BURNING FOR HOPE

HELP US PUT OUT THE FIRE

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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 alive while a crowd of people watch.  That pretty much describes the impending doom when diagnosed with Erythromelalgia (EM).  The only differences are EM sufferers’ burn alive on a daily basis and we’re not tied to a stake. With today’s technology it’s hard 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 usually affected, it can be limited to only one side. Primary EM may occur randomly for unknown reasons or rarely may be familial.  Secondary EM occurs when an underlying condition such as an autoimmune disease, neuropathy or Lyme disease is present, to name a few.  Some people burn continuously throughout the day while others have intermittent episodes of ‘flaring.’  The excruciating flares can last 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 doctor to the next for several years before receiving an accurate diagnosis.  It’s not uncommon to be misdiagnosed with Raynaud’s 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 ‘1 in 100,000.’ I knew I was a unique person but seriously?  C’mon.  That had been the one time I’d rather be just like everybody else in the world. Because the disease is rare most doctors have never seen or heard of it. I brought in an EM brochure and cell phone pictures to show my local neurologist. He had only seen one previous case in his 30-year career.  Apparently I lucked out in that he had at least seen it before. I decided to make 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 am 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 away because they don’t feel comfortable treating a disease 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’s no understanding on which type of doctor 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 like a scorching fire inside the limbs. Desperation leads a patient to erratic thoughts of flying across the county to see any renowned doctor who could possibly provide some relief.  I’d jump up and down on one leg in a blazing desert while eating live crickets if a doctor said it would cure me.  It reminds of that 1980’s USA commercial with their infamous motto, “What would you do for a Klondike bar?” For us, the saying would be, “What would you do for an EM cure?” I’m sure our applicants could get pretty creative. I don’t want to accept a portable fan and foot elevation as my only means of continued existence the rest of my life.

The pain is often unbearable and the suicide rate is high. When I first got diagnosed I made the mistake of going online and researching ‘Erythromelalgia stories.’ I read obituaries of victims who could no 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 far away from the ordinary world.

No one medication, therapeutic method, or procedure has been consistently effective for EM. It’s well noted that ice water immersions, although cooling, have a negative impact on the disease itself and can cause further complications such as ulcers. Like lab rats, we’re forced into experimenting with various medications, vitamins and herbal remedies due to our poor 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 little to no relief.  A small percentage of people have benefited from formulated compound creams but none of them have worked for me.  To me that’s camouflaging the ‘real’ underlying problem, whatever that may be.  Pain patches are another source of mild pain relief but it does little for quality of life.  The Erythromelalgia Association (TEA) founding member, Dr. Jay S. Cohen, M.D., personally suffered with the disease and offered several medical and natural treatment options to explore.  Thanks to him, I take several supplements that assist in my daily survival. Dr. Cohen passed away on December 6, 2015.  His obituary did not state his cause of death. His passing was a major loss to the medical community and particularly sad for EM sufferers.

EM does not discriminate by age, nationality, or gender. It’s a tough disease for adults to tolerate let alone children.  Some EM children have never known a life without pain. We take for granted how simple 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 pick them up.  Most of them are not able to participate in physical education class with their friends. The intermittent flaring makes it challenging to maintain good attendance. It often times forces parents to make the difficult decision of having their child home schooled. For all these reasons, engaging socially can have its own set of problems for many youths.

A FEW OF OUR COURAGEOUS LITTLE WARRIORS

kids em

The picture featured below touched my heart on many different levels.  Not only can you see this little boy’s pain in his lower limbs but the background clearly shows an elderly couple’s empathetic stares.  No child deserves to feel that much agony during a simple trip to Walmart to see the Easter bunny.

4

I have 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, funny person who brightened a room with my contagious laughter.  Too much excitement now can cause a few hours of pain so I try not to overexcite my nerve cells.  My days are spent enduring sporadic flares, not knowing if one episode will feel worse than the previous. Sunlight used to be my biggest enemy but now I flare anytime, anyplace for no 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. No specific drug has relieved my symptoms to date.

It would be a great morale booster to go one full day without pain.  But then I take 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 change 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 get dressed. I have lots of clothes and shoes I haven’t worn since my EM diagnosis.  A bulky sweater and flip flops doesn’t exactly go well together. Besides, heavy clothing can cause overheating and that’s a nightmare. One side of me says, “Get rid of those clothes and shoes. You’ll never be able to wear them again.” Then the hopeful side of me says, “By giving away those items you’re surrendering ALL hope for relief or a cure.”

