Burning for Hope

Source:   —  April 07, 2016, at 8:07 PM

That beautiful much describes the imminent doom when diagnosed with Erythromelalgia (EM). The only differences are EM sufferers' burn lively on a daily basis -- and we're not tied to a stake.

Burning for Hope

Please assistance us keep the fire out

Imagine yourself living during the medieval times, and although you're an innocent person, you're about to be secured to a wooden post and burned lively while a crowd of people watch.

That beautiful much describes the imminent doom when diagnosed with Erythromelalgia (EM). The only differences are EM sufferers' burn lively on a daily basis -- and we're not tied to a stake.

With today'south technology, it'south tough to believe we're still somewhat living in the stone ages in understanding EM. The exact underlying cause remains unknown. However, the condition is thought to result from vasomotor abnormalities or dysfunction in the normal narrowing (constriction) and widening (dilation) of the diameter (caliber) of certain blood vessels, leading to abnormalities of blood flow to the extremities.

EM causes severe burning pain, noticeable redness (erythema) of the skin, swelling, and increased skin temperature, particularly of the feet. However, the hands, face, ears, and limbs can also be affected. Although both sides of the body are generally affected, it can be Ltd to only one side. Primary EM may occur randomly for unknown reasons or seldom may be familial. Secondary EM occurs when an underlying condition such as an autoimmune disease, neuropathy or Lyme sickness is present, to title a few. Some people burn continuously throughout the day while others have intermittent episodes of "flaring." The excruciating flares can latest from hours to days at a time. Nighttime tends to be worse. Episodes are mostly brought on by warm temperatures, eating spicy food, alcohol consumption, temperature fluctuations, exercising and walking. The pain can be so intense that a patient cannot walk.

The first stage of misery is figuring out your own diagnosis. Most EM patients journey from one Dr to the following for several years before receiving an accurate diagnosis. It'south not uncommon to be misdiagnosed with Raynaud'south disease, cellulitis or various other conditions. In my case, I obsessively researched my symptoms online for nearly a year before coming across a few EM pictures. I was absolutely terrified. I didn't think it was possible I could be "one in 100.000." I knew I was a unique person but seriously? C'mon. That'd been the one time I'd rather be just love everybody else in the world.

Because the sickness is rare, most doctors have never seen or heard of it. I brought in an EM brochure and cell phone pictures to indicate my local neurologist. He'd only seen one previous case in his thirty-year career. Apparently I lucked out in that he'd at minimum seen it before. I decided to create the two-hour excursion to Johns Hopkins for further testing. After repeated visits with various specialists, blood work, urine samples, and gene mutation testing, I'm still in the same position today -- no answers.

The endless voyage has just begun once a patient receives their official diagnosis. Several doctors turn patients far because they don't perceive comfortable treating a sickness they've never heard of. Some physicians aren't willing to work with patients when it comes to experimenting with various medications until some form of relief is found. Unfortunately there'south number understanding on which type of Dr a patient should see -- neurologist, dermatologist, hematologist, rheumatologist, podiatrist, geneticist, internal medicine, cardiologist, pain management or a primary care physician.

The pain feels and looks love a scorching fire interior the limbs. Desperation leads a patient to erratic thoughts of flying across the county to look any renowned Dr who could possibly allow some relief. I'd leap up and down on one leg in a blazing desert while eating live crickets if a Dr said it'd remedy me. It reminds of that one thousand nine hundred eighty UNITED STATES OF AMERICA commercial with their notorious motto, "What'd you do for a Klondike bar?" For us, the saying would be, "What'd you do for an EM cure?" I'm sure our applicants could obtain beautiful creative. I don't wish to accept a portable fan and ft elevation as my only means of continued existence the rest of my life.

The pain is frequently unbearable, and the suicide rate is high. When I first got diagnosed I made the error of going online and researching "Erythromelalgia stories." I read obituaries of victims who could number longer deal with their excruciating pain. I also came across EM clinical trials where some patients had died by suicide before the trial concluded. I read the phrase "wheelchair bound" in several articles. I felt incredibly isolated, afraid, and distant far from the ordinary world.

Number one medication, therapeutic method, or procedure has been consistently effective for EM. It'south well well-known that ice water immersions, although cooling, have a negative impact on the sickness itself and can cause further complications such as ulcers. Love lab rats, we're forced into experimenting with various medications, vitamins and herbal remedies due to our destitute quality of life.

The side effects are a whole different story. Chances are high a patient has wasted money on a wide range of creams that provided small to number relief. A tiny percentage of people have benefited from formulated compound creams, but none of them have worked for me. To me that'south camouflaging the "real" underlying problem, whatever that may be. Pain patches are another source of mild pain relief but it does small for quality of life. The Erythromelalgia Organization (TEA) founding member, Dr. Jay S. Cohen, M. D., personally suffered with the sickness and offered several medical and natural treatment options to explore. Thanks to him, I get several supplements that assist in my daily survival. Dr. Cohen passed far on December six, two thousand fifteen. His obituary didn't state his cause of death. His passing was a major loss to the medical community and particularly dreary for EM sufferers.

EM doesn't discriminate by age, nationality, or gender. It'south a tough sickness for adults to tolerate let alone children. Some EM children have never known a life without pain. We get for granted how ordinary life should be for youngsters -- sleep, eat, learn, play, love. Imagine if every day were an agonizing struggle for your child? Many adolescents endure painful flares during school hours, requiring their parents to choose them up. Most of them aren't able to partake in physical education class with their friends. The intermittent flaring makes it challenging to support excellent attendance. It frequently times forces parents to create the challenging decision of having their baby residence schooled. For all these reasons, engaging socially can have its own set of problems for many youths.

