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How Social Support Has Helped Me Through My Erythromelalgia Diagnosis

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In February 2016, I was at work sitting at my desk when I felt this horrible burning pain in the extremities of my feet. My extremities were bright red, stinging and burning. Previously, I thought it was a horrible bug bite, but then I noticed it was spreading on both of my feet. I made an appointment with my primary care doctor who ran some blood work and referred me to a rheumatologist.

The pain persisted and began to worsen. My feet became so sensitive that the weight of a bed sheet would force me to tears. I was sleeping with ice packs on my feet and I couldn’t wear close-toed shoes. I remember walking around a store and the pain being so severe that I ran out of a store and into a grocery store just to grab a bag of frozen peas to put on my burning feet. After two weeks of tears, calling out of work and canceling plans I finally got an appointment with the rheumatologist who diagnosed me with primary erythromelalgia (EM): a rare and incurable disorder.

EM is a neurovascular disorder that involves the dysfunctional narrowing and widening of blood vessels. The cause of EM is unknown and the majority of people report that the onset is sporadic. Most individuals describe the disorder as severe burning pain, redness and increased temperatures of the extremities and some people, including myself, get blisters.

EM is unique in that it is a bilateral disorder, affecting the right and left side of the body. People with EM report that they must be in cool rooms, have ice on their feet or keep cool air blowing on the irritated skin. Most people are affected in their feet, but some people experience this pain in their legs, hands and even their face. A vast majority of people diagnosed with EM are unable to work and often become depressed or isolated. Some even die by suicide because of this disorder. Doctors have found that some people find relief using anti-depressants, gabapentin, aspirin and calcium antagonists. Unfortunately, everyone reacts differently to the medication and many people find no relief at all.

After my diagnosis, I attempted to try several treatments with no relief. Before the diagnosis, I was an active distance runner. Running miles and miles was my personal self-care. However, after my diagnosis I wasn’t even able to walk outside in 72-degree weather unless my feet were submerged in ice water. I started feeling depressed and I just wanted to be alone. I felt bad constantly saying, “Sorry I can’t go out because of my feet.” Sometimes I would even make plans, but always cancel the day of because my feet were flaring up too bad. I started talking to my doctor about filling out disability forms because I was in too much pain to be at work. I was grieving the loss of my life and making myself anxious about the future. I have never felt so alone in my life.

Then, one day I stumbled upon a support group for people with EM. The group is very small. People from all around the world shared their stories, their successes and their disappointments. I remember my first post. I was crying and opening up about my personal experience. The next day there were several comments. So many people were optimistic and gave me great advice on how to manage friends, talk to family about the diagnosis and much more. There was one woman who with EM in her feet and legs. Her EM is so severe that for years she has soaked her feet and legs in ice buckets every day. She just went to the doctor and they are talking about amputating her legs because she is starting to get ulcers from the constant damage to her skin, and yet she still had words of encouragement. I thought, “Wow! She could be sitting here like me crying, but she wakes up every day and lives her life.” She is one of my heroes, and most importantly, she was the hope and encouragement I was looking for in this time of need.

The support group was the place where I found hope, connection and strength. I have yet to find any medication that makes me feel as good as social support – especially my online support group. We constantly uplift one another, and when one of us are down, we listen and let the other person know it’s OK to be sad. That has been some of the best advice from my support group. With all the doctors, medications and more, to this day a dose of social support is by far the best medication.

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Thinkstock photo via Jacob Ammentorp Lund.

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Why I Fundraise for Erythromelalgia After My Daughter's Diagnosis

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By: Kristin Hooper

I advocate and fundraise for erythromelalgia.

My daughter is beautiful. She is 16 years old. She loves chilling with
her friends, playing rugby, listening to music and her baby sister, Hailey. It is hard to believe that only five months ago she was a happy, healthy teenager who was studying hard at school and looking forward to having fun in the summer holidays. But her life was suddenly turned upside down when she developed the rare neurovascular chronic pain condition known as erythromelalgia (EM).

