I Will Not Let Erythromelalgia Control My Life
By Kathy Duke Ritchie
“While erythromelalgia is debilitating, I have learned to live with it!”
I advocate for erythromelalgia
A member of The EM Warriors Network
Being born with mixed connective tissue disease (MCTD) and lupus (SLE), I have lived with chronic pain all my life. Nothing, however, could have prepared me for the agony of erythromelalgia (EM) syndrome.
Unbelievably, I am only just diagnosed – yet I have suffered from red, burning extremities for many years. I experienced my first episodic flare-up as a teenager. My feet would become hot and turn red, but it was more a discomfort than actual pain. For over 15 years, I believed that the symptoms were a normal reaction to warm weather, exercise and standing for too long. It was only when I experienced a flare-up during a routine doctor appointment that I found myself suddenly diagnosed as having Raynaud’s disease.
It was not until my 30s, when my flares became more frequent and more
intense, that I sought medical attention. I told my doctor how – during the flare-ups – my hands and feet would throb, swell and my skin would change from a bright red to dusky purple. The pain was indescribable; it felt like I had second-degree burns. My doctor very unsympathetically brushed me off and retorted that it was common for people with Raynaud’s to experience severe pain.
It was not until my flaring became continuous and I began to receive derogatory comments about the way I looked that I began to question whether I really had Raynaud’s at all. Deciding to search the internet for help, I typed “burning red-hot hands and feet” into Google. I was amazed when the search brought back The EM Warriors. I quickly joined their website and was shocked to discover that my symptoms were the same as those of other members; it was then that I realized I had erythromelalgia! After downloading their leaflet on EM and some research, I took it to show my rheumatologist. Like most doctors, she had never heard of erythromelalgia, let alone seen a patient with it, and she promptly dismissed any suggestion that I might have this rare neurovascular condition.
For several years, I went from doctor to doctor, searching for a diagnosis, but time after time my hopes were dashed. When I finally found a rheumatologist reportedly treating an EM patient in Atlanta, I excitedly made an appointment to see him. Despite claiming to be familiar with EM, he clearly was not. I almost laughed when he informed me I was far too young to have erythromelalgia. During a very emotionally charged consultation, I told him I was not asking him to diagnose me, I was asking him to treat me; I already knew I had erythromelalgia.
I never went back to that rheumatologist or to any of the other doctors who had dismissed me over the years. While I am diagnosed (at last!), I have never been able to locate a doctor in my state familiar with EM. Because of this, I have not had the opportunity to try any of the first-line medications commonly given to people with EM in the hope that one helps. I only take prednisone (for lupus) and aspirin (for EM). I get annoyed when doctors watch me flare with fascination to then tell me they cannot actually help me. My primary care doctor has even asked if she could take me for a “show and tell” at her next medical seminar (I laugh but it is not funny!).
Since I joined The EM Warriors website I have learned loads about EM. I never dreamt there would be any support sites out there and so, for nearly 30 years, I have been struggling and discovering stuff on my own – the hard way! One of the things The EM Warriors teach is the importance of identifying triggers. I found out that certain fabrics affect me: rayon, silk, nylon and polyester blends. As I have to wear soft cotton garments, I was excited to see the details of stores that sell pain-free clothing and shoes and cooling products amongst the website’s resources.
While heat intolerance is the hallmark of erythromelalgia, some patients, like me, flare in extremely cold temperatures too; this makes life even more difficult. I also react to changes in barometric pressure, especially humidity. Performing normal day-to-day activities will trigger a flare: showering, exercising, cleaning and cooking, the exertion of walking and even the pressure of standing. At one point, I was convinced I had developed an allergy to alcohol because after a few sips of wine my feet would swell and burn. I have since learned that excessive vasodilation can cause a flare and that stimulants such as coffee and alcohol can be triggers. Some people with EM have to be careful about what they eat too, especially spicy foods and those with MSG additives.
I hate everything about erythromelalgia. I especially detest how my hands resemble lobster claws and become so swollen that I have to wear my wedding and engagement rings one size larger. Wintertime is especially hard for me because of central heating, hot air ventilators, wearing long-sleeved shirts, coats and closed toed shoes. I am going to flare at 65 degrees, regardless. My poor feet are covered in lesions and blisters from wearing socks and closed-toe shoes this year, which has made it incredibly difficult to walk.