A few of our courageous tiny warriors

I've EM in both hands and feet and sometimes my ears. I suffer with chronic pain on a daily basis. As a result I've become a fraction of the person I used to be. I once had been an extroverted, comic person who brightened a room with my contagious laughter. Too much excitement presently can cause a few hours of pain, so I attempt not to overexcite my nerve cells. My days are spent enduring sporadic flares, not knowing if one episode will perceive worse than the previous. Sunlight used to be my biggest enemy, but presently I flare anytime, anyplace for number specific reason. Cooking, cleaning and holding my cell phone causes my hands to flare often. Walking for longer than 30 minutes can cause my feet to flare depending on the weather. The swollen, fiery throbbing is indescribable. I breathe through the pain then pray it passes soonest. Number specific drug has relieved my symptoms to date.

It'd be a grand morale booster to go one full day without pain. But then I get a shower and typically the fire begins. Possibly the fire waits until I turn on my blow dryer or curling iron. Maybe I luck out and the fire holds off until a temperature modify is triggered. Eventually, the heat is on regardless of what I do. The fire walks with me wherever I go.

I'm reminded daily of my constraints when I walk in my closet to obtain dressed. I've lots of attire and shoes I haven't worn since my EM diagnosis. A bulky sweater and flip flops doesn't precisely go well together. Besides, heavy clothing can cause overheating and that'south a nightmare. One side of me says, "Obtain rid of those attire and shoes. You'll never be able to wear them again." Then the hopeful side of me says, "By giving far those items you're surrendering ALL hope for relief or a cure."

It'south challenging for family and friends to realize this disease. Although they like us unconditionally and realize we're suffering, who could comprehend the feeling of burning lively every day? It'south tough for others to grasp this type of pain, depression, and lonesomeness. Many of us mask our sorrows. I sometimes cry in the shower or when I'm driving in my car. I perceive love I'm watching my life wilt away. EM doesn't just affect the patient, it impacts their all family. Our condition limits any events our loved ones would ever wish to map with us. Reality strikes knowing there won't be any more hot sunny outdoor activities to enjoy. A summer gathering presently sends signals of grand sadness because we can't comfortably be a portion of it. Will there ever be a time we can sit in the sunshine feeling the rays of warmth on our skin without pain? Will a day arrive when we can go for long walks, hiking or bicycling again? Those memories are quickly fading and being replaced with tears of loneliness.

It'south unfair for families to keep back living their lives so we pretend to support a smile while observing from afar. We'd love to physically do all the things they can but that'south impossible right now. Many of us are on disability while others struggle to obtain approved for it. I'm still able to work. I obtain up daily and head to the office, finish my shift, go home, sit on the couch, eat, sleep, then repeat the following day. I've a fan on my desk (of course). I'm surrounded by the same walls day in, day out. The routine makes me perceive love I'm not living anymore. I'm merely surviving. The youthful, energetic person I once was is fading away.

I perceive a sense of consolation knowing others are fighting this "fire" with me. I'm not relieved they're suffering, but I'm thankful I'm not alone. Our EM online support grouping of 1.000 members is the most incredible community I've ever been a portion of. Although it'south mostly comprised of women, many men and children suffer with EM. When an EM warrior is down we chime in to lift their spirits, letting them know we're all in this together. Our warriors reside all over the world -- UNITED STATES OF AMERICA wide, Canada, Norway, England, Scotland, Argentina, New Zealand, Italy, Sweden and France, just to title a few.

Whenever I perceive down I'm reminded of reasons to be grateful. I dined in a restaurant one evening when a teenage amputee walked past me. She was smiling and I thought to myself, "Wow, she's an inspiration." During another dining out I watched a grouping of hearing impaired ladies sign speech with each other throughout the evening. On a different occasion I stood at a bus stop, feeling pained, when I saw a mother pushing her severely mentally challenged adult-child by in a wheelchair. The mother had been smiling and laughing with her baby and I felt joy in my heart. Once, in a dept store I observed a wife assisting her blind husband through the aisle. I'm reminded by an acquaintance that was tragically injured in a skydiving accident and is presently a quadriplegic. I came to realize we've plenty of reasons to smile. We're blessed to have our limbs (regardless of their malfunctions), mental well-being, vision, sense of taste and smell, and our skill to hear.

The goal is finding things we CAN do. Freedom is in the imagination. I appreciate writing when my hands aren't flaring. Going to the movies is enjoyable. It'south shadowy and chilly interior so it makes me perceive love an average, everyday human being. The best things in life are FREE: hugs, kisses, love, smiles, family, laughter, friends, excellent memories, and sleep. Well, scratch sleep off the list. Most of us aren't getting any unless we're medicated. *sigh*

I discover my strength in God, my spouse, family and our Erythromelalgia online support group. I believe a day will come when there is number more suffering. For presently I just get it one day at a time. I'm optimistic for a cure. In the meantime, my hope is for a better understanding of EM and treatment options for those suffering with this dreadful disease.

Please assistance us spread awareness.

My personal blog site of this story.

Here are some of our intrepid EM warriors

If you'd like to contribute to finding a cure, please visit The Erythromelalgia Association.


If you -- or someone you know -- necessity help, please call 1-800-273-8255 for the National Suicide Prevention Lifeline. If you're exterior of the U. S., please visit the International Organization for Suicide Prevention for a database of international resources.

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