It’s difficult for family and friends to understand this disease. Although they love us unconditionally and understand we’re suffering, who could comprehend the feeling of burning alive every day?  It’s hard 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 feel like I’m watching my life wither away. EM doesn’t just affect the patient, it impacts their entire family.  Our condition limits any events our loved ones would ever want to plan with us.  Reality strikes knowing there won’t be any more hot sunny outdoor activities to enjoy.  A summer gathering now sends signals of great sadness because we can’t comfortably be a part 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’s unfair for families to hold back living their lives so we pretend to maintain a smile while observing from afar.  We’d love to physically do all the things they can but that’s impossible right now. Many of us are on disability while others struggle to get approved for it. I am still able to work. I get up daily and head to the office, finish my shift, go home, sit on the couch, eat, sleep, then repeat the next day. I have a fan on my desk (of course). I’m surrounded by the same walls day in, day out.  The routine makes me feel like I’m not living anymore.  I’m merely surviving.  The youthful, energetic person I once was is fading away.

I feel a sense of comfort 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 group of 1,000 members is the most amazing community I have ever been a part of.  Although it’s 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 – USA wide, Canada, Norway, England, Scotland, Argentina, New Zealand, Italy, Sweden and France, just to name a few.

Whenever I feel 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 is an inspiration.” During another dining out I watched a group of hearing impaired ladies sign language 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 child and I felt joy in my heart. Once, in a department 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 now a quadriplegic. I came to realize we have 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 ability to hear.   The goal is finding things we CAN do. Freedom is in the imagination. I enjoy writing when my hands aren’t flaring.  Going to the movies is enjoyable. It’s dark and cool inside so it makes me feel like an average, everyday human being.  The best things in life are FREE: Hugs, kisses, love, smiles, family, laughter, friends, good memories, and sleep.  Well, scratch sleep off the list. Most of us aren’t getting any unless we’re medicated. *sigh*

I find my strength in God, my spouse, family and our Erythromelalgia online support group. I believe a day will come when there is no more suffering. For now I just take 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 help us spread awareness ~

This article was featured on the front page of The Huffington Post:

http://www.huffingtonpost.com/melissa-curley-bogner/burning-for-hope_b_9618652.html

My other published blog on Erythromelalgia (EM):

https://melissaannsite.wordpress.com/2016/05/04/the-boy-trapped-inside-a-fire/

Erythromelalgia (EM) Awareness Video:

ERYTHROMELALGIA FLARE PHOTOS

RED

HERE ARE SOME OF OUR BRAVE EM WARRIORS WORLDWIDE

NEW36

EM36

Author: melissaannsite

I'm a 40-something year old woman who has lived a life of adventure so far. I'm an ENFP Virgo with no judgment in my heart on others. Everyone is entitled to live their life as they wish, but I still enjoy the humor that life has to offer... and the memories.

45 thoughts on “BURNING FOR HOPE”

    1. Thank you so much for this blog , excellently written and expresses exactly how it feels and how it affects us on a daily basis. I too feel alienated from normal life and family. I too had to diagnose myself initially. The first Doctor I went to with the burning told me it was the menopause and promptly sent me to a phychiatrist. My EM comes secondary to Peripheral neuropathy which I didn’t know I had. My EM affects feet, legs, hands, face and now my back and head. There are times when I would like to plug myself in to people I know and also Doctors who don’t know about this cruel condition. One Doctor recently said to me when I was having a bad bad flare up. See my hand (with his arm outstretched) there is a fire my hand is burning . Then he put his hand down and then up again and said see no fire my hand isn’t burning… In other words he was trying to tell me it was all in my head. I too researched and diagnosed myself before hitting “lucky” with a Rhumatologist who took me seriously and sent me down to London to see a Professor of neurology who confirmed it along with the PN. No cause has been found but I believe it was due to damage to nerves when I had a disc out and they had to due a root canal on my spine due to the disc being stuck to my sciatic nerve for almost 3 years. As I have several other conditions I have a hard time trying to fight this and yes I too have felt like I don’t want to be here anymore but then I think maybe someone will come up with a cure ..one day.. Please may it be soon for all of us. Thank you for this blog..

