV treatments were both to blame. The frequency of bouts of diarrhoea varied from once to more than five times a month.

Insomnia and poor sleep, especially chronic, not only impacts on quality of life: it is a cause of significant physical and psychological illness. Although this has been associated with HIV drugs, especially efavirenz, 45% of respondents did not know why their sleep was so poor. Sleeplessness was very unpredictable – people would be fine one night and not the next. Forty-three per cent said having problems sleeping could last for more than a week. When insomnia is this prolonged, memory, mood and cognitive function can be severely affected. One respondent said sleep problems meant “I am unable to focus on my work, feeling like I have jet lag.”

Neuropathy (nerve pain) was the least-experienced of the conditions but was still suffered by a third of respondents. About equal numbers of people attributed it to HIV itself and to HIV drugs. In some cases the pain of neuropathy was constant – one person said his feet were always sore and this prevented standing or walking for more than 15 minutes. But the majority said that while some symptoms such as numbness were always there others, such as stabbing pains, were unpredictable and often severe.

Most respondents suffered from multiple symptoms: for instance, of those with depression or anxiety, 75% also had fatigue and 57% insomnia; of those with neuropathy, 61% had fatigue and 68% GI problems.

About 40% of respondents were unemployed, with a higher proportion among those reporting GI problems or fluctuating neuropathy. There was a generally positive attitude to work, with one respondent happy to have just started a job after 18 months of unemployment – “I am knackered but happy to be working,” s/he said.

In other cases however it was clear that fluctuating symptoms were significantly affecting people’s ability or willingness to work. One question asked “on how many occasions in the past four weeks have your symptoms significantly affected your ability to work”? A quarter of people with fatigue, 20% with neuropathy, and about 15% of those with depression and GI problems reported that this had happened more than five times in the past four weeks.

One respondent asked: “How do you work round this kind of thing unless you work for yourself or for an extremely understanding employer?”

Conclusions and recommendations

NAT concludes that the responses to their survey reveal that fluctuating symptoms are a cause of real morbidity and distress to people living with HIV and place significant barriers to work. They add that the variation and unpredictability of symptoms was often as much of a problem as the symptoms themselves.

Because the symptoms are fluctuating, ESAs may not capture them if the person is having a ‘good day’, but there are other methods of assessment, such as asking people to keep a symptom diary.

NAT recommends that more research needs to be undertaken into these common, fluctuating symptoms and that HIV organisations should raise awareness amongst employers, and with people with HIV themselves, about the importance of making reasonable adjustments at work to enable people with HIV to continue in employment.

In terms of the ESA itself, NAT recommends that ESAs need to take into account “the full range of barriers fluctuating symptoms present to participation in work and other daily activities,” including their unpredictability and the fact that they come in combination.

“Assessment should consider the impact of fluctuation and the cumulative impact of multiple, lower-level symptoms on people living with HIV,” they comment.

http://aidsmap.com/Fluctuating-symptoms-have-major-impact-on-quality-of-life-and-fitness-to-work-survey-finds/page/2066782/

Celebs With Neuropathy Hard To Find

Finding well-known people who also have neuropathy is like searching for the proverbial needle in the haystack. Today's extract from a neurocentre.com (see link below) page shows two people who may be better known to Brits than elsewhere in the world. Norman Wisdom was a famous comic actor (incredibly popular in Albania of all places) and  Warren Mitchell played the notorious Alf Garnett in the 70's (way too politically incorrect for 2012 but funny at the time). They have given their support over the years to the Neuropathy Trust. Unfortunately Sir Norman Wisdom has now died and we could really do with a few more celebrity role-models, so if you know of anyone, please let us know. That organisation is a very well known independent neuropathy charity that operates across the world.

What is the Neuropathy Trust?