Madison first noticed that something strange was happening when her feet and hands developed a mottled rash and started to swell and burn. I was frantic; weeks passed but doctors didn’t seem to know what was wrong with her. The burning in her feet and hands became so severe it began to affect her mobility. As she lay on her bed sobbing for the pain to stop, I felt every mother’s worse nightmare had begun. My precious child was in more pain than you could ever imagine, yet I had nowhere and no one to turn to.

Every test and scan was coming back negative. Doctors still didn’t seem to have a clue what could be wrong with her, except one. However, as her skin was mottled rather than the vivid red described in medical textbooks, he was trying to confirm a diagnosis of EM, a.k.a. “burning man syndrome.”

I barely slept for weeks, spending hours combing the internet. I was desperate for a clue, any clue, of whether this rare syndrome might be what was wrong with Madison. By now she was in so much pain she had been admitted to the hospital and put on an IV of Benadryl, Ativan and Colloid. This potent cocktail did nothing to help; it didn’t even sedate her. She could only find some relief from using ice on her burning skin.

It was late one night – and by chance – that I stumbled across The EM Warriors, a patient support and information network for erythromelalgia. I was shocked to read that approximately one in 100,000 people in the US develop EM, and that it could affect any part of the body, even internal organs. It didn’t discriminate either, which meant that anyone could develop its genetic, idiopathic or secondary forms, even babies. Listed as the most common symptoms were: intense burning pain, skin redness (erythema), swelling, tactile allodynia (hypersensitivity), pricking, itching and increased skin temperature. I couldn’t believe it – Madison’s symptoms sounded exactly like EM, except that her skin was mottled with a lacy rash. I quickly joined their website and emailed the help desk.

lacy cobweb rash called livedo
The lacy cobweb rash known as livedo seen in between and during an erythromelalgia flare.

Almost straightaway a lovely lady from the support team contacted me. She sent me tons of information and facilitated the tools for self-advocacy. More importantly, she helped educate Madison on the best way to try to manage the painful symptoms, telling her to stop icing her feet and hands (as it can lead to ulceration, necrosis and permanent nerve damage) and suggesting less aggressive cooling methods. She also told Madison’s doctor about the most effective drug protocols.

The emotional support I received was incredible! What really blew me away was that I had someone on the other end of the phone when I needed them. I’d email them requesting a support call and they would phone almost immediately. They phoned Madison too and that really meant a lot. The EM Warriors helped my family every single step of the way and will always be a very special part of our lives!

Without The EM Warriors I don’t know what we would have done. They were the only support organization that gave immediate help and offered expert advice. I am so grateful that her neurologist was made aware that some cases of EM can manifest as severe mottling (livedo) – especially in the early stages. Without that insight, Madison wouldn’t have been diagnosed so fast for sure, nor would she have had an off-label lidocaine infusion to reduce her pain. I didn’t realize our need for information and support would be ongoing though; sadly it doesn’t miraculously stop when you manage to find a doctor who is willing to help.

I have since learned there is no cure for erythromelalgia, only attempts at symptomatic relief via trial-and-error medications, cooling products and cooling fans and attempts to ease the flare-ups by minimizing triggers (the most common being heat, stress, fatigue, exertion and pressure). Drugs that may bring some relief to one person with EM, however, can actually make flare-ups worse in another. Lifestyle changes are crucial too: keeping an optimal temperature of around 65 ºF (although some need it much lower), wearing unrestrictive clothing and footwear, cutting out stimulants like coke and coffee and even avoiding spicy food, etc.

Most doctors have never heard of erythromelalgia and are disbelieving of something that is pretty much invisible when not in a flare. Unsurprisingly, many with EM struggle and end up self-diagnosing, just like I did with my daughter.

I was shocked to discover that a lot of people are never actually officially diagnosed. Imagine all that time without adequate medical support and the cost of searching for answers. The EM Warriors even found a doctor in our state who was familiar with EM and willing to administer the infusion!