      Liked by 1 person

  1. as with neuropathy.. you can only take it one day at a time!  they prescribe lyrica for neuropathy, but with the possible side effects, weight gain, depression, suicide, death, you can bet I’m not taking it!!! hope today is a good one for you… and many more to come! mare & the reubs

    From: melissaannsite To: m_vanek60453@yahoo.com Sent: Monday, April 4, 2016 8:21 PM Subject: [New post] BURNING FOR HOPE #yiv2493326804 a:hover {color:red;}#yiv2493326804 a {text-decoration:none;color:#0088cc;}#yiv2493326804 a.yiv2493326804primaryactionlink:link, #yiv2493326804 a.yiv2493326804primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv2493326804 a.yiv2493326804primaryactionlink:hover, #yiv2493326804 a.yiv2493326804primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv2493326804 WordPress.com | melissaannsite posted: “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 alive while a crowd of people watch.  That pretty much describes the impending doom when diagnosed with Erythr” | |

    Liked by 1 person

  2. Thank you so much for this x I am a parent of a child I suspect has em and it’s heartbreaking to watch! But her smile, wit and determination no matter
    The pain makes it all worth
    While xxx

    Liked by 1 person

    1. I see the photos all the time of children suffering with EM. It breaks my heart. No child should have to live with this dreadful condition. I will be praying for you and your family. *hugs*

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      1. My daughter is 11 with EM. Just to have the feeling that she isn’t alone and someone understands what she is going through, helps a great deal. If not for medications that numb her, she could not even speak. She has been wheelchair bound could not walk and screamed in pain until an ER Dr overdosed her with ativan to stop her from crying. This is only one of the many tragic scenarios over the past 2 years.
        She loves school and is an excellent student. She hopes to become a Dr someday to be sure that no one is treated so unethically again. Thank you for speaking out to raise awareness for this debilitating disease.

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      2. Joy, this breaks my heart. My thoughts and prayers are with you and your daughter. I wouldn’t wish this on my worst enemy. God bless you. Thanks for taking the time to read the blog.

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  3. Thank you for taking the time to do this, I’ve been wanting to do one with EM and Lyme b/c I see many people have the two. Problem w/Lyme is it has taken a great part of my memory away and that frustrates me to NO end. With these diseases you lose MUCH of your lives. I constantly pray for all those who suffer and hope one day we will have a little bit of our lives turn back to where we can enjoy some of it……..thanks for all you do!!

    Liked by 1 person

  4. Melissa, Thanks so much for writing this piece. It is comforting to see it all pulled together, and to know I am not alone. Your words have made a huge difference for me. I was looking at Joy’s reply, and how and why her daughter wants to be a doctor. I am a child psychotherapist in private practice, and while I am still working (less than part-time) I needed to scale back b/c I was too sick to be working as much as I was. (I specialize in treating child sexual abuse and trauma, it is a big job that I need to be 100% for.) I was explaining to a child patient, a 9 year-old girl that I had been seeing for a few years, that I was taking a leave b/c I was sick and needed to rest. It was a tearful goodbye as she had really gotten well. She told me not to worry b/c she was going to be a doctor when she grew up so she could get me better like I got her better – and that everything would be okay. So beautiful, it made my heart swell. Thanks again Melissa, best to all – lynne

    Liked by 1 person

    1. IMO nanjizwdiejsze jest to, że szkielet atakuje endermana. Strzała ewidentnie leci w jego kierunku, a szkielet też spogląda na niego. To oznacza, że będą wrogo nastawione do nich ?

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  5. Hi! My Brittany and I saw your tag on Jenny’s facebook page.. also I am Bonnie Oliver’s daughter- I think you once worked with her?
    I feel like I may have something similar. When the temperatures change- extreme cold/heat the tips of my fingers to about my knuckles will swell become extremely red and itch. I was wondering if this is something similar?

    Liked by 1 person

  6. Thanks for writing this great article! My 15-yr-old son only suffered for a short time in comparison to most, but his pain was so great he talked about ending his life several times. Thankfully, he was quickly diagnosed within a couple weeks (May 2015), hospitalized (May 2-20 & June 20-July4), and we had doctors who were pretty much willing to try anything. The list of medications tried was extensive, but METHADONE was his “magic pill”. It only took a small amount twice a day to control the pain and he was eventually weaned off all the other meds and finally the methadone since Christmas 2015. His hands continue to have some sensory loss and the fine motor coordination is still being worked on in therapy, but he has NO PAIN!!!! Praise the lord!