The Neuropathy Trust is a worldwide Charity (1071228) that was founded in 1998 by Andrew Keen to provide a lifeline to people affected by Peripheral Neuropathy (PN) and Neuropathic Pain (NeP). It is the primary function of the Trust to ensure, irrespective of the cause of the peripheral neuropathy or neuropathic pain (whether known or otherwise) that patients, family, carers and health care providers receive the highest possible level of information and support. The Neuropathy Trust is independent of any government, political ideology, economic interest or religionWell Known Supporters

Warren Mitchell

“About twenty years ago a virus attacked the nerves in my spine, leaving me temporarily paralysed from the waist down. I was working on a film in Australia at that time and, although I discharged myself from hospital in order to carry on working, those were some of the toughest days in my life. Although I couldn’t stand or move around during a scene, for example, the film-crew propped me up and gave me every help so that we could carry on filming. Afterwards I went back to hospital in Sydney and had lots of physiotherapy for two weeks. I was very fortunate because I was soon walking again and within six weeks I was tap dancing on another film set. I have, however, been left with residual neurological effects which do trouble me greatly. My feet, for example, really do feel as if they are sometimes going to explode; at times they are burning and other times freezing cold. I also have strange tingly sensations in my legs and a degree of spasticity because my nervous system has been damaged permanently. After my article appeared in the paper the Neuropathy Trust sent me some information and I know there are lots of you out there who are in a far worse condition than myself. I am lucky that my dear wife Connie is so supportive and allows me one self-pitying moan per week. It is reassuring to know that doctors and scientists the world over are now working hard, trying to find ways to overcome the damage to nervous systems and relieve the pain which can affect the quality of life so much. I wish them all well in their research.”

Previous Patrons
Sir Norman Joseph Wisdom, OBE (4 February 1915 – 4 October 2010) RIP Old Chum!

“When I was approached to become Patron of the Neuropathy Trust, I was delighted to offer my support and endorsement to such a worthy cause. What has impressed me the most about this organisation is the positive and encouraging manner in which it is tackling the huge task that it has undertaken.
The Trust, which has been founded upon the motto ‘Carpe Diem’ (Seize the Day), is proving to be a tremendous source of comfort and inspiration to many thousands of people affected by Peripheral Neuropathy and associated neuropathic conditions. It is bringing together people from all over the world, offering hope and a sense of purpose and worth to families, friends and carers. It is helping to bridge communications between patients and the medical profession, for the benefit of all concerned.
This important work must be encouraged and sustained and I would urge you to join in with me in supporting this charity.”

http://neurocentre.com/community/?page_id=2

HUMAN GENOME WAS SHAPED BY AN EVOLUTIONARY ARM RACE WITH ITSELF

New findings by scientists at the University of California, Santa Cruz, suggest that an evolutionary arms race between rival elements within the genomes of primates drove the evolution of complex regulatory networks that orchestrate the activity of genes in every cell of our bodies

The arms race is between mobile DNA sequences known as "retrotransposons" (a.k.a. "jumping genes") and the genes that have evolved to control them. The UC Santa Cruz researchers have, for the first time, identified genes in humans that make repressor proteins to shut down specific jumping genes. The researchers also traced the rapid evolution of the repressor genes in the primate lineage.

Their findings, published September 28 in Nature, show that over evolutionary time, primate genomes have undergone repeated episodes in which mutations in jumping genes allowed them to escape repression, which drove the evolution of new repressor genes, and so on. Furthermore, their findings suggest that repressor genes that originally evolved to shut down jumping genes have since come to play other regulatory roles in the genome.

"We have basically the same 20,000 protein-coding genes as a frog, yet our genome is much more complicated, with more layers of gene regulation. This study helps explain how that came about," said Sofie Salama, a research associate at the UC Santa Cruz Genomics Institute who led the study.

Retrotransposons are thought to be remnants of ancient viruses that infected early animals and inserted their genes into the genome long before humans evolved. Now they can only replicate themselves within the genome. Depending on where a new copy gets inserted into the genome, a jumping event can disrupt normal genes and cause disease. Often the effect is neutral, simply adding to the overall size of the genome. Very rarely the effect might be advantageous, because the added DNA can itself be a source of new regulatory elements that enhance gene expression. But the high probability of deleterious effects means natural selection favors the evolution of mechanisms to prevent jumping events.

Scientists estimate that jumping genes or "transposable elements" account for at least 50 percent of the human genome, and retrotransposons are by far the most common type.

"There have been successive waves of retrotransposon activity in primate evolution, when a transposable element changed to become expressed and replicated itself throughout the genome until something turned it off," Salama said. "We've discovered a major mechanism by which the genome is able to shut down these mobile DNA elements."

The repressors identified in the new study belong to a large family of proteins known as "KRAB zinc finger proteins." These are DNA-binding proteins that repress gene activity, and they constitute the largest family of gene-regulating proteins in mammals. The human genome has over 400 genes for KRAB zinc finger proteins, and about 170 of them have emerged since primates diverged from other mammals.