EM Warriors are a small, self-funding charitable organization that provide an amazing support and information service totally free of charge – but they desperately need manpower and donations. That’s why our family is going to do what it takes to raise money for their hotline service and research fund. To kick things off, the amazing Girl Scouts of Florida Troop 106 and I did a sponsored car wash and have plans to do more.

girl scouts logo
More information about the Girl Scouts Florida can be found on their website: http://www.girlscoutsfl.org

I have even volunteered to help with their Parents and Little Warriors Club too. In our moment of darkness, The EM Warriors reassured me that my daughter and I were not alone and that there was hope – I’ll never forget that!

illustration of a stick figure with his feet on fire
The Parents and Little EM Warriors Club

If I can offer another parent or person who has EM half the support and hope that was so freely given to me and my beautiful daughter, I will feel blessed.

Baby sister Hailey who is a guide scout with Fundraisers Troop 106 Florida.

 

Who are The EM Warriors?

The EM Warriors: Erythromelalgia Patient Support and Information Network are a self-funding charitable association dedicated to EM powering, educating and encouraging all those living with or affected by erythromelalgia and its comorbidities.

Do you or a loved one think you may have erythromelalgia? Would you like more information about the syndrome or have EM-related support needs? Visit the EM Warriors website or email their support team.

Please consider donating to help us sponsor independent research into erythromelalgia.

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What 'Chronic' Truly Means to a Chronically Ill Person

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I miss the moments when I didn’t have to force a smile.

I miss the times when I didn’t have to pretend I felt fine while out in public, only to get into my car and cry in silence.

I miss feeling carefree and making plans without a moment’s hesitation.

Ultimately, I miss the “me” that got left behind.

It’s hard to embrace an illness that brings so much grief and agony into your life.  I can see myself in the mirror but I don’t always see the person staring back at me. Nonetheless, erythromelalgia is my new “normal” and yes, it’s chronic.

Whether it is a chronic illness, rare disease, visible or invisible disability, or an autoimmune disorder, there is one thing they all share in common – they’re chronic, meaning the condition or disease is long-lasting regardless of its nature.

Google’s first-appearing definition of “chronic” describes it as “(of an illness) persisting for a long time or constantly recurring.”

But to me, “chronic” means so much more than that…

“Chronic” embodies the years of health and wellness efforts I’ve made since my diagnosis. I’ve seen countless doctors and tried various recommended medical and alternative treatments. I’ve dabbled in herbal remedies and nutritional diets and supplements. I’ve meditated. I’ve prayed and begged for mercy (still do). Yet I’m still here with the same unbearable pain… tack on some anxiety and depression as a result too, of course. They seem to go hand-in-hand.

Why is that? *sigh*

“Chronic” represents the many tears I’ve shed that no one else sees. It epitomizes the isolation I feel at times. It also characterizes the guilt I’ve observed on my loved ones’ faces knowing there’s nothing they can do to ease my suffering.

I clench onto an ounce of hope because I refuse to let “chronic” take that away from me.

Hope for a cure?

Hope for a miracle?

Hope for better medical treatment options?

I don’t know what kind of “hope” I’m clinging onto.  Maybe it’s “all of the above.”

“Chronic” symbolizes not knowing what kind of day I’m going to face. I’d happily settle for stable “OK” days because bad days are beyond dreadful. They’re physically draining and emotionally devastating. A long, ruthless day of my body screaming inside really takes its toll on me mentally… only to repeat the same hideous cycle all over again the next day.

Holding a commitment to anyone or anything is like trying to breathe through a straw — a major challenge. As a result, some relationships and opportunities have sadly disappeared from my life.
“Chronic” signifies that a friend or family member has unintentionally hurt my feelings because they don’t understand what prolonged illness is. I don’t want to hear: “Are you feeling better now?” … or…  “You look great! You must be feeling good now.”