    Liked by 1 person

  7. Hi – thanks for this excellent article. My husband suffers from EM and most people we know, including his doctors, simply can’t grasp what it means in day-to-day life. I’m going to direct them to your post for a glimpse! With your permission I’d also like to share it on my own blog for family and friends to read.

    Anyway after reading this he’s signed up for the online support group which I think will be a blessing as things have been worse lately….just reading all the comments on this post has encouraged me too. Your writing has made a real difference to us, thank you!

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  8. Reblogged this on Time for a Cuppa and commented:
    Been too busy to post anything lately with tween tensions at school, an essay due this week, sick kids and Bionic Man dealing with a lot more pain than previously. That last factor has driven me back to my friend the computer for fresh ideas, resources etc and I discovered this brilliant post on erythromelalgia which struck such a chord with us I had to share. It’s also been published by The Huffington Post this week and you can read it there too by following this link http://www.huffingtonpost.com/melissa-curley-bogner/burning-for-hope_b_9618652.html Please feel free to share this further to raise awareness.

    Liked by 1 person

  9. I encourage people with this condition to try homeopathy. Homeopathy, though mostly ignored or dismissed in North America, is a flourishing and viable therapy in many parts of the rest of the world. In India, they even have homeopathic hospitals.

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  10. In case it is helpful, some paresthesias are caused by hypothyroidism. Mark Starr, in ‘Hypothyroidism type 2’ says: “Parasthesias are abnormal sensations such as tingling, burning or formication (…) These usually occur in the extremities. Many of my hypothryoid patients suffer parathesias.” Some endocrinologists rely too much on the TSH test alone to diagnose thyroid disorders and do not take seriously the actual symptoms of hypothyroidism. A TSH result in the ‘normal’ range does NOT mean that you are not suffering from hypothyroidism.

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    1. Erythromelalgia is very different from a parasthesia. I know, I have experienced each at different times. EM is not just a tingling, burning sensation of the nerves. It is very different from that common condition. The pain is far, far beyond parasthesia. I recently badly burned my hand and it was nothing compared to the EM pain. Your skin is bright red and super hot from all the blood and other things that get dumped near the surface of the extremities, because the tiniest blood vessels open too often or too wide. If you have ever had an IV perforate and leak into your tissues, and felt that extreme pain, that is similar. It feels like that, only it feels like a million small perforations right near the surface. The heat and pressure are unbearable. As opposed to the parasthesia feeling which is how you feel when a foot goes to sleep. Very different. Even when that is extreme, I would take a parasthesia moment over an erythromelalgia one any time. Moderate Parasthesias are very painful and unsettling. Whereas, for me, Erythromelalgia is a progressive, systemic hell.

      Like

    2. Erythromelalgia is very different from a parasthesia. I know, I have experienced each at different times. EM is not just a tingling, burning sensation of the nerves. It is very different from that common condition. The pain is far, far beyond parasthesia. I recently badly burned my hand and it was nothing compared to the EM pain. Your skin is bright red and super hot from all the blood and other things that get dumped near the surface of the extremities, because the tiniest blood vessels open too often or too wide. If you have ever had an IV perforate and leak into your tissues, and felt that extreme pain, that is similar. It feels like that, only it feels like a million small perforations right near the surface. The heat and pressure are unbearable. As opposed to the parasthesia feeling which is how you feel when a foot goes to sleep. Very different. Even when that is extreme, I would take a parasthesia moment over an erythromelalgia one any time. Moderate Parasthesias are very painful and unsettling. Whereas, for me, Erythromelalgia is a progressive, systemic hell. But I don’t give up hope on a treatment or cure or finding new ways to adapt. And if we support each other, we will make it through.

      Evem if the floor is… lava

      Like

  11. Thank you for your valuable insight into a disease most people have never heard of. I treat patients with CRPS and RSD and appreciate your struggle with the pain and burning symptoms. Wishing you less pain very soon Melissa. With kind regards, Dr. Michael Cooney, NJ

    Liked by 1 person

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