According to Salama, her team's findings support the idea that expansion of this family of repressor genes occurred in response to waves of retrotransposon activity. Because repression of a jumping gene also affects genes located near it on the chromosome, the researchers suspect that these repressors have been co-opted for other gene-regulatory functions, and that those other functions have persisted and evolved long after the jumping genes the repressors originally turned off have degraded due to the accumulation of random mutations.

"The way this type of repressor works, part of it binds to a specific DNA sequence and part of it binds other proteins to recruit a whole complex of proteins that creates a repressive landscape in the genome. This affects other nearby genes, so now you have a potential new layer of regulation available for further evolution," Salama said.

KRAB zinc finger proteins are the subject of intensive research as scientists try to sort out their many regulatory roles within the genome. The idea that they are involved in repression of jumping genes is not new--previous studies by other researchers have shown that these proteins silence jumping genes in mouse embryonic stem cells. But until now, no one had been able to demonstrate that the same thing occurs in human cells.

The UC Santa Cruz team developed a novel assay to test whether a particular KRAB zinc finger protein could shut down certain jumping genes. The first authors of the paper, postdoctoral researcher Frank Jacobs and graduate student David Greenberg, came up with the strategy of testing primate retrotransposons in non-primate cells by using mouse embryonic stem cells that contain a single human chromosome. In the environment of a mouse cell, jumping genes that were repressed in primate cells became active. Greenberg then developed an assay for testing individual zinc finger proteins for their ability to turn off a primate jumping gene in the mouse cell environment.

"We did all our tests in mouse cells because they lack all of the primate zinc finger proteins, so when you put primate retrotransposons into a mouse cell they're all active," Salama explained.

The results demonstrated that two human proteins called ZNF91 and ZNF93 bind and repress two major classes of retrotransposons (known as SVA and L1PA) that are currently or recently active in primates. Assistant research scientist Benedict Paten directed graduate student Ngan Nguyen in a painstaking analysis of primate genomes, including the reconstruction of ancestral genomes, which showed that ZNF91 underwent structural changes 8 to 12 million years ago that enabled it to repress SVA elements.

Experiments with ZNF 93, which shuts down L1PA retrotransposons, provided a striking illustration of the arms race between jumping genes and repressors. The researchers found that, while it is good at shutting down many L1PA elements, there is one subset of a recently evolved lineage of L1PA that has lost a short section of DNA that includes the ZNF93 binding site. Without the binding site, these jumping genes evade repression by ZNF93. Interestingly, when the researchers put the missing sequence back into one of these genes and put it in a mouse cell without ZNF93, they found that it was better at jumping. So even though the sequence helps with jumping activity, losing it gives the jumping gene an advantage in primates by allowing it to escape repression by ZNF93.

"That's kind of the icing on the cake for aficionados of molecular evolution, because it demonstrates that this is a never-ending race," Salama said. "KRAB zinc finger proteins are a rare class of proteins that is rapidly expanding and evolving in mammalian genomes, which makes sense because the transposable elements are themselves continually evolving to escape repression."

Corresponding author David Haussler, professor of biomolecular engineering and director of the UC Santa Cruz Genomics Institute, said the study involved close collaboration between his group's "wet lab," directed by Salama, and the "dry lab" where researchers under Paten's direction used the computational tools of genome bioinformatics to reconstruct the evolutionary history of primate genomes. Haussler, a Howard Hughes Medical Institute investigator who has used his background in computer science to do pioneering work in genomics, said he established the wet lab to enable just this kind of collaboration.

"Both parts were integral to this study, and there was a lot of back and forth between them. This paper shows how important it is to integrate computational and experimental approaches to fundamental scientific problems, such as how and why we continuously evolve to be more complex," Haussler said.