While I understand their intentions are kind, those phrases make it sound as if my condition is something my body will eventually fight off. “Chronic” isn’t the common cold or a light case of the flu bug. I can’t rest, take some medicine, and suddenly I’m “feeling better now.” It’s unlikely my health will miraculously be restored given the history, statistics, trials, and blogs I’ve read, and I’ve finally accepted that horrifying reality.

Try to envision yourself feeling pained and sleep-deprived yet fighting in a gruesome battle –

Every. Single. Day. Of. Your. Life.

Imagine that battle evolving into a raging war that you can never win against yourself… It just stays that way forever… That is what “chronic” feels like.

It’s a difficult journey but I still manage to enjoy my small victories and happy moments. My loved ones might understand me better if they educated themselves a bit on my illness. In exchange, it would help me in not feeling so alone. It’s OK to ask, “Could you please help me understand your condition and what I can do to help?”

That would mean the world to me.

I may or may not reveal the wholehearted devastation I’m truly feeling over my health; however, my response would be kind and welcoming for further conversation.

I’ve come to grips with the fact I will never be the person I once was before chronic illness became a part of my life but that doesn’t mean I’m not trying to be the best person I can be. I just need a little encouragement, understanding, love and laughter along the way.

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Lead photo by Thinkstock Images

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The 'Hidden Victims' of My Rare Illness

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Kimberly and her husband, Rob
Kimberly and her husband, Rob

Nobody is prepared to be diagnosed with a rare illness. It almost seems like one moment, life is normal, and then everything is ripped away. Life is never the same again. Between the unanswered questions, the repeated trips to the doctors and the illness, the person seems to wander aimlessly along. I remember feeling angry and sad at the life I once had and now had lost. I felt helpless at not being able to control what was happening to me. I also felt like a huge burden to those around me as this disease continued to ravage my body and left me, at times, incapacitated.

During it all, however, I was completely oblivious to the effects it was having on my family. When I developed this illness, I knew they were devastated by it. They hated seeing me so ill. I just had no idea what turmoil they were enduring daily. It wasn’t until recently that I came to realize the family members are hidden victims of people diagnosed with rare diseases like erythromelalgia.

Kimberly and her daughter, Taylor
Kimberly and her daughter, Taylor

During a particular bad episode recently, one that sent me to the hospital, my husband paced back and forth in front of me. He looked at me with loss in his eyes. It was the first time I realized that he felt completely and totally helpless. For him, this was devastating. He wanted to help me, wanted to make it all stop…but he couldn’t. This broke his heart. And at that very moment, during all my pain, I watched it happen. A lot of people who struggle with these types of diseases also struggle with guilt. So do the families.

I reassured him that just being there to support me meant everything in the world, even if he couldn’t make the pain stop. I think sometimes we forget the sacrifices our families make for us as we become so consumed in our pain. My husband often tells me he would trade places with me if he could to take away my pain.

mother and son at a football game
Kimberly and her son, Reed

I realize now that my family aches for me and my suffering. I tell them all the time that just being there for me is the greatest gift they could possibly give to me. My daughter and son often will sit with me during flares, so I don’t have to endure them alone. I thank them so much for being so empathetic. I know, deep down, how difficult it must be to watch me go through this. I am blessed to have such a caring and supportive family. Just as our families help to take care of us, we must take care of them emotionally as well. They are the hidden victims of these terrible diseases and often their voices are kept silent. Without my family’s love and support, I personally would not be able to endure the trials and tribulations I am put through daily. For them I am eternally grateful.

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When One of My Students Noticed I Was Having a Flare-Up

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As someone with a rare disease such as erythromelalgia, you sometimes become consumed with the misery of the pain. I’m a high school teacher and I am still trying to work full-time, which can be very challenging. I am so determined not to let this disease beat me, but there are days. Oh, there are days that I just want to crawl under my desk and cry. I wear a mask and I wear it well. Those who really know me know when I am sick. They say they can see it in my eyes. Apparently, they lose their bright luster.