The summertime is actually not much better. I used to love being outside but now I flare within minutes, sometimes I flare all day! Going outside when the temperature is lower than the inside makes me flare. I could be outside in 65 degrees planting flowers and as long as I’m not wearing gloves and have my flip flops on, I won’t flare, unless I’m really exerting myself. If I go outdoors from an air-conditioned house and experience a drastic temperature change, I will flare, regardless. Planning social gatherings is something I no longer look forward to. Christmas parties, weddings, birthday events, etc. are not fun, as I know I am going to have a massive flare-up; it is embarrassing, making it doubly painful.
I despise how EM has affected my relationships with my friends and how it has affected social events and outdoor activities. Horses are my passion and so most of my friends are equestrians, but I ended up having to sell my beautiful horses, as I am unable to ride anymore due to the physical exertion and the terrible friction from riding.
I am blessed to be very happily married with two children and two stepchildren but it makes me sad knowing how much my erythromelalgia affects my loved ones and how much my family worries about me. I am greatly concerned that my children may inherit EM too. For example, my youngest daughter’s ears have flared since she was about 7 years old. Although she does not currently have pain, she does experience mild flare-ups (hands, legs and feet) with hot water and exercise. My doctor has just recently referred me for genetic counseling and testing. I would feel a lot easier knowing whether she has erythromelalgia, especially whether she has mutations in the SCN9A gene.
I thought I was all alone with this damn wicked condition so I was thrilled to find The EM Warriors and I am without words for all the incredible support and help I receive. I never would have known what was causing me to flare so badly at night if it was not for their online advisors. Apparently, my vitamin regimen was one of the main reasons I was finding it hard to sleep! This may sound strange, but I was super excited to find their website and found great comfort in meeting others who shared my struggles. In their community forum people from all over the world post and comment about triggers, coping methods, doctors, symptoms, treatments and the things that help them control their flares better. Receiving words of encouragement is the best part of being with the network. Knowing I am not alone in dealing with EM has really brightened my hopes for the future.
My best advice for others with erythromelalgia is do not give up. Try to find and enjoy the smallest pleasures in life and get to know your triggers. Identifying and minimizing your triggers will help you cope better with flare-ups but nothing will prevent flares from happening altogether. Keep a food journal and daily log of the circumstances and time of day when you flare. Avoid hot showers, alcohol, sitting or standing too long with your legs dangling and certain foods. Elevate your feet when flaring and cool burning hands and feet under running cold water – never soak as that can cause ulcers and nerve damage!
My hope and prayer for the future is that a cure will be found. Awareness is the key! My husband is in the medical field and he raises EM awareness with nurses and doctors and posts leaflets on erythromelalgia in the staffroom and on the bulletin boards. I do what I can to spread the word too and get heavily involved in The EM Warriors’ awareness campaigns. I even won myself an awesome Chillow pillow in their free draw in May, which is erythromelalgia month and have recorded a video clip for their new awareness drive called “Spotlight on Erythromelalgia.” I am helping them with their 2018 fundraising campaign too, the “Red Hand Challenge,” to support erythromelalgia research.
Erythromelalgia has always affected my hands and feet but recently my ears and knees have also begun to flare. I am quite a tough cookie and refuse to let EM control my life or stop me from doing what I want to do – within reason. I have not filed for disability since I am still able to work part-time from home and act as the full-time caregiver for my mother who has Lewy body dementia, which causes a progressive decline in mental abilities. While erythromelalgia is debilitating and disabling, the burning pain has been a part of my life for so long that there are times that, as bizarre as it sounds, I do not even notice I am flaring.
Living with erythromelalgia is hard, very hard, but you have to remain positive. When people ask me how I cope with the excruciating pain and manage to live with erythromelalgia, I tell them about my faith. There is not anything that God is not capable of doing. He gives me the strength and willpower to rise above the challenges I face every day. When it comes to erythromelalgia, I am so thankful I can walk. I may not be able to walk far, but I can still walk!
Who are The EM Warriors?
The EM Warriors: Erythromelalgia Support and Information Network are a dynamic international non-profit association dedicated to EM-powering, educating and encouraging all those living with or affected by erythromelalgia and its comorbidities.
Current awareness campaigns and fundraisers by The EM Warriors:
1. Join “I Am The Face of Erythromelalgia.”
2. Take part in the Spotlight video on erythromelalgia.
Please donate to our “Stop the Burn” fund and help us sponsor much needed research into erythromelalgia.
For more information on Lewy body dementia.
Do you or a loved one think you may have erythromelalgia? Would you like more information about the condition or do you have EM-related support needs?
We also have a crisis line.
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