Can Hypnosis Help With Nerve Pain

Today's post from painpathways.org (see link below)deals with a question that millions of neuropathy patients must have asked themselves at some point or other, when their medication fails to bring relief. Could hypnotherapy help? Let's face it, nerve damage is universally misunderstood and underestimated; there's no cure and the medications are limited in their effectiveness at best. We've exhausted the supplement and alternative therapy routes and we're bombarded by a media that hounds us as being opium-soaked drug addicts and parts of a world-wide, drug abuse problem. That sort of stress alone could lead us to hypnotherapy, if only to  believe that we still have some self-worth. However, can hypnosis genuinely provide an alternative (or supplementary) pain relief from our jangling nerves? This readable article provides lots of useful information about hypnosis and while it doesn't really go into the scientific evidence, it gives a compelling case for being open-minded (literally!) and giving it a try. of course, for every genuine hypnotherapist, there are a thousand fakers out there who are only to happy to separate you from your hard-earned cash, so get some advice and do your own research as thoroughly as you can. There are hypnotists who work within national health authorities; there are witch doctors and there are well-meaning people who are just about as effective as witch doctors: finding a genuine practitioner may be a minefield but it may also be worth the effort.

Does Hypnosis Work for Pain Management?
by Pain Pathways Magazine | Apr 14, 2017

Mind over matter…a phrase we’ve all heard before. It is typically interpreted to mean that we can use our mind to overcome a situation or even physical condition. For pain sufferers, does this mean that a technique such as hypnosis could help overcome the feeling of pain?

Most of us have preconceived notions of hypnosis and primarily consider it a form of entertainment for the enjoyment of an audience rather than a medical technique. However, hypnosis for pain management has more validity than most people realize – and it may be effective for you.

Origins of hypnosis

Many would be surprised to learn that hypnosis goes back to the biblical age, with evidence of hypnosis dating as early as 1500 BC. During ancient times, mystical practices including “dream temples” and “hypnos” – used by the Egyptians and Greeks – were often a part of the treatment of physical ailments. Over the centuries, hypnosis came and went in various forms and was even used as anesthesia until chloroform began being used in 1831.

By the 20th century, Dr. Milton Erickson’s version of hypnosis was becoming more conventional accepted and used in clinical psychotherapy. Ericksonian hypnosis stressed the importance of the interactive therapeutic relationship and engagement of the patient, rather than a therapist issuing standardized instructions to a passive patient.

As Dr. Erickson was becoming known as world’s leading hypnotherapist, reports describing hypnotic strategies for chronic pain management emerged. In the 1950s, hypnosis reports and the release of biofeedback technology grew in tandem, with the next few decades bringing knowledge about the stress response and its effects on an individual’s physiology. Studies were conducted investigating the effectiveness of both tools in the treatment of chronic pelvic pain, headaches, lower back pain and other pain conditions.

Explaining hypnosis

By definition, hypnosis is a set of techniques designed to enhance concentration, minimize one’s usual distractions and heighten responsiveness to suggestions to alter one’s thoughts, feelings, behavior or physiological state. It not a treatment but rather a procedure that can be used to facilitate other types of therapies and treatments.

Hypnosis involves learning how to use your mind and thoughts to manage emotional distress, unpleasant physical symptoms such as pain and certain behaviors like smoking over overeating.

For pain therapists, hypnosis focuses on the relationship between the mind and body and is considered mainstream. For health professionals in other fields, they may be considered alternative or complementary therapies. Clinical, or medical hypnosis is an altered state of awareness used by licensed therapists to treat psychological or physical problems.
How does hypnosis work?

During hypnosis, the conscious part of the brain is temporarily tuned out as a participant focuses on relaxing and letting go of distracting thoughts. By making his/her mind more concentrated and focused, a participant is able to use it more powerfully. A good analogy is that it’s like using a magnifying glass to focus the rays of the sun and make them more powerful.

So, what is hypnosis like?

When under hypnosis, a person may experience physiologic changes. It’s common for their pulse and respiration to slow down and their alpha brain waves to increase. In this altered state, a person may become more open to specific suggestions and goals offered by the therapist, such as reducing pain. After this suggestion phase, the therapist reinforces continued use of the new behavior or mindset.

For everyone, the experience is a little different. Some people describe their experience as a “trance-like” state. Others may experience it as imagery or the soothing of body sensations. Most people describe hypnosis as pleasant, where they feel focused and absorbed in the experience. They tend to have an acute awareness, but also feel relaxed, comfortable and peaceful.

Hypnosis techniques for pain management

Hypnosis treatment for pain conditions typically consists of 4 stages:

Induction – to focus one’s attention
Deepening – to deepen one’s relaxation of the body
Suggestions – for changes in the client’s experience of pain
Debriefing – to go over what transpired

Beyond taking a participant through these common stages, a therapist may employ varying approaches. They may focus on changing the sensations from pain to something else or on shifting the patient’s attention away from the pain. When underlying dynamics, motivations or unresolved feelings are influencing pain, hypnosis can help the participant unconsciously explore these things and get some resolution for the underlying issues.