I still remember one day when I was determined to go to work despite feeling my worst. My students were presenting their Independent Studies and there was no way I could possibly be away. I knew just how hard they had worked on them. If I did not show up, I would let them down and I was not about to do that. Of course, my husband thought I was crazy. “You’re too sick for this. You should be staying home,” he argued. “You just don’t understand,” I told him. “My students are expecting me to be there. I will work through this.”

teacher smiles with former student and two dogs
Me, my former student Sara and her famous Super Collies, Hero and Marvel

Now, my flares were relentless and I felt like I was being battered throughout the day. About halfway through my day, one student made eye contact with me and I knew she could see past my mask. She wandered over to my desk and asked me if I was OK. I looked up at her and smiled. Then she asked again, “No Miss, really. Are you OK?” At this point, she reached out and tapped my hand. It was such a human moment for me that it brought tears to my eyes. She dropped a note on my desk that read, “You’re the best teacher ever. Even when you are at your lowest, you are always here for your students. Don’t think we don’t notice.” She smiled at me and said, “If you need anything, just let us know. We’re here for you, too.”

There is a profound reason why I chose this profession. It is not for a paycheck. When you make a connection like this with your students, it stays with you. It was such a teachable moment for me: a moment of empathy that has stayed with me over the years. I have never forgotten that moment of kindness and it has given me the will to fight this disease for my students. I love what I do and I wouldn’t change it for the world.

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What I Want Doctors to Know as Someone With Erythromelalgia

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I am, by nature, an upbeat person — that is, when my disease isn’t trying to drive me into the ground. I teach high school (yes, I still teach despite my illness) and it is demanding at times. I love my job and I swear that it is what keeps me young. I’m not old, by any means, but it keeps me on my game. Sometimes, though, my disease takes me out of the game, sits me on the bench and, like a defeated child, I am forced to sit on the sidelines. It is devastating for me. Right now, I am on the sidelines and I feel a bit broken.

Not being able to teach is tantamount to torture for me and this disease seems to know it. I have been sick for the past few months and it seems like it is literally feeding off it. I live in Northern Ontario and we do not have any specialists that focus on erythromelalgia. So, I must rely on my family doctor to do his best to keep it in check. I have traveled across Canada to see another doctor, but nothing really came of that. I am seeing a neurologist once a year, but even then, it is just to check in to ensure my meds are still working.

The horror story begins when I must make the dreaded trip to the emergency department of our local hospital. Unfortunately, I get sick often and the doctors are unfamiliar with my illness due to its rarity. The issue usually begins at the check-in window when I must explain to the nurse my medical condition and try to spell it for her. The looks of confusion continue, it seems, forever. I have started carrying around the information manual put out by The Erythromelalgia Association, so I could hand it off to medical personnel. It has made it a bit easier.

There are a few things I think are important for doctors to know:

1. If I must show up at the emergency department of a hospital, I am desperate. More than likely, I am in excruciating pain. Please do not assume I am a frequent flier and dismiss me. I wear a Medic Alert bracelet for a reason. My condition is a legitimate one and it requires your attention and concern.

2. Due to my condition, my veins do not get along with needles. I can almost guarantee you will blow the first vein you attempt to put an IV into. Please listen to my concerns. I know my condition well. I have been dealing with it for a long time and I know how my body reacts. I am more than likely tired, frustrated and a tad bit scared. Please be compassionate with me.

3. If I bring information in, please take the time to look at it. I know you are busy, but I also know that most doctors are unfamiliar with my disease. I am trying to help with my treatment as best as I can.

Most doctors are wonderful in their overall treatment. The problem is that they are not educated about this disease and therefore do not know how to properly treat it. My hope for the future is that we develop better medications and treatments so that others do not have to suffer in the same way we do now. For the time being, as I continue to sit on the sideline, anxiously waiting to get back into the game, I remind you to find solace in the little things. Read a good book, continue to converse with support groups online…whatever makes your heart happy. In the end, that is what truly matters. Keep fighting.

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Image via Thinkstock.

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