Another technique being used for decreasing the sensitivity to pain is hypnoanalgesia. The goal here is to use hypnosis in place of an analgesic in hospitals during surgery to reduce nausea, pain, vomiting and the length of hospital stay. What began as somewhat anecdotal, positive results for hypnoanalgesia has now been supplemented by well-controlled experiments.

Common myths about hypnosis

Hypnosis can’t do everything. There are many myths, misconceptions and misinformation about it – possibly even more than about any other treatment for chronic pain. People have preconceived notions based on stage performers, television and movies and rumors – and these cultural references tend to embellish what it can do.

Hypnosis cannot cure everything. It isn’t dangerous. Participants won’t be asked to do anything against their will. (refer to chart below for common myths and their truths)



Finally, medical hypnosis isn’t generally taught as part of the curriculum of most health care providers. Lack of knowledge of the subject area leads to “superstition”, even within the medical community.

Benefits for pain management

The good news is that research has shown medical hypnosis to be helpful for acute and chronic pain. In 1996, a panel of the National Institutes of Health found hypnosis to be effective in easing cancer pain. More recent studies have demonstrated its effectiveness for pain related to burns, cancer and rheumatoid arthritis and reduction of anxiety associated with surgery. In 2000, a meta-analysis, or study of 18 studies of hypnosis, showed that 75% of clinical and experimental participants with varying types of pain obtained substantial pain relief – supporting the claims of the effectiveness of hypnosis for pain management.

There is growing evidence and established research to suggest that hypnosis:
Has a greater influence on the effects of pain rather than the sensation of pain
May be more effective or at least equivalent to other treatments for acute and chronic pain
Have the potential to save both money and time for patients and clinicians, if the patient responds to hypnosis
May be able to provide analgesia, reduce stress, relieve anxiety, improve sleep, improve mood and reduce the need for opioids
Can enhance the efficacy of other well-established treatments for pain

Good candidates for hypnosis

Some people are better suited to respond to hypnosis than others. And the degree to which people respond varies. There are researchers who believe that people need to possess a “hypnotic trait”, much like other individual traits, that make them more open to hypnotic suggestions. Others believe that all people start off with a sufficient ability to be hypnotized and achieve results and that hypnotic ability can be learned and enhanced through practice.

Hypnosis has been used successfully for people with a variety of pain conditions. The Arthritis Foundation has an entire page on its website dedicated to hypnosis for pain relief of arthritis. Other medical conditions commonly cited as being improved with hypnosis include: 
 
Headaches
Fibromyalgia
Cancer
Burns
Back pain

The American Society of Clinical Hypnosis cites many other illnesses that would make someone a good candidate. Aside from these conditions, many in the field believe that the reality is that candidates with just about any type of chronic or acute pain could see a positive outcome from hypnosis.
Getting started with hypnosis

Once a person has decided to try hypnosis, the American Society of Clinical Hypnosis offers some insights into choosing the right provider. As well, the Societies of Hypnosis provides of list of members in several accredited organizations that the user can search to find a provider based on location, specialty or certification. It’s important to make sure that whichever provider is chosen, the therapist is licensed and has the appropriate certifications.

In addition to meeting with a provider, people interested in the ongoing use of hypnosis may opt to be trained in self-hypnosis. Outside of the treatment setting, participants can learn to practice self-hypnosis or be given audio recordings of their therapy sessions to help with home practice.

And technology can also aid in approaching hypnosis from more of a DIY standpoint. There are several downloadable programs and mobile apps on the market that are designed to help the participant with self-hypnosis, including:

Body Pain Management Hypnosis – a mobile app
Pain Management Self Hypnosis – a downloadable MP3 or CD
Pain Relief Hypnosis – a mobile app 

Final thoughts

Does hypnosis work for pain relief? There is a great deal written about its use and much research into its efficacy. Although not quite mainstream yet, there does seem to be a growing acceptance of hypnosis and a willingness of some medical providers to explore this option with their patients. While not a cure, it may be a pain management tool that could work for you.

https://www.painpathways.org/does-hypnosis-work-for-pain-management/